help/info for family with baby in NICU

MsBlack · Nov 21, 2010

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Greetings, all--
 
I am writing on behalf of friends whose 4day old baby is in NICU following placenta abruption and serious oxygen loss. The baby is in a fantastic hospital, the family has a great personal support system, and the baby is showing all the best possible signs so far. Still, there is a strong likelihood that their daughter suffered brain damage, possibly severe (although it's too early to tell). She may be hospitalized for a long while. So I am looking for resources for them, on making the best of the hospital experience (they are living at the hospital for now), and on parenting a special needs baby/child. Can anyone recommend books/literature...or offer words of wisdom from personal experience? Anything that helped you, may help them, too. They are eager to learn all they can....to grieve and worry right now, yes---but also to move forward in life in all possible positive ways.
 
I will search this forum for threads that seem apt, but if you can link me to any good threads that you know of, I'd much appreciate it.
 
thanks!
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coyotemist · Nov 21, 2010

No real suggestions, but hugs, and added to prayers.

sncmom · Nov 22, 2010

Is the baby getting cooling? If not, the parents should transfer her/him to a children's hospital where it is possible to receive it. It is a process that helps mitigate some of the damage caused by the hypoxia. It is actually the imflammation following the hypoxia that causes the true injury, and cooling seems to help. Check out the facebook newborn cooling page for some miraculous stories. Unfortunately, my daughter did not receive it because she had a confusing presentation. Also they should look into hyperbaric oxygen therapy. Please feel free to email me offline as my daughter had a hypoxic birth inury and this has been the primary focus of my life for the past 2.5 years.
 
(also posted this on your other thread)
 
They should not accept that injured brain is dead! The brain can heal and they can help it despite what they will almost undoubtedly be told in the NICU.

bandgeek · Nov 22, 2010

My DD suffered a severe brain injury before or during birth (we don't really know). I keep a blog for my DD if you want to share it (it's in my profile). DD is quite severe, so for some people it may just scare them, but for other people it can be uplifting (or so I'm told) because *despite* her brain injury, she's a wonderful, happy little girl and we really have very normal lives.
 
There's a yahoo group for parents of kids with HIE (HIESC is the name of it I think), which if she suffered brain damage will probably be the diagnosis she initially receives.
 
I've talked with many parents who've had HIE babies that ended up with only mild delays, and others who have kids more like mine, with severe CP and such. It really can go either way.
 
In any case, see if she can be put in contact with support services through the hospital, or maybe see if they have a palliative care team. When DD was in the NICU we had an awful time because doctors kept insisting we HAD to do this or that. We thought at one point she HAD to have a trach to go home. ALL of it is a personal choice. They don't HAVE to do anything. If their DD ends up on the more severe side, they will likely push interventions, but they need to know their options. For example, maybe she starts taking a bottle, but doesn't swallow well enough to do it 100%, they may say she HAS to have a g-tube put in to go home, but really she doesn't, if they don't want to do it. They can use an NG tube, avoiding surgery, give her time to grow and mature and decide LATER if a g tube is warranted. That's just one example. Making decisions about interventions for these kids is not an easy thing.

MsBlack · Nov 22, 2010

bandgeek--
 
thanks for pointing out that families still have choices, even in such 'medically intensive' situations. I'm sure that we all (fam and supporters) will get quite the education on all of this as time goes on. And I know dad is keeping his brain and choice-making facilities in gear....of course he wants all the best for his daughter, but makes no assumptions that 'Doc always knows best'. Helping him know what questions to ask is part of what I hope to do.
 
s+cmom--
 
thanks for your offer, I will pm you later. Baby did get cooling treatment, now being backed off in view of such good signs in baby. Today we'll see how that has been going, and whether or not the next steps forward are indicated (taking baby off vent, starting nutrition to stomach, etc.). I agree, the brain can heal--and even the docs have explained why there is reason for hope (even while saying baby is definitely out of the woods yet and might not make it). 
 
