Since I’ve been sick this week I haven’t been able to keep my mind occupied the way I normally can. So I surrounded myself with her. I pulled her favorite toys and clothes close to me, breathing her in. I looked at thousands of pictures of her face. And I watched videos of her. I miss her voice so much. I let my ears take in the sweet sound of her so I can imagine all the things she’d be saying now.
I watched every video of her I have. The early videos surprised me by being the hardest to watch. The footage of her in the NICU makes my heart pound and my stomach drop – and it’s all footage of her when she’s doing well. But the SOUNDS. You can hear other babies crying, medical staff bustling, alarms going off…the same alarms that were going off when she was crashing in the PICU. She’s so cute in this video, six weeks old and newly off the ventilator, but all I can hear are the alarms.
if you can’t see the video above, click here.
Earlier this week I read an article in the New York Times about the lasting effects NICU trauma can have on parents. Researchers from Stanford and Duke Universities followed parents to see how many of them ended up with Post Traumatic Stress Disorder. The only thing that shocks me is that every single parent DIDN’T end up with it. The VAST majority, however, DID. Every quote from every parent interviewed for the article could have been said by Mike or me, or any of our other friends who endured NICU life.
The article points out that NICU parents suffer multiple traumas – an early or rough birth, witnessing their infant and other infants go through intense medical procedures, and constantly hearing terrible news. Madeline’s premature birth by emergency c-section was terrible, and it wasn’t even unexpected for us the way it is for many parents. We watched Maddie undergo several procedures (especially Mike in the first few hours before I checked out of my hospital), and I saw other babies have just AWFUL things. I saw other babies die. We were told many, many times that Madeline would die. This isn’t even taking into account what we saw and experienced in the PICU on April 7th.
Later, the article talks about how many parents aren’t told about the signs and symptoms of PTSD. In the NICU, the available medical professionals are very focused on helping the baby – as they should be. Some hospitals have social workers or other programs in place to support the families, but far too many do not.Hoepfully Friends of Maddie will one day be able to help fill this void. But in the meantime, many parents are left on their own to deal with their own experiences. I know I had a hard time talking about things I’d experienced, because I didn’t want to seem ungrateful that my daughter had made it out alive. If I hadn’t had my blog to write out my feelings, I think I would have been a very different parent to Madeline.
Madeline received all her care through the UCLA health system. She was in the NICU on one campus, and the PICU on another campus. Because UCLA is a teaching hospital, their faculty has continuing education – doctors, nurses, residents, students, etc. I have been asked to participate in an upcoming symposium on UCLA’s Pediatric Palliative Care Program for nurses and physicians to better care for children who may or may not survive. I will be telling Maddie’s story, and also talking about what nurses and doctors can do to make things easier for the parents AND the families.
I’m hugely honored at the opportunity to help doctors and nurses, but I am overwhelmed by the responsibility. I only know of my own family’s experiences, but I will be talking on behalf of “the many.” This is where I turn to all of you. If you had a child in the NICU or PICU or in long-term care, or maybe your niece or nephew was, or you know someone who was, etc – what do you wish had been easier for you? What would you have changed? What did you LOVE? Leave me a comment or a link to where you may have written about your experiences (make sure you use a valid email address).
This is a rare chance where we, the families of critically ill children, can bring change that will help make the lives of countless other families easier.
You guys amaze me. My daughter was born at 29 weeks, I don’t have a blog, but would be happy to share my experience with you if you’d like. Just let me know.
Oh…and Maddie looks so cute in that video!! I don’t hear any alarms..just the other baby crying and Maddie trying her best with her soothie!
Just passed this post along to my Preemie support group online.
You’re truly amazing… You will, of course, rock. You will make a change. You already have – in so many ways.
.-= Kelly´s last blog ..Cyclone Alyssa part 2 =-.
Heather, you and Mike and Maddie have already changed more lives than you can even begin to imagine. What you’ve started with Friends of Maddie, and what you’ll be doing at this symposium is so incredibly important.
My friend’s three children were all born before 32 weeks. The most difficult, she said, was when she was a military spouse stationed in Alaska, away from family and friends. She just felt really alone. I think having a support group at the hospital, or a resource like Friends of Maddie would have eased the experience a little bit…knowing she had somewhere to turn to when she didn’t know what to do, or even what to ask.
Hugs to you
.-= Noelle´s last blog ..Conversations with a 4 year-old: Cinderella =-.
Heather my experience was very different to this, in that we avoided the NICU having lost our daughter in utero five days past her due date, but through the babyloss blogging community I know many who had painful NICU stays, so I will forward this post on to them.
.-= Sally´s last blog ..The bitter and the sweet of it all =-.
catherine Lucas says:
So utterly shitty that they did not give you cesarian… What is up with those people?????
.-= catherine Lucas´s last blog ..Cloudy… =-.
The care Erin received at the RBWH NICU was excellent. I couldn’t have asked for better doctors and nurses, but there were still those days that will always be etched in my memory. Most of those break my heart and make me want to vomit all at the same time.
I’m so glad to see so many NICU mums working towards making the experience better. I’m very proud of you, you do my heart good.
.-= Bec´s last blog ..Archives: Warning: This mother may possess Jedi powers =-.
Support groups!!! Our NICU didn’t have anything like that, where the parents of the babies could connect and support each other. Maybe it could be led by someone who had previously been through the NICU experience. I felt so alone during Colton’s 6 month stay.
I was premature. 2lbs 8oz. That’s pretty good compared to what I’ve seen born these days. I had one working lung. I was in and out of the hospital till I was 8 and still have asthma. Its not as bad now though. I want to be a NICU nurse. Hopefully in the next few years. I have had a few friends who have lost babies after struggles in the NICU. I can’t say what they would have needed to be done or offered differently. But since you are speaking UCLA and can gather such a wide support system, I was thinking that there should be more training in this field. I originally wanted to be a neonatalogist. This takes 14 years and they do get specialized training on neonates through their residency. However nurses are more hands on with the patients. Do you know how hard it is to find programs that have longer rotations in the NICU? Not many schools offer pediatric nurse residency programs where a student nurse could spend 16weeks focusing on one area like the NICU. I think if more hospitals offered that, that maybe nurses would be more attune to what families need while going through such an ordeal. I think they depend on patient advocates or social services to deal with needs that can be addressed by the staff actually handling the care. Maybe they can expand their program or add some certification classes for their NICU and PICU staff.
catherine lucas says:
I am very glad that Maddie was the start for this. Your own awfull experiences will help other parents and preemies. It is sad that so many parents end up with PTSD, it should not be. It is heavily under estimated of what hospitals can mean to people both staying there or have a loved one staying there. How is it that a life saving place can wreck your mental health forever after, if you go through serious procedures…Wonderful Heather that you take on the glove!!!!
.-= catherine lucas´s last blog ..Cloudy… =-.
Ashley Hast says:
Our last child, Duke, was born this year in February. He’s doing great now, but the first few weeks were rough. He was born at 35 weeks, and was fortunate enough to only have to stay in the NICU for about a week. A week too long, in my opinion, but a week nonetheless. He was intubated the 2nd day after his birth.
The actual NICU staff was awesome. We loved our neonatologist. One thing I’d change is how they approached me with the situation. Because of his age, I knew he’d go straight to the NICU, just to have a checkup. They said he was low on oxygen, but he’d probably perk up after a while. My pediatrician came through to check on Duke, and all was well. She went on vacation the next day, which was fine, since I completely trusted the Neonatologist.
I’d only first saw Duke the morning of the 2nd day. Later in the afternoon, a Dr. came by my room. He was very spastic, constantly squatting, sniffing, standing, pacing, scratching….he just acted like a crackhead to me. Anyhow, he used lots of large words, and then said, “If we don’t intubate him, he will die! They’re doing it as we speak! This is a very rough time for him, and we’re not sure what will happen.” I began sobbing loudly, and the dumb ass just got up and walked out! I didnt even KNOW this man…it was the first time I’d ever even MET him.
About an hour later the Neonatologist came in, and found me a mess (I’d been on bedrest at the hospital for 2 weeks before Duke’s birth, and then had a c-section). He was almost shocked that I was so irate, and then gently and professionally explained Duke’s situation. He was NOT on the brink of death.
Dr. VADASZ (sounds like Vad-ass…a.k.a. Captain Insano) decided to take a detour while doing rounds at the hospital that day, and happened into the NICU. He asked the Neonatologist about Duke, and he gave him information I suppose. Then Captain Insano took the information and ran with it. He didn’t even have PERMISSION to come to my room and deliver such news, much less what he said. I’ve been disgusted by this man ever since. He works at a local clinic, and I’ve told everyone within earshot (or via email, FB, blog) to NEVER use this man as a doctor. The neonatologist was shocked that Dr. Vadasz ever even came to my room and said such things.
The NICU group (nurses, respiratory tech, doctors, social workers, etc.) worked together as a TEAM…but somehow this weasel worked his way in there. Duke did need to be intubated it, but it was to give him surfactin. Apparently the only way to give a dose ot this is by intubating the baby. He was intubated for a few days, but I firmly believe the medicine helped him recover much faster than he would have. I’d just like to make sure in the future that the TEAM works together as closely as possible, and unless absolutely necessary, not give other information to doctors passing through, in the case that they’re mentally unstable, or just enjoy ruining people’s day. I’ve got pictures and some of Duke’s story on my blog…although most of it is about my earning every gray/purple hair through what my other children put me through.
I’m sorry this is SO long-winded. It’s late and I can’t sleep. I’ve been reading you for *forever*, and I pray for you every day. I’m so glad you were blessed with Maddie, and Baby Binky on the way. I also feel that many others who haven’t already been blessed by Maddie & her story, will soon be after reading you (or hearing you speak at an event.).
My experiences int he NICU were pretty lonely. There were times when the nurses were great but there was little support in general. William’s birth and ultimate death all happened while in the NICU and there was alot of blame directed towards me. I would change that if I could. I had terrible PTSD after he died, sometimes I still have nightmares and sometimes I still have weird panic attacks when I drive along a certain part of the freeway.
The first time I went into the NICU after Ivy and Noah were born, I felt as though I was suffocating and there was a time there where I just couldn’t go back in. Not for a week. A whole week of neglecting my babies because I felt so bad. That is a really hard thing to admit. Perhaps if there had been more support leading up to their birth, things might have been different. The midwives kept asking me to go up and deal with it but I couldn’t. I just could not physically get up and go. Everything inside me screamed NO!
TO this day, I am sure our first few months were shaky because of the PTSD.
I’ve got lots of posts but I’m in Australia.
Here is my fave post on prematurity; http://www.mythreeringcircus.com/2009/07/remember/
The nurses we had were all so wonderful. When the girls wouldn’t eat readily, they would spend so much time trying to encourage them to take the feeds. They knew that they had to eat to grow and leave and they spent so much more time than they “had” helping to push them the extra steps.
The worst? The doctor. She needs to remember that yes, her responsibility is the child, but to treat parents like parents. With my 2nd, she talked down to me like it was my 1st time in the NICU. She also dismissed any concern or question I had, which I asked on the knowledge of my 1st daughter’s stay. Her famous line “each child is different. just because 1 did it, doesn’t mean the other will. Well, SHE was wrong. My 1st had a milk allergy and despite her insistence, my 2nd did as well! Had she listened to ME, my 2nd would have come home sooner and not suffered the pains of milk when she was allergic! I had to call my own Ped, who then called and fought with the NICU dr to get her on hypoallergenic formula. She also let the hospital know that I was having issues with the Dr in the NICU. I got a call from hospital just checking up on my to make sure everything was OK! LOL
MY 1st DD also suffered in the NICU for 31 days without relief from the allergy since the Dr doesn’t “believe” in them.
The Dr, kept telling me she was not ready to leave until she gained even more weight (she was 6lbs at this point). Finally, I told a nurse that I was going to pull her out AMA because I disagreed with the beast. She talked to me calmly and assured me SHE agreed with me. She also spoke with the doctor, who faced with having to admit to the hosptial that she was again being stubborn and wrong, changed her tune and said DD2 was perfectly ready to go home!
I’m sure I’m banished from that NICU by her now! I made FAR to many waves for her liking!
Krisa Kolbe says:
My 6 year old contracted Sepsis even though I was on IV antibiotic and was hospitalized for 10 days when she was born. No one told me what was going on. It would have been nice to have some sort of liason to work with the diff doctors to better inform us. Most of those doctors are so busy running in and out, it was hard to get any answers and the nurses would say NOTHING. It would have been great to have a room to nurse also. Good luck..
Amelia Sprout says:
I only had my daughter stay in the hospital for an extra day, so I can only begin to imagine what others go through. That and an induction for complications (pre-e) still left me a little messed up. You spend a lot of time imagining what it is like to go home with your baby, and it would really help if even in minor things like mine they didn’t make it sound so damn routine for the baby to have to stay longer. I know it wasn’t bad, but for me, after not getting to have any of the birth experience I had wanted, telling me I have to leave but my baby has to stay crushed me. Thinking about it still leaves me a little sick to my stomach.
You continue to amaze me with how much energy you have to give back. You really are a hero heather. I hope you know that.
.-= Amelia Sprout´s last blog ..I will always be a fat girl. =-.
I didn’t have a preemie baby — However, I wanted to add that the hospital I had my daughter at straight out told us if she would have to stay in the NICU we were allowed to stay and sleep in a room at the hospital free of charge. There is no going home without a baby. More hospitals should obviously do this.
.-= Lisa´s last blog ..Lisa’s Contest Roundup – Week of August 31 =-.
Gina Brown says:
We spent a week in NICU for our premature daughter, born at 34 weeks. Your post really nailed it on the traumatic births, unknowing times etc.
I have two thoughts, one our hospital didn’t contact our pediatrician since Cassie was in the NICU and that caused disconnects later. I know he couldn’t treat her in there but it would have been nice for him to know she existed and was a preemie. Second Is regarding getting the best info about your child. I noticed as the dr’s did their rounds in the am and pm they would stop as a group outside each room, close the door and talk about the baby in that room. I opened my door right back up and took in every word they said about my daughter, this made me feel more in control.
Oh also, my hospital when she was taken to NICU had a Nurse snap 3 pictures of her, downloaded and printed them and had then to me in my room in less than 1 hour. It was a really great way to not feel so disconnected from her in that first few hours. I suggest all NICU’s purchase a Digital Camera and Photo Printer.
O dear sweet Heather, I have such an ache in heart and tears falling down my face when I read how you have spent so much time this week looking at pictures and watching videos of your dear precious Maddie. My heart breaks for you, dear sweet Heather, that she is no longer where she should be in your arms.
Heather, I am so in awe of you, you are such an amazing lady, always so willing to share your story and your experiences in the hope that they will help others. You have so much to offer and are always so willing to give, you are an inspiration to us all. Its such an honour to read your posts and to read about what you are doing.
I spent time in hospital with my little girl when she was 3 months old and it was a very lonely and frightening experience, especially as our families were back in the UK and we were dealing with the medical staff in another language. Of course our experience was nothing as dramatic was what you and Mike experienced with Maddie so once again I am in awe of the courage and strength you showed during these times.
Dear sweet Heather, you have already made such a difference and you continue to make a difference every, single day, just as the legacy of your precious World Famous Maddie does.
Wishing you a peaceful week-end, dear Heather, continue to look after yourself and your Binky Bean.
your friend, Erica in Luxembourg
Hi, Heather! I am actually going to see a therapist tomorrow for PTSD. I have twin girls and Sophie’s water broke at 21 weeks. It will be a year ago that happened on September 30th and I am having a very, very hard time. That day was so traumatic, as were the 7 weeks on bed rest, and then the 12 weeks in the NICU. I wish that the nurses or doctors in the NICU had told me to expect the PTSD and checked in on me more after the girls went home. I would be glad to talk to you about my experience. My e-mail is included. If you want to read about my experience you can go to http://www.carepages.com/carepages/marattotwins. I invite you to use anything on that site in your presentation.
That article is so right on. I still think about G’s time in the NICU and how hard it all was. I hear the sounds, think of the other babies. I don’t think I’ll ever get over the day she was born. It was a wonderful day and also the worst day of my life.
You are just so strong, it amazes me. You should be damn proud of everything you are doing to make the world a better place – one baby at a time.
.-= Sarah´s last blog ..Senator Ted Kennedy =-.
Heather – what an an opportunity!
I’m hoping that I get some of my thoughts together that make some sort of sense.
Let’s start with how they tell a family that there is something so wrong with their pregnancy that the safest place to be is in the hospital. For me, I was just told, “Hey, go sit outside we are going to get you a room”. I was 28 weeks pregnant – I thought I was just going to the doctor – what the FUCK just happened????? Sitting there alone waiting on someone to come and get me to take me L&D was terrifying. Once there having nurses run in and start giving you steroid shots and hooking you up to monitors was frightening. I just think it could be different – there should be some sort of OB on a floor at all times and when this happens unless there is an emergency that no other doctor is attending to then honestly, they should come in and talk to you (at LEAST to say hey, your doctor will be here no later than X time but here’s what we are doing and why) so that you aren’t laying there wondering if someone is coming in to talk or deliver you.
NICU consults – we had to demand one prior to the birth of Anna Grace. I wanted one so I could understand what was happening – what was likely to happen 28 weeks, 30 weeks, etc. I needed for that NICU doc to come back as I gestated and got further along to help update me. Don’t misunderstand my peri’s did a great job of telling me that, after 30 weeks we would all be ‘fine’ but what the hell did ‘fine’ mean?????
First visit to the NICU. I don’t know how you get this better but please, someone have an idea because this was one of the most gut wrenching experiences (as you know). We weren’t encouraged to do kangaroo care – I still don’t know ‘why’ other than the nurses that Anna Grace had didn’t like parents to do it (an actual quote) – the underlying statement – we got in their way. Personally, I don’t care if it gets in the hospital’s way or not it should be encouraged as long as the baby can handle it if desired. So many parents only have those memories – not being encouraged to snuggle, cuddle while their child is alive should NEVER happen.
We had a parent advocate that was at our hospital – that person should have made many, many more rounds – the NICU is isolating. You are forced to sit behind a curtain because of HIPPA and most of the time watch, watch, watch and listen, listen, listen. I remember that my head was read to EXPLODE when I left the NICU. And as a side note – nurses should be told to get to the dinging bells as quick at they can to turn them off – ESPECIALLY if it’s no big deal because you know, most of us don’t know if it is or not.
Doctors should just be honest with a patient and their family – I know that is a pet peeve of yours too. It doesn’t do any of us any good to have hope when there really isn’t any to have. Although Anna Grace came through her experience relatively easy I watched many other families not be so lucky. I even watched one set of doctors change out shifts while a little boy was passing away – I have so much to say about that it would boggle the mind but I think you probably get where I am going so let’s just say THAT should never happen.
One suggestion that might sound kind of silly is that honestly, the hospital needs to have some sort of small food and drink station because some families cannot leave the floor – not even for one minute. No mom or dad or grandparent should be forced to leave the entire floor to get something to eat or drink if their child is in critical care. Another reason for this is that women who are post op from a section who are terrifed probably aren’t thinking of eating and drinking which they urgently NEED to get better and to help with lactation.
Just a few of my ideas. Thank you Heather for letting me get some of my thoughts out on this subject.
.-= Amanda´s last blog ..The Door – It’s Always Open =-.
I agree with the food/drink idea. I got miserably sick after not eating for days on end. It’s hard to recover from birth(I had a c-section) and not eat or drink. I know as a parent you should be able to take care of yourself, but the NICU throws all of your rational thinking out the window!
This holds true for the children’s floor also. When my 5 year old got sick at Disney, I didn’t eat for 2 days because I couldn’t leave her side.
.-= Lisa´s last blog ..Lisa’s Contest Roundup – Week of August 31 =-.
Kristine Sorochinsky says:
My little girl was in the PICU after contracting Meningitis. I was 18 days post c-section with complications and couldn’t stay beside her bed all night. I would sleep in a little room down the hall and would ask her night nurse to call me (there were phones) if ANYTHING happened during the night. We had 2 nurses that took it upon themselves to override my request and “let me sleep”. I would walk in, in the morning and she would have new tubes and procedures done during the night. I was VERY upset and spoke to the nurse manager. They were far too defensive.
Don’t get me wrong, we had some awesome nurses and doctors, but when we did have a problem, no one listened. They were incredibly defensive and far too concerned about covering for each other to care about what went wrong.
I have written about our experience on my blog under “Katie’s Story”.
I was also asked to speak at our children’s hospital and I’m so glad I did. Doing it again in September.
Sorry for the scatter…only had a few minutes.
.-= Kristine Sorochinsky´s last blog ..Summer Days =-.
I just read Gina’s note, and just had to comment again –
I TOTALLY agree with everything she said. Our NICU also didn’t contact our Ped, even though I asked several times. I think I would have felt better if she was in the loop. She would have at least been a familiar face for us to talk to.
We also got a picture of G right away that I kept posted in my room. She was transported to another hospital, so until I got out the day after my c/section (how much does it SUCK to ride in a car the day after a C/S!) it was all I had. I treasure that picture, even though it shows a purple gloved hand squeezing her hand as taught as possible to try to get an IV in. For 24 hours it was all I had.
Every NICU and Special Care Nursery should have a camera and printer.
.-= Sarah´s last blog ..Senator Ted Kennedy =-.
Oh, this is amazing. I did not have a NICU/PICU experience, but I did work with the trauma department of a large urban hospital that was integrating palliative care practices into their work. I can’t tell you how much your personal experience will make an impact on those in attendance. It really makes people stop and listen. Of course, the palliative care professionals are a much different bunch than your usual doctors and “get” things in a different way. They don’t have as far to go in understanding the role of medicine in supporting the emotional and spiritual side of both the person in care and their loved ones.
I think it is so important that people share their stories and experiences with clinical staff. I wish you all the best as you prepare for this.
.-= stephanie´s last blog ..Another new series of changes await us. =-.
Hi Heather – I read your blog religiously, and feel like I know you – thanks for sharing your story!
My son was born at 25 weeks. We had no indication he was coming early – I had an incredibly easy pregnancy up to that point and was continually told in my appts that everything was measuring perfectly and going well. And then I went into labor at work one Monday morning, and 6 hours later, our baby was born, weighing less than 2 pounds. We were in shock – we didn’t think we knew anyone who had a preemie (although we heard lots of preemie birth stories after he was born). We were lucky that the hospital walking distance from my office had a Grade III NICU, so that’s where we stayed. The doctors and especially the nurses were fantastic. But what it was missing was any kind of non-medical support for the parents. They gave us the business card of a psychologist, but we were way too occupied at the hospital with Charlie to even think about getting away for a normal doctor’s visit ourselves – I only wanted to be at his bedside day in, day out. But if there had been resources available AT the hospital, I would have been interested in using them. I wasn’t really interested in calling strangers, but I would have loved to have someone come by to meet us in person and talk to us (other than the chaplain, who just made me nervous b/c I connected her too closely with last rites). Also, as we got closer to taking him home, I really wanted to talk to parents of preemies that were surviving home life. I wanted to know what it was like to have to quarantine your kid, how they dealt with the heart/lung monitor, the nebulizer, visits from friends, going back to work, finding childcare, etc. After 85 days in the NICU surrounded by experts, I wanted to figure out how we were going to go it on our own. It would have been great to have someone reach out to us and share their experience.
Sorry this is long-winded. I think what you’re doing with Friends of Maddie is wonderful. I know you’ll be able to help so many people!
.-= Marie´s last blog ..Learning the Meaning of NO =-.
I completely agree with Marie’s statement about bringing the baby home. I wish I could have talked to someone. I had three friends that all had babies that were born when my son was supposed to be so we all went home around the same time (after 104 days in the hospital). They all did things with their babies and I was confined to my home with my 3 month old newborn.
Carrie M. says:
I read your post, and am so glad that little Charlie is doing so well!
On another note, that video of his touching the cord was about the funniest thing I have seen all week. SO CUTE! Drama “King” just like my toddler.
Lynn from For Love or Funny says:
Both my my girls were in NICU after birth. My first was an emergency c-section because we finally figured out she was descending hand first. Ever polite, she wanted to shake the doctor’s hand before entering the world. After 30 + hours of labor and the c-section, I was exhausted. My daughter when into NICU because of water in her lungs, and they started antibiotics to ward off pneumonia. A similar problem arose with my 2nd daughter.
While their condition wasn’t necessarily life threatening, it was still frightening. It would have been great if the hospital had a designated person (preferably a compassionate nurse) who’s sole job was to relay information, answer questions, and comfort the parents of the babies in NICU. I had so many questions at so many times during the day, that I never quite knew who to ask. We got to know the nurses on duty on various shifts, but they were extraordinarily busy with very important tasks. I couldn’t always pull them aside to seek answers.
Also, I would encourage the hospital to keep mothers with babies in NICU close to the suite if at all possible. Our first stay, I could waddle (post c-section) to NICU. Our second stay, I had to wait for an orderly to bring a wheelchair in order for me to make the long trip to NICU. Also, during our 2nd stay, I was placed in a room with a young mother who had her baby in the room with us. It grieved me terribly not to be able to be with my baby. It was so much easier the first time around, when I was rooming with a mom who also had a baby in NICU.
Thankfully, our stay in the NICU had a happy ending. Twice. I grew to love the quiet, the handwashing station, and the chime of my daughters’ blood oxygen monitors. There, in the dim, I fell in love with my babies. It was there that I also watched the nurses work tirelessly to save the lives of premature babies like your Maddie. I don’t know how I got so lucky, but I was able to bring both my girls home, hale and hearty.
On reflection, our time in the NICU deeply influenced me. I’ve always been protective (almost to the point of phobia) of my girls’ health. I’ve never talked about it with other parents who didn’t spend the first 10 days of their babies’ lives in the hospital, mostly out of fear that I will cry about it. You, however, completely understand where I’m coming from.
I pray that you and Binky won’t have to go near the NICU. And thank you, Heather, for being willing to become my voice when you talk to the people at UCLA. I can’t think of a better representative.
.-= Lynn from For Love or Funny´s last blog ..I’m holier than thou =-.
nic @mybottlesup says:
hi love, while jackson was not a premie, his godparent’s new born twins (just went home last saturday) were… i wish you the best of luck with this, and i will pass this on to them, so that they too can share their experience.
the twins were also born at a teaching hospital in north florida, and while i can’t speak for their experience, as their best friend (who has suffered from PTSD in my own way), i can attest to their trauma.
just when i think your heart can’t possibly grow any larger….
you never cease to amaze me.
(please don’t forget to take care of you…. sorry, just had to throw that in.)
.-= nic @mybottlesup´s last blog ..a town of uniforms =-.
Hi, my daughter (now almost 3) was born at 32 weeks completely unexpectedly. I agree with this article though when i realized it myself, I was shocked.
All the while my daughter was in the NICU I felt okay, strong, and knew she would make it. There was honestly never a doubt in my mind. Intuition, maybe. Survival technique, probably.
But I returned to that hospital only a year later when my brother and his wife had their son and it was the first time I had stepped foot in the door since Meghan left.
What surprised me was the smell. It hit me immediately and it’s like I’ve seen in war movies of flashbacks, where it all floods back into you at once. It was then that I realized how truly traumatized that I was. I guess I never really thought about it before.
I powered through it and went to see my brother’s son, but when I got home, I just cried. I mourned for myself, for my daughter, for how lucky we were, for all the parents and babies who weren’t as lucky and I just thanked God. I never really had my moment to do that – I was too busy taking care of a premature baby.
I am grateful and happy to say that she is a happy, healthy, perfect (albiet bratty on occasion!) toddler with no more significant issues. Last month, we were finally able to take her off the nebulizer! What a milestone. I cried.
For me, the NICU was a good experience (well, as good as it can be given the circumstances) because of the nurses. They are what made it okay. I will forever be grateful for that.
I do wish they could have made it more comfortable, but I also understand the limitations of running an efficient hospital on a budget.
Actually, the worst thing about the whole experience was my actual labor – though they recognized that my water broke, they didn’t believe I was in labor and having contractions because the “monitor” wasn’t telling them so.
It was until I said I had to push that they checked me (they refused to before that, saying I wasn’t in labor) and realized I was about to have a baby and then it was massive chaos. They are lucky I didn’t sue. Seriously. I had also been to L&D two days before that bleeding and they released me, saying nothing was wrong.
I guess no one is perfect.
I will say though, that my husband and are done having children because of this. Meghan will be our one and only. We just can’t risk putting ourselves through it again, or risk another baby having worse issues than Meghan. She was so lucky, as were we. We are just too afraid and I don’t think that will ever go away.
Our son Henry was born at 26 weeks and 2 days because of a true double knot in his cord. We were very lucky that we was having an ultrasound at the time he was in distress and that I was in the hospital on bedrest for preeclampsia. He spent 104 days in the NICU after two surgeries for NEC. We actually just celebrated the one year anniversary of bringing him home this week.
We were at one of the best hospitals in the area and felt very lucky to get one of the best nurses in the NICU as Henry’s lead nurse because of his ostomy bag-she was the expert. Overall we had a great experience.
We usually had the same nurses who knew our schedule. When I was cleared to work, I did go back to work so I could save my time for when Henry was able to come home. If we had a nurse that didn’t know us, I felt some of them were judging me for not being at the hospital 24 hours a day.
