ISO info/support for family w/newborn in NICU

[MsBlack]

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.

thanks!

[Super~Single~Mama]

Did you x-post in the NICU section of ages and stages?  I'm not a sn mama, but lost of people post in NICU/preemie parenting with lots of info and experience.

[MsBlack]

Thanks.  Just before coming back here, I reviewed the forums list and discovered the NICU/premie board.  I'll cross post my query there. :)

[sncmom]

 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.

[fairejour]

My daughter had long term oxygen deprivation (sats in the low 40's for 6 hours). She was lucky and she does not have severe brain damage. They did an EEG as soon as she was stable and they were pleasantly surprised to find any brain activity! As she has grown up (she is 7 now), we have discovered some things. While she does not have CP or severe brain damage, it is becoming clear that she does have some issues. She has impulse control problems as well as memory issues (it looks a lot like ADD, but we know it isn't). The biggest thing we found is that she has a hearing loss. We don't know it is from the oxygen deprivation, the medication given in the NICU, or the long tern ventilation, it could be any of those things, or a combination. MANY NICU babies end up with a hearing loss, so that is something to keep an eye on.

So, advice, one day at a time. Try to work through the anger, the anger at yourself, at the professionals, at God. And then get enrolled in Early Intervention as soon as possible. They will have the professionals, therapy and guidance you will need as your travel this path. The NICU and the not knowing was the worst part for us.