Gastroschisis

Hi, my name is Jessica and my husband and I learned at 18 weeks pregnant that our baby had gastroschisis. They we’re unable to tell if the baby was a boy or girl due to all of the intestines and bowels in the way. Finally by amnio we found out our little baby was a girl.

They took Brooklyn 6 weeks early due to bowel dilation. She was born 4/27/01 at Baylor Dallas hospital weighing 5lbs 8oz.

She was on a vent for 1 day and spent 1 month in NICU until she could come home. Even though she has been hospitalized 7 times throughout her 6 years on this earth for pneumonia, asthma, rsv x 2 and influenza, she’s a happy, healthy, active beautiful girl.

We are currently having some issues with horrible constipation and her crying of stomach pain. She is on mirilax 1-2 times a day with not much relief. Today she had a CT scan to rule out obstruction or “kink” . She’s already had a scan a couple of years ago that showed malrotated gut and appendix up by the gallbladder but no obstruction.

This time the Dr. is more concerned because the miralax is not helping even when she was on it 3 times a day.

The CT tech came in in the middle of the scan today to call in the radiologist and said her stomach still had her breakfast in it from 7 hrs before and the barium was only through the small intestine, for her to walk around for 45mns to see if we could get it to the large intestine and they would rescan. Well when rescaned still no barium had moved.

We were sent home and now here I am stressing waiting for an answer. Has anyone else been through this with their gastroschisis baby or themselves? I wish I had found this board along time ago now I hope I can have some people to talk to that understand.

Thanks,

Jess