I know I suffered from PTS and post partum depression when we brought Henry home. It was a rough couple of weeks. There was a social worker assigned to the NICU but she just didn’t have the compassion to deal with the parents.
I will never forget the sounds of the NICU. Henry’s room was by the door to the NICU and everytime someone was allowed in, the door would swing open and shut. I can still hear it. We recently went back for a visit because of a follow-up appointment with the developmental team. As one of the nurses and I were chatting, her pager was going off to the sound of the alarm from one of her babies. It felt like Henry was back in the NICU. I wanted the noise to stop.
His next appointment is in Decemember and the follow up clinic is moving to the NICU. Part of me wants to go back in there with a healthy boy but the other part of me never wants to see his room again.
Hope this helps. Let me know if you need anything more. I am sure I am forgetting something.
I also had a wound vac to help heal my c-section since it had gotten infected and was not healing properly. I am curious to know if anyone else had one? Thankfully it was only for 10 days and boy does my incision look good now!
I had a wound vac after my daughter was born last year via c-section. It was one of the most horrible experiences in my life. I ended up being admitted in to the hospital for almost two weeks. It was horrid!
It was horrible. I will always the smell and the noise that thing made. At night we had to unravel the tubing and put it under the bed with a pillow on it to get any sleep!
Hi Amy –
Curious – how did your son do recovering from NEC? My son is an ex. 27 weeker and we are having trouble getting him to find a formula that works and to take volume. Not sure what is due to the nec and what isn’t. He had surgery on his NEC.
For the first six months he had breast milk mixed with Similac Advanced. After I quit producing breask milk, he had Similac Advanced. It was the formula he used in the hospital so we stuck with it. He is now 16 months (age) 13 months (adjusted) and eats just about anything we put in front of him. There is always this little part of me that is waiting for him to throw up stomach bile but (knock on wood), we have been okay since the surgery.
Patty-if you want to talk just let me know and I’ll send you my email address.
I would love to talk… Should I email you directly? Thank you!
Hi heather, I’ve followed your blog for awhile now. My daughter was born at 32 weeks by emergancy c-section after months of bed rest at home, and in the hospital. My water broke early, and was only caught because I happened to be at one of my hospital bed rest stays. Had the doctor not performed my routine morning ultrasound, I would have lost her. Needless to say, she spent some time in the NICU.
The hardest part for me while she was in the NICU, was watching other people get to take their children home. My husband is a firefighter/paramedic, and I also worked in ems for some time, so we both were ok with all of the medical stuff going on around us. But the anger and jealousy I felt towards the other mothers leaving with their babies, when mine was still being tube fed and on ventilaters is something I can’t explain.
I’m normally a very calm, understanding, and loving person. But for for the time that my Hayden was in the NICU, I was a monster. I wish that their had been someone there to talk to and vent to. I tried so hard not to let my husband see me that angry, so I ended up holding alot of it in. Had there been someone to share my thoughts with, I know I would have dealt with my feelings much better.
I loved the nurses in the NICU at Halifax in Daytona Beach where Hayden was born. I just wish that maybe they could have had a bit of training in counseling the mothers.
This is a wonderful wonderful wonderful opportunity to help out parents of NICU babies and it’s SO needed ! I live in Hamilton, Ontario, Canada. My baby boy Robert was born at 34 weeks, 5 days, a week after PPROM. There were 2 induction attempts and cervical gel applied to try to get my labour going and nothing worked at all ! He was born by c-section and was 5 pounds 13 ounces. He level III’d at McMaster University Medical Centre’s NICU for 5 days, then level II’d at St. Joseph’s for an additional 2 weeks. 19 days all in total. The 5 days at the NICU were some of the most scary days I’ve ever experienced in my life. Seeing my baby lying there with tubes coming out of home, on c-pap, and I couldnt’ hold him for 2 days, just killed me. The staff were INCREDIBLE, there aren’t enough words that can be said about them, they were so wonderful. LOVE them ! They were what I loved about the NICU. What I didn’t like was the day after I was discharged, when I came up to see him that next day, first thing they tell me is, he’s ready to level II, let’s transfer him. No advance notification, no prepping me, NOTHING. So about 2 and a half hours later, me 5 days post c-section, no car, after pumping, getting his health card and having him nurse for the first time that day, was in the back of the ambulance with him. That was a shock. I did NOT like the level II nurses or staff very much at all, they seemed so intent on getting him home, that they stepped on toes, made me feel inadequate since I didnt’ have enough milk for him. Then to top off the experience, he failed his carseat test once, a few days later he was supposed to have it again, but I had to leave early that day, so I asked what was happening, and the nurse had no clue. So at this point I was upset, crying, talking to the charge nurse. They told me to phone back in an hour to see what was happening, when I phoned he was in the middle of his carseat test and to phone again in an hour. When I phoned the idiot nurse picked up and YELLED at me for not talking to her and that she felt guily and blah blah blah, then finally gave me the news i needed to hear that he had passed. While Robert’s story certainly wasn’t as bad as others, I was left with post traumatic stress disorder from 11 days in the hospital myself when I was away from my older child Lily, and from having to leave him at the hospital. THAT was the hardest thing I’ve ever done. People don’t understand, even now if I allow myself to think of it, I get sad. I also developed panic attacks since he had a rough go afterwards, crying all day long, seeing in no particular order pediatric cardiologist, gastroenterologist, allergist, pediatrician, dermatologist and going to ER once since we thought he’d need surgery for his umbilical hernia. I HAVE to see a psychiatrist and I do, I basically demanded it since I knew I’d never get better until I talked about it. Since he was born at the age he was there was no offer of support groups or even follow-up with the NICU follow-up team. My story is good though, he is fine now, with only his pediatrician who sees him once a year now, and dermatologist who wants to see him if his eczema gets worse. We’ve been very blessed. But I CAN’T forget what happened to him, I very much WANT to forget, but I can’t it’s ingrained in me forever. When I have to go to McMaster for my various specialists, I go pass the NICU and stil get a little teary and panicky. I’ll never forget. Love and prayers to you and the family and that my story will help out this initiative as well.
Another Heather in Canada
hang in there, even in your darkest times, and know that you and mike and maddie and binky are LOVED hard and well. i still think about you all every day.
as for your NICU advice question…neither of my own two babies were born prematurely, but my sister’s only son was born at 29 weeks. he is now 2 1/2 years old and doing remarkably well with some great therapy and intervention. my sister, on the other hand, is still picking up the pieces of her soul when it was shattered into a million pieces nearly 2 years ago by a thoughtless and careless remark by a doctor. her son made countless trips to the hospital after being released from the NICU for lots of respiratory problems. one time things escalated very quickly, as you know can happen all too well, and the doctor looked at my sister and said something like, “he is in critical condition. why did you wait so long to bring him here?” from that moment on my sister has struggled with her self confidence in her ability to parent her child and to be the mother she can be and deserves to be. she knows these are only words, but at that moment they had so much power…she thought that she made a mistake that could have cost her son his life, and ever since she has been robbed of her ability to trust her instincts. she is just now getting comfortable with being alone with him. i could go on, but i’ll spare you. i just think that doctors, although they are human too, need to know that they should choose their words carefully even in their most stressed and heated moments. words have weight that can linger for years. be gentle. be compassionate. be direct without being dramatic.tell the parents what they are doing well once in a while…it will go a long way.
you are amazing and are doing so much good to help others. the world is a better place for having you work on this cause. good luck!
much love and hugs
I don’t have a story – you are honestly the first person I’ve known who went through this kind of thing – of course, now I hear about it everywhere – my eyes weren’t exactly open to it before.
Anyway, I’m so proud of you and I know Maddie is, too.
.-= pgoodness´s last blog ..The day of & the morning after =-.
You, Mike and Maddie will continue to change the world and make it better – xo
.-= amanda´s last blog ..so I got up on time. =-.
Heather of the EO says:
My son, Asher had a brain shunt put in when he was 15 months old. We have on-going contact (and always will) with our neurosurgeon and his staff. Asher will have replacements through out his life, and when problems arise, we’ll go back to the same docs and hospital.
I can only tell you what I loved because thankfully we have had a really good experience in the PICU. The staff was incredibly kind and attentive to both Asher and my husband and I during and after his surgery.
We live in Minneapolis and spend our hospital (and clinic) time at Gilette Childrens Hospital. We also have experience at United Childrens in St Paul. There must be some excellent training in this regard (responding to parents), or the administrators very carefully choose their staff based largely on their “bed side manner,” because I’m pretty picky and sensitive (obviously, since this is about my child’s brain) and I’ve never been disappointed.
They always stop to listen, make eye contact and give their full attention and then respond immediately. While in the PICU they treated us with respect by sincerely speaking with empathy and understanding. They explained things so fully, we rarely had questions. I don’t know about other hospitals, but the staff to patient ratio in our experience really helped. There were usually two nurses available w/ no other patients besides Asher even through the night. I’m sure if they were overly busy, it would be a lot harder for them to respond in the positive way that they did.
I know I’m writing a book, but I think what I’m trying to say is that it seemed the staff in our PICU had an inability to forget that these are children…not just cases. Nobody treated us like a number or a term. They treated us like Asher, Heather, and Ryan. They seemed focused on remembering how terribly hard it must be for a parent to watch their child in pain. That’s what I love.
You’re going to do great, Heather. There is so much grace in what you’re doing. You’re making a difference rather than…not. It takes so much strength to carry on the way that you are carrying on, even while it hurts so much. You rock.
.-= Heather of the EO´s last blog ..Just One Word =-.
Heather you are amazing! You, Mike and Maddie ARE going to change things. I posted a link to you on my fb, I know several Nicu mommies with good/bad experiences.. Hopefully they can help. Always thinking of you guys and praying for Miss/Mr Binky!
Oh my goodness…where do I start?
My son got sick with Group B Strep at 13 days old(late onset…different than the one we are tested for at 35 weeks…and deadly usually). I remember the beeping and the sound of the vents.
My requests were small.
I wish that parents could be in on rounds. Or at least had the opportunity to participate. We were forbidden to be in the NICU for the two hours that they were rounding. I would have liked to be part of the team. I was never sure what the plan was.
I wish that we could have had the same nurse…someone who really knew our son. I know they go in shifts and maybe they didn’t want “crazy mom that never leaves” hanging around but it would have been nice to have continuity.
Nobody ever found out what we wanted which was, of course, to take home our son. Mostly, we felt like we had been intervened to death. Because of that feeling, I didn’t get him the PT soon enough. He probably should have been tube fed. I don’t know. Hindsight…
As far as me…PTSD is a definite. And continues to be.
I think somebody should routinely come and check on the parents. Check blood pressures. Make sure parents are eating. Going out for air and exercise. Able to make phone calls (cell phones were not allowed in hospitals in 2002). I also think that someone OTHER than a chaplain should visit with the parents. For me, even though I have (or had) some religious beliefs, the visit from the chaplain was tatamount to last rites. If I want a visit from clergy, I will ask for one.
With my son (as well as with my husband) the caregiver is almost always ignored. Yeah your kid is sick. And in a medical sense, they are doing what they know how to do. But what about those of us who are discharged with this tiny person that has been worried about and fussed over and prayed over for weeks, months, years? That’s a HUGE responsibility. It’s like God was in the hands of the doctors to keep them alive and now it’s been handed off to me. I mean, I’m just a mom.
Didn’t mean for it to get this long.
There’s the story of losing my son (at 11 months) on my blog under “Posts of Particular Interest”. The story of my husband is also there. I know that’s not what you’re looking for. But it’s the same kind of trauma. Except different.
.-= JennK´s last blog ..I should be making pie right now. =-.
Jen (Quatro_Mama) says:
I think I might jam your comment forum if I leave a comment here. I’m soooo burdened by this topic…we CAN make a difference for those who may walk a similar NICU path. I’d love to be part of this….You know where to find me.
.-= Jen (Quatro_Mama)´s last blog ..Summer Quadyssey: Indiana State Fair =-.
You are an unbelievably self-less person…using your horrific experience to do good.
I wish you well.
(Sorry, I posted this on the wrong post initially- my apologies for a double post)
It’s funny.. I’ve never taken the time to think about this question because no one’s ever asked- isn’t it funny how much we overlook when our kids are sitting on the precipice of life?
The things that stand out in my memory of my son’s NICU experience is the most dramatic- I was unable to hold him, even touch him, until he was almost 3 days old. I wonder if that almost caused a disconnect in me because I’ve had a much harder time bonding with him then I had my daughter (I hate to even admit that) I know that the nurses full focus was on him and how to get him better, but thinking back, it would have been nice to have had someone there as my advocate too- as a parent and someone who had no idea what was going on. Not to be selfish, but just someone who could take the time to explain to me EXACTLY what was happening so I didn’t feel so lost and alone. Thankfully my sister’s a nurse and could decipher a lot of what we were being told, but most people don’t even have that. It would have been nice to have someone there to check in on my husband and I, to keep an eye on our son and let us know at the earliest possible time, when would be safe to have held him. I know I’m not a medical professional, but I felt as though we were almost overlooked in terms of being able to touch him and be close to him, and though I understood their need to stabilize him, I felt like there were many opportunities we could have had to be close to him- to touch his skin and speak softly in his ear, where we weren’t allowed to. And I’m not speaking badly of the NICU we were at, they were as caring and empathetic as they could possibly be with so many sick babies to care for… but I agree completely and totally that a parent advocate would be a great thing as well.
One thing the NICU did that thrilled me- they gave us a blanket that was knitted by a local nursing home for the sick babies, and let me sleep with it- all curled up next to me, as though it were him, and after a few nights of sleeping with it, the NICU allowed me to put it next to him in his bed. If I couldn’t be there sleeping next to him, at least something that had been close to me, could. We actually still have that blanket, and I can’t look at it without tearing up. I’m beyond thankful that he’s healthy today, but I don’t think any of us go into this ride (pregnancy, birth, children) expecting anything like this to happen. So I can completely understand how PTSD would be a byproduct of all of the trauma.
I could sit here and tell you how strong and amazing I think you are, but I’d venture to guess that you probably don’t feel strong and amazing. But you are, Heather- you truly, truly are. I’ve been reading your blog since Maddie passed, and my biggest regret is not having found it sooner.
Thank you Heather- and peace be with you, hon.
I had a relatively good NICU experience (if there can be such a thing). I wish that there were more resources so that there could be a room for every family to stay at the hospital if they choose while their baby is in the NICU. I was lucky because the NICU staff at UMass, with the exception of one night, was able to make arrangements for me to sleep on a cot in one of the breast pumping rooms at night.
I think what you guys are doing with Friends of Maddie is great. I know in my case, I was totally unprepared for a two week stay at the hospital and having those types of essentials given to me would have been wonderful. Definitely put lots of snacks in those bags! I consistently was forgetting to eat during my daughter’s NICU stay.
A previous poster talked about a spastic doctor who had no bedside manner and scared her by talking about her baby being about to die. I suppose that is not really a NICU problem per se, but I had a sort of similar experience: we had a team of doctors working together to figure out what was up with my daughter, and they were not really on the same page. they would debate in front of me about what was going on – one of them kept throwing around the words “congenital brain tumor” when it wasn’t clear whether that was what she had. he talked about brain biopsy, chemotherapy, brain surgery. none of this ended up being necessary because thanfully my daughter did not have a brain tumor, but he scared the bejesus out of me. i cried my house out for hours straight after that conversation…. again, i suppose that isn’t really a NICU problem, but it should be a no-brainer for a doctor talking to the parents of a NICY baby to use some sensitivity.
Hope some of that might help you! Thanks for everything you’re doing.
I too have a preemie Madalyn born at 34 weeks. We spent two weeks too long in the NICU at UMASS, I felt that the staff we had contact were supportive and helpful.. many of them sharing that they too had nicu babes..my only recommendation is to maybe have rooms for preemie moms to stay in right after birth and for the short two or three days following..I was stuck on maternity floor with mothers and their children…i heard babies cryin all night and I walked by the “regular” nursery to walk up to see my baby…I also think support groups would be most helpful.. I myself am a social worker and I work with trauma survivors all the time.. I also deal with grief and loss….Having more support groups for preemie moms would be great.. I have friends who have full term babes and they just dont get it when I worry about coughs and colds….its nice to be around others who understand…Heather, you Mike Maddie and Binky are always in my thoughts and prayers..Much love sent your way
Aaaaand, you continue to be amazing.
.-= jonniker´s last blog ..The Sidewinder Sleeps Tonite =-.
I wrote part 1 of my daughter’s story here – http://laughdontcry.com/2009/08/the-ballad-of-babybirl-part-1/
I will write part 2 this weekend with the questions you asked in your post and come back and leave a link or send you an email.
Can I just say thank you for doing this – you are an awesome example of a mother and human being and I wish I could be more like you.
Also, if there is ever anything i can do for you, Mike, The Binkster or Friends of Maddie, please let me know. Please! I stand ready to apply the meager talents I posses to help the cause that is incredibly important to me – and so many of your (stranger) friends.
Hugs, Hugs and more Hugs to you . . .
.-= deej´s last blog ..Don’t Look Back =-.
My twins were born at 32 weeks and spent 30 days in the NICU (they are now 3 years old). My baby (8 months old) was born at 35 weeks with a 7 day stay in the NICU. It was our second NICU experience that exposed the wounds that we had left unattended by our stay with the twins. I would be happy to share our experiences – mostly good i’m glad to say – in order to help better the overall NICU experience for parents and baby.
.-= Ariel´s last blog ..mud =-.
Anna Marie Hinnant says:
Heather, I am so thrilled for you that you have this opportunity. Thomas’s stay in the PICU at Duke (he was transferred there 2 days after he was born) was harrowing, to say the least. He was on an oscillating vent at first and his heart rate and blood pressures were all over the place. The constant “bong bong bong” of his monitors, and the ones around him, drove me straight to the edge of crazy. And then over the edge.
Duke, like UCLA, is a teaching hospital and the trooping of the residents in and out also made me crazy. BUT, I always wanted to be there for rounds so I could hear what they were saying about him – info could be sort of scarce. Our nurses there (and yes, I say OUR nurses because they handled me and my husband as gently and competently as they handled Thomas) were awesome. Amazing. Fabulous. I can’t describe how wonderful they were.
There was only one doctor that really rubbed me the wrong way due to her bedside manner. She was not well-suited to dealing with frantic parents worried out of their minds about a child.
Being told that your child might not live is unimaginable, as you know. The social worker for the PICU was a sweet lady but she really didn’t help me much. She mostly asked how we were feeling. At the time, with a critically ill infant, all I could think was that it doesn’t MATTER how I feel. I don’t care how I feel and HOW THE HELL DO YOU THINK I FEEL??? I just wanted to know how THOMAS was doing. Even going to the cafeteria to eat seemed to be too much of a luxury when my child was possibly DYING upstairs. I think that is universal among parents and families of sick children. I just didn’t want or care enough to take care of myself and I am forever grateful that I had people to do that for me – to remind me to eat, to make me go home at night to sleep as I was still recovering from my c-section, to force me to go outside occasionally to get away from the intensity of the PICU.
I remember wishing I could just have a bag lunch brought to me that I could eat at the nurses’ station. Leaving the PICU to eat meant I had to buzz to be let back in, and if the receptionist wasn’t at the desk or was busy, no one would answer and I was left standing outside the doors trying desperately to get back to my baby. I hated knowing that if I left I would have to ask permission to come back in.
Essentially, Thomas’s stay in the PICU meant that when Emmie was born at 33 weeks and went to the Special Care Nursery, I knew what was up, could read the monitors, could read her chart and follow what was going on with her. Because she was healthy and just needed time to grow, I felt like I was calm and in control…until the night I called to check on her and the nurse told me they had dropped an ng tube to feed her because she wouldn’t take a bottle at her 11:00 pm feeding. I flipped out. I started shaking and crying and had to hand the phone to my husband so he could tell the nurse that if she didn’t have that ng tube out of my daughter’s nose by the next morning that there would be hell to pay.
I had no idea until that point how important it was to me that my daughter was eating from a bottle and doing it well. Turns out it was a lazy nurse who didn’t want to deal with the bottle feedings overnight. So, PTSD? Yup – sign me up for that group please.
Thank you for doing this Heather, you are an amazing woman.
Anna Marie Hinnant says:
wow. sorry about the novella.
The things you are doing in honor of your daughter, the amazing help you are giving to those who have been or are in a similar situation is awe-inspiring and truly amazing.
I was lucky and didn’t have to experience the NICU but I have several friends who did and I will make sure they read this post and pass on their suggestions.
Best of luck with your talk and I know those doctors and nurses will take everything you say to heart. Good for them for recognizing the need for some changes.
.-= Lisa´s last blog ..Adventures in Babysitting =-.
I hated not being told what was going on during my difficult pregnancy. Doctors would come in and out looking very worried withoug telling me anything that was going on. I’d rather they be frank with me and tell me the bad news than not tell me anything at all.
If you are up to it, you should talk about the horrible bedside manner of the doctor on Maddie’s last night. That could really be a teaching tool and eye-opener for others.
.-= Megan´s last blog ..It wouldn’t be an authentic South Philly wedding without the Mummers. =-.
PB and Jazz says:
Heather you never cease to amaze me. You go girl!
.-= PB and Jazz´s last blog ..A Piece of Me =-.
Noah Coffey says:
My wife and I had our first child 4 months ago and she was 6 weeks early. We spent a week in the NICU at St. Vincent’s Women’s Hospital in Indianapolis. We were extremely lucky in that the worst problem our little Alexandra had was some breathing trouble the first day, which cleared itself up in the first 24 hours (and was mostly due to the c-section).
While our experience was largely positive due to our baby’s rapid progress, I will definitely remember my time visiting her every day in the NICU. I was brought to tears at least once while witnessing a flurry of nurses, doctors, equipment, alarms, and hurried privacy screens were assembled around one alcove while a premature baby fought for his last few minutes of life.
In one week, at least 2 babies passed away. At one point, I had feelings of guilt for being thankful that my child was doing so well and intense sorrow for the parents of the other babies I was surrounded by. Super small babies with lots of wires connected to them. It would break my heart each day.
That week definitely changed me as a person in some way. I don’t believe I will have any stress disorder because of it. In fact, I feel a much stronger appreciation for both my daughter’s life and life in general. It gave me time to genuinely reflect on what was important to me in my life and was a boot camp of sorts into parenthood.
As far as nurses go, most were great with a few that I just could not understand their attitude. My wife was stuck in the hospital for a week as well with an infection and badly wanted to feed our baby as often as possible. There were a few times that the nurse on call simply ignored her desire to be there to breastfeed and feed her only minutes before my wife arrived. Then, we had other nurses that seemed to go out of their way to help us succeed and get our baby well enough to take home. The constant changing of nurses from day to day was uncomfortable as so many seemed to do things differently.
That was my experience. Now that I’m a father, I will talk to anyone about my baby for way too long, so feel free to ask away if you have any questions!
.-= Noah Coffey´s last blog ..Thinning my huge list of domain names =-.
Heather – I so thrilled that you have this opportunity to help other NICU parents and so amazed that you have the strength to do it. I’ve said it before – y ou’re an inspiration.
I am a Mom to a late-term premie (born at 34 weeks gestation). We only spent 2 days in NICU, then 2 weeks in a Level 2 Special Care Unit. Sam was very fortunate in that after a few hours on CPAP, he was able to breathe on this own, and was in an open cot after a couple of days. He didn’t require any invasive procedures and the worst thing we saw were temper tantrums over having an NG tube inserted.
But, despite our relative good fortune, I would make a couple of recommendations, particulary after reading the NY Times article:
1. Our hospital was very careful about patient confidentiality, to the point where I felt discouraged from talking to the other parents. I was fortunate to find a “best NICU friend” but without her, I would have had no support network at all. Putting into place some network that allows parents to connect if they wish, would have been really helpful.
2. Something that kind of blows my mind now that I think back on it – no one ever gave us an overview of Sam’s overall prognosis. Perhaps they didn’t think it was necessary but I had no idea what to expect! Now I know that a large (he was almost 7 llbs!) 6 week premie with no other obvious complications is likely to do fine – but no one ever said that to me. I know that doctors and nurses can never guarantee, but it would have been nice to hear, “You know, most kids that we see like Sam do just fine.” Instead, it was very focused on the details: pre- and post-feed weigh-ins, which made me completely crazy, weighing soiled diapers, checking on monitors, etc. No one ever stepped back to give us the big picture.
Good luck – NICU parents could not have a better spokesperson than you!
I totally agree on #2
My experience with the NICU at Los Robles was great. They are affiliated with UCLA. The nurses were all wonderful and listened to me when I said I wanted to hold her or try nursing. The doctors were both really good too. I, at times, felt that I was not being told enough and was pushed aside. I never once had a doctor come to my room during rounds and tell me what was going on with my baby as they did with other moms. I do remember being upset at all my family and friends for not understanding that being in the NICU was not normal for babies and that I was uncertain of when she would be ok and could come home. People wanted to stop by and see her and hold her and I wanted to scream at them for not knowing that I couldn’t even hold her yet. Thanks to you writing me back after a long rant on your email I felt better and knew I was not alone in feeling this way. I remember taking Kate home and wanting no one to even get close enough to look at her because I was scared she would catch something. I have babied her tremendously compared to my other two and I think it is in part due to her early arrival and the NICU stay. Kate only stayed in the NICU for 9 days, but to me it was the longest 9 days ever!
Thank you for doing so much for the moms and dads out there that have to go through their longest days. You have always been amazing and continue to prove how strong you are!
.-= Sara´s last blog ..Got squeakers? =-.
I have had three preemies. My son, Noah, was born at 28 weeks. I went into labor at 24 weeks and unexpectedly, one morning I went into labor (the night nurses at the hospital thought I was constipated). Wow…what a difference! For that experience we were at the Childrens Hospital of Illinois. We loved it there. Most nurses were very nice and caring. One of the best things they did there, and I echo comments I’ve already heard, was to take pictures of him when I wasn’t able to get down to see him. After two weeks in the NICU he was moved to the regular nursery, the most stressful time of my life. After begging to get him moved back, we moved to the NICO Step down unit. Where he was for the remainder of his six week stay. They were great about letting visitors come in to stay with us, which was wonderful. They also had a program that allowed breastfeeding moms access to a free lunch every day. The only thing missing there was a support group for parents in this situation. There was no one that really understood what we were going through, but many tried. We needed to be able to speak with someone that truly understood the feeling that we did something wrong, the we missed out on something, that it was our fault. Though it wasn’t at all. And also, someone that could help us deal with the experience coming home, without your baby. Today, Noah is a happy, healthy 6 year old and I am very grateful to the hospital, doctors and nurses. We were very lucky to have them!
My daughters, Alexis and Olivia, were born at 32 weeks. I was lifeflighted from a local hospital to Champaign. There the doctors were very helpful talking through my birth options because there was no stopping them from coming. After they were born, I had the privelage of getting to hold Alexis and then to see Olivia, which never happened with my son. The girls were then taken to the NICU. There the nurses and doctors were also very helpful, the NICU was in the process of moving to a brand new unit, so unfortunately, the NICU itself wasn’t the nicest (though I hear it’s beautiful now). I was able to come to term with things much easier the second/third time around, plus I was also more informed with all the knowledge I gained with Noah in the NICU. The nurses there were very patient with my questions and comparisions to our other preemie experience. They also had cameras there, and the nurses would take pictures of the babies when you were gone so you could see your babies and what they were doing (which wasn’t much) while you were not there. What they were also missing was the support group. As parents, you do form an informal support group, just by chatting with those next to you, but something more organized would have been wonderful. In addition, for those with multiples, if there was a way you could go to the hosptial with the other baby, that would have been great. Though it was only four days, it was the most agonizing four days of my life, when I left my Olivia behind and was home with Alexis. I wasn’t able to enjoy it, just felt guilty for leaving my baby behind.
One thing I think the doctors and nurses miss is the fact that as parents, the thing that you want is to be able to take your baby home. Of course you want your baby healthy and you don’t want to do anything that would compromise their developement, but when a parent asks about a baby coming home, don’t roll your eyes. Unless you have been there, you don’t know what it’s like to leave the hospital every day without your baby..it is one of the hardest things I have ever had to do.
Thanks for listening, I’m sure I have more, but this is long enough. And, it’s time to walk my 2lb 8oz miracle to kindergarten. While I drag my 3lb 6oz and 3lb 8oz miracles along with.
On a side note, Heather, I know my agonizing moments are no where close to what you are experiencing. I appreciate you sharing your life with all these strangers. It makes everyone appreciate what they have a little more. I’m praying for you and your family as you continue on your journey of life. Many hugs!
I guess drag wasn’t the best choice of words. They just don’t want to go with me, they would rather stay home and watch Diego in their pjs!
I guess drag wasn’t the best choice of words, but they don’t want to go, they would rather watch Diego. =)
I’ve had seven babies in the NICU, 4 came home and 3 didn’t. I even hit all the three big NICUs in my city of Indianapolis! Not a goal I was ever trying to aim. I’ll really don’t have any advice, but oh, do I remember those sounds and smells of NICU. It’s something that stays with you forever. I always tell people the NICU is a whole other world, the outside world just seems to stop. One thing I hated though, was that we actually had to pay for our parking in two of the hospitals! That really pissed me off. Especially since I would usually make two trips a day and my husband would usually make one himself. Overall, my NICU doctors and nurses were wonderful. I am just so sad over your little Maddie….I think of her several times a day and I always hold my children a little tighter because you never know what tomorrow will bring. My babies that didn’t make it home were triplets, born at 24 weeks. They only lived about 2 weeks. Next were twins, born at 35 weeks, and 2 singletons born at 37 weeks. Except for one of the twins, they all had underdeveloped lungs and spend time on the vent. Very scary and stressful for us considering our 37 weekers “should have” been just fine. Thank you for doing this, I’m sure many NICUs are in need of a “make-over”.