Also appreciating all prayers/pos thoughts sent their way

KAT2006 · Nov 22, 2010

Just a little fyi, babies that qualify for cooling MUST start the cooling process by 6 hours old. After the 6 hour mark there is no benefit and the cooling process will actually be more detrimental. Sending good thoughts!

Kat

MsBlack · Nov 24, 2010

Thanks, Kat--
 
Yes cooling was initiated very soon. Baby is now warm again and looking very good in all possible ways. 
 
Now it seems to be a matter of weaning her dependence on the vent and drugs--that difficult, tricky process of balancing the positive help of those things against the harm/delay they also cause. Wow, it's a pretty enormous thing--so very complex medically speaking, as well as psychosocially and spiritually. The science is so new still, for one thing, and of course each baby is unique as a being, and in their biochemistry both--the medical calculations are enormous and far from fool-proof yet. Then you add the various players' values and religion (who is God, where does God fit in the picture), and stir in the lego-political stuff about 'who has the power' (seems like its the docs) and 'who has the responsibility' (it's the parents who pay, and must daily find the ability to respond to all the effects of costly care)...wow. 
 
input appreciated by all concerned!

MsBlack · Nov 29, 2010

Just wanted to say that this baby is doing most excellently...and today she is going to be breastfeeding for the first time! Docs are totally amazed at her progress and vigor. She will go home as soon as BF is going well-enough--just another few days, likely. 
 
thanks for support!

Tobeborn · Nov 30, 2010

Fantastic update! I have had this family in my thoughts. I hope that things continue to improve!

MsBlack · Dec 1, 2010

Well, not quite fantastic yet...we had not figured on the effects of phenobarbitol on the baby, along with initially a pretty poor LC consult in the hospital. (I'm sure the LC is a good person with lots of knowledge, but honestly she just seems a bit burned out on her job). Anyway, baby has been too sleepy to nurse and is having some other side-effect issues with the phenobarb that is interfering with overall progress. Luckily, 2 things are underway--they met an OT who is suggesting kangaroo care (which the LC just pooh-poohed), and the docs are looking into backing off the phenobarb now (which is really being used as a precaution that's not evidence based at this stage of baby's progress). So, small steps. Yes, it is fantastic that their baby is doing so well, all things considered! Thanks for the posiitve thoughts and prayers, people...at this point, I think the family still needs that to help them stay strong and keep fighting for their baby.

coyotemist · Dec 1, 2010

If she hasn't had an actual seizure, and the phenobarb is just precautionary, that is excellent news.
 
It doesn't mean that issues might not come up as time goes on. There may be things in the future that seem completely unrelated to the brain injury, but are. However, that stuff can only be dealt with on a case by case basis.
 
I've seen the cooling work well. The particular baby I saw it on never should have lived, and did, he also had seizures. He'll never be who he was before the accident, but he was amazingly well.
 
I'll continue thinking of them.

MsBlack · Dec 2, 2010

She had a seizure early on (or maybe 2, this is unclear). Yes, excellent news that at this point, the phenobarb is precautionary...bad news is that it is now hanging up progress for this baby!
 
What I'm learning in researching this for the family, is that HIE most often by far occurs for premies; and it is premies who are most greatly at risk by far, over full term, otherwise healthy babies. And it is true that in the NICU, the VAST majority of babies are premies...the staff just has no experience with HIE in a full term, 8lb baby--they can't seem to see her as she is, only as they see their premies every day. Gah!
 
It is even very hard to find literature on full termers with HIE. But the stuff I've found only confirms my suspicions that they are over medicating and generally over managing this baby. Seizures are medically known to be 'self-limiting' once the crisis has passed--the tendency toward seizures is greatly reduced or eliminated once baby is off cooling and off the ventilator, otherwise stabilized. This baby has shown no inclination toward seizure activity...and EEGs and MRI indicate that they are unlikely for her.
 
Believe me I do not underestimate the near-death danger she was in, nor the potential for ongoing problems when a baby has experienced HIE! Just seeing that there are varying shades here...and varying individual needs that seem to get missed in a busy busy staff dealing with the whole herd of HIE babies--all the others quite different as premies (some very very premie) from this well-grown, full term baby. 
 
thanks, I appreciate your participation and input here--everyone's!
 
