When I became pregnant with Madeline I didn’t have an obstetrician. At that point, Dr. Looove had been doing all my girlie things so I hadn’t needed a Lady Business doctor. She suggested a few OBs, but I decided against them because they delivered their patients at the old, rundown UCLA hospital. That wasn’t appealing to me. I wanted what the stars had! This is LA, after all. So I found me a doctor that delivered at St. John’s Health Center in Santa Monica. You may remember that hospital from such notable births as Katie Holmes’ daughter, Brooke Shield’s daughter, and Tom Brady’s kid that he didn’t have with Giselle. I knew if it was good enough for these celebrities, it would be good enough for me. (I hate that I cared more about what celebrities had given birth at the hospital than what level NICU the hospital had. I was just clueless. St. John’s is a great hospital but it wasn’t great for our situation. ANYWAY.) While I was there on bed rest, Dennis Quaid’s twins were born down the hall in a fancy birthing suite. Dennis was seen by tons of my friends and family, walking the halls and riding in the elevator like a regular dad. He even spoke to some of them. GASP!

I’m telling you all this not to brag of my fanciness (I think it is well-established that I am not fancy), but to say that I have some experience in the whole “celebrity birth stories” realm. Dennis Quaid is definitely not in the same stratosphere of fame as Beyonce and Jay-Z, but the hospital DID up their game when he and his children were on the maternity floor. Mike and my other visitors said there were paparazzi outside of the hospital when the twins were born, but the hospital’s security kept them far enough from the entrance to the hospital that they didn’t bother anybody. Every visitor had to check in with security in the lobby, and then again when they reached the maternity ward. There were extra security guards patrolling the floor. It was a tight-ship, but it was all done without disrupting any other patient or patient family.

There are tons of rumors flying around about the birth of Babyonce: They rented out an entire wing of the hospital, they put tape over the security cameras, they renovated an entire suite for their personal use. And don’t even get me started on the rumors that Beyonce was faking the pregnancy and actually had a surrogate. The story that’s getting the most traction involves a family that claims security guards allegedly prevented from seeing their premature infants in the NICU (I say allegedly because the hospital denies this claim).

Now then. I AM fancy when it comes it NICU experience. I actually have been prevented from seeing my child in the NICU – four times, to be exact. Every time it was because there was a dire medical emergency going on in the NICU and NO parents were allowed in. The night Maddie arrived in the NICU, no other parents were allowed in for THREE HOURS.  When you want to see your very sick baby and you can’t, it’s upsetting, even when you know it’s for an extremely important reason. If what the NICU parents at Lennox Hill are saying is true, they have every right to be LIVID. If it had been me, the scene I’d have caused would be the stuff of legend. Jay-Z would be rapping about a crazy lady taking down security guards with her bare hands.

Here is my biggest problem with this whole rumor-laden fiasco – the hospital blew it. They lost control of what was happening on their maternity floor. The hospital has confirmed that Beyonce and Jay-Z had their own security detail. I don’t think that should have been allowed. It’s a bunch of guards completely unfamiliar with how Lennox Hill’s maternity floor operates. These private guards were only there to protect the interests of ONE family, at the expense of all the others. Lennox Hill should have been like, “Yo Hov, we got this. We’ll provide our own security guards who understand this joint, and we’ll add it to your hospital bills bills bills.” Experienced Lennox Hill security staffers would never have prevented family members from seeing other patients. They would have known better.

I hope that Beyonce and Jay-Z are mortified by these claims, and do their best to apologize for any inconveniences others may have faced due to their presence – rumored or not. And I really, really hope Lennox Hill learns from this and does it better the next time a mega-famous family delivers a child in their hospital. Regular non-famous parents deserve better.

© COPYRIGHT HEATHER SPOHR 2012 All rights reserved. This content may not be reproduced or transmitted in any form, by any means, without the prior written permission of the author.

I had a good day today. I went to the gym, and I didn’t 100% hate it. Annie didn’t nap, but she was in an awesome mood. I accomplished a fair amount on my To Do list.