Sara from Indy
The smell does stay with you. I bring my daughter to the same hospital still for NICU follow-ups and to see specialists and such; I hate if I end up washing my hands there, because then the smell on my hands immediately bring me back to 2 weeks in the NICU……
I don’t have a personal preemie story to share and I’m grateful for that, very-very-very grateful.
You are amazing Heather. This post gave me goosebumps. To help others so much after all you and Mike have been through and continue to face every day – well – it’s just amazing.
Strength. Love. Hugs.
.-= Melissa´s last blog ..Who knew chores could be so fun? =-.
My son was born with a connective tissue disorder and has spent a significant amount of time in NICU’s. PICU’s and sees about 15 specialists. In the 10 years of forming doctor,nurse/parent relationships a couple of things that I find helpful is when the docs admit they just don’t know…this is rare to find in any doctor but admitting they are unsure of something is honest and noble. Also, listening to the parent is key…Mom knows more. We feel our childrens pain and have our intuition to help us know what our childrens problems are. Health care professionals need to listen to parents and learn from them.
One other thing that would be really nice is to be able to contact a doctor with a question without having to make an appointment. Email would be nice. Is that crazy? I emailed a really great doctor from Johns Hopkins once who doesn’t even treat my son and he responded to me within the hour… I was shocked and amazed…Kindness goes a long way.
I hope this helps.
No one better to do this. You amaze me, Heather, as you continue to love & honor sweet Maddie. xo
.-= Kelly´s last blog ..The one you love =-.
Maria Delgado says:
What an amazing opportunity!
.-= Maria Delgado´s last blog ..Goodmorning. =-.
Amy Christiansen says:
When my son was in the NICU, the NICU was split. The more serious cases were upstairs in the Maternity ward. The less serious cases were downstairs, in the post partum ward. Well, after I had my son via a natural birth, he was placed upstairs. I was moved to the post partum ward downstairs. This was a HUGE issue. I had to walk about 300 yards to see my infant in the NICU. I asked repeatedly to be moved to a labor and delivery room upstairs to be closer to my infant. I was refused. I was not offered any wheelchair or other assistance to get to my infant. But, with every step I took, it felt like my insides were falling out. It made for a horrible experience. I think it would have been better if the hospital had understood the need for a mom to be housed near to her NICU infant. There were plenty of l & d rooms available.
My preemie is 5 years old now, and I still shudder when I think about his first few months. The worst though was once he finally came home from the NICU he contracted RSV and landed back in the PICU for 6 weeks fighting for his life. The PICU was the worst for me. Another baby died from RSV complications while mine was laying there on a vent and I could hardly take it.
There’s a soundtrack that I would listen to everyday while I drove home crying (the Moulin Rouge soundtrack, of all things) and to this day 5 years later if I listen to it it brings back horrible memories and I’m transported right back to that time. Sometimes even just driving down the 405 makes me freak out! lol Anyways… I have no doubt that PTSD is real for NICU parents. Heather, you are so awesome to help others who are going through this.
My nephew was born in June 2006 and passed away 14 days later. He was my husband’s sister’s baby and he was both premature and born with some significant medical issues that were known beforehand. Nevertheless, we were all praying for a miracle.
My husband took leave from work and essentially lived in the hospital for those two weeks and I visited every day and spent many of the nights there. The pain and anguish was unbelievable and yet the one thought I kept having was “This isn’t even my child.” I had no idea how his mother was even able to function.
I wrote about the experience (although not exclusively) on my blog here: http://hangingaround.blogspot.com/2006_06_01_archive.html. Also, some later posts: http://hangingaround.blogspot.com/2008/04/walking.html and http://hangingaround.blogspot.com/2008/04/mighty-matt.html
That period of time, that experience, changed me more than anything else in my life has, which includes having my own child since then. In fact, I’m crying right now thinking about my nephew. And again, this was my nephew–to this day, I don’t know how my sister-in-law survived.
The thing that sticks out in my mind most that none of us were prepared for (and I’m not sure how one prepares for this) was the physical act of leaving the hospital without him. We were all together when the decision was made to terminate care. We all held my nephew after he passed, helped bathe him, got him dressed, etc. But the physical act of leaving the hospital for the final time was excrutiating. I felt helpless on the elevator as my sister–in-law was hysterical that she couldn’t just leave her baby.
Good luck with your talk. You are an inspiration to many.
Meagan Francis says:
My NICU experience wasn’t as bad as many because we figured out by day three or four what was going on, she never had any more scary moments after the first day, and then once we got her off all the tubes and vents we were basically just waiting out the ten-day antibiotic treatment. So after about day 3 we weren’t terrified that our baby would die…we were just waiting to go home. But it was still plenty frustrating. I think maybe worse considering I was an experienced mom who has a definite style of parenting that I could not do in the NICU.
The nurses were amazing and gave detailed, skillful, life-saving care. And yet they could be cold. I remember one nurse joking to me that she let six-day-old Clara and another (chronically unhappy) baby “talk” to each other late one night after I’d finally dragged myself from the plastic recliner to go get some sleep. What she meant, of course, is that she let them both cry in the same room. It struck me as such an insensitive thing to joke about with a new mom who probably would never dream of letting her brand-new baby cry all night, especially with another crying baby. But there were a lot of those little insensitive moments and comments. Like the nurse who told me I couldn’t hold Clara (I’d been waiting for days..and had been promised by the earlier nurse that tonight I’d get to hold her) because she’d already had her “care”. I went back to our room and cried my eyes out. I know now there was no REAL reason I couldn’t have held her–she was a HEALTHY full-term baby who’d had her diaper changed and heel poked, big whoop, it didn’t make her unholdable–but it was either inconvenient for the nurse or she was unwilling to stray from her routine. But to ME it was just the third day of my baby’s life, and two of those days I’d been looking at her through a plastic wall, and wanted desperately to hold her. It wasn’t “Just another day at work” to me. You know?
And then there was the fact that nobody is taking care of the postpartum mom’s needs. You can’t eat or go to the bathroom in the NICU, so sometimes I’d just forget. My husband would have to drag me to dinner at night (more hospital food. yay.) I was up on my feet and walking way too much but there was nobody there I could ask to check on me. I started breaking out in this bizarre rash one night and my arm swelled up–looking back, I think it was stress-related–and I asked the nurse if she had any idea what would cause that. She literally backed away from me and said “Uh, I don’t DO adult arms”, as though I were a leper. Like it would have been so hard just to look, or say “hey, why don’t you pop over to L&D and see my friend Sue” or even just to give me some sympathy? Instead I felt like an ass for even asking and started crying, then felt like an ass for crying…ahhh, the hormonal rollercoaster.
The other stressful part was not knowing what was going to happen with us from day to day. We were given a sleeping room, but then told we could lose it at any time. So every day I had to worry about whether we’d be able to stay in the hospital that night or pay for a hotel or whether we’d have to go home (an hour away) and then come back.
I know our issues were minor compared to people with really ill babies in the NICU, but I think what happens in situations like ours is that you feel trapped. Here we were with a pretty healthy baby who we desperately wanted to take home, but we had to wait, and let other people poke her and mess with her and care for her in a way we never would ourselves. And the whole time I was worried about whether I was bleeding too much or might get an infection or my uterus might prolapse or something because I’m walking all over the hospital grounds and eating crappy food. Oh, and missing my other four kids, who were with their grandma worried about us and the baby.
I think it would have been awesome if they’d sent a nurse to check on me at some point. I wasn’t a patient in the hospital so I had nobody local to call when I was worried. I think the sleep issue has also got to be worked out. There has to be a place in these rooms for parents to get comfortable and sleep. In our hospital there was only one room with a bed–the “parent training room” (gag). The rest had hard, uncomfortable plastic recliners and you couldn’t sleep in them. I’d have taken over all of Clara’s care and made the nurses’ jobs that much easier if I’d had a place to sleep in the room. We finally got the parent training room on the last two nights, and the nurses hardly even had to come in…we took care of everything ourselves except the antibiotics.
One other thing–I think drs. should have to fully describe all treatments and the possible side effects so you know what you’re getting into. I was shocked to find out that an antibiotic Clara was on is known for causing hearing problems and ***no one ever told me***. That just felt so wrong. I wrote about it here: http://meaganfrancis.com/2009/03/23/clara-update/
Boy, I guess I had a lot more to say on this than I thought I would. It’s funny to me how months later, even with a very healthy baby and a not-that-bad NICU experience, I want to cry just thinking about it.
I think you’re right about the PTS, Heather. My sister-in-law’s first baby spent three weeks in a NICU (born prematurely via emergency c-sec) and when she came to visit us in the NICU she got dizzy, felt like she couldn’t breathe and was going to pass out. It was this immediate, almost instinctive reaction to the sounds and smells and sights.
I know you are going to help so many people. Much love coming your way. I rarely comment but read often and love seeing Maddie’s videos and pictures.
.-= Meagan Francis´s last blog ..The Happiest Mom Back-To-School Survival Guide: Twitter Moms’ Tips! =-.
Happy Friday! What an awesome experience you have been given the opportunity to do!! I personally don’t no first hand what it is like. I wish I could help you in some way though. I can’t wait to read all about it.
Have a good weekend!
.-= Andrea´s last blog ..Infertility =-.
My twins were born at 31 weeks when I suddenly went into full blown labor. Baby A, Morgan was born vaginally and was stillborn. Baby B, Madison (my Maddie) was born via emergency c-section and stayed in the NICU for 6 weeks. And still came home on heart monitors (which we called it her Prada bag) and many medications.
It was the hardest thing I ever did, dealing with the death of a child and a critically ill one at the same time. I also had a 6 year old daughter who was overcome with grief and traumatized about the death of one of her baby sisters as well as trying to understand what the NICU was all about and why our Maddie was there.
The things I would change…I would of spoke up more. Because of my grief and being outright frightened at what our Maddie was being faced with I forgot my voice and had no help finding it. Finally the day I picked Morgan’s urn up, I found it. I wanted to try things my way in the NICU and at first the doctors would hear nothing of it. Then, they did. 5 days later, she was coming home.
What I loved about it was the love that surrounded my child. I came across the most loving, compassionate nurses…women…that I have ever met. They truly loved Maddie. I had a handful that took care of her EVERY DAY of her 6 week stay, even ones that didn’t work in the NICU (nurse from the mother baby unit that held me while I finally lost it when reality came crushing down on me came in an hour early every day, even when she wasn’t scheduled-during shift change-when I couldn’t be in there to feed and cuddle my Maddie.)
I loved that when I would be there throughout the nights holding Maddie that they would just leave us. They wouldn’t do anything unless there was a medical need and let me do everything. No one tried to step in and say I was doing it wrong, or to do things differently. They let me mother her.
I know the nurses were there for her, and they certainly put her needs before mine but I wish there had been more of an advocate for me. The social worker I was working with was all about the paper work, not about my families ordeal.
More support for not just the parents, but the families. My 6 year old had no support but what she got from us and her school counselor. She got to see Maddie briefly, but it was flu season so it wasn’t often. But she had questions, questions SHE wanted to ask, that SHE wanted answered.
Jamie Antisdel says:
Our daughter was born 12 weeks early in March of 08. She was born at a hospital in St. Louis known for treating high risk pregnancies. Although my pregnancy was nothing close to high risk until the 48 hours leading up to Adali’s birth we managed to be in the best place…consider it dumb luck. However, after a few days she was transferred to a children’s hospital that had just opened a brand new private room NICU. I wish I could say that a private room made our experience less traumatic but that is not the case. I also read the article this week and, like you and MIke fell surprised that every parent did not end up with PTSD.
I had a unique experience in that my husband was a physician (ENT) at the hospital where our daughter was being treated. He would often times be in the NICU treating babies just a few doors down from our daughter. Although the care we felt our daughter received was first class, the one thing I would have liked to happen was for the staff to remember that even though my husband was a physician, I was not. More times than I would have liked, they assumed I knew what was going on, what the medical jargon meant, what her odds were, and even how to take care of her should an emergency happen and they not be in the room at that moment.
The other thing that I would like to see change is the role of the social worker in a NICU setting. The article touched on it a bit but instead of a social worker asking you how you were that day, they need to be more of an educator on what you might experience while in the NICU and the months/years following discharge. I remember the social worker coming in and having an initial conversation with me. She asked if the father was in the picture, if I had family close, etc. I think because the answers to all of her questions were “yes,” she felt like she would be of no use. However, even though I may be surrounded by family, none of them had every experienced what we were going through so nobody was there to tell me that 18 months after her birth that I would still be suffering. I suffer guilt because she is doing so well when I knew many of the babies I saw during our 2 months in the NICU would not. I freeze when I hear my husbands beeper going off and my mind goes right back to those dark days. I cry when I see completely healthy babies.
ok, this is getting long so I better wrap it up. I have a unique perspective to offer since my husband is a physician and if you would like to talk more about it, I will be more than help out in any way I can.
I hope you get to feeling better soon.
.-= Jamie Antisdel´s last blog ..little gymnast =-.
Thank you Heather for doing this – my daughter spent a week in the NICU for significant ALTEs – pro-longed apnea. I had a really hard time with my pediatrician who called me on the phone after a significant spell and told me that Catherine’s events were associated with crib death. i didn’t need to hear that at that moment – needless to say I changed pediatrician’s as soon as I could. Our hospital did not have a support group and I wish it did – it would have been an amazing resource because I am a talker and could have used that as an outlet.
My daughter was on a home monitor for 7 months and the sounds of its beeps still stir me in my sleep. The social worker in the hospital did tell me to watch out for PTSD and to be prepared for it, which sounds like it is a lot more of a heads up than what other mums and dads hear.
Thank you for all you are doing Heather.
I’ve been reading your blog for quite awhile now–but I’ve never commented. I guess it’s always been hard for me to find the right words when I didn’t read from the beginning…I’m one of those unknown people out there thinking of you, your family, and Maddie. But when you asked for suggestions about NICU experiences, I couldn’t stay quiet because I’ve thought of so many things over the past 4 years. The most important one to me was that when my 23w4d twins were born and in the NICU, they placed me in the same mother/baby rooms as all of the moms with healthy, full term babies. At the time, I was assuming my babies would die because, well, that’s what they tell you about 23 week babies. And there I was in bed listening to all the moms, dads, new babies crying, and happy families in the rooms right around me. It was a cruel form torture as far as I’m concerned. For any mom of a micropreemie, or any preemie for that matter, they should understand and put us in a quiet corner of the hospital near the NICU so we can go back and forth to see our baby(ies) without that trauma. The NICU staff at our hospital was phenomenal, so I don’t want to take anything away from that, but it’s always been something that bothered me. And I’m CERTAIN that I was one of those parents with post-traumatic stress disorder. Just the smell of the soap in that hospital can send me for a loop. How could anyone not be? Good question.
.-= Michelle´s last blog ..Baby It’s Hot Outside =-.
Oh my god, Heather…I can’t stop being so inspired by and thankful for people like you. I don’t have children, but plan to someday. Thank you so much for using your experience to help others. You never cease to amaze me.
.-= Jen´s last blog ..How I ended up on the side of the road in my bathing suit for 9 hours or How Lake Champlain stole from me Part IV-The Finale =-.
Karen Barta says:
Heather – I am so glad that you will be a voice for many – it gives me comfort and hope that someone so eloquent andpassionate is on “our side” with the opportunity to be heard. Our daughter is medically fragile (she has Primary Immunodeficiency Disease – PIDD, most specifically CVID and hypogammaglobunemia (think “boy in the plastic bubble” type stuff) and we has spent a lot of time in hospitals and PICUs. One of the biggest “mistakes” I have experienced is doctors and nurses underestimating what the kids, as patients, understand. When Em was six, she was fighting a dangerous infection in the hospital. At one point, drs. and nurses (we too were in a teaching hospital) rushed into her room and started frantically moving equipment around her hooking things up and in general freaking out both of us. When I finally got the attention of one of the docs and asked what was going on, he said “well, we think we might have identified the infection. Unfortunately it is not sensitive to most antibiotics and the only one that has a shot at working has a high cross reactivity rate with what we know she is severely allergic to. The treatment might kill her, but the infection definitely will if we don’t find a way to stop it. This is our only shot and we don’t have much time”. All this in front of a wide awake, fully aware and very intelligent six year old girl. She understood exactly what they meant. And subsequently panicked. What I wish they had done was approached the situation a little more calmly and had the consideration to talk to us a little more gently and quietly, maybe out of her earshot? I think sometimes they forget that kids with chronic or critical illnesses tend to be more mature and understand more of the terms and situtations than most kids at the same age. Emily is 14 now, but has never completely gotten over that day. I see that fear and panic resurface at least a little everytime we are in hospital.
Sara Joy says:
This is why we say you are brave, why you are admired, and why we all know Maddie and Binky are two of the luckiest kids in the world.
Thank you for taking this on, I can’t imagine how difficult it will be, but it is also so incredibly important.
Our experience in the NICU was short, but indeed traumatic because it is the only place our son lived. The only memories of him we have are there, and so my thoughts about that place are completely bipolar.
For us the good involved our first nurse – she gave us and our families an orientation. I am pretty sure that was just because of who she is but it was priceless. Entering the NICU is madness, just knowing where everything is and how everything works is imperative.
My family made sure we ate and slept, without them I don’t know how we would have survived. I don’t know if some kind of care coordinator could help with something like this but it sure would be nice to know that person is there for folks without family present.
Another plus – our hospital (was AWESOME) has a fund that allowed the NICU receptionist to send food, drinks and anything we needed up to the NICU waiting room, which also had wireless. Priceless, priceless, priceless.
Additionally, there was a “crash” room for families. We were allowed to sleep in this room and never left the hospital during Joel’s life. Again, priceless.
Things that need work – beating the dead horse….bedside manner. We had a doctor I called Dr. Negativity. I KNOW he had to give us bad news, but dear Lord could he at least talk about treatments? He couldn’t even bring himself to say a single. positive. thing. It was pathetic and he lost our respect because of it – entirely not helpful.
To be honest, without my family I’m sure I’d have more negative things to say, they completely took care of us. But email me if you want more suggestions of things done right, honestly, they really did well at our hospital and I can’t imagine trying to survive the experience anywhere else.
God Bless you Heather, and thank you once again.
.-= Sara Joy´s last blog ..Paternity =-.
Finally, someone has validated what I as a mother of a 31 weeker have been struggling with these past two years. Triggers of ambulances, parking garages (a reminder that I had no idea how she was going to be when I saw her that morning, hoping for the best and the reminder once again that I was leaving without her), heart monitors and IVs send me into panic attacks. I finally got professional help to work through the exact things you are saying.
Thank you and the New York Times for validating it! It is alive and real for NICU parents and is part of my life’s work like yours to help others understand and work through the trauma. You feel so alone and I refuse to have parents or family members feel alone through this. There are a ton of us out there that have had the same experience and now you are helping others understand what happens to us when your child is born too early. The grief is very real too. Grieving for an abrupt end to your pregnancy, no one send flowers, no one stops by your house, baby showers are cancelled and emptiness and worry surround what should be a celebration.
Our daughter received excellent care but many times I was the one struggling more than she was in the NICU. We both almost died. How do you get your head around that? How do you not cry when you just saw a dear little one go through surgery in the room as the nurses/docs are trying to save their life and their parents are not there because they are stuck in traffic?
Hip, hip, horray for this conversation! It brings joy to my heart. I would be honor to help you and others in anyway I can. NICU moms support one another because we all get it, we just have to find each other. We are here for you Heather.
My daughter was born at 30 weeks back in 1994 and spent 6 weeks in the NICU. As I’m sure you understand, it’s possible to still carry around the NICU experience like it happened yesterday, even after 14 years. What is sort of disconcerting to me is that in reading the other comments to this post it seems that while the medical field has obviously made great gains in being able to treat premature and sick babies, the same deficits still exist in caring for parents and families emotionally.
Some thoughts I had during my experience:
I really wish my OB had touched on what I could expect if things DIDN’T go perfectly, even though I seemed to be having a perfectly normal pregnancy. We certainly spend enough time in our OB’s office during pregnancy. ONE visit could be geared toward an overview of the NICU and a brief and basic explanation of protocol, just in case. The initial fear and anxiety of being thrown into the experience was horrible.
The proximity of the NICU to the well-baby nursery was torturous at times. I don’t know how common this is, but I would regularly sit in a rocker with my very sick baby in full view of happy couples going home with full term infants. It was totally disheartening at the time.
To echo so many other posters, patient advocacy was sorely lacking in my experience. If funding was no object, I would say that each and every baby and family should have a dedicated advocate/liaison/support person to guide them through. One social worker for an entire unit isn’t enough.
That’s all I can think of right now. You are doing wonderful things for a community of parents who may not have the extra strength to devote to raising their voices while trying to care for their children! I am keeping positive thoughts for you and yours…
Thanks for posting this. My son was born prematurely, at 32 weeks, after two weeks in the hospital. My experiences have been nothing like yours, and yet I understand completely the sentiments of the parents in the NY Times article, especially the woman who said, “From the moment my twins were born, I saw potential for tragedy wherever I turned. It would be years before I stopped thinking that way.” I’ve tried to explain this to people–how terrified and anxiety-ridden I was after my son came home. I felt that I had made some kind of fatal error by bringing him into a world of so much danger…that anxiety has subsided with time…now I realize how precious, and fragile, life can be. I don’t take any moment with my son for granted…and that is the silver lining.
My son was a full term 8 lb baby that came out of the womb not breathing well. Because I had the flu at delivery, he also had a very high white blood cell count. He was in the NICU for 3 days. My experience PALES in comparison but what sticks out the most was the head nurse who refused to let me see him when I wanted. She also fed him a bottle even though I wanted to breast feed and was given the OK from the Pediatrician. She told me we had to stick to her schedule. The final straw was when she ordered a consult with a heart specialist without first discussing it with me or our pediatrician. Had we not just happened to want to visit at that exact moment he was examining our son, we would have never known. She was short, rude, and beligerant..only allowing me to use the private room for 10 minutes to hold my son and try to nurse..
I was a new mom, had just had a difficult delivery (blood loss) and all I could do was CRY. Thankfully my mom and my husband took over…We contacted our pediatrician who called the head of the department to report the Nurses misconduct. Next thing we know,…The department head, the hospital lawyer, and the Head Nurse were in our room APOLOGIZING profusely.
My husband let in known that if that nurse had any more contact with our child, we would sue them.
They comped our bill.
Anyway, I think that the worst part is feeling helpless. It would be nice if every nicu baby/family is assigned an advocate to help prevent issues like this. Had I known that she couldn’t prevent me from breast feeding my son because it didn’t fit into her schedule, I would have insisted…but I didn’t know what my rights as a parent of a nicu baby were.
.-= Trista´s last blog ..Childcare FAIL =-.
Vickie Couturier says:
Ive never had a child that was in that situation,but as a former nurse,now retired,the best thing for young medical staff to know is to go slowly an take time to listen to the family to show you care by doing whatever it takes to ease a families stay,ive been known numberous time to actually stay after my shift was over to spend time or to give a family member a break so their loved one wouldnt be alone,be careful of what you say in the room,people are very senstive to everyword spoken,keep chatter to each other away from the patients room an just put yourself in their shoes,how would you feel,its called compassion! Its been 15 years since I worked in a hospital,I was there for 13 yrs,an I still have family members an patients come up to me an say how thankful I was there for their loved one or themselves,I dont always remember them but im so grateful that they KNEW I cared about them an their loved one,I hope this helped some,one of the reasons I left the hospital was because the paperwork was becoming more important to thehospital than the patients I was actually told I spent too much time with them! I said Its my time,I dont take smoke breaks an I take only 10-15 minutes for lunch so I quit! an worked for a OB/GYN for 6 wonderful years until I had a abrain Anuersym an had to retire,but I still had pleanty to give ,I ended up adopting a girl without a home thru foster care ,she was 12 when I got her,an she will gradutate in May! So God closes one door an another one opens,Love to you an Mike an Binky an your beautiful Maddie,,God Bless Sweetie
My experience was completely different than yours and didn’t involve the NICU or PICU, so I’m not sure if it will help you any. On June 2nd my sister had a c-section to bring my beautiful baby niece into the world. It should have been a joyful day, but it wasn’t. A week earlier we found out that baby Reagan’s heart stopped beating at 34 weeks. The experience was already heartbreaking, but the Dr made it even worse with his horrible bedside manners. One of the most horrific sentences still sticks with me and I think about it often. It seemed like he was trying to talk my sister out of seeing Reagan by saying she might be “macerated” (his words, not mine). What a horrible choice of word. Also, he was cold and referred to my beautiful niece as “it”. Not even her…or her chosen name. Maybe you can speak about how Doctors and medical staff need to pay attention to how they speak to families when they’re at their most vulnerable moments and that what they say can ring in their ears for a lifetime. And they can choose whether those words that stick w/ the families are positive or negative. My prayers are with you always.
Heather, Thanks so much for sharing your story, yet again. It’s amazing how much we go through with children in the NICU. My daughter, Jillian was born at 30 weeks gestation and spent 5 weeks in the NICU. I often beat myself up wondering if I could have stopped the labour that started. If only I could have taken some drugs to stop the contractions or SOMETHING, but my BP was too low to use Mag or anything like that. If you want, you can check out my blog or you can e-mail me if it would be easier. I just recently went on anti-depressants because I am just having a hard time dealing with everything. There’s a possibility that Jillian has Cerebral Palsey and it’s a lot to go through. Feel free to contact me at anytime. I don’t even think I can watch the video of Maddie, the sounds alone make my stomach drop. firstname.lastname@example.org
.-= Cheryl´s last blog ..Wordless Wednesday =-.
I would point out how even though nurses and doctors are used to it, they need to remember that the parents aren’t-and if there are things the parents can do-like stroke their baby’s hand, or even come watch in the NICU, they need to remember to tell the parents. My cousin’s child, Caitlyn, died in the NICU after about a month of fighting, and I know Erika wishes she could have had more interaction with her, but was just too scared at the time to ask about touching Caitlyn.
.-= Miche´s last blog ..So Long, Alabama =-.
My daughter was born at 34 weeks, after I spent 2 months on bedrest, 1 month of which was spent in the hospital. She had IUGR and low amniotic fluid levels, and I was told many times that they weren’t sure when I was going to have her, and every day I could stay pregnant upped her chances. She was born via c-section at 34 weeks 3 days gestation. I had shots of steroids weeks prior to to help mature her lungs. She weighed 3 pounds and was so tiny, but completely healthy. She had no breathing issues, just digestion issues. She spent 5 days in the NICU and 9 days in the step down nursery. I couldn’t go to see her til the day after she was born. I had not one clue what to expect in the NICU. I had never been in one. I would have liked it if I could have seen it prior to her birth, because they KNEW that this was where she was going to be going. I was intimidated by what went on in the NICU. There were babies on ventilators and one on the oscillator in the same room that my daughter was in. The wires, tubes, machines, alarms – they scared me. No two ways around it. I had no idea what I was ‘allowed’ and ‘not allowed’ to do in regards to caring for my daughter. She was in an incubator, and some of her nurses were great in explaining, answering questions, and showing me what and how to do things for her. Other nurses treated me with much less respect and seemed bothered by me being in their way. I wish that there had been a social worker,or an advocate who could have explained things to me and helped me to understand and work threw the ton of emotions I was feeling and explain to me what my rights as a parent were. When they moved her up into the step down unit, things were awesome. The nurses in there were phenominal.
I can’t say that I’ve ever had nightmares or PTSD from our experiances during those two weeks. They did an excellent job of taking care of my daughter, but informing and having any care for hte parents was lacking. That’s where they fail, and after reading threw the comments, it’s safe to say that it’s a consistant problem in almost every NICU.
Thank you for being a voice for all parents of preemies. You’re going to have a hell of an impact, I can see it already.
I agree with the suggestions to have an advocate for NICU parents, and to provide CBT support groups. My daughter was born at 28 weeks in 2004 at less than 2 pounds. (She is a healthy child today.) I saw the NY Times article, too, about PTSD in NICU parents and, in retrospect, both her dad and I had PTSD following her 59 day NICU stay. He had wicked nightmares and I had panic attacks for more than a year, which eventually resolved. Feel free to contact me if you’d like more info or if I can be of help.
Oh, my goodness. I did not know that, all the after effects of NICU.
I could write forever about my experience, but I have my 3 reading over my shoulder.
But everything you said, yes; it’s true. All the sounds, the trauma, the difficult birth, being told your child will never function.
We heard all of it.
My daughter was born at 31 weeks 17 and a half years ago. I was very young (almost 22) and scared to DEATH. Thankfully, one of the NICU nurses, Verdell, took me under her wing and taught my husband and I everything we needed to know.