<div class="quote-container">Quote:
<div class="quote-block">Originally Posted by coyotemist <a href="/community/forum/thread/1280886/help-info-for-family-with-baby-in-nicu#post_16084154"><img alt="View Post" class="inlineimg" src="/community/img/forum/go_quote.gif" style="border-bottom:0px solid;border-left:0px solid;border-top:0px solid;border-right:0px solid;"></a> If she hasn't had an actual seizure, and the phenobarb is just precautionary, that is excellent news.
 
It doesn't mean that issues might not come up as time goes on. There may be things in the future that seem completely unrelated to the brain injury, but are. However, that stuff can only be dealt with on a case by case basis.
 
I've seen the cooling work well. The particular baby I saw it on never should have lived, and did, he also had seizures. He'll never be who he was before the accident, but he was amazingly well.
 
I'll continue thinking of them.
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MsBlack · Dec 6, 2010

New Question! 
 
This time about feeding. At this point, baby is coming up on 3 wks and doing great in most ways. Feeding is going slow--there is progress, but slower than I think it could be, and I think baby's NG tube for feeding is in the way of progress. There is the tube itself (ugh) and also the feeding schedule of every 3hrs. There is the fact that SNS is not available at the hospital and no belief that it could be helpful. There is much more holding/cuddling allowed now, but only 1 session of breast-feeding attempt allowed per day. Baby is increasing the amount she eats pretty fast--partly bottle fed, the rest by NG. Can anyone tell me about your experiences getting baby off gavage and fully onto oral feeding? Anything at all....
 
thanks!

justKate · Dec 6, 2010

MsBlack, did you say whether the baby was full term? My DD was full term but in the nicu for 3 weeks for other issues--i pumped but she didn't latch until we got home, she was 3 wk + 2 at that point. If baby is succesfully bottle feeding I'm not sure why they wouldn't let her try to BF more than once daily, unless it is related to her injury or if she is prone to distress from the effort. With DD she they would bottle feed 'till full, then gavage the rest which she would promptly vomit back up. We eventually got them to go down to only "forcing" 75% of what she "should" be taking, so for example if they wanted her to get 40 mL based on her weight/age, she would take 20 mL by bottle and 10 mL by NG. Then we worked up, which seemed to slow the vomitting. 
 
IME some hospital LCs are so stressed working with people who need more basic help that they lose sight of the less common but more serious issues. We had a speech pathologist person (?) (Like an OT for the mouth/language, can't think of what she was called right now.) seeing DD in the nicu to verify that her suck-swallow was good... This might be someone that could give the docs info on the SNS, if s/he thinks it would be helpful. 
 
Is the baby's primary issue getting off the NG tube the amount she's able to take in? That was part of my DD's issue, and it really is frustrating because you think to yourself, "if they'd just let her eat half as much every 1.5 hrs. instead of every 3 hours, she'd be fine...."
 
Keep us posted!
 
Kate

MsBlack · Dec 7, 2010

<div class="quote-container">Quote:
<div class="quote-block">Originally Posted by justKate <a href="/community/forum/thread/1280886/help-info-for-family-with-baby-in-nicu#post_16097537"><img alt="View Post" class="inlineimg" src="/community/img/forum/go_quote.gif" style="border-bottom:0px solid;border-left:0px solid;border-top:0px solid;border-right:0px solid;"></a>
 
Is the baby's primary issue getting off the NG tube the amount she's able to take in? That was part of my DD's issue, and it really is frustrating because you think to yourself, "if they'd just let her eat half as much every 1.5 hrs. instead of every 3 hours, she'd be fine...."
 
Keep us posted!
 
Kate
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Yes, EXACTLY this! 
 