And then this came in the mail, addressed to The Spohr Family:

It was a punch in the gut, even thought I’m so glad they are still thinking of and including us.

Bringing Madeline to her NICU reunion two years ago was one of the best days of our lives. We got to show the doctors and nurses that terribly sick 28 week baby survived, and was living, and bringing us joy.

What are we supposed to do now?

The day of the reunion we have an unbreakable commitment, and that’s a good thing. Otherwise I don’t think I’d be able to stay away from the reunion.

I want to see the nurses and the doctors, the people that saved Madeline after she was born. And I want to apologize.

I feel like they worked so hard, and gave us our baby, and we failed. She died when we were responsible for her. They gave up so much for her, and we couldn’t protect her.

I failed, and I want to tell them I’m sorry.

© COPYRIGHT HEATHER SPOHR 2012 All rights reserved. This content may not be reproduced or transmitted in any form, by any means, without the prior written permission of the author.

Two years ago today was one of the greatest days ever. After 68 days of fear, longing, and worry, our little girl finally left the NICU and came home.

the first time I ever walked around holding my daughter

Maddie on the loose!

in the sun for the first time

our family

When you’re in the NICU for as long as we were, you learn that discharge days are arbitrary. We saw plenty of parents get disappointed and frustrated as their child’s discharge date would get delayed for one reason or another. We were told Madeline would come home that week, but we didn’t let our hopes get TOO high. But that morning, our phone rang, and it was the head of the NICU. “Hi Mr. and Mrs. Spohr! Your daughter is ready to come home!”

Magical, wonderful words.

Mike and I raced to the NICU, car seat installed and ready to be occupied. We practically ran into the NICU and I gleefully removed the last sensors that were stuck to her skin. I dressed her in the going home outfit we’d chosen, and then I picked her up and walked around with her – the first time I’d ever been able to do that. She’d always been tethered to a monitor, or a medicine drip, or a an oxygen tube. But she was finally unencumbered. Mike and I walked her through the NICU for a goodbye – her victory tour – and everyone remarked how big she was. She weighed six pounds two ounces, double her birth weight. We thanked and hugged all the people who saved Madeline’s life, and then we left. I remember feeling like we should run, like the doctors and nurses were going to tell us that a mistake had been made and she wasn’t REALLY allowed to leave.

Mike drove so slow on the way home I still can’t believe we made it back before the sun went down.

Those first few days with her home were amazing and scary and fantastic. We stared at her. We couldn’t believe we got to be with her all the time, that we didn’t have to drive to visit her anymore.

Even Rigby stared at her:

the beginning of a (beautiful) relationship

We were so grateful to have our family together.

It was the best of times.

© COPYRIGHT HEATHER SPOHR 2012 All rights reserved. This content may not be reproduced or transmitted in any form, by any means, without the prior written permission of the author.

Madeline was born in November, so she spent her first Thanksgiving and Christmas in the neonatal intensive care unit. The NICU is always a scary and sad place to be, but the family holidays really emphasize the loneliness that comes with an extended hospital stay.

A few months ago many of you voted and wrote amazing things about my family and this blog. Because of that, we were chosen as the winner of the Best Overall Blog on TheBump.com. With it came this prize:

We turned around and gave the money to Friends of Maddie. That money funded forty Family Support Packs – enough for an entire NICU.

As you all know, Mike and I have made a few trips to the labor and delivery unit of the hospital. It happens that Madeline’s NICU is right next to L&D, so I have been reminded often of the babies living there, and of the sixty-eight days the NICU was our Madeline’s home. Mike and I thought the week before Christmas would be a good time to make a special trip to the NICU. We hoped to brighten the days of the families and also thank the nurses and doctors for their continued hard work.

On Wednesday, I loaded up my mom and cousin Leah, and off we went to the NICU with a load of Support Packs and enough cookies from the local bakery to feed a small army.