We brought Kelsie home after 6 weeks, but at 8 weeks she woke one night screaming. Nothing could console her. Finally took her to the ER where they admitted her and tested for meningitis. It came back positive. She was airlifted out and when we finally made it to the other hospital, we were told that there was a good chance she would die. That time was more traumatic that the premature birth due to no one taking us under their wing and helping us like the NICU staff had.
I agree with others who have already left comments suggesting support groups, not only for parents, but for the entire family. The day after Kelsie was born, I had two sets of parents, my sister and three nieces there, asking questions and looking just as traumatized as I felt.
I read your blog every day but have never posted. I had my first baby in 1971 at about 28 weeks. He was in NICU at Orange County Medical Center in California. He was doing better, came off the oxygen after a week or so but then suddenly became worse and they told us he wasn’t expected to live. We weren’t there at the time (big regret) and by the time we got to the hospital he had died at 2 weeks old. They put us in a room by ourselves where we sat not talking for what seemed like a long time. I finally went back into the NICU to see my baby one last time and the nurse asked me if I’d like to hold him. I had never been able to so I did and sat and rocked him until the nurse had to take him away. I will be forever grateful to that nurse and wish I could remember her name to thank her. I know things have changed alot but the ability to touch and hold your baby when you’re in the NICU really helps and for them to offer to have the parent or parents to hold their baby even after they’ve died helps too.
Nicole Singleton says:
I think it’s great that you have the opportunity to speak on behalf of others.
This didn’t happen to me, but a good friend of mine. She went into premature labor at 23 weeks gestation. The Drs gave her every drug in the book to try to stop her labor, but after 2 days of trying she ended up giving birth to her son, Liam Randall Torrico. The nurses/Drs tried to put tubes down his throat to help him breathe, but his air passages were too small/under developed and he ultimately passed away approx. 15 mins after he was born. The part that I think was most insensitive and in need of improvement was that after Liam passed, Holly had to stay in the hospy for another day while her Drs checked her out, etc. and there was a nurse that kept saying “too bad you didn’t make it to 24 weeks… I see babies born at 24 weeks who make it all the time, but never 23 weeks.” It made Holly feel very guilty like it was HER fault that she couldn’t keep her son inside for JUST one more week. It wasn’t her fault at all – she didn’t know she had an incompetant cervix – but how rude of the nurse to say that to her. I understand that Drs and nurses get kind of numb to the emotional side of medial emergencies and death, but I feel like BECAUSE in the situations where parents are losing their children there is nothing that can take the pain away, that murses and Drs need to be trained to be more sensitive to not make the pain worse than it already is.
Sorry this got so long, it’s hard to convey the story correctly from a second hand person’s perspective, but I figured I’d try to write about it instead of asking Holly to – Liam’s first birthday would have been this past Monday and Holly’s having a hard enough time without having to re-visit that horrid experience to write this.
Here is Holly’s blog if you want verification that Liam existed, or if you want to contact her directly for more information.
My continued thoughts and prayers go out to you and your family.
Shannon Jones says:
My twin boys Hayden & Henry were born VERY unexpectedly at 28 weeks (placenta abruption) on 3/11/2008. Hayden 2lbs 10oz and Henry 2lbs 1oz. They both spent 11 weeks in the NICU. I read someone’s comment about a support group on site at the hospital and think this is a WONDERFUL idea. I would have utilized this and now would be willing to lead/volunteer for this if available. I certainly know that the stress of that LONG 3 months has taken a toll on my mind and body but I never have felt like I can admit it or discuss it. I feel like the only thing I should feel is greatful, greatful that my boys did survive (although not without some complications we still deal with daily). Your post today really make me think maybe I should start talking about it. Good luck with the UCLA study. Take care of you and Binky. Hugs from Iowa. Shannon
Quite honestly, I can’t even imagine going through what those families and your family have gone through. I don’t have children yet. However, I ABSOLUTELY cannot imagine someone better to speak on behalf of so many families that went through such a trauma. You are extremely articulate, open, honest and are doing it for Maddie. I can’t think of anyone better to be a part of that research.
What a great thing you are doing! My son was in the PICU with croup for 2 nights (which is nothing compared to what others have dealt with). It was the hardest thing that I have ever had to do. Not only seeing my 18 month old child being hooked up to machines, hearing alarms, having people rushing in the room, etc. but seeing the other families suffer. As we were leaving the PICU, a mother was having to say goodbye to her daughter with heart failure. This vision haunts me to this day. I am not sure if I had PTSD, but I was seriously depressed for several days after we got home. I could not and still can not get over all of the sad things that I had to see–not only with my son but with other children. It is such a sad place to be. Our PICU staff was great but I think that they should talk to you about PTSD. I went up there a few weeks ago to take some movies and books and to thank them for their help. All of the emotions came back and I left the PICU bawling. There were more sick kids in there and more parents crying–just like I had been several days prior. It is amazing to me that this goes on every minute of every day. I can not imagine being a nurse in the PICU. They are truly special people.
.-= Katy´s last blog ..Amarillo =-.
rachael s says:
surprisingly, we had a relatively uneventful nicu stay, even with all the initial obstacles my little ones faced being born at 29 weeks. the girls had twin to twin transfusion, which caused some complications, but still all three of my babies did quite well. our nicu did have a support group, but since the hospital they were at was 45 minutes from home + i had an older daughter to take care of after being away for 8 weeks on bedrest in the same hospital i never got a chance to attend a meeting. the one thing that i really think would have been helpful would have been to have a support person for us, as the parents. almost like a caseworker or a liaison, assigned to a few families so that they could spend time focusing on their needs. there was one wonderful woman who acted as that person for the entire nicu, picu + peds units…but she just couldn’t be everything to everyone so visits with her were too brief. luckily our dr’s welcomed our input + included us in every aspect of their care, but i know that not every dr on staff there was the same. we just happened to get on the beginning of a good rotation when they were born. we had trouble with certain nurses + it would have been helpful to have someone to talk with about how to handle them. it also would have been nice to have someone come over and hold our hands, pick us up . to help us stay hopeful + positive. to be honest, but kind. to translate + help us cut through the fog.
.-= rachael s´s last blog ..Climbing. =-.
My daughter was born at 31 weeks and spent 7 weeks in the NICU. There was very poor communication in our NICU, and that caused 95% of the strain we experienced while we were there. Our daughter had a murmur we didn’t know about, because everyone thought someone else had told us. I was given test results for the wrong baby, and when our daughter recovered from NEC, we missed her very first oral feeding because the nurse couldn’t be bothered to let us know they changed her care times. They also fed her formula because they “couldn’t find” my frozen breast milk. Instead of calling to check, they just assumed I had stopped pumping.
In every instance, we got nothing but defensiveness and hostility when we tried to address these communication issues with the staff. It made a hard situation much worse. Their take on the issue is that they see lots of babies, and things like murmurs, first feeds, etc happen all the time and just aren’t a big deal. They totally failed to see that to each family, all the little milestones and events in the NICU were a HUGE deal for them!
Were almost 4 years out now, and it still makes me SO MAD!
I hope this helps in some way. Our pediatric residency program didn’t want to hear any of this. I’m so glad UCLA is enlisting parents to help educate.
.-= Kristie´s last blog ..CDC Considers Promoting Routine Circumcision to Reduce HIV Risk =-.
Two days before I turned 13 my mom had my brother. He was born at 31 weeks and weighed in a whopping 3.9lbs and was 15 and 3/4 inches long! We spent 5 weeks in the NICU at Miami Children’s Hospital. Fortunately for us my father worked as a nurse in the ER of the hospital my brother was born in so we were treated a bit differently i guess you could say. During those long 5 weeks, we went once a day EVERY day to visit my brother. You’re right Heather, the only things you hear are the alarms, breathing machines, and crying babies that belong to OTHER babies. It’s tough to focus on your special time with your child/sibling when you’re constantly distracted by the other sounds. The first day my mother was allowed to see my brother his nurse did NOT allow her to hold him. My mother was 3days post-Emergency C-section for a baby she waited 13yrs to have and a nurse wont let her hold him? Thankfully another nurse nearby saw the longing in my mother’s eyes and fulfilled her desire to hold her son. If there was one thing I would suggest to pass along it would be this: Parents/siblings we’re not just another set of people coming to see a random baby. We’re emotional basket cases who are so excited that we have a new life in the family, but so totally freaked out b/c of being in the hospital. We understand the nurses want to care and heal our baby, BUT if you could please do so without a calloused attitude that would be GREAT! We didn’t ask to be in the NICU so please help to make our stay as “enjoyable” as it could possibly be under the circumstances. Thanks!
.-= Meghan´s last blog ..keep me burnin burnin burnin =-.
Aunt Becky says:
If you want my help, lover, I have a post about this. An old one. Email me.
.-= Aunt Becky´s last blog ..Television Husbands I’ve Loved And Lost =-.
Traci McKee says:
I have 2 children. Nate is 2. Abby is 1. Nate was born at 32 weeks gestational and Abby was 30 weeks. Nate was in NICU for a week (my miracle baby) and Abby was there for 6 weeks, the word “miracle” is an understatement for her as we experienced many ups and downs.
I’m not sure if this is common or not, but something that the hospital my children were born at has, is a NICU waiting room for families. It’s next to the NICU and away from the regular waiting room. It has recliners, couches, tv, and a shower in the bathroom. It’s a new addition that I recently saw. We live 2 hours away from the hospital and this would’ve been extremely convienant considering how far away we live, and especially with how high gas prices were when Abby was born, and how critical her condition was.
Two weeks after my oldest daughter turned 4, she sustained a traumatic brain injury from a car accident. She was in the PICU for 6 weeks. Like UCLA, Loma Linda is also a teaching facility. She got excellent care during her stay. However, because it was a teaching facility, we had to leave her room everyday while they doctors did their “rounds” with all the medical students. I absolutely hated that, especially during the first two weeks when we still did not know if she would survive. First of all….how germy is that??!! Sometimes there would be about 15 people crowded into her room. Someone could have a cough or something! I just always felt so gross watching so many strangers gather closely in her room when her health was at such a fragile state. And also, being asked to leave her room so a bunch of strangers could gather there and talk about her as if she were just a “case study” was always so hard for me. And a few times I would linger just outside the door and try to hear what they were saying, and if a nurse saw me, she would actually escort me to the waiting room! I always, always protested and said, “But why can’t I be there to hear what they are saying?” I always felt so excluded, when they were in there talking about MY child! It just didn’t seem right to me. My daughter was in a coma most of that stay, but you never know what they hear and understand while in a comatose state, and I always worried that the doctors were in there discussing her prognosis, painting a dim picture of what her recovery would be like, “if” she were to wake up — worried that she would hear that, and then not feel like fighting anymore.
Anyway, I don’t know if they will ever change this when it comes to teaching facilities. I’m sure they have their reasons for not wanting the parents in the room when they make their “rounds” but it sure never felt right to me. If I could vote to change something, it would be that.
Oh, and also… I agree with another person who commented that it would be so nice if there were a place to eat on the same floor as the PICU. No parent during that time wants to venture too far away from their child. I would often just skip meals because I simiply did not ever want to leave her room. Just in case.
.-= Katrina´s last blog ..the squatter =-.
Heather, What an amazing opportunity. You, Mike and Maddie have already made a change and continue to do so! Best of luck with the symposium. Rock on! Keep doing what you’re doing! Sending you hugs XX
Annie M. says:
Hi – my twin boys were born at 24 w, 6 d and spent 3 1/2 months in the NICU. I left the link to their blog (though I hven’t updated it in 3 months ) and would love to provide some insight on our time / experience in the NICU. I have no doubt I’m suffering, and will for some time, from PTSD but thankfully my boys are doing relatively well, all things considered. Email me if you’d like to hear more. Thanks-
.-= Annie M.´s last blog ..It’s Logan’s World…We’re Just Walking Through It =-.
Hi Heather. I have never commented before, but I felt compelled to do so. My twin boys were born at 28 weeks on June 20, 2008. We had a wonderful experience at our NICU. They had scrapbooking 1-2 days per week and they provided all the supplies. It was wonderful to talk with other parents and listen to their stories and of course, to start making memories of my babies’ lives.
There were 2 not so great experiences. I was so sick that I didn’t get to see the boys until 24 hours after they were born. My first trip up to the NICU was overwhelming. When I got there and met their nurse for the day, she just immediately started on their vitals, how many spells they had, and using all of this NICU slang and terminology that I did not understand. I don’t think she knew it was my first time up there. I had no idea what she was talking about and wasn’t really listening, just trying to peak at my boys. It would have been nice if they would have sent a NICU nurse or neonatologist down to my room to give me the specifics on the babies. That way I wouldn’t have had to rely on secondhand information from my husband and parents. I already felt so helpless and then I felt stupid for not knowing what she was talking about.
Secondly, after about 4 weeks Hayden was diagnosed as being an MRSA carrier and moved away from his brother into isolation. The entire day we found out I kept thinking more and more about this and I finally asked the doctor if it could have been a false positive. He said no, he had never seen that. Ultimately, he ended up ordering another test and it came back negative. Had I not followed my gut, then my son would have been isolated for the remainder of his NICU stay. I think any time there are serious test results, parents should be encouraged to ask for a repeat test just to confirm. Those 2 days were the longest and hardest of our stay there and it all could have been avoided. I know these tests are expensive, but seriously, what is another $1000 when you already have a $1 million dollar bill
You’re journey is a heartwrenching one and also one that gives hope to so many. Thank you for your poignant words.
Your blog is amazing, and although I don’t know you, I want to reach out to you and your family through the internet and take your pain away, which I know is impossible.
More times than not, I cry when I read your posts, for your pain and for my own.
My second baby, Paul, was born in 1996 after 28 weeks at 2lbs 4 oz and was in the NICU in metro Detroit for 6 weeks. He was sent home at not quite 5 pounds and passed away, they say from SIDS, three days later. I would not wish that experience on my worst enemy. And although we had another full-term baby a year later, my marriage crumbled and we divorced.
I moved to Florida and was blessed to meet and marry a wonderful man who is a amazing step-dad to my two older kids. A year later, we found ourselves surprisingly pregnant. I was considered very high risk since not only did I have the history of “unexplained preterm birth” but I also got to be labeled “Advanced Maternal Age” since I was over the magic age of 35. The pregnancy was going along great until my water broke at 30 weeks. After almost 2 weeks of hospitalized bed rest, George arrived at 3lbs 12 oz which looked GIANT compared to some of the babies at Shands Hospital at the University of Florida. The care we received at Shands was unbelievable – both for our baby and for his incredibly freaked out mommy. I really didn’t think babies came home from the NICU and lived. I feel blessed to have moved to Gainesville where a Level III nursery was available to us. George is three now and is amazing, it’s hard to imagine him ever being so tiny.
A major improvement in the NICU, and maybe they’ve changed a lot since 1996 when this was a MAJOR issue for me back then, would have been somewhere to take my then two year old while I was with the baby (he wasn’t allowed in the NICU). I was a stay-home mom, new to the area, without family close by and finding childcare so I could spend uninterrupted time with Paul was tough. They did have “family” rooms available, but only two of them and they booked up quickly.
Ten years later, Shands didn’t have any family type facilities at all but childcare wasn’t as huge of an issue for me then.
In both cases, I would love to have had a home-like room to spend a night or two as the primary care-giver of my baby within the immediate area of the NICU. Shands did allow this, but you were in the treatment room which was hardly comfortable.
The March of Dimes in Gainesville needs to be commended for the amazing work they do for the parents of babies in the Shands NICU – gift baskets, scrapbooking sessions, educational classes and various other events including yearly reunions. They are an amazing group of people and we’re proud to support them as a family.
You are so incredibly amazing and strong. I think it’s so wonderful that you can take your experiences and try to use those to help other parents, families, and babies have better experiences in the future. Even when it has to be one of the hardest things in the world to do. I think Maddie is very proud of you and Mike for the way you’re making sure her life really makes a difference. Her time with us was much too short, but, thanks to you, she will have accomplished some truly great things.
You are such an amazing, strong person. I just cant tell you that enough
.-= Erin´s last blog ..9 months…aldready!?!?! =-.
I am just so proud of you Heather. You and Mike are going to change the world in some way, I just know it. Tons of hugs to you today.
.-= Issa´s last blog ..The day of FAIL =-.
Heather, you will do great in this and be a voice for those who aren’t able to speak.
My son was in the NICU for about 7 days, never in serious danger. However he is a twin and his sister was with me. And the two sides of the hospital NEVER spoke. They didn’t seem to understand I had two children. The NICU staff was focused on my son and the regular staff my daughter. It was like we were in two different hospitals. I couldn’t visit my son unless my husband was with my daughter. Yet, I saw other children in the NICU, then when I was being discharged, we could take our daughter in one time to see her brother, but after that when we went to visit him, we weren’t allowed to take her in, so we took turns.
These are minor issues – but while I felt my son was well cared for, I, as the mother, was NOT well cared for. And I think that is the whole point – caring for the parents while they go through the NICU roller coaster.
I think of you, Binky and Mike daily. And it is my hope that participating as an ambassador (seems appropriate) in these type of programs you will gain some comfort and keep Maddie’s legacy alive.
My eldest daughter was in the NICU, not for anything as serious as some, but I still had to go through it. My daughter was born 3 weeks ate and ended up in the NICU for having fluid in her lungs. She stayed in there for one week. The staff in the NICU was great. The neonatologist was great, explained everything to me in terms I could understand. A couple other people left comments saying they would of liked some kind of group support. I would of enjoyed that as well. Maybe because my daughter’s condition wasn’t “as serious” as others, I wasn’t made aware of any kind of group, but I still would of liked to know about it.
This is the first time I have ever posted on your blog, I read it every day and I am amazed by your courage and strength!
My niece was born three months early. My sister was high risk throughout her entire pregnancy. She didn’t even realize she was in labor at first and when she finally went to the ER there wasn’t anything they could do to stop the labor, they had to do an emergency C-section and my niece was taken directly to the NICU, they live in Des Moines, if you need to know for your study. My sister was released 5 days after she was then re-admitted because she got a horrible infection due to the ER C-Section. My niece was in the NICU for three months I went to visit about 4 times since I lived out of town and the few times I was up there I never had a bad experience. It was very hard to hear all the noises I think that was the worst, whenever something beeped I thought something was wrong with my niece. I had to witness a family saying goodbye to there baby he was born with a heart problem and didn’t make it, that was really hard, it still think about to this day. I almost wish that the babies had there own rooms in the NICU so families could have more privacy.
The staff was outstanding very caring and friendly, they explained everything going on. They were very positive and very loving toward my niece, my sister and her husband. It takes a special person to be able to work in a NICU.
Today ny niece is seven and she is doing very well, she has no health issues and she is excelling in school. I believe the great care she received in the NICU is the reason she is so healthy to this day.
Marie Dickey says:
Hi Heather, I just sent you an email, but I thought I’d post our story for you here as well. My name is Marie. I was just introduced to your blog, and learned about you, from a friend of mine, Elizabeth, who went to high school with one of your friends, Jackie.
First, let me say that I am so sorry about the loss of your gorgeous daughter, Maddie. As I read your story, I enjoyed looking at every video, and hearing all about your journey. I know you know this, but she will always be a part of everything you are and do:).
Elizabeth encouraged me to share my story with you. In the fall of 2006, my husband, Ryan, and I, found out that we were pregnant with twins. I remember the excitement we felt, and the overwhelming possibilities we saw ahead. My pregnancy was going fine, when on January 17, 2007, when I was 22 weeks, 6 days pregnant, I became extremely sick, and went to the Labor/delivery at our hospital in Chicago to be told that I had HELLP syndrome/severe pre-eclampsia, and that they would need to deliver our baby boys immediately. I had an emergency c-section a few hours later, and miraculously, Sean Francis and Kyle Nicholas were born alive. I spent the next few days in intensive care, and Ryan spent the next few days in the NICU, trying to be there for our babies. Their prognosis was not good, but, as you know, you just hold on to the possibility. You want your children to be the ones that beat the odds. Unfortunately, Sean, who was under a pound, died on January 19, in my arms. I am so grateful I was healthy enough to hold him and tell him how much I loved him. Because my blood pressure was so high, I wasn’t allowed to go down to the NICU to see my babies until the night before Sean died. The next morning, the NICU doctors called me and told me to come down immediately. My husband had gone home to take a shower, and I just remember being terrified that he wouldn’t make it, and I’d have to go down there alone. Luckily, as our doctor told us, Sean “waited for us.” When he heard our voices, he became calmer, and died about an hour later. We then through our whole selves into preparing a funeral for Sean and continuing to care for Kyle, and hope that he would make it. He had ups and downs, and, unfortunately, he died on Janary 29th.
We are tremendously grateful to the NICU staff, and even more grateful for the MFM doctor that carried us through. We had both Sean and Kyle’s funerals at the hospital chapel, and we were overwhelmed with the doctors and nurses that came to be with us. My high-risk OB suggested we join a support group, and see a perinatal grief therapist. We quickly learned of statistics that suggested how many marriages didn’t make it through losses like this. It seemed so impossible to us, because we were so close, but as we began grieving in very different ways, we saw the need for a place to talk about everything. We found a wonderful support group, called SHARE, that was very helpful, but we feel we owe most of our healing to our amazing therapist! We saw her once a week for about a year and a half after the death of our twins, and I’m sure we’d still be seeing her now if we still lived in Chicago. She helped us so much. I highly recommend it.
Like you and Mike, we were lucky enough to get pregnant again in November of 2007. This time, we were pregnant with one boy, and I was considered high-risk(of course!). I was found to have a clotting disorder that may have been the reason for the severe pre-eclampsia, so I was going to be put on Lovenox, but they ended up treating me with a baby aspirin every day. On July 30, 2008, Luke George Dickey, was born, at 37 weeks, completely healthy! I had no pre-eclampsia this time, but they did deliver him at 37 weeks by c-section to be on the safe side of things. In October of 2008, we moved to Westwood, so I think we live really close to you guys. Luke is the light in our lives, and we carry Kyle and Sean with us all the time. Their pictures are in his room, as I always want him to know about his big brothers.
I was so nervous that I would have this shadow over me, but I don’t. I’m just like any other new mom. But, as I’m sure you’ll find, I think I appreciate him in a different way. I don’t take his good health for granted, and I am so grateful I’ve been able to stay home with him this year.
He is almost 13 months now, and is so much fun. I am a teacher, and I head back to work next week. So, now I’m facing the trauma of putting Luke in daycare, but as my husband reminds me, we’ve been through much worse:).
If you’re ever up for it, Ryan and I would love to have you guys over, or meet up for coffee or something, since we live so close. I just remember how alone we felt, and it really helped us to meet other people who “got it.” We are all members of a club we never wanted to be a part of, but it is what it is.
A while ago, I found a Zen proverb that has provided me with much comfort:
The morning glory that blooms for an hour
Differs not at heart
From the giant pine that lives for 1000 years
I hope this provides you with some comfort, too. You now have my email, and I left my cell phone number in the email I sent to you this morning. I’d love to get together if you are ever up for it.
Continue to take good care of yourself, Marie
Heather, our stay in the NICU was very calm and uneventful compared to most (core body temperature issues related to trauma at birth, resolved within a few days) yet it stays with me to this day….the smell of the soap, the long hallway, the weird glow of the lights….all of it.
The one thing that I think seems to emanate from almost ALL of these comments is a failure to provide effective communication to parents/families. If I remember one thing (aside from feeling helpless) it is how “in the dark” I felt during those few days. A 10-second conversation COULD have changed that….
Props to you, Mike and your family for turning your tragedy into an opportunity for improving the lives of others around you.
.-= wn´s last blog ..watermelon days =-.
My son was a 32 weeker and was in the NICU for 4 weeks (later in the PICU for 14 days: GBS, sepsis and bacterial meningitis). I had HELLP Syndrome and I bled out after my c/s, needed a transfusion and then caught c.diff. I felt like our NICU had no idea how to handle a sick mother with a baby in the NICU. Only one of my son’s doctors (his hemotologist – random) ever came to speak to me (I was hospitalized on the same floor as the NICU for 13 days). There were no attempts to keep me in the loop when I wasn’t able to visit him (any day I had a fever so many). I feel clueless about his time in the NICU b/c I was sick, medicated and everyone just acted like I was helpless and invisable. When I was there, they all acted like I had the plague.
The best thing for me would have been a mentor to help me understand what to expect, the terms, the treatments, what I should be asking the doctors, remind me to write things down, etc.
.-= Sara´s last blog ..Adjusted Birthday =-.
Our daughter was a 25 week preemie. She spent 5 months in 2 different NICUs. That alone should be able to put light on the fact that our family was changed forever. We have an older son who never got to see his sister until the day she came home. How do you explain to a 2 and 1/2 year old that they can’t see their new sister? How do you explain leaving your little boy every single day because you have to spend the next 5 hours at the hospital caring for a sister he can never see? It was the single most horrifying experience of our lives. I only wish the hospitals could have had some sort of support for siblings and counseling for parents on how to help the siblings at home. It might have helped with some of the repercussions we are facing still.
The video of Maddie made me cry!
I hope one day every NICU will have Friends of Maddie bags to help the parents survive what is such a stressful time.
Huge hugs to you, Mike, and the rest of your FoM team for putting the work into this.
You are so inspiring and so loved by all of us.
.-= PrincessJenn´s last blog ..EWW, EWWW, EWWWWWW =-.
What a great opportunity for you. I know that you’ll do a wonderful job getting your thoughts across to the doctors and nurses. When my oldest was in the NICU after his premature delivery, I remember feeling left out of the loop a lot. Things were happening to him and I would often be told as an afterthought. Most of the nurses were great, but it can only take one stinker to ruin your day. I know they are busy and stressed, but a kind word of encouragement goes a long way. I’m not much of a hugger, but the nurses who gave me a little squeeze will never be forgotten.
Also, how doctors and nurses deliver news is so important. The 2am call telling me that they thought he might have condition X, wouldn’t know for sure for a few days, but if he has it, it is usually fatal and then hanging up…..well, I can’t imagine they were taught that in medical school.
Our hospital had a support group for parents of hospitalized preemies, but (maybe selfishly) I couldn’t stand the thought of listening to everyone else’s problems when mine seemed so overwhelming. I think I would have benefitted from a volunteer/staff person who would listen, instead of a group scenario.
The Post Traumatic Stress information was very interesting to me. I definitely went through the whole scenario of relieving every moment over and over in my mind, unable to sleep, thought I was losing my mind, etc. I never really realized what it was until my second child had his first of many seizures, while in my arms. It scared me to death and during the many months of trying to figure out what we were dealing with and what medications to take, I really thought I was going crazy. Hour after hour I would relive the whole thing, I often wondered if I’d ever be able to close my eyes again without reliving the entire experience, minute by minute. Thankfully, time has healed much of this (13 years??), but the smell of hosptial soap still stops my heart.
Heather, as you said in your entry, what I remember most about the NICU (we had a relatively short stay, luckily) was the NOISE. Whether visiting to rock my baby or struggling to nurse him, I was so rattled by that constant symphony of beeps and alarms, and felt sorry for my son who had to live surround by that (with no peace) at the beginning of his life. it would be great if Nicus could provide more “quiet space” for families.
.-= StrongRhetoric´s last blog ..Mini Me =-.
Marybeth Maxwell says:
Nearly 16 years ago, my twin boys were born at 28 weeks. At that time, although we had the highest level NICU in the area, there was no way to stay with your child. Every day I would get up, call to check on their night, straighten the house, shower and eat a bite, then head over to the hospital at about 11:00am. Then I would sit with each of them alternately because they were on two different sides of the Level III NICU. I’d pump and freeze in the huge storage freezer, hoping that they would actually one day be able to be nourished by the breastmilk I provided. Around 6pm, my hubby would come and we would eat in the cafeteria during shift change to stay out of the way. Then it was back to the NICU but this time we could trade out sitting at the bedsides of our boys. Around 12 midnight, after talking to the night charge nurse, I’d head back across town and crawl into bed exhausted.
Though while you are going through it, it seems you just kind of go with the flow. You simply do what has to be done. When the child next to my son passed away one day and I was left outside the unit wondering what was wrong, I think the reality hit that one or both of my children could die. It was not pretty and I didn’t stop shaking for weeks.
So the worst was not being able to be there all the time…or be pushed out of the hospital in a wheelchair holding a brand new baby. And the times that the worry was so numbing, I wondered if there was going to be anything left of me when it was over.
But the best was seeing those tiny little milestones that others take for granted. Hearing my son, Bryce cry for the first time. He was 5 weeks old but because of the vent and c-pap, no sound emerged when he cried till that day. Or the realization that these children that you have been visiting every day for the past 10 weeks are actually yours. There were days that I felt like they belonged more to the doctors and nurses than to me and my husband.
When they turned one, I had a semi-breakdown because of PTSD. It was like all of the feelings that I didn’t have time for then finally pushed to the surface and couldn’t be denied anymore. I am still on anti-anxiety and anti-deppression meds. But if that is the price that I have to pay for two healthy teenagers, I would do it all again in a heartbeat.
I think of you and Mike and Maddie everyday and pray that Binky will have the wonderful life that Maddie missed out on. I never met her, yet I still miss her with an ache in my soul. I can only imagine what it must be for you. You are in my prayers always…
I am so touched by your story and your journey. My son was born at 31 weeks and I’d be happy to share the story. We have had many tests and treatments for his continued GI issues at UCLA. Please contact me if I can help in any way.
