Birth Defect Called Gastroschisis... Anyone dealing with this..

Andrea - posted on 01/22/2014 ( no moms have responded yet )




Have any moms found out or had a baby with Gastroschisis???? I would really like to talk with moms who have had or will be having a Gastroschisis baby... I am looking to help a families dealing with it or talk to families who have dealt with it..

Gastroschisis- is a birth defect where the belly does not close, so the intestines and other organs come out of a hole next to the umbilical cord..

My daughter was born 4 almost 5 years ago with Gastroschisis at 36 weeks 3lbs 8oz 16 1/4 in long with a 6 week stay in the nicu. They took her in for surgery at 8 days old they were able to get every thing back in but had to let it heal on it's own.. She hasn't had any major issues since coming home Mother's day weekend.. She has some potty issues, can't have chocolate makes her sick and can only handle a little bit of regular milk at a time. She has just started really taking a notice that her belly is a different then her friends and family. But I always reassure her that her belly is normal and that our bellies are the funny ones..
My Daughter Jaya was born at 36 weeks she was 3lbs 8oz and 16in. With a birth defect called Gastroschisis.. ( her large, small intestines, bladder, stomach, ovaries, and gallbladder were all out side her belly) she spent 7 week in the NICU, wasn't aloud to feed for almost a month, ( I pumped) Had a silo put on her inside to protect them from harm.. Had surgery when she was 7 days to put it all back in but there wasn't enough of her to cover everything so we could see inside our little girls belly for 2 1/2 months.. Got to hold her on a pillow when she was 8 days old.. was on a vent for 11 days.. When she came home we were up every 1hr to 2 hrs. for feedings the had med every 3, 6 and 12 hours.. Had to change her dressing ever 12 hours to start and then every 24 hours then every other day and had to do it in a sterile way.. Plus i had a 19 month out little boy with me at all time.. i was able to stay at the hospital with my mom there to help me as much as she could.. So i was just curios if any other moms babies had any other problems...

I know when I found out all I could do was cry then when we went for CVS ( placenta scrapping ) and they want us to end the perg. I looked them dead in the eye and told them over my dead body.. She had a cystic on the back of her neck that we checked for Downs, turners and others.. They all came back normal.. Then we met with her Surgery team and as they talked and told me all that could happen or go wrong... I sat and cried some more but put on a brave face and just took it day by day.. I am just so thankful that she is here and doing as well as she is..

We found out at 12 weeks at Covent hospital. I cried for the next 4 days got on the internet and started the search.. {bad bad idea} I got to Iowa city At 13 weeks the confirmed it was Gastroschisis along with a pocket of fluid on the back of her neck as well they then stuck a 12 in needle in to test her for downs and a few other things. Then they went on to tell me to just have an abortion. Not an Option ever... Met with the surgery team, nicu staff was kind of a blur for the next 2 weeks waiting for test to come back. They called and said we have the result I felt my heart sink, then she said good new all is normal besides the gastro.. she ask if we wanted to know sex I said not really hubby said have to know.. she yell XX a girl it was to be...

The next few months sucked so bad... I felt I had let her down in so many ways.. only for her to prove me wrong every day... At 32 week I ended up in the hospital pre term labor.. they gave me steroid shot to help her lung just in case.. only for me to go home and 24 hours later go back with Chicken Pox.. yes 22 years old 32 weeks Prego with chicken pox for the first time... {sucked}

4 weeks later and 36 weeks
March 29th 2009 I was admitted to the hospital knowing I would be going home with out having a baby this time.. they did and ultra sound and found my AF was at 3 cm... Jaya should have been dead as they put it so nicely.. On march 30th 2009 at 6:03 pm Jaya Lynn was born at 3 lb 16in with a little cry they said wouldn't happen and she cried.. they took away to a warmer where they placed her in a bag to cove every thing and put the breathing tube in.. I seen her sweet little face and all I asked is when can I be with her..

She was a 100% natural birth.... that is what they preferred for her
NICU STAY Jaya Story...
Jaya was born with everything from the diaphragm down outside...
Walked in to them putting a silo and pic line in.. first 2 minor surgeries... They would come in and tie off the silo a little each day.. Her belly was so red and swollen and looked so pain full.. She never let it bother her she was always pulling tubes out... the nurses use to call her the fighting peanut..

After 9 days it was time for her BIG surgery.. I was scared I cried while she was in the whole 30 mins.. Due to her small size they had to leave it open and let it close on its own, so she now has what we call her belly button she loves it... Got our first cuddle that day April 8

on day 11 she was off the vent and breathing on her own... when was on vent only used like 5%...

We had poop the first night she was born.. { yes poop is a big and exciting thing } means everything works.. She had poop shortly after surgery too.. She did have set backs she had a blood transfusion a few infections but nothing major... she started breast milk at 3 weeks old.. moved her to bay 2 nicu from bay one.. She had no problems other then acid reflux which most all gastro babies have.. 3 weeks later they told me your taking her home... It just happen to fall on mother's day weekend May 8th 2009 was her first day home... She spent 6 weeks in the nicu.

Over the last few years we've had some up and down.. biggest down is she will forget to poop and gets backed up.. Otherwise she is a wild happy little 4 year old... She is not afraid to talk about her belly and loves to show just how hard she had to fight for life..
I have been showing and talking with her since 6 months to a year old about it and she understand more then what people think.. We just had her 4 year pre school check up in Iowa city on the 27th... They looked at her and told her to be normal.. she really wont ever have fat on her belly..

She is the middle child and the only one with Gastro. so she is a blessing to us and some one trusted us a lot to give us such a wonderful gift..

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