It’s very hard for Mike to go to the NICU at UCLA because it reminds him too much of those first few horrible days when Maddie’s life was touch and go. I, on the other hand, like to go there because I get to see the people that are responsible for giving me seventeen months with my daughter. They are the people who cared for her tirelessly, who never gave up on her even when the situation was so dire. Any opportunity I can get to thank them I jump at. Last Wednesday was no exception. I was happy to see many of the nurses that cared for Madeline, including one of her primary day nurses that I hadn’t seen in a very long time.

The best part, though, was handing over the support packs to the NICU Director. It’s always nice to send out support packs, but there is something especially meaningful about bringing them in person. Being there in the NICU and seeing some of the families sitting at their child’s bedside reminded me that there truly is a need for Friends of Maddie.

Thanks to all of you we are working to meet that need.

If you would like Friends of Maddie to come to your NICU in the New Year, please email friendsofmaddie at gmail dot com.

© COPYRIGHT HEATHER SPOHR 2012 All rights reserved. This content may not be reproduced or transmitted in any form, by any means, without the prior written permission of the author.

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.

© COPYRIGHT HEATHER SPOHR 2012 All rights reserved. This content may not be reproduced or transmitted in any form, by any means, without the prior written permission of the author.

After Maddie passed away, my Aunt Kathy started emailing me stories she’d planned on sharing with Madeline. As the oldest of my mom’s siblings, Kathy has always had a better recollection of the many events that happened during their childhood. Some of the stories I’ve heard a few times, and they always bring a smile to my face. Others are new to me, and I cling to every word, seeing the adventures unfold in my mind.

My favorite stories are the ones she tells of my grandma. My grandma was an amazing woman. She had five children in five years. She raised her children on her own (with a little help from my great-grandmother), worked full-time, and still made dinner every night. She lived with us when I was growing up, and taught me how to cook and bake. She was the best listener and was always available to take me to one of my many lessons or practices. When I got older, she let me borrow her car when I couldn’t bear the embarrassment of being dropped off by an adult. She always put her family first. We named Madeline in her honor.

A couple weeks ago my aunt told me the story of when her brother passed away. I already knew about Tommy. He was diagnosed with Leukemia when he was in elementary school. My aunts and mom all remember him being sick and laying on the couch. They were jealous (in the way only kids can be) that he got to watch so much TV and meet Tim Considine from “Spin and Marty” and “The Hardy Boys.”

Tommy (l) and Tim

I’m sure Tommy was jealous that his siblings got to go outside and play.

My mom and aunts knew Tommy was very sick, but they never thought he wouldn’t make it. This is because my grandma protected them all. She never let them see how scared she was. And then, when he didn’t make it, she kept protecting them.

My aunt wrote,

Since we lived in a shoebox there was really nowhere she could go to have the privacy she needed in order to grieve, so I never really knew if she ever found a place where she could truly experience the pain and sorrow she was feeling.  I just know that she kept on going for all of us and as time passed, to us, she was just like the mom she had always been in the past with one exception.  For several years after Tommy’s death, we would take rides out to the cemetery near the San Fernando Mission where he was buried.  We would stop at a roadside stand and pick up carnations, usually red ones, and then lay them on his grave.  I never saw her cry when we stood by his grave–she was so strong–but I also know that losing Tommy ripped a hole in her heart.

After I read this, it hit me that my beloved Grandma would have understood exactly how I was feeling. That we had a terrible, terrible thing in common. I missed her so much in that moment.

Yesterday, my mom and I went to the San Fernando Mission Cemetery. My mom hadn’t been for many, many years, and I had never been at all. As we walked the rows of markers searching for Tommy’s, I was struck by how close together the graves were. And then I started looking, and I realized we were in the children’s section. They don’t need much room.

I wandered the rows, reading the headstones, noting that some only had one day etched on the stone, while others had just a few years between the first day and the last.

Some had familiar dates.

And some had familiar personalities.

There isn’t enough room on a headstone to tell the story of a child’s life, or a parent’s love.

I thought about the parents that had walked the same path as me all those years ago. I felt overwhelmed by sorrow.

After a bit of help, my mom found Tommy under the shade of a tree.

