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Gastroschisis / Umbilical Hernia / Reflux

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My son was born with gastroschisis. After a month in the NICU he came home and had a small formed umbilical hernia and found out he has reflux as well. The hospital never told us about the hernia nor the reflux we had to search for ourselves on the internet then bring it up to the doctors just for them to say they already knew..but they never told us. Besides that...my son is not wanting to eat anymore and just wants to sleep. Hes belly button is patruding out a decent amount...about the size of a gumball.. now it becomes extremely solid when he stretches or cries and does not flatten when hes laying down and the swelling is only increasing...the doctors saw this and sent him home saying just to come back if it gets worse. His tempature was below normal at 97.1 and his normal is around 97.5 this is with a rectal temp.

Its getting bigger and he doesn't want to eat anymore and sleeps way more than he ever does...he doesn't cry hardly ever or fuss. Please give me some advice or a second opinion on what to do. We have medicaid and Im afraid since we have medicaid there simply writing us off and not really trying. He left the NICU before he could even regulate his own body temp and Im afraid they only let him go because the hospital was getting over crowded and were having to have babies share room and just to free up space sent him home.
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replied July 3rd, 2009
I would recommend you read EVERYTHING you can about the condition. There is a support group site based in the UK, with English speaking parents from all over. This defect is happening more and more often.

http://www.gastroschisis.co.uk/

You have to be your child's advocate and be persistent with questions and solutions.

Did you work with a Social Worker at the hospital before discharge? If not, start there - and/or make contact again. There are programs available to help you with feeding issues. These kids often have reflux, spitting up may continue for some time. Formula is often adjusted multiple times.

Sometimes you must wake them up repeatedly because they do get tired.

Is he on a feeding tube? Often parents are trained to place and maintain the feeding tube/pump so the baby does get adequate intake, especially when they don't want to suck or can't stay awake.

Keeping food in so that weight gain happens (and dehydration doesn't) is EXTREMELY important. You may find it best to feed small amounts very frequently.

Feeding (nursing) can be hard work for little ones and sometimes they tire quickly and may need to rest a bit. You may feel like you are feeding 24/7...because you are.

Is he being treated/seen by a nearby pediatric gastroentreologist? Sometimes the pediatrician and the pediatric gastroentreologist are NOT on the same page. Go with the pediatric gastro. assuming he/she sees more of these kids. It's one of the reasons YOU need to learn all you can.

Hernias with these kids aren't uncommon, but you need to know specifically what to watch for as there can be severe complications with these kids.

There is a program called Babies Born Healthy available in at least some states. And another program, but I don't recall the name. Contact your Public Health Department and/or Medicaid program. (Be prepared to get the run around - you need to talk with someone in those agencies who typically handle babies with low birth weight and/or birth defects. Check to see if the March of Dimes has programs in your area. Visiting nurses are available to come to your home in some areas.

Some of these kids need physical and occupational therapy to get caught up...don't wait until they are behind, they need to make developmental milestones just like other babies. This is one of the areas where the hospital social worker can be a real asset from the beginning.

Good luck.
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replied October 5th, 2010
Gastroschisis
My son has the same condition and as far as feeding did the same thing (lost appetite). I put him on Similac neosure and gave him gas drops, along with vitamin drops in his formula. This turned him into a totally different boy and he had an appetite like you wouldn't believe. After wards I kept him propped up for 20 minutes after eating and also wrapped him in two receiving blankets and he did really well!
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