Janet and Zack
.-= Janet´s last blog ..July…where have we been? =-.
Short answer: Increased parent communication/support via phones to the waiting rooms and staff who can call or visit families in person to keep them informed & comfortable during the ICU experience for their child.
These Parent Liasons (as one Children’s hospital called them) need to be more than gracious volunteers, they need to be savvy social worker-types who can share information without breaking confidentiality & medical protocol. People who can come out and explain “You can’t come to your child’s bedside right now because we’re having an emergency in that area but IT’S NOT YOUR CHILD, please wait.” or “You can’t come to the bedside because they are intubating and here is a calm description of the procedure and the x-ray that will follow” And they need to be present 24/7, assisting Social Workers & clergy in ER and ICU (PICU, NICU, L&D, etc)
I think greater attention to the Parent Liason role might reduce the trauma you are describing. I know about this topic because I held 2 of my sons as they died on the ventilator in NICU, I took home 2 more babies who survived NICU and are healthy today, I delivered stillborn babies in sterile operating rooms and ERs with minimal psychological support AND I worked in hospitals and Emergency Rooms for years.
I’ve seen a trend of staff permitting parents to attend codes but it sounds like it may have been too damaging to you to see your daughter’s last resuscitation efforts. For me it was the end of the trauma, my sons deaths were the most peaceful part of their NICU course, even though one was being given CPR (the other was DNR after coding twice that night). I wonder what was different for me? What do you think medical staff should do in that split second when they need to size up the family’s emotional needs and the patient’s physical needs? Disruptions from overwrought family could interfere with the resuscitation but there is a common thread of PTSD and anxiety over the “What ifs?” that happen during ICU procedures. How do you suggest the medical staff handle it?
I’m happy to share some things about my 4-week NICU experience, which I’ve been thinking about ever since reading that NY Times article myself. Overall, we had a very positive experience. My son was a 32-weeker, in for 4 weeks to get his suck-swallow-breathe reflex. No other complications (those all were minor and came later.) I felt very supported by a majority of the nurses.
I am very level-headed in a crisis, and so I guess we gave the impression that we were doing really, really well. Our social worker, while trying to be helpful, kind of gave us information on the fly — we had no context for all she told us about in those first days. Like, “What happens if the places you call to install a car seat aren’t available for four weeks?” I didn’t really see her as an emotional resource, if you know what I mean.
We had wonderful nurses (and some bad ones) and one stands out: While I was visiting, she was making conversation and, while updating the files, said something like, “You know, a lot of moms I’ve met feel cheated that they didn’t get to experience a whole pregnancy.” A couple of things like that. She read my mind — all the things I hadn’t been able to find in the library’s (limited) selection of preemie books.
What I felt the most need for was a type of parent liaison… someone who could provide practical and emotional support. Someone to complain to when you get the “evil” nurse, or when your hormones are bottoming out, or how the hell are you supposed to pump two hours a day? Someone who’s been through it and can help you get to where you need to be.
Actually, I have the perfect name for it: We need NICU Doulas!
My daughter was born at 33 weeks and while I feel blessed she was only in the NICU for 15 days, I can relate to what many are saying about not having a support group available at the hospital. We encountered a few nurses who would take the time to really explain what was happening and who tried to reassure us but it would have been extremely helpful to have a support group within the hospital that we could turn to for questions, concerns, etc. Feel free to contact me if you would like more.
One of my dear friends Jen’s daughter Aviana has been in and out of PICU for the past couple of months after being hit by a car in June. You can read her blog here http://avianareese.blogspot.com/. Her latest post and your latest post are so similar – both of you watching videos and remembering Maddie and Avi when they were well. My heart aches for you both – as a mother of a teenage son, I cannot imagine losing him and yet, there are times the fear of my life without him knocks on my door. Usually I try not to answer, but on those rare occasions I do, I am brought to my knees.
Mrs. Wilson says:
I’ve never had any NICU experience, but just want to encourage you. Maddie will be making a difference in this world for many, many years to come.
.-= Mrs. Wilson´s last blog ..home is where your stuff is =-.
Honesty from the doctors and nurses about your baby and the condition your baby is in. It’s a scary time, but it’s scarier when you don’t know the truth about what is happening.
My baby did not have to go to the NICU, but she was born with the chord wrapped tightly around her neck twice, tying her arm to her head. She came out on her own so the doctor did not have the chance to unwrap the chord before she was born and she didn’t breathe for quite a while after birth. Suddenly we went from one doctor and one nurse with me to 10 nurses and 4 doctors and oxygen on the baby. They kept telling me and my husband “don’t worry she’s fine”, “there’s nothing wrong”, etc. but still the doctors and nurses kept flooding in and all we could see was a tiny purple foot that was not moving and there wasn’t any crying. Not knowing what was happening was the scariest thing, I would have liked to have known what her condition was and what they were doing to her, they left me in sheer panic because of the lack of information.
I’ve been following your blog for a while and am so impressed with your strength and honesty. As with many of the other internet people, you don’t know me – but I think of you and Mike often. (Your dear friend Meghan is my lovely step-sister.)
Thinking back to our boys 4 1/2 week stay in the NICU, I felt that my husband and I were as prepared as we could be. We knew ahead of time that our boys would be in the NICU so we were able to tour the NICU and meet all of the nurses. My mother is a hospital administrator and nurse. Before going on hospital bed rest I worked closely with surgical staff across the country in medical sales selling surgical instruments. I have ALWAYS felt very comfortable in hospitals. Again, I know that is not the norm for most people out there in the world.
I was very impressed with the NICU staff where our boys were born. The nurses and doctors were absolutely wonderful. I am still in contact with several and feel like I always will be. The only regret or bad memory that I have of my boys being the NICU is that I never got to see them all together. Two of my sons were released 2 days before my third and it was SO hard. It wasn’t until my 3rd son was released that I was able to sit them side by side and see them together for the first time. IT WAS AMAZING, but I had to wait 4 1/2 weeks after they were born.
Thank you for your blog, thank you for asking, thank you for sharing, thank you for being you. Hugs from MS!
.-= Hope´s last blog ..Kroger – super savings =-.
Our second child, Andrew was a 24.5 week preemie, 705 gm, just 12 3/8 inches long. I’m a Medical Oncologist, but when Andrew was deathly ill after his PDA ligation, for some reason, the staff didn’t think to call us (he had been fine at 11:30pm when I called to check-up after his procedure at 3pm). The whole next day I thought he was doing well when he was fighting for his life. Needless to say, I was totally shocked, horrified and bewildered when we happily wandered into the unit at 5 pm to see him on an oscillating ventilator and needing 80% oxygen. That was hard.
Our story turned out well as about 8 hours later, his lungs improved enough they were able to go back to the regular ventilator and he was back on a reasonable amount of oxygen. However, I will never forget how a simple ?oversight? by the NICU staff could have had such devastating emotional consequences if Andrew hadn’t made it.
On the up side, our hospital has a March of Dimes-sponsored Parent Mentor program and we got really excellent support from a parent mentor who had experienced many of the same ups and downs with her preemie. Also, of all the nurses Andrew had in his 111 days of hospitalization, there was only one that I really, really had a conflict with.
Our experience with Andrew has definitely had an impact on my practice- particularly when I have patients in the ICU and have to hold family meetings to make end-of-life decisions.
Hi Heather & Mike,
I read your blog daily; it is such an inspiration regarding all hardships of life. The two of you have truly amazed and inspired me! My twins were born at 28 weeks, with a similar NICU stay. Ventilators, shunts, shunt infections, revisions, G-tubes, bacterial meningitis, seizures, etc. The one thing that I would of liked more about my experience at the NICU (which may or may not be fixable), was making it feel more “homey” or comfortable. Of course you can never get away from the beeping of alarms, IV’s, etc., but even the kind of chairs you sit in, to the privacy they give (if they can), giving you a privacy curtain, or encouraging us it was okay to stay in a sleep room. I always felt not always welcome to stay in a room since we were there for so long. Good luck with your symposium, and by the eloquence of your emails, etc. I know you will be great and the best person for the job! This is the perfect way to spread “Friends of Maddie” and bring attention to such important issues.
Take care and I hope you’re keeping more things down now!
Thank you. There really aren’t the right words to thank you for what you are doing, why you need to do this and how you go about doing it. So – I’ll just go with a very heartfelt thank you.
Down to the nitty gritty – overall, my NICU experience was a good one (as good as can be) – but there were definitely areas of improvement – that are probably all outlined above. But strength in numbers? Right?
I was told by another mom on the floor who had been to 4 NICUs in 2 years that this one, was by far the “best of the best” and the “Ritz Carltons” of NICUs- whatever that means. But in reading through some of the comments it doesn’t matter where your stay is – there seems to be some common areas of improvement needed.
I’d be happy to give you the long story long if you want details – but I think it boils down to a few themes for me:
1) Personal touch – would it take more than a quick sticky note on our kid’s file to post our names?
2) Breastfeeding – there is enough pressure- the militant breast milk nurses need not apply to NICUs (in my opinion)
3) Know your audience – the approach of any message is important – especially with the background of beeps and alarms or calls in the middle of the night. Bedside manner, people. Bedside manner.
4) Information is power – all too often information was given in dr talk – sometimes I just wanted to scream (a few times I did) – dumb it down for me! Or it wasn’t given at all – when the nurses or drs would leave behind L’s file – we’d read it to see what else was in there. It always felt like we were reading someone else’s diary – it shouldn’t have felt like that as it was our kid’s medical records – but either they wouldn’t tell us anything or would but would use words that almost breed misunderstanding and confusion. So we snooped.
The things our NICU did great:
1) The nurses and doctors that didn’t follow all the noise I outlined and looked me in the eye – explained what was happening and did what they did with love & caring.
2) Support group/social worker in house – she was amazing. She came around, learned my name and just said hello. Simple stuff really. She was concerned with the parents- and how we doing. The group was not really my thing – but I appreciated the option.
3) Wireless internet – sounds lame but it saved my sanity – I wrote a lot while we were there– and honestly I don’t know how I would have been able to get through without getting it “out.” Plus I could avoid human contact for as long as I wanted- no phone calls to make if I didn’t want to make them.
4) Superior facility, space for a parent to sleep IN each room– I hear this is not the norm– most of the rooms were single rooms – that attached to others but there was some semblance of privacy and one of us could always sleep in the room.
Heather, you are making such a difference – the information you will share (and share now), no matter what it is, it shapes the actions of people who hear you – moving forward in their day to day life. It’s an amazing gift you are about to give – thank you.
.-= guarros´s last blog ..What the Twit? =-.
my son was born at 26 1/2 weeks and spent 3 months in the nicu. i can recall the alarms at all times still – he is 19 months old now and spent the first 6 months he was home on an apnea monitor that would go off nonstop. he was in a wonderful nicu – nyu – and those nurses were my saviors. i kept a blog to keep our friends and family informed and id be happy to talk to you. it is amazing you are going to speak at this and to think how much it will do to help others is incredible. i read the article last week in the times and while i was glad to read it, did feel slightly re-tramatized. best wishes on your pregnancy – maddie is watching down and cant wait to see her new brother or sister!
There needs to be more support. Period. I think every NICU should house a support group for the parents, those that are currently there and those that are not. The neonats or OBs (for the moms, obviously!) need to be well versed in PPD, PTSD and know the local PPD groups in their area. EVERY NICU parent, no matter how long or short the stay, shoul dbe given information on those groups and encouraged to contact them. I got a frickin’ sample bag of formula when I checked out of my hospital to go be with my son. (Level 3 NICU was in a different hospital.) How did that help me? It didn’t. Information on LLL for pumping moms, ICAN for those going through a c/s, preemie support groups (on-line and IRL) and PPD groups would help.
My friends were there to listen and offer help. I am so lucky that I am well connected in mommy circles and they all were willing to help me. Meals,child care, a bag full of pumping supplies (!!! best gift ever!), gifts for my kids, people who understood and were willing to talk much later on- those were the things that helped ME.
Give me your email and I will email you our story
.-= daisybv2´s last blog ..I wanted to stab my eyes out =-.
thespohrs at gmail dot com
I want to help you in any way I can I think people need more support with this, I remember seeing someone’s grandchild website that was a patient at the office where I worked and thought to myself it must be so hard I can’t go through this, and it happened to me. I just went through the motions for 11 weeks and then finally it hit me after the fact.
I pray for you and Mike everyday and I am thrilled that you are doing this and the Friends of Maddie.
send me your email and I will email the info to you
.-= daisybv2´s last blog ..I wanted to stab my eyes out =-.
Our NICU experience was o.k. I lived in fear of pissing one of the nurses off. I saw what they did to the moms that got out of line. One nurse went through and put labels on everything after a mom asked her to put her baby clothes in a certain drawer. In my NICU, if you made them mad they would switch care times or give the baby a bath without notice and tell you he was “too tired” to be held. So you would have to sit bedside for 4 hours until the next care time.
There was nothing to do to pass the time except watch monitors. No internet connection, tv or anything. The total lack of privacy was a deterrent. You just couldn’t talk about anything without the whole pod knowing every word so the cell phone was awkward. The night my baby was crashing due to anemia was a nightmare. I watched my baby and all the other parents watched me. I am an introvert by nature and I am probably even more private now. I don’t want ANYONE in my business, good or bad.
There were no support services for parents, period. Nothing. The social worker came through to file Synegis papers and screwed them up so bad we almost didn’t qualify. We had a coffee shop three floors down but we were asked not to eat or drink in the NICU. You had to leave and go out past the guards to use the restroom and of course you had to pass the healthy baby nursery on the way out of the NICU. I remember thinking those babies looked grotesque . They were so big compared to my 1 lb 13 oz boy.
I am different now. My 27 weeker was my 8th baby. I even had 5 homebirths. I know what you feel like after a normal delivery. I just can’t imagine anything that would make the experience more endurable. It just isn’t. It’s a living nightmare.
What an amazing opportunity for you to be a voice of change!
Jennifer B says:
Overall, our NICU stay (101 days) was good. In the beginning, though, nurses and docs assume that you are a druggie or an alcoholic, they didn’t even ask about why my baby was early, and they were def to busy to look at his chart to read his history. And like a previous poster, I was afraid to talk to anyone or ask questions because of being denied the “right” in the future. Then one day I got pissed and went off on a doc and it was smooth sailing from there. Parents need to be kept in the loop about their babies. I couldn’t read his chart lingo. And the acronyms! I couldn’t keep up. I had to write everything down and come back to it later because I couldn’t process the info fast enough. Bottom line, medical professionals forget that their patient is someone’s baby; their heart and soul.
Heather, I have been following your blog recently, and I can’t even begin to imagine what you’ve gone through and continue to go through. We weere one of the lucky ones. I knew all through my pregnancy that I was not going to make it to full term. I have chronic high blood pressure, that was barely able to be controlled from the very beginning of my pregnancy. I was hospitalized at 27 weeks, and my son was delivered at 28 weeks. He spent 4 months in the NICU, and still came home on oxygen and and apnea monitor. I have to say that for the most part our NICU staff was wonderful! The nurses really became a second family and really wateched out for me and my family, not just my son! MY husband is in the nationa guard and was stationed away from home during Gabe’s NICU stay, and they were wonderfully adaptive to his unusual schedule, often allowing him to stay durning the Non-visiting hours of shift change, because that was his first opportunity to see Gabe. And they really watched out for me too. I always called the NICU as soon as I woke up and before I went to bed every night (often after midnight) and they never acted bothered by my calls. Once when I slept in one day they called to check on me because they hadn’t heard from me yet, and wanted to be sure I was ok! Gabe was there for a while, and they put mobiles on his crib, and put him in a corner with a swing. Even brought out a portable oxygen tank so he could be wheeled around the floor in a stroller…these were after he’d been there for a while and was stronger, of course! My biggest problem with everythin there was the lactation consultant. I pumped for 3 months before they even attempted to allow me to nurse, and as soon as I started trying to nurse, he started not meeting his daily intake requirements, because they couldn’t measure what he got from me. Then they decided that he was lactose intolerant…after 3 1/2 months of him being on my milk… That turned into a fiasco, and I finally decided to stop pumping. And the lactation consultant gave me so much crap and made me feel so guilty that I cried for hours! And I still have enough milk frozen that he got breat milk till he was almost 7 months old. But overall, our NICU experience was a good one in as much as it can be. Another thing I really liked, was that my hospital had a follow up clinic for the NICU babies. They saw them there every couple months for the first 2 years, and made sure that he was on track and helped with any intervention that he needed!
.-= MIssy´s last blog ..Gabe’s Surgery =-.
My son was born at just over 25wks. He was in the NICU for 10 wks before passing away due to a blood clot caused by his pic line. The staff I was with at Presbyterian in Charlotte NC were great. They have a female chaplin with an office next to the NICU and her only job is to help NICU parents however she can. She gave us a place to stay while Grayson was going through his surgeries so we weren’t just left in the waiting room. She gave me a shoulder to cry on, she checked on us every day and after his death, she provided us with a memorial service. I think every NICU should have someone that offers this type of support. Our NICU also uses “primary nurses” where you can request a specific nurse to be with your child every day. You really form a bond with that nurse and come to rely on them. My primary became like a second mother for my son and it gave me the ability to be able to sleep at night knowing she was with him. The thing I wish my NICU had was some sort of program for making arrangements for the children that don’t make it. When our son died, we had to find a crematory, call to make all the arrangements, go there the next day to pick out an urn and sign the paperwork and pay. It would have been really nice if there was a crematory that would take care of it for us and possibly offer their services free of charge for those children that don’t make it out of the hospital.
I’d like to know where you saw that story about post tramatic stress. My labor, the NICU stay, and my son’s death were all very tramatic.
Good for you, Heather! I’m sure you will have something very valuable to share with them.
And six-week-old Maddie is, of course, awesome.
That NYT article really validated my personal NICU experience. My son was in the NICU for only two weeks. I’m not sure I met (or meet) the full diagnostic criteria for PTSD, but I needed a lot of therapy to deal with it all.
My son was one of the few non-preemies in our NICU. He suffered a stroke some time in the last week in-utero. We transported from one hospital where I delivered with a midwife practice to the sister hospital across town (and 2 minutes) from my house around 12 hours after birth.
– NICU doctors were fabulous, nurses were great,
– Social workers sucked, sucked, sucked. They would only let me lay down in the “guest” room (since I wasn’t a patient) once or twice, but I wasn’t allowed to get under the covers or use the bathroom. WTF? The social workers at this hospital were only concerned with medical referrals, financial assistance. ZERO attention to mental health status of parents.
– Pediatric Neurologist
deserves a special place in hell for how he dealt with us. Always ran 2-3 hours late for consults while I struggled with hunger & trying to adhere to pumping schedule. Also, the pediatric neurologist showed us our son’s MRI results (75 screens on the computer) in the middle of the NICU with about 15 nurses & other doctors with us while pointing out my son’s brain damage non-nonchalantly and telling us that our son would never walk.
“And I’ll see you in three months at your next check-in.”
I still fucking hate him.
– Care of parents non-existent. I was so upset about my experience that I typed up ten pages of feedback (much positive) and “constructive” and sent it to the hospital.
I still cannot stand the smell of the soup they used at the hospital. I hate it. I almost changed doctors because they used the same soap as the hospital.
I agree with you. How does EVERYONE not have PTSD after being in the NICU? The crazy thing is that I actually functioned really well while I was in the NICU. I was even doing resumes and went on a few job interviews (for grad school internships) while my son was in the NICU. I felt like I was handling it really well while I was going through it. But, I got hit with the whammy of emotions (mostly anger, jealousy and sadness) after I brought my son home.
Sorry for the long comment!
.-= Lesley´s last blog ..How to Feel 10 Years Younger without Botox =-.
If you would like me to email you I would be more than happy to share my experience as a parent of a baby in the NICU. My son spent 4 weeks there and while it wasn’t forever it certainly felt like it. Especially because of many of the circumstances that came to be.
.-= Jennie´s last blog ..Who Do I Thank For This? =-.
My daughter was born at 34 weeks and was only in the NICU for 16 days but to me that was a long time. What I found most frustrating was that the nurses didn’t read the file of information on us. All 14 nurses thru that 2 week time frame would ask me the same questions. “Did you watch the video’s yet because you can’t take the baby home until you watch the videos…’ Yes, we watched them! I also decided not to breastfeed (I pumped) and they (all 14 of them it seemed) kept asking me if I was going to bf or did I want to BF now….. It was frustrating.
I wasn’t able to stay at the hospital with Paula. It just isn’t an option at our hospital. I had to go home at night. I hated that.
When her apnea alarms would go off when I was holding her I got yelled at by a nurse to “look at her face, not the monitor, look at her face!” to see if her lips were turning blue. Talk about a freakin scary experience!
There were some nurses I really liked. What I loved there had nothing to do with the nurses and everything to do with the other families. I met a Grandma whose grandbaby had been there 30 days already. The mom had to go back to work so when the baby did come home she’d have more time off to spend with him. The Grandma and I spent a lot of time talking. She made my daughter a blanket. At the time she gave it to me I started crying.
I liked the nurses who enjoyed being there and didn’t complain. There were a couple nurse who complained a ton. They couldn’t wait to get off work. I get that, but don’t voice it around the parents.
I liked that we were put in a smaller room than the main NICU. We had a room with 4 NICU babies. It was quieter. I liked that.
There was a counselor who came to check on me in the NICU a couple times which was nice.
I think they passed out a cheat sheet of what some of the acronyms meant.
Sorry, this got long. lol
.-= Sandra´s last blog ..Back to school shopping =-.
Ah yes, I remember “read the chart!” Yes, I’ve met with the lactation consultant twice already – STOP ASKING.
We finally wrote up a one-page, 14-point font, bulletted “cheat sheet” on our son and taped it to the front of his bassinet. Wish we’d thought to do it much earlier.
You are doing an amazing thing here.
The blog my name links to should have all our details from our daughter’s 24 day stay in the NICU at Children’s in Boston.
Overall, our experience was a positive one. I do not know if I’d say the same if Lila weren’t here with us today–I can’t know that. I do know that we were supremely lucky to be at this hospital, and I owe Lila’s life to them.
My ONLY complaint, if it can be considered that: I wish the drs and nurses would speak to us in REGULAR words/phrases. Not dumb it down, we’re not morons. But stop with the diplomacy and “HR Speak”. I remember having to ask them more than once the Dreaded Question, b/c I wasn’t sure what they were saying. When you tell me she’s showing signs of heart failure, I immediately assume the worst. But when YOU know it’s not that serious, YOU need to tell me, proactively.
Sorry, end of rant.
Heather, again, thank you for speaking for us. THANK YOU.
.-= Megan´s last blog ..Six. OMG, SIX. =-.
Thank you so much for this opportunity.
My daughter is a former 25 weeker.
I wished the NICU had graduated NICU parents that I could have talked to.
I wish ways of doing things would have been more constant among nurses and neonatalogists (for example: when to give a bath, breastfeeding, how to pump, etc…)
I wished some nurses would not have been so possessive of the babies
I wish breastfeeding would be a priority and not only breast milk.
I wish some nurses would not start the Care time before my arrival when knowing I was on my way and not late at all.
I wish staff would be more respectful and dim the lights and lower their voices
I wish all staff would manipulate my 1 pound baby gently after reading about care and blood flow to the brain
I wish students would be more respectful and less pushy while doing their research – I often saw nurses tell interns to come back but interns insisting on waking up the baby.
I wish NICU staff would have suggested reading Parenting Your Premature Baby and Child The Emotional Journey by Davis and Stein or joing the Yahoo group for moms of a micropreemie.
Ouf I feel much better! Thanks.
My son was fine the first day he was born but as 24 hours passed I asked the nurse in the recovery room if it was normal that my son was orange. She looked at me like I was an idiot and she said “your husband is hispanic!” I assured her that I knew this but that he wasn’t orange! As soon as Alex’s labs were back (they were late coming back) the phone rang beside my bed and a doctor told my husband that our son was a very sick little boy and they were coming to take him to the nicu immediately. The first time I walked (other than to the bathroom) after giving birth was following my son up to the nicu. It was a horrible experience. We were told nothing other than he had an infection in his blood and his bilirubin level was 17 which was “really high”.
While Alex was in the NICU (6 days) we were never told that he was going to be fine. I suppose they couldn’t tell us that in case something weird happened and he died. But the reality is that they knew that he’d need antibiotics for 5 days and that most likely this would take care of the infection. I wish someone had been able to reassure us that we’d be taking our son home with us shortly. It was a very long week. After 5 days I fell apart and crashed the car into the pillar at the hospital. On day 6 my husband, who had decided he needed to drive, nearly hit a cyclist while driving to Stanford. We were at the hospital 20 hours a day and we were falling apart.
The nurses in the NICU were wonderful. They taught me so much about taking care of my baby. They also tried to make sure that I took care of myself, keeping me hydrated etc. They signed me up for lunches and really showed my son some love. The doctors and residents on the other hand could really use some lessons on how to handle the parents. Half they time they didn’t even talk to us but just moved on to the other patients during the rounds, it was the nurses who kept us filled in on what was going on with our baby.
One note to the nurses. Don’t tell a new mother that maybe she should wait outside when you can’t find a vein to get the IV in. It doesn’t make our baby feel any better if I’m not there to watch, and it doesn’t make me feel better either. Don’t be afraid to admit that you’re not the expert on finding difficult veins, just go get the expert (often a flight nurse for some reason) and I’ll be so grateful!
I couldn’t do the job that the nurses / doctors do. My biggest piece of advice to them is to picture themselves in our positions and treat us like they’d want to be treated if the positions were reversed.
Alex just started kindergarten this week and is a wonderful kid. But if you look closely at his hands and feet you can still see the IV marks, a reminder that we’re lucky to have him.
Thank you Heather, Mike and Maddie for making us all stop, think, and care.
I’m sorry if I repeat what other NICU parents have already said, but here are my suggestions. Some of these experiences & suggestions may not apply, so take what you can. My son was born about a month early and was airlifted from our hospital to a major Children’s hospital due to respiratory distress and the need for intubation.
In this instance because we had no idea that he was going to have medical problems at birth, he was born at our normal hospital. Because he was airlifted away and I had a c-section, I was away from him for 3 of the longest days of my life while he fought for his life over an hour away from where I was. I had a lot of time on my hands during those 4 days and it would have been nice to read up on what life was going to be like in the NICU once I was discharged and able to get to the NICU. Again, I don’t know how applicable this is, but I actually had multiple members of the medical and nursing staff ask me where my baby was. REALLY? Is there not a way to distinguish that my child was in the NICU and that was NOT the right question to ask.
Once I arrived at the NICU, I was completely unprepared for the alarms and what they meant. What was good, what was bad, what other babies alarms were good, bad, etc.
I was almost immediately scolded for stroking my son’s head because the nurse said that stimulates the babies and raises their heart rates and so I should have instead let my hand rest on his head. This would have been nice to know beforehand.
I was also instructed that I was not allowed to look at the other babies in my son’s room for fear of HIPPA regulations. Has anyone tried to stare at billy lights for hours at a time? Of course it is natural to look up and around at a baby who is 2 feet away from your baby. Knowing, generally speaking, what equipment is used for what conditions, would have been nice so that we could be sensitive to other parents and their son’s/daughter’s conditions.
We too had babies die, saw babies who’s lives would be forever changed and babies who would go on to lead normal healthy, happy lives.
I felt like the nursing staff was hardened to life in the NICU. They seemed rough and indifferent to our son during procedures and were almost seemed annoyed that we were there so much.
Also, we were not given a warning that NICU babies can have problems further on down the road with mild hearing loss and cognitive delays, both of which our son has had. Our son also did not qualify for insurance to cover the RSV vaccines and landed up back in the hospital with RSV as well as other subsequent medical problems. Shouldn’t it be a law that any NICU baby receives these vaccines?
Early intervention services through our school district (given to us by a fellow NICU mom) have actually been MORE helpful at times than our medical team.
In short, it felt like much of our experience was learned through trial and error and if we had better prepared with literature or a short briefing from some of the medical staff, we could have been had a slightly better experience. Of course nothing prepares you for this life. It sucks no matter how prepared you are.
As I re-read this, I sound like a real downer and want to say that our son is doing much better now and just turned 3. He continues to have challenges, but he’s with us and we are grateful for that gift, as well as all of the wonderful mini-miracles that have occured along the way.
I hope there was something in there to help with your journey! You are so brave!
Hello there – I’ve been reading your blog for some time now…my heart breaks with yours when I read about Maddie, but I am filled with hope when I read of how her life still brings joy into the world.
I dont think I’ve commented before, but in October my niece suffered a rare brain bleed during full term birth and spent 4 days in the NICU until she passed away. It was the worst day of my life, and the moments still haunt me…but one of the shining lights through it all was the team of nurses, doctors and staff at the Johns Hopkins NICU center.
They fought hard for my niece and family, found a tiny closet with a bed in the NICU for us to sleep when they realized we would leave, and cried with my family when they told us that she wouldnt make it through.
It was a horrible tragedy but somehow they made it better in a small very significant way. I hope this helps your research, and my heart and thoughts are with you and your family.
Melissa Locke says:
My twins were in the NICU in Portland for 93 and 99 days. They were born at 25 weeks gestation. Although, the nurses and doctors did their best, we did feel the most comfort we recd was from the other parents we met at the Parent Meetings. NOTHING prepares a parent for the NICU journey.