We laid down flowers. Red carnations, like my grandma used to bring. And purple ones, for Madeline.

I stood there, covered by the shade of Tommy’s tree, and I thought about my grandma. I felt her pain, our pain. I pictured her coming to visit her son and not being able to cry for fear she’d frighten her other kids. I imagined her coming without her kids, and kneeling on the grass. I hoped she got her release. I cried for her in case she didn’t. I cried for my mom, and my aunts. I cried for all the other parents that had knelt on that lawn. I cried for my Uncle Tommy. And I cried for my Madeline.

Aunt Terry, my mom, Uncle Tommy, & Aunt Kathy

© COPYRIGHT HEATHER SPOHR 2012 All rights reserved. This content may not be reproduced or transmitted in any form, by any means, without the prior written permission of the author.

Last week I became a March of Dimes Mom (my picture and bio aren’t up yet because I haven’t found a picture I like!). I am so honored to be able to give back to the community that did SO much for Mike and me when we were dealing with Madeline’s gestation and hospitalization. Once a month I’ll be blogging about the issues that Mike, Madeline, and I deal with due to prematurity. You know…pretty much like I already do!

The number one email I get is “I have a friend/cousin/neighbor with a baby in the NICU. What can I do for her/him?” After receiving three emails like this in the last four hours, I thought I would post my advice here. As with all advice, take it and adapt it to your friend. Everything I’m suggesting was what MIKE and I needed – it might not apply to the person you know in this situation. Disclaimer, shmishclaimer, let’s get on with it.

Things you can SAY:

• Say Congratulations – this might seem like a no-brainer, but I can count on one hand the number of people that congratulated me on becoming a new mom. A baby is an amazing, joyous event, and should be treated as such.
• Ask questions. Just like you would ask a mom with a healthy baby how breast feeding & weight gain is going, ask a NICU parent how their baby is doing. Don’t be afraid to ask what acronyms and medical terms mean. The parents will be happy to talk about their child – it makes the baby more real, more THERE, even when the baby is miles away.
• Ask to see pictures – just like you would with a healthy baby.

Things you should NOT say:

• “When can I see the baby in person?” No one wants to show off their baby more than new parents. If they are comfortable bringing you into the NICU to see the baby AND the baby is healthy enough, they will practically drag you back there.
• “When is the baby coming home?”As soon as the parents know, YOU will know.
• “She’s going to be okay.” Do you have a crystal ball? That’s what I thought. You DO NOT KNOW the baby is going to be OK. Believe me. TRUST ME. Infections are the dirty secret of the NICU, and they can hit any baby at any time. They are MAJOR, sometimes life-threatening setbacks.

What you can DO:

• Offer to help. Volunteer to: walk dogs, do laundry, bring books & magazines, lend a computer if the parents don’t have a laptop, Google medical terms, print up NICU terms, babysit older kids, send cards, start prayer groups (should you be so inclined), pick up pumping supplies, be another set of ears when the parents need to hear important information – this could go on and on. Just BE THERE for your friends however they need you.
• Sit in the waiting room, especially during a procedure.
• Meet your friends for dinner in the Hospital Cafeteria. Better yet, BUY them dinner. BEST, BRING them dinner. Most NICU parents forget to eat. This is obviously not good, ESPECIALLY if the mom is breast feeding. If you make an appointment to eat with them, they will have to eat something.
• If you can’t be there in person, call or email. You might not get a response, but it will definitely be heard and appreciated.
• Offer to be the mom’s chauffeur. In my case, I’d just had surgery and wasn’t cleared to drive. Mike often went to the NICU first thing in the morning, but I had to stay home to pump and recover. My friend Brianne took me to the NICU and I was SO grateful.
• Be the spokesman. The parents will have MANY people that want to know how the baby is doing. Offer to be the point person. Answer questions, email updates, keep everyone else informed.

