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anyone have experience with this?
I know its a long shot...but still hoping
yes, we've delt with this with our son.
What is it that you want to know?
ps - I know I say this a lot, but BabyCenter has a TON of very specific boards that have small groups of moms in JUST our situations. They rock. Check them out, too. But let me know how I can help.
my sister's little girl has it. she is due for delivery by c-section in 2 weeks and we're just kind of looking for information and support. the doctor told her he's seen 3 children with this and one survived and may need to be in the nicu the first 9 months of her life. my sister is really concerned about being able to hold her,dress her,feed her and things like that.
well, our son is not here yet, but yes, it's a serious condition that is loaded with variables and issues and unknowns. That's the hard part for me. I need black and white. We don't get that when our babies are sick.
1st and foremost, I LOVE LOVE LOVE this story called Welcome to Holland. It was written by a mom regarding her special needs child, but I think it applies so well to just about any one of life's "short stick" situations, where you wish for one thing and get another. I hope it gives her some perspective.
For quite a while, it's not really going to BE about dressing her, playing, etc. like "normal babies" bc/ well, she's not going to be normal. Plain as that. Infections, surgeries, how she tolerates it all... well... there's a lot of unknowns in that. I think for them to make a blanket statement of "9 months" seems a little harsh, who knows how this will all go down. Is she dealing with other anomolies in utero, etc. - just too hard to predict.
Have your sister check out the BabyCenter boards specific to her daughter's condition. The NICU can be an overwelming ride, and sometimes the best thing(s) YOU can do to help is to just BE there to listen, just DO things you know she needs (don't ask "what can I do to help?" just do it.) and remind her that this is a marathon, not a race.
And welcome to Holland ;-)
Thank you,I will definitely look into it(:
As far as I know the only other thing they are concerned about is there is fluid around her that they do not know what it is.
Its just hard knowing that there's so many uncertainties, i want to buy her all these new mommy and baby things but we don't know what she can or cant use. I am flying home the day before she is due and will stay for 2 weeks and do whatever i can to help and be there.
Thank you again very much! & GL with your son! when is he due?
Let me start off by saying I am a total lurker and joined today to specifically reply to this.
My oldest daughter was born 10 years ago with an Omphalocele and Diaphragmatic Hernia. I moved when I was 8 months pregnant and had no complications during the pregnancy. Somehow when I had my 20 week ultrasound the technican missed both defects and that was the only ultrasound I had the whole pregnancy. The hospital I had her at was not a NICU hospital and I had her vaginally not knowing anything was wrong.
I had her at 11pm and she was baby bussed up to the nearest NICU hospital 45 minutes away. Her vitals were very good and they did surgery at 1pm the next day. While doing the surgery for the Omphalocele that is when they discovered the Hernia and fixed that as well.
We have always referred to her as our miracle baby because she really is. I don't know how much you have had the chance to look at and it can be scary and overwhelming. We were kinda thrown into this and didn't have the chance to know anything ahead of time and it kinda helped me. My daughter was on pain killers for a day and never showed any signs of needing more after that. She was on a ventilator for 24 hours (which was required), and didn't need it after that. They said she couldn't eat for 7 days, but was doing so well that they let her eat after 4 days. They had me pump milk the whole time because breast milk is easier on the digestive system than formula and I felt it would be better for her too. She ended up not being able to eat as much as a "normal" baby at each feeding, but could eat as much in a day. She came home after 3 weeks in the NICU and has had no complications at all. We are very blessed.
I am currently pregnant with baby number 4 and none of the others have had this happen to them. This pregnancy I do have the Gestational Diabetes, but I don't think that this would effect the Omphalocele at all, but I don't know. The main thing is to try not to worry to much. Until the baby is born they won't know how bad it is.
Hope this helps and if you have questions I can try to answer what I can, but every situation is really different.