We did have our share of rude nurses but overall we were happy with the staff and how they cared for the twins. We bought books and tried to learn as much as we could about micro preemies but it was really hard. We really didn’t have a clear picture of what the rollercoaster was going to be like and how it would continue to be hard once they came home.
I would be happy to share my NICU journal with you if you like. Just let me know.
You and your husband are always in my thoughts! The video of Maddie is so sweet, although it did bring me back into our NICU days hearing those “beeps”.
.-= Melissa Locke´s last blog ..My daughter told me off!!! =-.
Hi Heather –
My daughter was in the NICU for 93 days after she was born at 26 weeks gestation due to preclampsia. The experiences that I had, loved and hated were:
During the 1st week my daughter was in the NICU the doctors would talk to me like I was a pro. I remember the 2nd day that I was allowed out of bed and my husband took me to the NICU I had just started talking to Gillian and our dr starts out by coming over and telling us they found a brain bleed, I almost passed out on the spot. Didn’t mention that it was the most minor brain bleed or that any child born could suffer it because of their soft spot and that full term babies probably have them too but aren’t checked for it. This was all mentioned to me by a nurse the next day when I was still hysterical thinking my child was not going to make it due to this brain bleed. It is such an overwhelming place that the first week is like figuring out the 1st day of school at a new school, it takes a bit to get in a routine and really understand what is going on.
What I loved about my experience in the NICU was the nursing staff. I wasn’t allowed out of bed for 2 days after my daughter was born because my blood pressure still wasn’t under control so they took a picture of Gillian for me so I would have it. They did this through out our stay, when I would arrive there might be a picture of my daughter with a sticker that said what she did before I got there. Our 1st family picture is of Gillian sleeping on me in a recliner and I’m passed out and my husband is passed out sitting up in a chair next to us…I woke up and it was sitting waiting for me. I absolutely cherish that picture as a fond memory. And the nurses became like extended family that we still visit whenever we go to that hospital.
Another fact that I enjoyed was the maternity ward encouraged Moms with babies in the NICU to get to know each other especially if they were similar in gestation. The NICU frowned on this but I became friends with 2 people, 1 of which I still speak to regularly. I don’t think I could have made it through those months without their support.
I totally believe that parents that go through the NICU can end up with PTDS. I know for a long time after my daughter came home I felt very alone no matter how many people were physically around me. Something that always freaks me out is there are some ringtones on certain cell phones or if I leave my lights on and try to get out of my vehicle the chimes that go off remind me so much of the NICU that I actually get chills and pictures will flood my mind of all of the different moments there. I’m not sure that these memories will ever go away, it is a permanent scar that no one sees.
Hope this helps. You definitely will do a great job delivering this information. You are a truly amazing person:) Take care.
.-= Barb´s last blog ..Potty Trained!!! =-.
Amy Hendrix says:
I’m an avid reader – 1st time poster.
My daughter was diagnosed with Hydrocephalus at my 18 week scan. We knew she would be a NICU baby from that time on. Here is my story: http://www.i-am-pregnant.com/vip/turtlemom#msg.
We actually had a very good experience, well as good as it could be. I’m going to participate in a similar forum where my daughter was born.
Staffing the right nurses is key, IMO. They were the pulse of the NICU and were invaluable to my family.
Blessings to you, Mike, Maddie, Binky & Rigby!!!
My girls were born at 29 weeks. They are perfectly healthy, yet I can totally relate to the article. They are now 19 months, yet I still struggle with their prematurity and blaming myself.
Some thing I think that everyone who has a child in the Nicu should know, is that it is okay to call in the middle of the night to check on your child. It is okay to call whenever you need to. I was at the hospital all day long, everyday. Yet, I still called twice per night. I didn’t want to be annoying, but they are my girls. Also, I think more information should be given out IMMEDIATELY about primary care nursing. I don’t know how we would have survived without this.
Thank you for being such an inspiration!
.-= Kelly´s last blog ..More Fun! =-.
My experience in the NICU was so different from what many experience, because my daughter was born 11 days late and was considered “the giant” of the NICU. But she wasn’t breathing and had no heartbeat when she was born. Her Oxygen supply had been cut off during the pushing stage of labor and we never did know how long she had been without oxygen. We were told to expect the worst, but she defied the odds and went home 10 days later. What do I wish had been easier for me? Just being in the NICU and knowing what was going on. I spent hours every day sitting with my Boo, listening to the beeping of the monitors and alarms going off, day and night. I had nightmares about it and heard it in my sleep for months afterwards. A support group would have been great. What would I have changed? I can’t think of anything, other than maybe wishing I’d tried harder to get to know some of the other parents. I felt so guilty sometimes, even though my daughter was sick, it was nothing compared to what other moms dealt with. What did I LOVE? The NICU nurses were so great. They were so good at keeping me calm and making sure I was doing ok, all while taking great care of my daughter. I don’t think I would have done as well as I did without knowing they were there.
Heather, this is so great that you are doing this. Uniting the NICU and PICU parents is the best thing we could do to help each other.
.-= Kristin´s last blog ..Our Fair Adventure =-.
Amy Collen says:
My twin boys were born at 25 weeks. My son Noah died after 6 days and my son Sam was in the NICU for 5 months. He is 3 years old now and doing great (other than a few delays). As for the NICU, well what I would change is probably the setting. I think more money should be invested in the comfort of the parents. In other words there should be plenty of chairs, rockers, maybe even beds or couches in the NICU and available to be used at the bedside (a pipe dream I know but worth mentioning). Also better training of the nursing staff if possible. There are a LOT of wonderful nurses out there and we had a bunch of those. However, there were those that obviously did not do well with parents. Hiring practices should reflect that because although you are dealing with the baby you most definitely are dealing with the parents as well. Another thing I would like to see is food brought in to the NICU waiting rooms for parents. Volunteers can easily organize this and it really means the world to the parents (as you well know). You may not want to talk to anyone or deal with anyone but knowing that someone cares enough to make a meal for you just speaks volumes.
Let’s see….I love the idea of parent mentors and a parent network available at the hospital. I also think that the parents should be treated with the same level of care as the child. In other words, completely babied. We parents are EXTREMELY fragile and will break at anything. It would be nice if the staff knew that. No lecturing, no scolding, no anything. Just hugs, love, and food. That would be neat.
What I do love about the NICU is the primary nurses. They become your family. Definitely should continue.
The biggest change I would like to see is follow up after parents leave the hospital. I would say assigning a social worker or parent mentor to a new parent. This person would give calls (or visit) once a week or so to chat with the parent(s). The RSV season is a very lonely one making the parents feel isolated and paranoid. This is a very critical time for services/respite to be offered. I think there definitely needs to be more emphasis on this. I think this is of equal (or greater) importance than the NICU experience. Often times things don’t stop once you get the child home. There are a whole range of psychological issues that the parents have to deal with ESPECIALLY if you have a special needs child. If I were a hospital administrator I would dedicate a whole department to deal with “after NICU” home care.
Thanks so much for this Heather. I look forward to reading your blog everyday. A lot of us do. Thanks for sharing your story with us.
Amy Collen says:
Ah, one more thing I HATED being called “mom” by the nurses. If that is the one thing I could really change. Either learn my name or call me Sam’s mom. Ugh…
My son Lukas was born 4 1/2 weeks early due to my having low amniotic fluid. I was induced when my fluid dropped from 4.6 to 2.9 in a matter of two hours. He stayed in the NICU for 10 days and the worst part was the being so totally alone. There were no support groups, no bonding, we were told not to talk to the other parents… and my ex husband was not any help at all. He wouldn’t even go to the NICU unless I forced him and even then he was always chomping at the bit to leave. I was there 9 out of 10 days and only stayed home that day because the nurses told me to. There was so much information, but none that made sense to me. We almost lost my little boy at 3 days old, but an angel visited him that day and he turned around. That angel was my aunt, who died very suddenly when Lukas was 3 weeks old. I believe I do suffer last affects of Lukas’ NICU stay, between the devastation of seeing him there and nearly losing him, and not being able to fully come to terms with all we went through due to my aunt’s sudden death.
There needs to be more focus on the parents as well as the child in the NICU. We need support from someone else who is going through it. I’ve often thought of writing a book about our experience, and how much things need to change. I hope that others will never feel the loneliness I did. If something can be done to alleviate even one sobbing phone call like the ones I made to my parents, it’s a step in the right direction.
Thinking of you all…
My son was born 7 weeks early! He spent 2 weeks in the NICU. I have one glaring story about the whole experience. One visit, I was standing at the sink doing my daily washing before entering the NICU and a nurse walk in with an expecting mother she was giving a tour of the NICU. The nurse said this is where the Sick babies go and then she said “The sickest babies are at the back, they have a 10% survival rate if there lucky”. I looked to the back and there was my son hooked up to all these machines and that when it dawned on me, reality had struck my son might never come home.
Fortunately he did, but I have learned a valuable lesson about thinking before you speak and I think that doctors and nurses should practice that with a greater sensitivity especially in places like the NICU.
I have other stories about The NICU experience (most good) as well but I thought this one was the best to share!
.-= jackie´s last blog ..Wordless Wednesday =-.
The hardest part for me was having my new born, my baby that was just ripped from my body, sent to a different hospital. That was the worst.
I think what would have helped me was someone to explain to me about the NICU…what is it, what do they do there, how many people care for my child, who do I talk to to get the best and most accurate info on what is going on with my baby’s care. What you can and can’t do in the NICU, what you can expect to see and hear while in there.
You are doing such wonderful things Heather, I really do admire your strength!
.-= Erin´s last blog ..Summertime =-.
Heather Thompson says:
I’ve never written to you but I stalk your blog. I almost lost my twin Parker last month and I had flashes of Maddie throughout the ordeal – he reminds me of her for some reason. I choke up often when reading your stories and seeing the videos/pictures of Maddie.
Quickie: when I was in the NICU I kept reading signs for a support group but it NEVER met because a nurse was running it on the side – so really, no one was in charge of it. I REALLY REALLY needed moms to talk to. I found a couple of moms in the pumping room, but I needed a better connection. A support group MUST be going at ALL times for parents – especially moms whose babies were torn out of their wombs too early! It’s terrifying!
Also…nurses need to know that THEY ARE the key to a positive or negative NICU experience – bottom line.
.-= Heather Thompson´s last blog ..Are They Twins? =-.
I was very lucky that I had one of those hospitals that had a very good support system. The nurses were VERY caring about the parents, they tried their best to put things off till we got there to help like with her first bath, bottle feeding etc.
Our NICU was so great itself too we had private rooms with recliners to pump and the Ronald Mcdonald House had a “Family Room” where we could go in just to take a break from the NICU and get food, drink, check your email, read a magazine or just clear your mind. (The Ronald Mcdonald house really doesn’t get enough credit for what they do for families of sick children)
The Junior League of our city came in every couple of weeks to have a family support group meeting, and also on some days would have another get together usually to do some scrapbooking or something with the other NICU parents.
I really can’t say enough about how wonderful the nurses were to us though even by doing things that they didnt have to. They completely went out of their way to make sure we experienced all the special moments and were soooo supportive about breastfeeding and connecting with our child.
When I would go pump, they would slide little “souveniers” into my bag like her bili “sunglasses”, her little blood pressure cuffs, even just something as simple as the little lead stickers. One nurse gave me the most beautiful blanket and matching hat to keep. They werent suppose to but because it was so rare that they actually have the matching set on one baby she insisted that i take it.
Being there for over 2 months and having the same nurses you become very close and I can’t imagine my life without them. They taught me everything I know about caring for my baby, they taught me how to breastfeed, about diaper care, just everyday things outside of caring for a preemie that you may otherwise learn from your mother or some other parent role model in your life, but we couldnt. We were in the NICU and it was flu season.
The nurses also didnt treat Mallory just as a patient. When I was away they were loving and doting on her like a bunch of aunts and grandmas and it was really precious. They would take pictures for me and print them off, leave them by her bed in an envelope that said “To Mommy and Daddy”.
Also, when anything bad happened they would talk to me in ENGLISH lol. They also never would say anything to make me lose hope, there was always a “she can do this” attitude on the bad days. Being a first time mom I didn’t even realize the severity of the situations at the time and even if I had I still think that their attitude towards things would have never made me lose all hope. They were so so wonderful!
I could go on all day about how wonderful my NICU was. I only wish that all parents got the experience we did while going through such a difficult time and even though it wasn’t my hospital, I was transferred there by ambulance, I will never have another baby anywhere else!
My daughter was in the NICU after birth with respiratory problems and stayed there for three and a half weeks, because they couldn’t schedule her for testing as soon as the should have. She waited a week and a half for a swallow test and another three days for an acid reflux test, both of which were delayed because the doctor told us he was “too busy”. That’s not what you want to hear. They sent her home on Oxygen and gave us no answers. She’s off the oxygen now and we still don’t know what went wrong. Nobody’s taken the time to explain it to us, and now it’s a year later.
She was also in the PICU at a different hospital after a surgery she had on her skull, and they were amazing. The doctor never talked down to me, in light of my NICU experience I think, and the nurses were wonderful at explaining what was going on with the little one. That was a Children’s Hospital, and you could really tell that these were people who were good at their jobs.
Shannon Kieta says:
Fortuneatley No one I know was in the Nicu or Picu, but I did work for chldren’s hospital and I do know how traumatizing it can be for the parents and children for the time they are in for their stay. I think for the staff to be kind and helpful is a BIG plus. And alot of good entertainment, like movies for the kids. Have a lot of things for the kids to watch to keep their minds off of what’s going on around them; especially all the beeping and noises. Have a Pastor or Priest on hand at all times to pray with the families. That seems to comfort the families alot. Have a small table nearby with coffee/tea; bottled water to drink. Alot of people going through rough times forget to eat and drink because they are so distraught and don’t want to leave their child’s side for any reason. Same for food; maybe have packs of crackers or something to munch on. I remember how bright the walls were painted with fun animals on them. That always cheered up the kids. There was a time a nursing home had a dog they brought to cheer up the patients. That may not be allowed in a hospital, but it was a nice idea. It always made the old folks happy. Hope it helped a little! Shannon
thanks for doing this! i don’t have time today to read all the comments, so i might be repeating.
my only experience w/ the NICU comes from 2 of my siblings: my brother’s daughter was in the NICU for the first 6-8 weeks of her life, and my sister is a pediatrician. because i know how compassionate, amazing, wonderful, etc that my sis is (and she’s a mommy to boot), i would never say that doctors don’t care, think they’re above patients, or don’t understand people, as a whole.
but some of them? REALLY need to work on their communication and people-skills. my bro’s biggest problem was that doctors wouldn’t tell him what was going on with mia, or would give him a date that she would come home, and that date would come up, and she didn’t come home, but no one said anything about it either.
it took literally weeks of the family begging for them to do a brain scan. when it showed up that mia had a lot of fluid on her brain, no one explained what that might mean. doctors should never leave it up to parents to get their info from WebMD – they’ll only end up playing the Worst Case Scenario game.
i understand that these doctors and nurses are busy as heck. and since they’re busy trying to save babies, i’ll give them a pass on it but, maybe more hospitals could have a parents’ advocate on board – to explain things, like a diagnosis or just how to read a heart monitor, to act almost like a social worker to see if there are other services the parents need, etc. while caring for a preemie, my brother and his wife were also raising a not-quite-2-year-old, who isn’t diagnosed but shows a lot of signs of autism. parents need info, but a lot of them just lack the time and energy to find out what everything means and how it all works.
Your story is so compelling and you tell it so well. You are in my thoughts most days. I only wish that your story could have turned out as well as ours.
My 2 lb, 13 oz, 29 weeker is now a 20 year old college junior. Her journey, and ours, has not been always smooth but it has been always joyous.
Our Elizabeth came early and with a large cystic mass in her chest. She required surgeries, ventilators, meds and eight months in the NICU. She came home with a trach, ventilator, oxygen tanks, compressors, gastrostomy and 24 hour nursing. After a year at home, the trach came out and we went for our first car ride when she was 20 months old. She walked at 23 months and didn’t speak until she was 3 1/2. But she went off to kindergarten on schedule and, despite significant lung disease, has thrived since.
Even 20 years later, those first years are fresh in my mind. If you don’t mind some words from a veteran, here are a few things that helped us:
–No one understands what you’re going through; it doesn’t matter if your stay in the NICU is hours or months. Just know it and embrace it. Don’t try to recruit the reluctant. Tighten your circle of support to those strong and faithful who can go the distance. Support for families in the NICU is not for the faint of heart. If you truly understand and internalize this message, you’ll be better able to understand and forgive yourselves and those who couldn’t.
–Spend as much time as possible at the hospital. If you can, try to be there for shift changes and rounding. Read the chart, listen and learn the lingo. Become a fixture.
–But stay well. Eat regularly (and NOT in the hospital cafeteria!), try to get enough sleep and exercise.
–One of the best features of our NICU was their commitment to Primary Nursing. We had 5 Primary Nurses (3 day shift, 1 evening and 1 night) and so had a good chance of seeing a familiar face each shift. It was heaven-sent as those nurses took care of us as well. I wish every ICU would follow this model.
–Understand that the transition from the acute, drama stage to the long, chronic stage is just as difficult as those first scary days or hours. Pace yourselves for the long haul. Take breaks, go away for an afternoon, an evening out or a long weekend. We had weekly date nights over margaritas that saved our sanity and our marriage.
–Make a list of duties that can be outsourced. When someone says, “Give me a call if I can help”, give them a duty. Our list included things like: walk the dog, shovel the walks, invite us for a quiet dinner, scrub the kitchen floor. Because no one understands the NICU experience, it’s difficult to know how to help.
–Designate a call center. My brother-in-law stayed home by the phone. My sister stayed by our side and would update him regularly. Everyone called Bob for the news. We told our story only once. It was a godsend in the days before CaringBridge and FaceBook!
–Celebrate whenever you can. We celebrated each month with a sheet cake and birthday candles. The nurses loved it as much as we did.
The NICU is a life-changing experience. Remember that and reward yourself for surviving it.
Sharing your experiences with a wider world is wonderful gift. I hope your students at UCLA will appreciate your wisdom.
I have a friend who had her son at 25 weeks.
He weighed 1 pound 12 oz. and was 11.5 inches long.
I would visit the NICU at CHOC and I was overwhelmed with emotion…concern, but mostly love.
On my blog, http://www.coopersx4.blogspot.com
I have a link to her blog, under Baby Talan.
He’s over a year old now, and doing well.
.-= Sara´s last blog ..homesick =-.
I am so glad they asked you to speak! Of anyone to ask, it would be you.
My son was born with multiple problems with his heart, thankfully nothing life-threatening. But we knew he would eventually need surgery to correct the problems. He had open heart surgery when he was 18 months old and was in the PICU. Walking in the first time to see every machine he was hooked up to, IV’s, wires, etc was overwhelming. What helped me out greatly was having the nurse explain each and every one. The nurses are what made the situation bearable. Most were just amazing, but what made the special ones the best were the ones that took the time to talk to the parents, explain things, and just check in and see how we were. We had one or two that were nice, but it was almost as if we were ghosts in the room. One nurse told me to take a shower and reminded me that he was sleeping from the medicine, so I wouldn’t miss anything. That shower felt so great! And it was so nice of her to recognize that I needed a break and to take care of myself too. It is just good old-fashioned bedside manner. Some have it, some don’t, some may have forgotten it.
Oh, having doctors explain things to you as a collegue is frustrating. Don’t talk down to us like we are idiots, but just explain things thoughorly, even drawing things out helps. I know they are busy, but they don’t need to make us feel like we are holding them up by asking questions about our child they are taking care of. Again, just good old-fashioned bedside mannter.
Please email me anytime if you want more details. I love talking about it! I am also a friend of yours on FB.
~Hugs from TX
.-= Alli´s last blog ..Paying It Forward =-.
Oh! I remembered when my sister had twins that were in the NICU. When we visited, I remember how there was virtually no privacy. And we were instructed NOT to talk to the other parents. I remember my sister saying how she wanted to badly to talk to them, not to be nosy, but to just talk mother to mother. They were all experiencing the same things. It was very overwhelming seeing all of the machines, sounds, etc. It was just a cold environment. The nurses were great though.
.-= Alli´s last blog ..Grandmother, You Will Always Be In My Heart =-.
Thank you for giving us the opportunity to share. My comments are specific to the UCLA Santa Monica NICU. My son was there for a little over a month.
1. It was very lonely for parents. We were encouraged NOT to talk to each other. The nurses seemed to think it would be a breach of confidentiality or something. My son Sam was there for 32 days and I never spoke with one other mom. And I so wanted to.
2. A primary nurse who understands the family’s desires for their child’s care. I fully understand that the doctors and nurses primary concern is for the health of the child but some things can be discussed, for example, holding versus not holding the baby. The nurses in Santa Monica NICU had very different beliefs regarding kangaroo care. My husband wanted to hold Sam at night and it drove the night nurses crazy. Because he is a doctor at UCLA they did not comment to him but instead criticized me and complained to me the next day. It was horrible for me and broke my spirit.
3. A consistent message regarding breastfeeding. Each nurse had a different opinion regarding breastfeeding. Some felt that it was better to nurse on one side then the other felt you should not switch sides, etc. My son was a good eater, thank god, because I got so much advice it made my head swim – and this wasn’t my first kid. I had done this before. They also had lactation consultants there to mix it up a bit more.
4. Opportunity for support. My son was born at 32 weeks, but our other son died in utero at 22 weeks and was delivered 10 hours before Sam. It was a hard time, I was scared for Sam and confused about the other baby. A very nice chaplain came to speak with me but it was always at random times and usually when the respiratory therapist or doctor happened to stop by. I suppose I could have tried to schedule a time but it never crossed my mind. It is hard to think straight when you are there.
4. Death certificates. I had to wander the hospital to find the right administrative office to get the baby’s death certificate, wait while this woman tried to find the list of all the dead people (perhaps from that week) and see if he was on it. She also answered about 5 phone calls while I waited. It’s not her fault, she has a job to do, but it would have been nice if the seriousness of the moment had been recognized.
The NICU is so hard in so many ways, many people don’t know how to act, they forget to congratulate you on the birth of your baby. They are afraid or not allowed to visit – it’s very isolating. I think a program where NICU veteran moms are paired with new moms would be fantastic, it would have helped me so much.
Thanks for listening.
Two (out of four) of my children were born at 28 weeks and 30 weeks. The NICU was hard, sometimes the day could change rapidly just by which nurse we had. Some nurses were fantastic and I loved wen they told me every detail, other nurses were short and the worst part was when they laughed at things. Things that I’m sure were nothing, but when you are so sensitive and fragile and your baby is fighting. The laughter was too hard to hear.
Also when they put the pic line into my daughter’s skull I wished they would have led me out of the room. There are some things parents shouldn’t watch.
.-= mariah´s last blog ..Fuckidyshitfuckcrap! =-.
Tara in The Fort says:
My 3rd was born a preemie. Technically, he was 37 weeks. But had IUGR and my placenta was crap, so when he was born, they “graphed” him at about 34/35 weeks. Overall, our experience with the NICU was awesome. All of the nurses (except for one) were amazing with our son and the other babies.
I think the one thing that would have made things just about perfect was if they communicated with us a little more about what was going on. They were good about saying “He’s doing great” or “He’s having a rough day” but I wish there would have been more detail given. I remember one day walking in and he was in the incubator under the bili lights. That was a bit of a shock, considering I had just been there 2 hours before and they made no mention of the change. We knew his bili levels were getting high, but that was kind of a shock. Also, it would have been nice for them to explain more about the machines and monitors that were hooked up-what the alarms meant, what the numbers meant, etc. Had we not asked, I still wouldn’t know to this day what they were all about.
What an awesome opportunity for you! I know you will do an amazing job speaking for “the many”!!
Frugal Babe says:
My best friend has two children, and both have been in NICU. In both cases, the NICU was made of rows of incubators with very little room for parents. One had just a single folding chair next to each baby bed, Highly traumatic, and the families were mostly separated from the babies during the NICU stay.
Then another friend had a baby 9 weeks early last summer, and her situation was totally different. She was in a hospital that allowed the parents to room in with the baby in the NICU. They had a setup like a suite, with a bed for the parents adjacent to the baby’s bed. My friend spent 45 days living at the hospital, right along side her daughter. It was still a crappy experience, but it was far far better than the experience of my friend who could only sit next to her baby in a folding chair. I think if more hospitals could start moving towards a setup where parents can stay with their babies in or near the NICU, it might be easier for the parents.
.-= Frugal Babe´s last blog ..Bye Bye Wells Fargo! =-.
Jessica Gottlieb says:
My son was in the NICU and hadn’t yet slept in a crib.
I wish they would have held my son so I could take a shower and a walk. But they couldn’t because of liability issues so it was five days of just me and him.
I was scared to let anyone but a pro hold him.
.-= Jessica Gottlieb´s last blog ..iPhone Picture of the Day: Crocs =-.
I just have to tell you what an inspiration you are. I know it doesn’t always feel that way. When someone would say that to me, I always felt like a fraud. So know that when I tell you that I really mean it.
.-= Holli´s last blog ..BACK HOME =-.
I had three babies in the NICU – our first passed away after two weeks (24w gestation). The second and third were 35 & 34 weeks and also were in the NICU two weeks, but were discharged and are healthy.
What about the hospital care was good after our son’s death? The nurses who I had bonded with in our short time there swarmed over us. Our favorite nurse had the day off and they called her to let her know what was happening and she came in and helped do photographs of Fletcher after he died. Knowing that SHE was the one who removed all his tubes – lovingly, carefully – gave me tremendous peace. We still keep in touch.
We were at the University of Washington Medical Center for the first two babies and the NICU staff there was SO good about deferring to us, the parents; acknowledging that we knew our sons and knew what they needed. The docs had a tendency to be brusque but the nurses were kind and generous (with only ONE exception.) Our third NICU experience was at a different (private) hospital and the NICU personnel were arrogant and would have acted autonomously in many decisions had I not stuck myself in the middle and made a huge fuss. It was terrible. There was ONE nurse there who was kind to us…only one. I was shocked, after our previous positive experiences at the other hospital. I so appreciate how the staff at UWMC never made me need to stick up for myself or my sons – it seemed so natural for them to let me do any and all things that I could. They seemed to understand how difficult it was for my husband and me but they never came off at know-it-alls, which they easily could have since they see people in our situation all the time.
Honestly, my good experiences with the staff at UWMC makes it possible for me to look back at our firstborn’s time in the NICU with fondness, even though he passed away and our hearts broke. The experience at the second hospital makes me look back on my third son’s NICU time with anger, though he was and is a healthy little boy.
My prayers are with you as you prepare your thoughts and continue on in your pregnancy.
Marti from Michigan says:
When my son, Joseph Scott Patrick was born 36 years ago at 26 weeks, there was only a primitive NICU. He lived only a few hours. I remember when I had my full term daughter, 34 years ago, and when they woke me up for her night feeding (I was nursing and would not let the nurses give her formula), they put me in a room right by that primitive NICU. I remember trying to nurse with all sorts of alarms going off. I felt so sad for those precious babies and hoped they made it out alive.
I have no idea why children are born premature. I don’t think the medical people know for sure either, all the reasons. They know some of the reasons. I guess, until some kind of artificial womb is created, the babies will have to endure all the needles and tubes. I sure hope THEY (the babies) do not have memories of being in the NICU.
Until then, I guess all we can do is march forward through life.
HUGS to all of you!!!
My daughter was born via emergency C-section at 37 weeks. To most this is pretty far along, but for her she was still not ready to come into this world. She couldn’t regulate her body temp or her breathing after 2 days in a normal maternity ward. They transferred her to a nearby NICU and that is where things went wrong.
The hospital AJ was born in didn’t even tell me something was wrong, that she wasn’t thriving until they made the decision to transfer her. I was recovering from the c-section and wasn’t given the option to go with my baby, so I just checked myself out.
At the NICU the nurses were really stern and negative with us. No one told us what was going on, what they were doing to help her, or even why she was there. We didn’t even find out about her inability to regulate herself until we cornered a senior nurse. Basically they told us to go home and rest and they would give us a call.
Luckily for us AJ was only in the NICU for 4 days, but those were the longest days of my life. Not knowing why or how….. I just wish there had been more compassion and understanding. I think that it may have been that she was in much better shape than most of the other babies there, but still….
.-= Connie´s last blog ..Back to School Printable =-.
.-= mythoughtsonthat´s last blog ..Guilty Secret =-.
My son spent 7.5 months in the nicu. You can read our story here. 3 months in the picu until his death, so devastatingly premature. http://www.carepages.com/greysonmenefee
as you will read, I have lots of things I wished they had done differently, but only one which was consistent. Talk to me. Don’t make me ask. I am a college educated, successful woman. I know how to listen. I can hear your voice, more importantly I heard my sons’.
feel free to email me. I would love to help you spread the word.
.-= Kim´s last blog ..Eight Months =-.
Heidi Case says:
Heather – First off, I hope you’re feeling better!
My daughter, Ellery was born at 33 weeks via planned c-section due to a rare condition called Hydrops Fetalis. She was swollen with fluid all over her body, but most of the fluid was in her chest cavity surrounding her heart and lungs – making it impossible for her to breathe when she was born. She was given less than 5% chance to live. But, I’m lucky my little girl made it and we will soon be celebrating her first birthday next month.