What you can BRING:

• FOOD
• Comfortable clothes, especially for the new mom who just gave birth. NOTHING fits her. Bring her yoga pants, sweats, anything she can be comfortable in.
• Button-down shirts and zip-up hoodies. These are AMAZING for when parents practice Kangaroo care.
• A disposable camera to leave at the baby’s bedside so the nurses can take a picture of the baby when the parents aren’t there.
• Gifts for the nurses. Nurses run hospitals – doctors just drop in. The parents will soon realize this, but they will have a hard time getting out of the hospital to get stuff for the nurses. Help them by bringing cookies, cakes, etc.
• A NICU Parent Care Kit. These are some of the things Mike and I had, or wish we had:
  • kleenex
  • hand lotion (EXTREME CARE)
  • chap stick
  • antibacterial lotion
  • energy bars
  • gum, mints, mouth wash
  • tooth brush & toothpaste
  • hairbrush
  • disposable camera
  • gift card to baby store
  • hospital parking pass (most hospitals offer long-term parking options, but it’s still pricey)
  • wet wipes
  • energy bars
  • BOOKS (Maddie’s favorites are Goodnight, Moon and Madeline)
  • oatmeal cookies (oatmeal is good for breast milk production)
  • a notebook & pen to be a journal of thoughts, treatments, etc

ALWAYS REMEMBER:

• The Dad. Mike heard countless times, “Oh, your poor wife.” As if he wasn’t also suffering! The dad’s baby is sick, too.
• The NICU is a roller coaster, and just because you got good news from your friend yesterday doesn’t mean you’ll get good news today. Be prepared for any kind of update.
• Be the kind of friend your friend needs. Some people want optimistic friends, some want realistic, some want silent pals, some want comedians, and some want all of the above. Know your friend, and LISTEN to what he or she needs. And then BE what s/he needs. Even if that means being the realistic friend when you’re normally Pollyanna. Even if you have to make fart jokes when you’re normally quoting statistics. Even when you have to admit that the baby might not make it. Especially then.
• Don’t tell the parents how scared you are. THEY ARE MORE SCARED.
• Saying something is always better than saying nothing. Get over yourself and contact your friend. They will remember that you didn’t. Yep. THEY WILL REMEMBER.

In the end, you know your friend/cousin/neighbor the best. Do what feels right. But do SOMETHING. The NICU is a hard place to spend time – do what you can to make a few minutes a little brighter. You’ll be glad you did.

Did I forget something? Let me know!!!

© COPYRIGHT HEATHER SPOHR 2012 All rights reserved. This content may not be reproduced or transmitted in any form, by any means, without the prior written permission of the author.

The Radiologist Dr. Looove consulted agrees that Maddie needs a more in-depth scan. Dr. Loove has opted for an MRI because it doesn’t have radiation (a CT does). I had to call today to schedule the MRI, but it’s not as easy as just calling. I dialed the number and listened for the option to schedule a pediatric MRI. They not only had that option, but there was even an option for pediatric MRI with sedation. I know that the fact there is a phone option for pediatric MRI with sedation should make me feel better – that this is something they do all the time. But it doesn’t. It just makes me feel sad. Because sedation is required, the MRI has to be coordinated with anesthesiology. I should receive a call back in a few days with the time and date of the scan. Yay.

In other medical news, Maddie had another follow-up with the NICU clinic (she’ll have these follow-ups until she’s about three). I wasn’t too worried about this visit – Maddie is doing great. I was curious to see what her stats are, and I was slightly anxious to see what weird thing the doctors decided to seize on this time (last time they said her thumbs were effed-up). Her pulse ox level was 95 (good for her), her blood pressure was normal, and her heart rate was normal. Yay! She’d grown 3/4 of an inch since November, and her head had grown AN INCH in circumference. But her weight. Always her damn weight! She’s been stuck at 14 lbs 15 ounces for the last six weeks. It seems like every three pounds she plateaus. It’s beyond frustrating. The rest of the visit I kept waiting for them to bring up her giant head and little body.