Yes, full term, 8lbs and a real fighter. You are right the LCs are not really able to give the time for personalized attention--and besides, have to deal with the whole squad of nurses/docs and their scheduling issues and so forth. The OT there did suggest kangaroo care, but it is not being much used--because of the scheduling issues, worries about baby burning too many calories...gah. It all seems to me to be 'just in case' precautions, along with nurses/docs not wanting much ruffle in their daily rounds. Small steps, I guess.
 
thanks so much for your post, it really helps to get comments from those who've been there!

justKate · Dec 7, 2010

<div class="quote-container">Quote:
<div class="quote-block">Originally Posted by MsBlack <a href="/community/forum/thread/1280886/help-info-for-family-with-baby-in-nicu#post_16097874"><img alt="View Post" class="inlineimg" src="/community/img/forum/go_quote.gif" style="border-right:0px solid;border-top:0px solid;border-left:0px solid;border-bottom:0px solid;"></a> <div class="quote-container"> It all seems to me to be 'just in case' precautions, along with nurses/docs not wanting much ruffle in their daily rounds. Small steps, I guess.</div>
 
thanks so much for your post, it really helps to get comments from those who've been there!
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On of the things that helped move us forward was getting nurses on board. We were at a teaching hospital, so there were also residents to bother with questions. It is hard, but there's just so much liability involved for the docs... it's hard to blame them, but it's hard not to at the same time. I'm sorry your friend is going through this. Those NICU days were the darkest days of my life, but there is light on the other side of the tunnel. Of course things might not look the way we expected them to look, but it will be brighter. Take care of your friend, she's lucky to have you.
 
Kate

MsBlack · Dec 8, 2010

justKate--
 
thanks for all of the above...I agree that the med people have their own valid concerns. And yeah, working with nurses as much as possible seems most practical, they're the ones mostly dealing with the babies.
 
Things seem to continue to improve for baby (entirely off resp supplementing now, one less tube, YAY!). I'll soon know if it's time to nudge things a little forward again <img alt="winky.gif" height="15" src="http://files.mothering.com/images/smilies/winky.gif" width="15">
 
The parents are actually blessed with an enormous degree of support, prayer, companionship, etc from fam and church. It's been so heartwarming to witness--and be a small part of. Also, the support from people on this thread, and around the virtual world otherwise, has been simply fantastic to receive. So many near and far have helped to make this miracle, I'm very grateful <img alt="love.gif" height="16" src="http://files.mothering.com/images/smilies/love.gif" width="23">

MsBlack · Dec 18, 2010

This baby is GOING HOME! Very soon---in a couple more days once staff is convinced the parents are fully comfortable with using the NG tube for part of baby's feeding. This little girl is doing amazingly well--so well that the docs agree with me (not that I EVER mentioned/discussed this w/them, LOL) that she does not need the phenobarbitol anymore. And she is just one month old--docs told the family that this will be the first time that a baby in their care with HIE and such low initial expectations of survival has been cleared to quit the phenobarb before 3mos. The family has not challenged the bottle and ng tube feeding yet, tho mom is still pumping and baby gets only BM. They are fortunate to know a couple families who have been through similar situations and encouraged them to just wait on BF til getting home...and one fam who also went home w/ng tube said they were able to establish BF and eliminate ng within a week of homecoming. <img alt="joy.gif" height="39" src="http://files.mothering.com/images/smilies/joy.gif" width="42">

sncmom · Dec 19, 2010

Great news that she's going home. We came home with an NG tube also, and had it for about 3 weeks at home. DD2 wasn't ever able to breastfeed, but got EBM through a bottle for 13 months or so. There is a wonderful support group on yahoo for parents of HIE kids, most of whom were full term - abruptions, cord prolapses, knotted cords (like mine), uterine ruptures, etc, etc, etc... Actually very few preemies. If interested, tell them to search for HIESC. Some of the most knowledgeable and compassionate parents/people I've ever come across.

MsBlack · Dec 19, 2010

s+cmom--
 
thanks for the encouragement, I'll pass it along. As for the yahoogroup, that sounds like a great resource, but I'm a little confused: is HIESC the name of the yahoogroup, or is that something else?

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