Ellery spent 28 days in the NICU, along with three additional PICU stays due to another condition called Congenital Chylothorax – re-accumulating fluid in her chest cavity putting her in respiratory distress. The worst part of her hospital stays was the stress. The stress this put on my husband and I, and our entire family was awful. I wanted and needed someone to just listen. I still deal with feelings that I try to “get rid of” because my daughter did survive. People do say, “Don’t focus on what happened – she’s alive! Be thankful!” I am incredibly thankful, but those feelings still loom.
The best part of Ellery’s NICU stay was the private rooms. We were so lucky to have a top-notch facility that has private NICU rooms for all patients. We never heard other baby’s alarms, or of the death; we only heard our own baby’s alarms. The private rooms were a God sent!
If you’d like, you or anyone else can read of Ellery’s journey at: http://www.caringbridge.org/visit/ellerycase
My son was born at 32 weeks, and spent his first 12 days in the NICU. While we were extremely fortunate and did not face any short or long term complications, as a first time parent it was stressful and terrifying. It took us 3 days before we could even see a doctor to discuss his condition- and the only way that came about was that a helpful nurse told us to wait and stalk his doctor after their morning meeting.
We had no idea what to expect, and the nurses refused to say ANYTHING. Not how long his stay might be, or if he was doing well, or if we could even hold him. We were never informed of any of the procedures they planned to do, unless we happened to look at his chart after the fact. We were never given a say in his treatment.
Knowing what I do now, I would’ve taken him home on day 5 and he would’ve been just fine.
The lack of communication and support from the hospital was absolutely inexcusable. I can’t definitively say whether I had PTSD, but I nearly had a panic attack touring a different hospital as we awaited our second son’s birth. The smells, the sounds, and especially seeing the isolette in the hallway- it was too much.
For me, having a full term (born at 38 weeks exactly) healthy baby helped SO much. Well, at least until he had to spend 4 days in the PICU at 4-8 days of age because his bilirubin levels were dangerously high.. I lost it then.
So, 4.5 years after my first son’s birth, I think I’ve come to terms with nearly all of it. Unless I start remembering how the NICU was run and how seemingly uncaring many of the doctors, including the chief, were and then I get pissed all over again.
Our son was born full-term and “normal” and his first hospital stay was in the NICU at 6 weeks old with RSV. He is now nearly two and has chronic lung problem and weight problems, but we have been in and out of hospitals ever since.
One thing I wished I knew was where to find the help I needed. I had a 20 month old at the time and had only lived in our current part of the country for 6 months. I was scared and lost and didn’t even know where I could find food. It took me awhile to figure out basics like where I could contact my family – all of whom were out of town – and how to deal with my other son.
Our hospital (Children’s Hospital of Philadelphia CHOP) is fabulous and I think they did a wonderful job. The nurses and staff were wonderful.
Still it took me a lot of persistence and 4 days to find someone to baptize my son, which was very important to my husband and me. I wasn’t sure if visitors could come in, what may even help, anything.
This may sound weird, but it felt like we almost should have gotten a “welcome” packet with common questions and information about the hospital and surrounding areas. I wasn’t even quite sure how I got down there and had trouble directing my husband there. I didn’t want to bother the nurses with every little question, but also had no one else to ask.
As time has gone by and our stays became almost routine, I began to find out I was not the only parent with questions about the basics.
Our first 4 hospital visits took up about a month of a 2 1/2 month period and at first I had no idea where to find extra clothes, toiletries, etc. I soon “discovered” stores and nooks nearby and which direction was safe to wander vs. which direction was not.
Also I wish someone had mentioned to me to keep copies of my son’s medical records, tests etc. from near the beginning at least. I started at about a year with a 3-inch binder so I had copies from all the different sources, but it took a lot of going back and getting copies of medical records. Still it has made our life so much easier as I realize usually our times in the hospital I am not thinking clearly at all. And although I try, I may incorrectly remember results, information or what I need to do later. My son is followed by multiple specialists as well as his pediatrician and I have had to point out that we have already performed certain tests or abnormalities multiple times in his bloodwork the doctors have missed because the results were no big deal once, but multiple times indicate a larger issue.
I also saw a board during our NICU stay that would be helpful info to have out there for parents. It was information on how to include your other children without scaring them and how to make sure they still got what they needed from you as a parent. I was running dry at the time, but was grateful for the little suggestions I could bring home to my older son who was scared and confused about what was happening.
Feel free to contact me if you want any more ideas, but it looks like you’ve got a lot on here:).
Maria – Philadelphia area
I forgot the Web info – Also http://blog.mamasangels.org
and what I loved – our nurses were so caring and the doctors really took time to answer my questions in the NICU – I just didn’t know what to even ask.
Our hospital has a hospitality floor for the parents, including free internet, computers, videos and books. They have a daily reception for the families to get a break and regular classes.
Also we had volunteers who would come in to give us a break sometimes. I never would leave my son unless I knew someone was with him and I had no one at the hospital with me a lot of the time. The volunteers who came in and offered to play with him for a 15 minute break were a godsend.
Also the nurses who showed me where extra scrubs were and little toiletries for parents so I could change when I had been in my same clothes for 36 hours and had nothing to sleep helped me at least feel halfway ok given the circumstances.
.-= Maria´s last blog ..Update on NFP – The Marquette Method =-.
Although we only spent 17 days in the NICU, I got a glimpse into what the experience is like for those that spend months (and to be fair, I feel like I’m still grieving for the “normal” pregnancy, delivery, etc., and I wonder if I’ll ever forget what it was like to go home two days after deliverying my baby and have to leave her at the hospital, but that’s for my own blog ;o)).
Heather, I’m so glad you’ve started friends of Maddie. There is such a need for support for NICU/PICU families. We also delivered at a UCLA hospital, and although we found the individual NICU nurses to be wonderful and supportive, the environment itself wasn’t . . . Things that would have made our experience better (like many of the posters above): a real supportive social worker and not just the “token” one that stopped by for one quick, worthless visit; a parents support group; family rooms where NICU families could wait in between visits without having to sit in the labor and delivery wait rooms; sleeping rooms. Though we lived close to the hospital, there were families that lived 90+miles away. They couldn’t afford to stay in hotels the entire time, some had other kids at home, and it pained me to know they were making that drive back and forth every night. At a hospital in the midwest, where a friend gave birth, if there’s a vacant hospital room, NICU mothers are allowed that room for free as a sleeping room. This is something that would have made SUCH a difference in our experience — if we could have at least slept in the same building with our daughter. I’m sure it would have made an even bigger difference in parents’ lives whose children are there longer. Otherwise, I wonder if perhaps non-profits in the community could work to get hotel vouchers for these types of situations? (This is a dream of my husband’s and mine . . . to start a non-profit and have this be one of the thngs it did). In the meantime, I live in LA, and would love to help Friends of Maddie. Please email me if there’s a need for volunteers. I’d love to be a part of this wonderful thing in honor of such an angel.
.-= Allison´s last blog ..A Growing Girl and a Mom Toooooo Tired for Words =-.
I had this all written in my head…I mean, my boys are nearly 12 years old now, I should be over it right?
Yet, I can’t. I know (& I am) I should be thankful that they are alive and well. That they play hockey and are entering pre-teen angst.
But I’ll try to get this out if I can, email me if you need/want more.
I still remember my hospital room filling with doctors and rushing to the operating room. The only thing in my mind was ‘its too soon, too soon’
What I liked? Well, what kept me sane was having incredible doctors & nurses, from my peri to their neo doc.
At the time I cringed at the brutal honesty, I just wanted a little hope. I can say that even when they spoke as they did…spoke what they did, I never doubted that my sons were the top priority for their nurses and doctors.
I was across the state from my home, with no family (& SD is a large state) and instead of shipping me out to a hotel or some such after my release. I was able to stay in a hospital room for the entire time they were in…free of charge, because of a group similar to ‘Friends of Maddie’ who had helped pay for converting rooms near the NICU into ‘parent/family’ rooms.
Some of the things I would have changed 12 years ago are being changed now. Kangaroo care was one of the newer methods used at this NICU, but was taken very seriously & with the birth of my youngest (preemie) son(11 months old now) It was standard practice.. There is now surfactant(sp?) and CPAP.
I just wish that no parent ever had to go through the fear, the pain and the sorrow of the NICU.
I still feel my heart race, my mind blank with the terror when I look at pictures or see programs with a NICU. My youngest was in there less than two days and I could barely make into the door before flashbacks would overtake me.
I can’t even use a regular alarm clock, the alarm sound doesn’t just wake me up, but sends me into a panic attack.
No one told me that I would feel like this so long after. That is what I would change…I wish someone had told me.
My third son was born at 31 weeks; in NICU for 6 weeks, home for 2 weeks and then PICU for 2 weeks following pneumonia, home for 1 week, then pediatrics for another week with RSV.
NICU is a lonely place. It always bothered me that the nurses often said “Well we don’t do kindergarten here, so he’ll have to be out by then”. It was a joke meant to lighten the mood I’m sure, but to a mother whom no one can tell when her son may improve enough to go home, it might as well have been a life sentence. Another unintended insensitivity: “He’s not a baby we worry about, he’ll be just fine”. My son nearly lost his life to pneumonia… and that nurse’s words ring in my ears. If we had been delayed to the hospital by just a minute or two more, we would be in a very different place today. How can you say “dpn’t worry” to a parent whose baby is intubated, has a chest tube for pneumothorax, has an arterial line in his groin because his veins have collapsed from too many IVs and a central line (also in the groin) to monitor blood pressure, g.i. tubes and a plethora of wires and monitors. This is not normal. “Don’t worry” should not apply.
Aside from a more sensitive demeanor from nursing staff and doctors, improvements I’d like to see:
1. Unbarred access to your child, even during rounds or invasive procedures that medical staff seem to think you are better off not seeing
2. Involvement (if you wish) on your child’s medical rounds. Often there is history that is not immediately known to medical staff and students that a parent knows intimately. Or simply a detail is wrong or left out.
3. Staff giving each new parent to the NICU a guided tour, including pumping rooms, milk fridges, equipment storage, “quiet rooms” etc.
4. Parents being given information on how premature babies liked to be touched (if possible) and instruction on any and all care that can be performed by the parent. It is immensely comforting to feel like you have the capacity to help your child. Helplessness in the NICU is debilitating and depressing.
We were one of the lucky families, whose baby made in through his first year. I am ever, ever, thankful for this. But the memories of the “hard times”, keep me awake at night fighting tears and nightmares. Reliving moments that I would rather let slip into the abyss of the forgotten. Making my heart pound when an ambulance passes, sirens blaring.
Having a premature baby is a hard road to trod, but perhaps a few changes in the medical system would ease the trauma. I hope my few comments give weight to what you already know and I commend you for your willingness to bare your wounds to make life a little easier to those whose hardships are just beginning.
Karen Sugarpants says:
My heart goes out to you. I had PTSD after Dylan’s illness as a baby and it lasted for a long time, causing horrid migraines. I never got help even though a friend told me that’s definitely what it was. I simply didn’t know any better.
I think of you guys every single day. xoxo
.-= Karen Sugarpants´s last blog ..Attitude Adjustment =-.
This isn’t NICU related, but should be a lesson to OBs and NICU drs and nurses. My 1st daughter was stillborn at 38 wks (undiagnosed clotting disorder). My dr’s office called two weeks later to see how the baby was doing! His office is huge as its connected to a large teaching hospital. But still.
Second thought … my 2nd daughter was born at 32 weeks. The NICU was fantastic, and the nurses were friendly, helpful and loved the babies. But, I often felt treated like a child, talked down to. And they didn’t seem to tell me much unless I asked specific questions.
As a PICU nurse, I can only say thank you from the bottom of my heart… Despite the many times I have stood with a family in their darkest hours and moments, I am still always completely overwhelmed and lost…unsure of exactly what to say, what to do, how to reach out. I find that I can easily and competently switch into medical mode and deal with complex medical tasks, but facing the emotional weight of grief is something I don’t feel that I do nearly as well. There are some things that I’ve learned in my 13-year journey…I encourage parents to touch and speak with their child, I ask them to be involved in physical tasks such as bathing, dressing changes, etc., and I try to help them feel like they are a part of the decision-making team. But, I am a “crier” and nothing makes me cry more readily than seeing a parent grieve for a child. My tears make me feel uncomfortable, like perhaps I should be stronger, more professional. I always wonder what parents think about my tears for them and their child…are they touched? ambivalent? disgusted? I would love to hear from you.
I hope, for my sake, you will print the transcript of your speech. I look forward to using your words to become a better nurse.
My twins were born at 25 weeks 5 days. Thanks to a botched amnio at 16 weeks, we knew our son wouldn’t survive, so 6 weeks of bedrest and an emergency c-section helped our little Maddie-Claire survive. Born at 1 pound 1 oz on 12/26/07, she has been our little miracle baby for sure, but not without a lot of struggle and heartache. Brian was born at 1 pound 11 ounces and lived for 51 minutes and was beautiful. Our local hospital (also where I worked) was wonderful, the nurses and staff were absolutely fabulous and supportive. I always had someone to talk to day or night and sometimes even when I didn’t want to (but later realized I needed to). One housekeeper even brought me flowers. Maddie-Claire was transferred to another hospital a few hours after her birth and the doctors were good that week to call me several times a day. I must say that my experience after that was very lonely and scary. Because I had an 8-1/2 month old at home, I couldn’t spend much time in the NICU and only bonded with one nurse that first month. After that it seemed we had different nurses every week. The finally week we were there, I really bonded with a nurse and she said she wished we had met earlier – me too. While Maddie was in the hospital, I had to recover from my c-section and then had gallbladder surgery (at the same time Maddie-Claire was having her PDA clipped).
I realize the nursing staff is there for the baby, but I’m not outgoing and was terrified. I think if I could say anything to the staff, it would be to reach out to those of us who are quiet. I know all about HIPPA laws, but introduce us to other parents in similar situations. I wanted to know my baby as intimately as the nurses did, I wanted to know what she liked and disliked and when to touch and not touch her. I heard “Don’t rock and don’t talk” so many times, I still have a hard time rocking my baby and talking to her when I hold her and it’s okay now. I did have a nurse give me a verbally abusive lecture over the phone about not seeing my child enough – she had no clue about our family’s circumstances and was WAY out of line. My husband too that one to the top.
I am eternally grateful to the NICU staff for what they did to help Maddie-Claire.
I started my blog (http://bittersweet.blog.com) after the twins were born so that family and friends could get regular updates and I wouldn’t have to tell the same story all the time. I keep it going as a way to journal for myself. I’ve had five surgeries from the day Maddie-Claire was born to now. The last two for a rare kind of breast cancer.
I am so grateful that you are expressing your feelings so beautifully on your blog. It helps me in ways you will never know.
Thank you for sharing your story.
.-= Sue´s last blog ..Let the healing begin =-.
Sarah Kate says:
I wasn’t sure whether to tell you this but I guess I am. In the midst of a DEEP depression. Fatal. Had made up my mind. Guess who I dreamt of. Guess who talked to me all night. Yup. Your girl. So sorry you ain’t got her but hella blessed that I got a lend. THANKYOU FOR BEING SO STRONG.
Rachel M says:
This is my first comment but I’ve been reading your blog since April. First I want to say I’m very sorry for your loss and I’ve been praying for you and your husband.
My experience in NICU was brief and I never considered before your post it to be traumatic, we tried to be patient with the doctors because as you said they were taking care of our infant and I respect them as professionals. My daughter was born at 35 weeks and needed one week in NICU. My major regret was that the doctor/nurses didn’t make it possible for me to nurse my daughter and subsequently my milk didn’t come in very well. I should have pressed, but as a new mom I was just trying to follow their rules, the doctor said she could ONLY have 2oz of milk so they could then weigh the entire contents of her diaper and every day she got a bit more. If I ever go back to NICU I will probably insist on being given the opportunity to nurse.
.-= Rachel M´s last blog ..How do you teach a Toddler to be nice to animals? =-.
My son was born at 41 weeks gestation by C-section. He inhaled to start crying before he was delivered and sucked up a bunch of anmiotic fluid and ended up in the NICU. Totally unexpected and frustrating because at that time (14 yrs ago) the NICU staff acted like the baby was “theirs” instead of ours. We had the biggest (over 9#) and healthiest (as far as medical complications) baby in the NICU so I imagine that we had the easiest stay that you can have. My son was sent home after only one week and had been mostly fine since.
However, I still can’t watch any baby shows that show the baby going to the NICU without my chest feeling tight and experiencing some feelings of anxiety. I couldn’t even watch the video you posted because I was too much. Sometimes I still dream about that time and wake up in a cold sweat. It’s still vivid to this day, the fear and uncertainty and the lack of support from the medical community. It even changed the way our friends treated us, as if having complications after birth might be catching.
I wish you all the best, and blessings to everyone else who posted. Sorry, I couldn’t read all the comments, it just brought too much back to the surface.
I’ve never had this terrible experience, but wanted to post because you and your family were in my thoughts a great deal last night. I’ve had 2 miscarriages, but never lost a child whose name I knew, and who I have held in my arms. You and other parents who’ve gone through this are in my prayers. And so is your new baby!
hi! i love that you’re doing this. the many parents you will reach is just invaluable! our experience in the nicu was brief, just shy of two weeks after my son was born at 34 weeks, and he left healthy with no issues other than jaundice. it was me who had the problem. i was scarred for months with the guilt of his early arrival, his rough entrance into the world, his being purple and limp when he came out, it was very traumatizing for me. not only did i have no idea what the nicu was, i had a terrible time with being there. everything about it, plus i really couldn’t get two words in amid the rush, i wasn’t allowed to breastfeed unless there was a nurse free to help me and there was no support for me, who was blindsided, crying nonstop and refusing to leave the hospital. i was a mess. i’m now part of a preemie moms group which is working to get involved with our area nicus to give moms more support (i.e. scrapbooking with them, coffee hours, nicu baby showers, finding sponsors to help provide more comfortable rocking chairs, mailboxes for parents for information and notices, nicu bags for essentials like a journal, hand lotion, gift cards, etc etc). so what you’re doing is wonderful!!! you are truly an angel working to help other parents who are going through what you have been through! i pray for you and think about you all the time. (ps. i too had the shots for my second pregnancy which happened to go 41 weeks.) many blessings to you!!!
.-= christieo´s last blog ..Shrink for Good =-.
Beth Anne says:
We have a singleton, a singleton, and spontaneous triplets. Four of our five children (all but child #2) spent time in the NICU – 31 days, 41 days, 54 days, and 62 days. One of our triplets – and our only daughter – was the one who spent 62 days in the hospital and she actually spent time in the NICU and the PICU (the cardiac unit). After 62 days of life and after enduring an open heart surgery that she never recovered from, our daughter passed away in the hospital this past March 6. (I found your blog right around the time that Maddie passed away and I have been following ever since.)
I am sure I have plenty of ideas to share with you but I am beyond tired clarity of thought at the moment. (Not surprisingly, I have insomnia). I will share one of the most meaningful hospital happenings, though. One day while I was in our 2 baby boys’ NICU room I was crying while I told my husband that I was afraid we’d never get a photo of our 3 babies together. I thank God that a very caring and dedicated nurse overheard the conversation. In just hours time the nurse had talked to the audio-visual department and to the neonatalogist on duty who then talked to our daughter’s cardiac intensivist. Everything was arranged so quickly it was amazing — a photo shoot was set up for our babies. Thankfully our baby boys were healthy enough to go on portable monitors and travel to the PICU cardiac unit for the photos with my husband and I and all three babies. It was the first and only time our triplets were together and it only happened because of the way this amazing, wonderful nurse cared for not only our babies but our entire family.
Had the nurse not been tuned in to me that afternoon (my tears, my worries, etc) we would never have had a photo with our triplets together. I treasure those photos with all my heart.
Heather thank you so much for posting this. I suffered with this after my son was in the NICU. I STILL have nightmares. I used to think I was crazy but now I know this is a real thing. THank you again for posting this….I feel so much better just knowing I am not the only parent that has struggled with this.
.-= Jodi´s last blog ..Newsflashes! TGIF!!!!!!!! =-.
I have followed your blog since April must first say I am so sorry for the loss of your daughter, that I can’t even put it into words.
Our son was born at 29 weeks and is healthy now but had severe bpd, ventilated for 3 weeks and was in the NICU for 77 days.
I think one of the hardest things was not having any privacy. At our hospital, all of the beds were basically in one large room and there were only 1 or 2 VERY SMALL private rooms and only babies that were closer to going home were able to use those. We were forced to deal with all of our emotions for the whole rest of the floor to see. I remember crying and praying that my baby would make it and then see many healthy “growers and feeders” around us and wondering why that couldn’t be us. Then as he got stronger and bigger, I saw us on the other side and wanting to celebrate and be happy, only to see more sick babies arriving and feeling guilty. I think more hospitals are now trending towards private rooms or pod like designs for families. But I remember all the monitors going off and bright lights and thinking, this isn’t how it’s supposed to be. Our hospital did try to limit this by covering the isolette w/ blankets, dimming lights when appropriate, trying to make it as “womb-like” as possible.
But our hospital was great at keeping us informed of how our son was doing, letting us come to daily rounds if we wanted and we could call at any time day or night, and speak to the nurse taking care of our boy.
I would also say that they need to give up the old stand-by line that all preemies “catch up” by the age of 2. Unfortunately that doesn’t seem to be the case for everyone out there and I think it gives parent’s some false hope.
I also agree that PTSD is something just about every NICU parent will deal with at some point. I think it needs to be stressed more that it’s is normal to have these feelings pop up, even after your baby comes home and is doing well. Even now after almost 4 years, I see a pregnant woman or a birth on tv and it can send me into a tailspin. I know
I thank you for all the work you are doing with the March of Dimes and getting the word out about premature births. I hope and pray that this pregnancy continues to be uneventful and thank you for all you do.
My cousin has cerebral palsy, and her mother was not married when she had her. Through her stay in the hospital her mother and her were treated unkindly to say the least. So my suggestion would be to talk about how critical it is for a bedside manner to be kind and somewhat warm but not critical! I hope your speech goes well, your story is definitely one that will move many! God Bless.
.-= Courtney´s last blog ..Six Word Saturday! =-.
I want to say that overall, I think Lucy’s stay in the NICU was as good as I could have asked. My only thought would be for the staff to please be gentle when/if a NICU mom is learning to nurse. I found that to be the most emotional part of Lucy’s NICU stay for me. It was my first real shot at actually helping my baby, so it was automatically tied in to how I felt about myself as a mother. Plus, it was intrinsicly tied to when Lucy got to head home (they woudn’t even talk about dates until she was eating on her own). So there was already a ton of pressure coming from me. But the pressure from the staff was not always helpful. Some nurses were great, but many of them were harsh and judgemental. The “nursing coach” they had downright terrifed me. I spent most of that two weeks crying/feeling like a failure. And when they finally did send us home, it was amazing how much more smoothly it all went, without the nurses giving me orders and telling me I was doing it wrong. Oh, and they really needed to get their policies standardized. It was so frustrating when a night shift nurse would tell me I could only hold my baby once a day, during a feeding, just to have a day shift nurse tell me I could hold her up to three times. It made me nervous, like all of their decisions were somewhat arbitrary, you know?
Overall though, I loved our NICU nurses. I don’t think you can go through something like that and not be bonded to the people who took care of your baby.
Good luck with this Heather! I’m always thinking of you.
.-= Shauna´s last blog ..Turning Two =-.
i can’t imagine anyone NOT having PTSD from the NICU or the PICU.
.-= gorillabuns´s last blog .."the best day ever…." =-.
you guys are just awesome. i’m going to ask my sister’s best friend (two of her sons were in the nicu, one longer then the other, two idfferent nicus) and let you know. loooooove you guys.
My sister had HELLP syndrome, and my nephew was born at 34 weeks by emergency C-section. He was a pretty healthy little guy, but he still had to stay in the NICU for two weeks. He’s now a healthy, happy 2 year old! Luckily, my sister had a relatively positive experience, at least for the NICU. She lives in Indiana (the rest of the family is all out in California), and the hospital provided private rooms for each child and mom/dad set. So my sister was able to sleep in the same room as my nephew, in a real bed, as soon as she was allowed out of her bed. Before that, my brother-in-law stayed with the baby. The privacy was really important to her, as she was learning to breastfeed (she’s very shy!) and it also shielded her from seeing some of the scary, traumatic things that were going on with other babies who weren’t so lucky. My sister and her husband were still really worried about bringing him home, after all the monitors and alarms were disconnected, afraid that he would have episodes of apnea that they wouldn’t know about, or his heart rate would drop too low again. But after a few months with no problems their fears faded, and they’re ready for their second in November. A girl this time! My sister says that the emergency c-section wasn’t the hard part, the NICU stay was what scared her, even though it was so much easier that what you and others have described. The fear of problems, of another NICU stay, was her biggest hesitation about having another. I wish for you only good things this time around!
This is my first post but I’ve been reading your blog and Tweets since April. In May, my sister suffered from PPROM at 24 weeks and unfortunately the baby died about an hour after he was born. While they never made it to the NICU I wanted to tell you about a wonderful service the hospital had. My sister went to the ante-partum unit like other new moms but her room was on a special hallway for mothers who’s babies didn’t survive. It was secluded from the main unit. There were special nurses who tended specifically to these patients and they couldn’t be more compassionate and understanding. The hallway was even marked with butterflies so that any medical professional in this area knew to be very sensitive to the situations they would encounter. I wish you and your husband all the best with this pregnancy. And thank you for taking time every day to share your life with us.
As a new RN I feel the information you give the medical staff will be invaluable. It is very easy for us to think about our tasks we need to do and forget the human element. To be honest sometimes focusing on the tasks is what keeps us from running screaming down the halls when the situation goes from bad to worse.
Whenever someone tells me they have been in the hospital I always make a point to ask what did the RNs do right and what did they do wrong. What would have made you feel you mattered and were not just another procedure? It is important for me to hear this so I can always work to do a better job connecting with my patients and families.
I work in adult critical care but much like the NICU (where I started) and PICU we take care of the families as much as the patients. I say be honest and hold nothing back. Let them know what went right (we all like compliments) but more importantly what went wrong or was not handled like you and Mike would have liked. That is the only way to learn and change our practice.
I applaud you for your strength and courage. By speaking at the symposium you may make the journey for another family that much easier.
Marin D. says:
When my second baby was in the NICU, I wish the doctors/nurses would have followed through with calling each day to tell us how things were going. I delivered at a hospital without a NICU and my baby had to be moved to a hospital about 15 miles away. I had a very traumatic c-section (as in my spinal block didn’t work and I had to go under general) and difficult recovery as opposed to my first c-section. They said they’d call me each evening to update me but I ended up having to call myself in the middle of the night to see what was going on.
I also would have liked to have gotten a “tour” and instructions on what to do on my first visit. My husband had already been in several times before I got there and knew what he was doing and what was going on. But I had no idea what to do. My husband ins’t the best at relaying messages so I felt awkward. I just would have liked a little more instruction and information. I was still so out of it and the long walk to the NICU took it out of me.
I didn’t know if we could bring in clothes for her or a blanket from home. It would be nice to have a “things to know about the NICU” for parents.
But the nurses and doctors seemed to genuinely care about the babies. They were nice to us. I don’t know if that is because I have friends in the NICU (higher level) and L&D but they spoiled her. I had a lot of “bad” habits to break when she got home. LOL! I have a lot of faith in the work that they do. I know they are busy and don’t have time to baby me, but I just want to know what to do and what not to do. I don’t want to maky anyone’s job harder. :o)
Keep up the good work. I hope you start feeling better soon. I definitely can relate to those feelings of sickness. I can’t wait to find out whether you’re having a girl or a boy too!!! Wishing you the best…
Since my son will be 12 in a few weeks, why am I crying after reading all of these replies to your post? As I skim them, I am again reminded that we had the best care available. But, there was little support available for those of us with children who did well. Regardless of how well your child does, the NICU/PICU are traumatic for the family also. Support after your child is released would be tremendous.
What a wonderful opportunity to help future NICU parents – I can’t think of a person more well suited than you to do it.
My daughter Cassie was born @ 25wks (1lb3oz). I’m going to echo something that I’ve seen a few times in the comments. Primary. Care. Nursing. Especially for babies that are going to have an extensive stay. The experience and the atmosphere is so overwhelming and I can’t begin to tell you what a difference it made to have two nurses who knew *my* baby be able to explain things, put them in context, or help us see the big picture when we were getting little bits and pieces from all the different specialists.
Also, our NICU staff did a fantastic job of recognizing how difficult it is to parent in NICU and whether it was handing me a diaper (the size of a post-it) on the first day and telling me my daughter needed a change or explaining things and pointing us to more information so that we could make educated decisions, they did a great job of helping us find a place that we were comfortable with on the team caring for our daughter.
1. Take the time to give the parents ALL the information, there’s no need for high-drama but don’t sugar coat things either. It only makes it more difficult for the parents to deal with later and can lead to mistrust between the parents and the staff – this is NOT good for the child.