The nurse that took her vitals and set us up in a room said that the doctors were fighting over who got to evaluate her, which was cute to hear. Maddie was in a (typically) great mood, so I could see why that could be the case. Two developmental specialists came in to play with her. The male doctor  interacted with her while the female doctor asked me questions and generally kept me busy so I couldn’t be a stage mom. It worked for a while, but soon the male doctor was asking her to point out things like dogs and cookies, and I wanted to shout “she doesn’t eat cookies!” but I resisted. Barely. After he played with her for about 45 minutes, he asked me if she did any “tricks.” I listed off what she could do, and of COURSE Maddie wouldn’t do ANY of them for the doctors. I wanted to tell him i have lots of videos of her performing, but I resisted. We then took Maddie into the hallway so they could see her crawl and pull to stand. I set her down on the floor next to a small child-sized table, and instead of pulling herself up on it, she looked at us, waved, and then took off down the hall. She was OVER the NICU evaluation.

The last two minutes of the evaluation were spent doing typical doctor things – listening to her chest, looking in her eyes, ears, and mouth, and checking her flexibility and reflexes. The doctors kind of bent her legs around a little, and the male doctor tried to hit that reflex spot on her knee with a make-shift knee-spot-thingee-hitter thing. Then they said they were going to talk with the attendings and come back to give their report.

While they were gone, I almost told St. Grandma (who came along) my predictions for problems. I just KNEW they were going to talk about the big head/tiny body thing. The female doctor quizzed me on Maddie’s nutrition for ten minutes so it was obviously something they were keyed on. Which is fine. I’m all for figuring out ways to help her gain weight. But I think giving her at least 24 ounces of pediasure, 8-16 ounces of whole milk, breakfast, lunch, dinner, and two snacks AND ice cream every day is a lot of calories. I’d be rolling into the plus-size store with that kind of diet.

The doctors and attendings (four in total!) came back after about thirty minutes of discussing Maddie. They were very pleased with her cognitive development. She did well at interacting, and they could see that she is a happy and well-adjusted baby. They said that her fingers have improved since her last visit (take THAT stupid thumb loops!) but that she still has a slight gross motor delay (which, duh. Ex-preemie!). Then they danced their way to the enormous head/slight body issue. They said that because she is small with a large head and low muscle tone, they think there might be an underlying genetic issue.

Um, what? Back up there. Low muscle tone?

Apparently when they checked Maddie’s flexibility and reflexes, they decided she had low muscle tone (something called hypotonia). And just reading the wikipedia explanation of hypotonia and how it effects development is irritating me because she has none of these symptoms. So now she has to meet with a geneticist. Oh goody gumdrops, more tests and blood work for my baby!!! I’m so excited, ZOMG!1!! And because of her slight gross motor delay, they want her to get evaluated by Regional Center (again). YIPEE!!!

As her mom, I feel like nothing is wrong here. But I’m not a doctor (I just play one on the interwebs). I’m having a hard time figuring out what is necessary and what is excessive.  Where do I draw the line? From MRIs to genetic tests, when do I say enough is enough, stop looking for problems that aren’t there? And what if I draw the line at genetic tests and there IS a genetic issue? My job is to protect her from trauma and pain. Why can’t this stuff be as clear-cut as not playing with knives and scissors? This humongous head is counting on me.

© COPYRIGHT HEATHER SPOHR 2012 All rights reserved. This content may not be reproduced or transmitted in any form, by any means, without the prior written permission of the author.

Today was a day I’ve been looking forward to since January 18th. The hospital Maddie was at for the first ten weeks of her life held their NICU reunion. The reunion is every other year, so they are always a big deal. When Maddie was sick, I used to tell myself, “just wait until October. She’ll be better and you’ll be showing her off.” But, even though that was my mantra, I can’t believe that it’s already October, and I was showing off my ELEVEN month old daughter today.

It’s been California-cold the last couple of days (you know, like in the low 60′s…heh), so I dressed Maddie in a sweater, tights, and a skirt. Poor thing was SWEATING at the party, because in typical California fashion, the weather was in the 80s today. It really was perfect for a picnic.

