Comments on: We’re Gonna Make A Change http://thespohrsaremultiplying.com/heather/were-gonna-make-a-change/ Wed, 23 May 2012 14:25:36 +0000 hourly 1 http://wordpress.org/?v=3.3.2 By: | The Spohrs Are Multiplying… | » Him http://thespohrsaremultiplying.com/heather/were-gonna-make-a-change/#comment-64798 | The Spohrs Are Multiplying… | » Him Thu, 17 Jun 2010 07:31:44 +0000 http://thespohrsaremultiplying.com/?p=1362#comment-64798 [...] day after Maddie’s birthday, I participated in a symposium at UCLA (the one where I reconnected with The Nurse). UCLA has two hospitals in our area. There is a [...] [...] day after Maddie’s birthday, I participated in a symposium at UCLA (the one where I reconnected with The Nurse). UCLA has two hospitals in our area. There is a [...]

]]> By: | The Spohrs Are Multiplying… | » Gifted http://thespohrsaremultiplying.com/heather/were-gonna-make-a-change/#comment-38136 | The Spohrs Are Multiplying… | » Gifted Tue, 29 Dec 2009 08:52:47 +0000 http://thespohrsaremultiplying.com/?p=1362#comment-38136 [...] day after Maddie’s birthday, Mike and I participated in a symposium at UCLA for pediatric doctors and nurses. Before the our session started I stood off to the side of the [...] [...] day after Maddie’s birthday, Mike and I participated in a symposium at UCLA for pediatric doctors and nurses. Before the our session started I stood off to the side of the [...]

]]> By: Becky http://thespohrsaremultiplying.com/heather/were-gonna-make-a-change/#comment-26331 Becky Thu, 17 Sep 2009 00:33:42 +0000 http://thespohrsaremultiplying.com/?p=1362#comment-26331 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 ..<a href="http://theeclecticdabbler.com/archives/1680">Weird Day. Rainy Day.</a> =-. 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. =-.

]]> By: Rebecca http://thespohrsaremultiplying.com/heather/were-gonna-make-a-change/#comment-26326 Rebecca Wed, 16 Sep 2009 20:33:52 +0000 http://thespohrsaremultiplying.com/?p=1362#comment-26326 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 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

]]> By: Jen Hodder http://thespohrsaremultiplying.com/heather/were-gonna-make-a-change/#comment-26118 Jen Hodder Tue, 15 Sep 2009 22:48:46 +0000 http://thespohrsaremultiplying.com/?p=1362#comment-26118 Hi Heather- 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 .-= Jen Hodder´s last blog ..<a href="http://avianareese.blogspot.com/2009/09/long-and-winding-road.html">The Long and Winding Road</a> =-. Hi Heather-

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
.-= Jen Hodder´s last blog ..The Long and Winding Road =-.

]]> By: Patty http://thespohrsaremultiplying.com/heather/were-gonna-make-a-change/#comment-25757 Patty Fri, 11 Sep 2009 18:28:42 +0000 http://thespohrsaremultiplying.com/?p=1362#comment-25757 I would love to talk... Should I email you directly? Thank you! I would love to talk… Should I email you directly? Thank you!

]]> By: Amy http://thespohrsaremultiplying.com/heather/were-gonna-make-a-change/#comment-25751 Amy Fri, 11 Sep 2009 17:35:28 +0000 http://thespohrsaremultiplying.com/?p=1362#comment-25751 Patty-if you want to talk just let me know and I'll send you my email address. Amy Patty-if you want to talk just let me know and I’ll send you my email address.

Amy

]]> By: Amy http://thespohrsaremultiplying.com/heather/were-gonna-make-a-change/#comment-25707 Amy Fri, 11 Sep 2009 12:01:28 +0000 http://thespohrsaremultiplying.com/?p=1362#comment-25707 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. Good luck! Am 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.
Good luck!
Am

]]> By: Patty http://thespohrsaremultiplying.com/heather/were-gonna-make-a-change/#comment-25669 Patty Fri, 11 Sep 2009 01:36:00 +0000 http://thespohrsaremultiplying.com/?p=1362#comment-25669 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. Thanks, Patty 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.
Thanks,
Patty

]]> By: Patty http://thespohrsaremultiplying.com/heather/were-gonna-make-a-change/#comment-25667 Patty Fri, 11 Sep 2009 01:29:32 +0000 http://thespohrsaremultiplying.com/?p=1362#comment-25667 Heather - 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 - Patty Heather -
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 –
Patty

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