2. Don’t make the parents leave during rounds! I understand HIPPA regulations, but for pete’s sake is it really that difficult to find a way to accomplish rounds in a discreet way without separating parents from their babies twice a day for 2 hours at a time?? I went back to work as soon as I was cleared to save time off for when Cassie came home. In addition, I had three other children at home who also needed me. I planned my visits so very carefully to maximize every second I could be with Cassie and to get there only to be kicked out because rounds were running late was excruciating.
3. I’m not sure this is something for NICU staff per se, but there needs to be more follow up and support for the parents. This is why I’m so excited by Friends of Maddie. In addition to PTSD that I’m just recognizing, I ended up in the hospital 7 mos after Cassie was born with a heart attack! While I take complete responsibility for not caring for myself adequately and not reaching out for help when I should have recognized I needed it, I can’t help but think about what a difference it would have made if I had a NICU graduate parent to talk to or had had any sort of follow up directed at the parents. I think it was pointed out in the NYT article or the comments, but the trauma a NICU parent (or parent of a very ill child) experiences is unique in that it’s relentless. It’s not just one event that you get through and then recover from. It is a series of events that just keep coming. The alarms, the bradys, the desats, the acronyms (IVH, A+B’s, NEC, ROP) – all of them life-threatening and/or life-changing. That doesn’t even take into account all that’s going on around you…walking in, settling down happy for once to enjoy your baby only to be crushed as you suddenly realize that the privacy screens are up and you can hear the woman you’ve become close with over the past few weeks quietly sobbing as she holds her child who was doing so well just yesterday. As you said Heather, it’s astounding when someone is able to leave NICU without PTSD.
Well, now I’ve written a book in your comments – sorry! I do want to take one more line to thank you for sharing your story – it really does help others. Something you said above about being able to blog and get it out making you a better parent to Madeline struck a chord with me. I think I need to let all of this out of my system – it won’t change what happened, but maybe letting it out in the open will give me some peace.
I’d have to agree with another commenter above who said that food/drink stations near the NICU would be good. When my daughter did a 10-day stint in the NICU following her birth/neonatal stroke, I had to go down several floors to get anything to eat or drink (besides water from the hallway water fountain).
The other thing I was thinking of was comfortable chairs for parents to sit in while spending time with their child in the NICU. It might sound like a small or petty thing but I spent about 18-20 hours a day in the NICU, and sitting on those hard chairs the first couple of days was absolutely brutal given that I had just delivered vaginally 1 day prior. Those chairs took years off my life…okay, not really, but my girly bits were not happy with them
I think I would have greatly benefited from having a NICU support group while actually dealing with the NICU firsthand. To have been able to speak with someone who had been there, so to speak, would have been nice–to help validate the feelings I was feeling, the helplessness, the terror, the nightmare of it all. Knowing others had been through it and survived when I was wondering just how I was going to make it through one more day of the NICU would have been helpful in my case.
I’m pretty sure I dealt with some PTSD after my experience; to this day, I still sometimes get emotional when talking about it. It’s nice to see that doctors/hospitals/etc. are realizing that the NICU experience — DUH — can be especially traumatic for parents.
.-= Dee´s last blog ..Time for me to fly (aka post #297) =-.
I’m a little late to the game, but I just wanted to add one small thing…
P was only in the NICU for 10 days. I know I didn’t see or hear or experience what so many other parents have. But they were 10 earth-shattering, life-changing days. They were 10 days that my heart was in two places and a million pieces. I know my experience was different, even fortunate by many standards. But I also know that it will be with me forever in ways that sneak up on me and ways that don’t. Almost two years later, I think of it every day. If you can, please just make sure that people understand that the scars of parents with only moderately ill NICU babies are still scars, even if they aren’t as wide or deep.
We actually have a great support system set up at the NICU I was at.
There are preemie development classes, sibling classes, even grandparent classes. They have a team of parent volunteers who put together a newsletter. They donate a copy of “Preemies: the essential guide” to every new NICU family.
They tour the NICU every wednesday evening just talking to parents beside.
They host a coffee get together every Friday morning.
While I was there, the rooms weren’t private, so what i wanted more than anything was to be able to pump near Robbie and not have to leave him. (I got very, very anxious away from him.) And of course, there was nowhere to sleep, so I had to leave at night. The rooms are now private (they opened a new unit) which has corrected both of those issues.
I would have appreciate more info on what to expect after the NICU. They gave us pamphlets on EI, but that was it. They told us about eating issues, but it was all about LEARNING to eat. no one ever told me one day he might just not want to do it anymore.
Or about delays to expect.. the sort of thing.
Overall, I felt like I had good support in the NICU (or at least access to it, I didnt’ partake of everything) I felt rather abandoned afterward. If it weren’t for the net and online communities, I’d be a mess.
.-= Trish´s last blog ..Scooting =-.
You’ve gotten some great suggestions. As a former pediatrics resident, I really appreciated those forums where we could hear feedback from the parents. It’s so important to consider their perspective in everything you do. One thing I would mention is to give some positive feedback as well as criticism. Most people are great about this, but occasionally I would attend one of those forums that focused so much on the negative side of NICU care that we would all leave feeling demoralized and hopeless. Being a resident is a grueling and often thankless job, and the NICU can be such an emotionally draining place to work (especially 80 hours a week!). There were so many times I simply wasn’t able give families the amount of personal attention I thought they deserved, and it made me feel like such a failure. It felt SO encouraging to hear from parents about the things we were doing right. Good luck, I’m sure everyone at UCLA will really benefit from hearing your perspective!
I had a 24 weeker (1 lb, 10 oz) at one hospital and a 31 weeker (3 lbs. 13 oz) at a different hospital. My Micropreemie is 7 years old and I am still struggling with the effect of the birth and NICU experience. My 24 weeker was in for 91 days was very sick, we were called several times to get to the NICU because he may not make it. He still has issues but is a true miracle. My 31 weeker was in for 23 days and has no lasting affects from her prematurity. She is 3 years old now.
One thing that bothered me was being on the same floor as the new mommies and babies. It was difficult to hear the newborns cry, visitors come and ooh and aah, etc while I was in my room pumping to try to get 1ml for milk for my son. When it was time to check out, we had to wheel our own cart out with our flowers/balloons and I had to walk out. No help, no wheelchair, no baby.
Smells and sounds still bring me right back to the NICU. My son will be having his 8th surgery in a few months. It doesn’t get any easier.
I loved both NICU’s that my kids were in but liked the 2nd one better. I loved most of the nurses and the doctors. I felt that we were very informed and asked to do as much as we could for our child like changing diapers/feeding/bathing.
Good luck with this project and let me know if there is any more information that you need. My children were born in two different states so I got to experience 2 different hospitals for my care and 2 NICUs for the kids care.
Hi Heather, I have been following your blog for a while, though I don’t think I have ever commented. I love your heartfelt stories of your journey. Our son was born 2 months premature with IUGR due to my preeclampsia. He had all the “normal” preemie problems, but we were just so unprepared for any of it. I loved the nursing staff but hated the way the doctors were always making rounds, talking with their students about my child as if he was a case number, not a baby- “This one has a PDA and is extremely dependent on oxygen…” I think the bedside manner of doctors could much improve. We as parents depend on them so much in the NICU, and if they took a little more time to have compassion on us as we go through perhaps the most emotionally difficult time in our lives, it would help. Often the doctors would come by and tell me all the things that were “wrong” with my son and the leave right away, while I wept in the arms of the nurse on duty.
All that to say that I am so glad you get this opportunity! It feels so good to have an “advocate”!
Heather, you are fabulous. I had a 35 week IUGR baby, who was in the intermediate care nursery for 30 days, then my next had totally different issues and was there for 16 days. She has a metabolic disorder (MCADD) and now has mild cerebral palsy.
I have PTSD. Every damn PT or OT appointment has me all wound up and sick, and full of self doubt, and then guilt for thinking about myself when my baby needs my attention and positive attitude. I am happy to share more and specific details with you, and here are some blog posts on these topics.
.-= Ginger´s last blog ..Haiku Friday – the not sick on Saturday edition =-.
In the PICU….more comfortable chairs or fold-outs for parents that are sleeping there. A woman’s league knit afghans and distributed them in our PICU–it is COLD in the hospital and I really used it. DVD players, DVDs. We were there over Christmas and someone sponsered a buffet meal within the PICU–so you didn’t have to leave to go to the cafeteria. Maybe little packets with shampoo, body wash etc. People don’t always know how long they’re staying and it was nice when I got a break to take a shower. New stuffed animals–little things make them so happy, even in bad times. Numbers for reputable babysitters for older siblings. I only had my one when he was sick but now with two it would be a relief not to have to worry about care for the other at the last minute.
You are AMAZING! I am so glad you are going to speak at UCLA. Your knowledge and experiences are going to help so many families, nurses, and doctors. I am in awe of you.
Amy Remer says:
A friend of mine told me of what you are doing at UCLA. I think it’s great that you are going to be helping out doctors and nurses. I live in the Toledo, Ohio area, but thought my story may help give you some more ideas. My daughter was born with Down syndrome and, later we found out, Hirschsprung’s disease as well. We were in the hospital from the time she was 5 days old until her death at 24 days old. We started our own blog: remingtonremer.blogspot.com, which will tell our story. Since our daughter’s death, we have also started a fund, called R Angel, which is explained in another blog: rangelremi.blogspot.com. I hope these blogs help give you some ideas for your symposium. If you would like to contact me, there is an email address on the R Angel blog. I’d love to talk with you. God bless your family & your beautiful daughter, who I hope has made friends with my precious baby in heaven.
Not sure if someone has already spoken to my circumstances in your comments section yet and i don’t want to bother you with repeats. If you would like a perspective of what it is like to endure a NICU stay with multiples (for a month each) as a military family (meaning my husband was on the other side of the world from before they were born until long after they graduated and came home), I would be happy to share. I did the time basically as a single parent…..and actually have wonderful things to say/ share (well, there was the matter of the evil lactation consultant. She? Can go to whatever rotten place it is that mean women who make a new mother at her breaking point loose it go. Witch. )
If you want to hear more, happy to share.
You are truley an amazing person. You are Mike are so strong. I have been reading your blog for sometime now and I read it almost everyday. The world is a better place because of you.
Our son Nash was induced at 35 weeks, because I was so ill durning pregancy that I could not make it any longer. We were lucky because he came out at 8lbs 14oz the NICU team said he was fine and put him right in the nursey. Nash came home with us 2 days later. He had his first 1 weekly check up and everything was good. By the second week, I was at the doctor twice telling them something was wrong, I didn’t know what it was. The doctors kept telling me he was fine. Nash is our 2nd child, so I knew a little about babies. The 3rd week of his life he was at the doctor 4 times and the ER twice. The 2nd time my husband took him and at least the docotors took x-rays that day and again told us he was fine. That evening my husband and I decided that we would take turns staying awake the whole night because something was not right. I did the 2:00 am feeding, which Nash was chocking alot and very sleepy. I laid after 45 minutes of rocking I laid him down and got my husband up so he could take over. At 3:13 am, Alex woke me by saying in a very calm voice ( he was an EMT for several years) “Call 911, Nash stopped breathing, I gave him CPR and he is breathing now.” I called immediately and they arrived in less than 3 minutes which felt like hours. By the time they arrived he has breathing very well on his own, they gave him blow by oxygen which helped. He slowly started to lag behing again. We all decided that the EMT and my husband would take him to the closest hospital which was 23 minutes away going at the speed of 80. I would meet them in the ER, once I had someone to stay with our daughter. Nash crashed again on the ride there. After several hours in the ER, he ws intubated and moved to the PICU. We spent 16 days there. Which was a roller coaster ride. Nash was intubated twice during his stay. We were at Sparrow Hospital in Lasning Michigan. Our time in the PICU was aweful, but the nurses and doctors were amazing. My husband spent every night there, so I could come home and see our daughter. The staff there allowed us to have the same doctor the whole 16 days we were there, which is usually unheard of. Also we had the same nurse M-F and on for every weekend we were there, we had the same weekend nurse. I think that is very important, becuase then everyone is on the same page and everyone knows everyone and feels comfortable with each other. We did have one nurse who did not work well with us and I asked to have her changed and they did. That is also important, that if you can switch nurses you can. The night nurses always aksed Alex (my husband) if he wanted to order out any food, when they ordered. After the 16 days we were able to take Nash home with us and he is now 18 months old. Our hospital was great. They allowed us to switch nurses, kept us with the same doctor, and gave us a one on one course of CPR. Which really helped me feel more at ease when returning home. They also followed up with us every couple of weeks for about 2 months after we arrived at home. Now every few months we bring them blankets and Pj’s for the children that are now there. A few other things that stand out in my mind were the regular PJ’s that they had for Nash so he wasn’t in a hospital gown, hand made blankets or blankets that someone would use at home, so it didn’t feel so much like a hospital. We also had a fold out bed that Alex slept on every night. Like I said we had a very pleasant experience, not I know those are far and few so I hope you this helps you a little.
Incase you were wondering our little guy had RSV and Pnenonia.
.-= Mindi´s last blog ..Missed Milestone =-.
Jennifer H. says:
Our NICU experience was a little different because our son started out at the (little) hospital that I work at. They gave us a postpartum room to stay in (right next to my boss’s office) After 10 days, they decided to transfer him to the large regional pediatric hospital. What was most demoralizing was the gaggle of residents who would gather around his crib and try to outdo each other by finding things wrong with him (one said he looks to the right too much, another said he looks to the left too much – I’m not joking!) They also said his tongue was too wide at the base and that he had a decreased grasp reflex. We didn’t know what to do with all of this information…our baby was full term and we weren’t expecting any problems. However, he had a difficult delivery and then seemed to be having a lot of seizures. After three agonizing weeks of increasing medications, EEGs, and one night of “if he lives through tonight, he’ll most certainly be brain damaged…” they decided he was just twitchy and sent him home as a well baby with no medications. It was really hard to bond with him, that was the worst lasting effect of the NICU. It took a long time to develop much feeling for him, I’m very sad to say. Another thing I was aware of was how the NICU was really set up for the practioners, and not at all for the parents. The only privacy was behind a thin little curtain, we couldn’t have food or drink, we had crappy little folding chairs or occasionally a hard rocking chair. It sucked. It was really hard to be a parent, even when the nurse encouraging me to take his temperature,etc. I didn’t really take care of him, I didn’t get to decide how he would spend his day, when he would eat, when he would get a bath… they even decided what he would wear and put him in it. When I tried to refuse to let them do a spinal tap to test for herpes (there were no risk factors for it – it was totally unnecessary) the neonatologist made me feel terribly ashamed for interfering in his medical care that I couldn’t ever make eye contact with him again.
.-= Jennifer H.´s last blog ..Fouth of July at Family Camp =-.
Seattle Children’s Hospital just had a conference on end of life care and asked me to share my experiance of when my son passed away at the hospital at 2 months old. I was nervous, sick to my stomach, but the whole 2 hours was so theraputic. I hope you find it to be as well. The doctors and nurses all gave me notes afterwards on how it will change their practicies. Being in the NICU is so hard and I really appreciated it when the nurses and doctors felt our pain and shared tears with us instead of pulling away. When my son died, there was no nurse in the NICU left because they were too torn up, which was hard for my husband and I to leave our son alone when we were ready to leave. I do wish that there was someone there for us the entire time just to see that we were okay.
I could say so much more…but too emotional thinking about it.
.-= Kelly´s last blog ..Archives…9th month =-.
Jennifer Carney says:
In many ways, my experience with the trauma was two-fold. The trauma of his birth left me on life-support. I actually awoke on a ventilator to discover that I had given birth to my 32-weeker two days earlier. I later learned that I had developed HELLP syndrome and eclamspia. My last memories before his birth turned out to be the beginnings of a seizure. A day after I awoke, my son was transported from the hospital where he was born to one with a bigger NICU. He left me – which I find is very different from the experience that a lot of families have with leaving their child behind in the NICU. He left me behind in the ICU. I’m still picking my way through the pieces of this experience. I’m not religious, but one of the chaplains was amazing. He knew how to talk about anything and everything. That helped. In reading back over the medical records, I can see the notes written about my mental state. They basically said that I was coping well – mostly because I had a good support system. I think this is completely oversimplistic. A good support system is great – but this was seriously traumatic. My family was also traumatized. It was hard. At the new NICU, we received similar non-advice. I found my support from other NICU moms later on. But the last time I entered a NICU to visit the twins of a friend – it was all right there. And that may never go away. Take care! And thank you so much for everything that you do.
Samantha Gianulis says:
Hi Heather…I had a NICU and Children’s Hospital experience that may or may not be what you’re looking for.
I still panic. I’m working on this.
.-= Samantha Gianulis´s last blog ..Quick Quark Chocolate Cheesecakes + Pasta with Clam Sauce =-.
I had a similar experience to one above where I also wound up in ICU for ten days (plus and additional month and a half in postpartum recovering. ) I had severe preeclampsia and HELLPS syndrome which led to a complete placental abruption at 28 weeks, which in turn led to DIC (and massive transfusions) as well as kidney failure and a month of dialysis. Needless to say I didn’t see my son right away!
However, I was fortunate enough to be in a hospital that had a NICU, and the NICU nurses were amazing. They took and developed pictures and brought them to me (along with a little NICU diaper). Then, amazingly, when he was six days old they made arrangements to transport him in his NICU to come up and see me in the ICU. What a difference that visit made to my weak exhausted body! Meeting my son really gave me mental strength to try to get better so I could go see him more.
The nurses were great later on as well. If for some reason I was a few minutes late for the diaper changing/temperature taking/ bathing and feeding times, they would often call my room to see if I was going to make it before they did it. They understood that little bit of interaction was the most interaction we often got with our baby and tried to respect that time as much as possible. Little things like that made a world of difference to me.
Heather, I somehow came across your blog not long ago and have cried through your story but thank you for sharing it and reminding us all to make the most of every minute. I too am currently going through a very high risk pregnancy (I’m also on blood thinner injections due to an underlying blood clotting issue) but I wish I had your Dr. Risky! Seriously mine the other day told me to reconsider this pregnancy if I wanted to live and treated me like I hadn’t really thought things out. (even though I’d consulted all my other doctors, and even got approval from kidney doc saying they looked great; and I’ve really tried to do my research on everything! Plus I was horribly monitored last time because they didn’t know I was high risk, nor did I, and my concerns were brushed off.. I’m hopeful the blood thinners and frequent appointments will help!) I know it’s all risky and unknown, but I’ve strongly felt like I will be able to have this baby and live through it. (I’m normal and healthy now! Perhaps there will be some bedrest but I can deal with that.) Anyway, I pray your pregnancy will go well and pray for you guys through this awful unexpected loss of your beautiful Maddie. I think it’s wonderful what you’re trying to do to help other parents who go through this. Sorry for my novel.. I know you have a million comments to read through, but I thought I’d share those those few things the nurses did that helped me. One other thing I’m grateful our NICU did was the kangaroo care.. such special moments with my baby. (I’ve been surprised to hear that NICU’s in some places don’t do that)
.-= Kerri ´s last blog ..Wind Rivers Wyoming! =-.
Heather – here are my comments. good luck with the speech! http://bunnybites.wordpress.com/2009/09/03/a-note-to-nicu-workers-aka-my-heroes/
I’ve been lurking on your blog for months now, and I don’t think I’ve ever expressed to you how sorry I am for your loss. Madeline was a beautiful child, and I can’t even imagine how the last few months have been for you. You and your family have been, and will continue to be, in my prayers.
There is an editorial in the Boston Herald today (Sept 5th) that made me think of you and your upcoming speech. It’s written by a woman whose daughter was born 15 weeks premature, and their family’s experience with the NICU and the resulting PTSD. I’m including the link to her editorial at the bottom of my comment, but she’s also written a book about it. You may have already heard of it or read it, but I thought it might be a good reference for you when you talk to the UCLA staff. It’s called “Small Wonder, the Story of a Child Born Too Soon” by Susan LaScala.
our son was almost 12 pounds when he was born by emergency c-section after 2 days of labor .. everything seemed fine until in the middle of the night of the second night in the hospital an intern came into my room, sat down on a chair and began rubbing his face repeatedly.. saying ‘there’s something wrong with your baby’ it was SO surreal.. i was the one left with asking all the questions and basically the only answers i could get was ‘ we dont know ‘ and ‘he’s been taken to i.c.u.’ . i rushed down there to see him in an incubator hooked up to wires and tubes. no one would give me any information. finally i took aside a nurse and demanded! some information.. she found his chart and told me he had a very rapid heartbeat and pneumonia. after 8 days in i.c.u. he recovered and now he’s a healthy 22 year old who has given me many rapid heartbeats during his growing up .. but i will say if there is ANY improvement over my story i would hope that parents would get better and faster information when a trauma hits with a sick baby .. and yes even after all these years and with a lucky outcome for our family this still bothers me and scares me.
Kim Seymour says:
Both of my sons (now 12 & 9) were born prematurely @ 30wks & 32wks. There were words spoken to me by nurses that I said to myself “I will NEVER say that as a nurse.” At the time, I wanted to start all over . . . do it right. I hated that the nurses got to be the “mom.” The first feeding, the first bath, the firsts’.
From 2001-2007, I worked as an RN in the NICU @ Primary Childrens Medical Center. It was a unique experience to be on both sides. I made a point to let the moms know that there were things they as a “mommy” could do that I, as a nurse could not. Provide breastmilk, KNOW their child in a way nurses could not. I let them stay forever @ the bedside, because I knew how hard it was to leave.
You are making good happen from an overwhelming tragic situation. Please continue your efforts & know that you have support & prayers! Maybe someday THERE WILL BE NO MORE PREMATURE BABIES!!!
Thank you for sharing your blog. I’m in constant amazement at your courage, honesty and candor during a truly horrible time. Maddie is a beautiful little girl and I can see how you are inspired.
Some background: I was in the NICU with my boys after a premature birth at 27 weeks. We had one son make it and one that passed away. These are the things I wish I could change:
1 – Have one go to doctor. We had attendings rotate every 2 weeks, so every 2 weeks our plan of attack seemed to change. While I understand they need to rotate out, it would have been good to have one consistent go to doctor that I could call and make a connection with. That knew our sons case.
2 – Surprise factor. The surprise factor really bugged me. I would call morning and night and spend most of the afternoon in the NICU but the nurses were constantly trying to surprise us. For example, moving him to a crib from the isolete or dressing him for the first time in hospital clothes. These things made me feel less like the mom, then someone who was hoping to adopt them! It really bugged me since I was calling all the time, they could have told me what was going on before I arrived. It broke my heart to see him in hospital clothes – I had tons of clothes for him at home!
3 – Another mom. It would have been really helpful for the hospital to provide me with some names of people who had been through it. I’ve never felt more alone. It would have helped tremendously if I could have spoken with another mom who traveled down this road. Even now, 8 months into it – I still would love to speak to someone who has been here and done this. It’s just a lonely road from the NICU forward.
Those are my top 3. Again, thank you for writing – you have given me a bit more strength day in a day out.
Good luck –
Jen Hodder says:
What an honor to be chosen to speak for such a great cause. My daughter and her Papa were struck by a car while crossing the street on June 17, 2009. We were at Sutter Hospital first because she was in such critical condition she would not have made the flight to UCD. Once she had two portions of her skull removed she was then stable enough to be airlifted to UCD. She stayed in the PICU-Trauma 1 for one month and then spent one month at Kaiser’s PICU and Ped. Unit. She was then transferred back to UCD for the past month.
I have to say I was mostly impressed with her care and loved how most nurses spoke in a very caring manner and seemed to be taking very good care of Aviana.
I was baffled by how many times it seemed as though the left hand did not know what the right was doing and how we had to step in so many times and explain what was going on. I was frustrated with how everyone seemed to have a different answer in regard to the process in a variety of areas. For instance, when the time came for our daughter to have all of the pieces of her skull put back on, we had asked what was to happen afterward. We asked how long she would be under, what types of medications she would be on, etc. and there were a range of answers from she will be out for at least twelve hours and on some serious meds. to she will be awoken right away and only on Tylenol. Very frustrating.
One thing that really bothered me was how everyone had to tell you about the prognosis, every step of every way possible. I understand maybe if you go to each hospital and they explain the prognosis, but once at that hospital and it kept happening. I wanted to scream….Look, I know you don’t think she will ever walk, talk or eat again…I get it!!
I just sat quietly towards the end and let my mind wander to a happier place :o)
I hope that helps. Thank you for listening!
.-= Jen Hodder´s last blog ..The Long and Winding Road =-.
Getting to this a little late, and a bit of a lurker you might say, but I do love your blog, and read it almost every day! I admire your strength and honesty and wish you and your family much more laughter, and happy times together. To get to the topic at hand, my brother in law, Adrian, passed away in the PICU at Rady’s Children Hospital in San Diego, CA. He had leukemia, and by the time they diagnosed and treated him, he was gone. The ironic thing was that he was in remission when he passed away, but his organs just couldn’t take it anymore. This November will mark the 2nd year anniversary of his death, which seems like only yesterday. The thing I would most stress about being in the PICU is that no one really explains things to you. There is so much medical jargon being tossed around, and snap decisions that have to be made, it would be nice if doctors could remember to really “explain” things that normal people could understand. A lot of bewilderment and hurt still runs deep in our family concerning my Adrian’s passing because they did not understand what was happening. It was explained to them, but not succinctly, and not in a way where they could comprehend the full meaning of what was happening to their son and brother. It left a lot of unanswered questions. I guess that would be my only complaint really. Rady’s hospital is a world-renown children’s hospital and I believe he recieved the best possible care, but it still would have been slightly easier to get through all that “doctorese.” Thanks, and sending only the best wishes and warmest thoughts and prayers your way.
Rebecca in San Diego
My son was born at 32 weeks, and spent just 23 days in the NICU (I know that is nothing compared to what so many NICU parents have experienced).
I had been on bedrest for over a month, then hospitalized the last couple of weeks with preterm labor. The neonatologists did a “consultation” at 31 weeks to prepare me for what NICU life would be like. That was one of the most helpful things they did!
(I was probably more prepared than most, since two of my bridesmaids also delivered preemies at 32 weeks! and we walked together through those tense moments and weeks.)
During the neonatologist’s consultation, I took copious notes, and as my scenario unfolded, I looked back at my notes:it was amazing how accurate their predictions were! The baby’s developmental stages, procedures, tests, all the tubes & wires–everything was just as they had said it would be.
They even prepared me for my own reactions! They would say ‘now at this point, a lot of parents will become very worried about [this procedure] for [x] reason’ and it was amazing to catch myself as it happened, and think back–‘oh wait! They said I would be responding this way!’
It was wonderful to be prepared in a moment of sanity while hospitalized on bedrest. I know many preemie moms don’t have that luxury.
I experienced some incredible, incredible nurses who seemed to care for him (and me!) with a family-kind of love. For example, I became sick, running a fever for a week while he was in NICU (an entire week I couldn’t see him!), and it was heart-wrenching. I would call his nurse regularly for updates. I would be in tears, and she would say ‘Listen, you’re his mom. Call ANY time, do you understand?” My heart was breaking–and it was SO comforting to hear that.
Then I experienced a nurse who was completely incompetent, didn’t even know whether he was gaining/losing weight, didn’t mention brady episodes that the neonatologist considered significant. . . and another nurse who told me basically to hold him once/day, and if I’d already held him that day that was enough. So I’ve seen good and bad nurses. . . Except for those two, I LOVED our nurses!
Our situation was also complicated because I was torn between caring for my 17-mo-old daughter at home, recovering from the emergency c-section, and longing to be with my son in the NICU. My husband was working, and with the hospital 45 minutes away, we were maxxed out.
It’s also important to have friends who can help out with:
1) Child care for older children or (in the case of multiples) siblings that have already been discharged (that in itself is a 24/7 job, and I spent so much time on the phone trying to coordinate: “who has my daughter now? . . . oh, you can’t watch her after all??” while trying to care for my son in the NICU)
2) Rides back/forth to the hospital after being discharged. I couldn’t drive for a couple weeks and my husband worked all day, so I was at the mercy of friends to drive me 45 minutes back and forth to visit my little guy every day.
3) Meals for the family/pick up and bring food to the hospital/meet the family at the cafeteria
4) Pray, pray, pray!!! Life is so volatile!
5) Supportive cards and phone calls, but understanding if the family doesn’t return them. Sometimes you’re dying to talk to someone. Sometimes you don’t want to even think about another phone call. Just having friends–true friends–that will be there, always be there, but understand you during this insane time.
6) Remember the challenges continue for the family after the baby is discharged: We were blessed: In our case, our son was doing very well when he was released, but still having apnea/brady episodes so he came home taking caffeine and on the AB monitor for four months. Although he only spent 23 days in the NICU, we had to stay home with him until his due date: five more weeks. Between bedrest, bedrest while hospitalized, the c-section & recovery, NICU and keeping him at home, I feel like I missed half a year of life! I felt secluded, often lonely, clueless about anything outside our little world . . .
Again, please understand that my situation is so incredibly minor compared to many many NICU experiences! I almost hate to offer any thoughts, because so many NICU families are there for months, dealing with life-long medical problems. We have had just a small taste of what these families go through in the NICU. And I have a huge desire to help in any way possible. . .
I’m pregnant again–almost 16 weeks!–and I’m starting progesterone shots soon. Hopefully we will have full-term babies this time!
.-= Becky´s last blog ..Weird Day. Rainy Day. =-.