When Mike, Maddie and I walked into the picnic area, we were blown away by how ALL OUT the NICU staff had gone. There was a petting zoo. Pony rides. A bounce house. A Sundae station. Three hot food stations. A candy bar. A candy sculptor. Face painting. Puppet shows. Maddie will have a BLAST here in two years. This year, she just took it all in.

Shortly after arrival we were approached by a former “roommate” of Maddie’s from the step-down unit. It was so great to see him doing so much better. It’s almost impossible to remember people from the NICU, especially when you’re there as long as Maddie was. So many people come and go that you stop trying to even get to know them, mostly because it’s just too damn painful when they inevitably are discharged before you. Luckily, a few parents remembered Mike, Maddie, and me, so they came up to us.

Of course, as nice as it was to get toys and see former friends, Mike and I really wanted to see the people who saved Maddie’s life – her nurses and doctors. We had to make a few laps around the picnic, but finally we came across the nurse that was there the first night Maddie was transferred to the NICU. She was so kind and considerate that she became a favorite of Mike’s and mine. She volunteered to be one of Maddie’s primary nurses, which made Mike and I so relieved. When you can’t take care of your own baby 24hrs hours a day, it’s nice to feel comfortable with the people who CAN.

I’ve always struggled with how to thank all the amazing people who saved Maddie’s life. The doctors and nurses who pour their hearts and souls into the unit are 100% responsible for my daughter still being here today. Two little words don’t seem like enough. But today it occurred to me. Just sending them photos and updates and occasionally bringing her by is the perfect way to show gratitude. They want to know that Maddie is crawling, teething, and a terror at night. When they hear those stories, they know they succeeded.

I wish that parents with babies currently in the NICU could attend the picnic. I can’t tell you how much it would have helped my morale to see so many healthy babies. Every day in the NICU seems like a year, and it’s hard to ever imagine that you’ll have a life outside of the unit. I want to give all those parents a hug and show them Maddie. I want to tell them that someday they’ll be at the NICU reunion, too. That no matter how hard it it seems, there is a smiling baby only a few months away.

© COPYRIGHT HEATHER SPOHR 2012 All rights reserved. This content may not be reproduced or transmitted in any form, by any means, without the prior written permission of the author.

I just spent the evening playing with Maddie. She’s still army-crawling up a storm (one of these days she’ll figure out that her legs are helpful), discovering her toys, and interacting with Mike and me. It’s so much fun to watch her world expand by leaps and bounds every second of the day. We are loving every moment of this.

Now that Maddie is sleeping (an amazing achievement in and of itself), I’ve been thinking about how little she used to be. I’ve been going through her clothes, trying to make room for winter wear and packing away a few articles of clothing that don’t fit her anymore. I came across her preemie clothes and paused. There on top of the pile was the first shirt I ever bought Madeline, the first shirt she ever wore. She didn’t wear clothes until she was three weeks old. I found a pink and green camouflage shirt that I thought would show off her fighting spirit. At the time, she was still hooked up to a bunch of IVs, and was on the ventilator.

The shirt is for a preemie up to five pounds. In this picture she’s just past three pounds. It’s swimming on her, just like her diaper. I didn’t even know clothes were allowed for NICU babies until her nurse told me to bring her shirts and socks. I went out and spent $100 on socks alone. I didn’t want her feet to be cold.

I went to my You Tube site and I found a video of her, wearing the same shirt, on the same day. She’s agitated and crying, although you can’t hear the sounds of her displeasure because of the ventilator.

I’m so grateful that our NICU encouraged video and pictures. When I’m feeling down about Maddie’s slow weight gain, it’s so helpful to look back and see how far she’s come. I have footage of her first cries after her ventilator was removed. Her voice was so hoarse from the vent tube. Her first sneezes were so small.

I stare at her every day, and I still see that tiny three pound baby she once was. Sometimes you just need a visual to illustrate the days gone by.

© COPYRIGHT HEATHER SPOHR 2012 All rights reserved. This content may not be reproduced or transmitted in any form, by any means, without the prior written permission of the author.