Gastroschisis

BrittanyMachelleHayes

Has anyone ever experienced this? I see a regular OB once a week and my high risk once a week. I am a first time mom and this is nerve wrecking. Trying to stay strong and not stress myself out for the baby.. My fluids are low, not extremely bad but enough to be watched. Any advice or tips??

caden1206

My friends baby had this and is perfectly fine. I think that it depends on what parts of the bowel and how much. My NICU doesn't see this too much, so my personal experience is limited. Good luck and prayerd everything is fine for you and LO.

BlinkyT

Hello! I work in a high-risk NICU so we do see gastroschisis babies often. Overall, I have seen good outcomes. However, realistically, I would prepare yourself for a few ups and downs.  I don't know how much your doctor has explained, but when your baby is born, he or she will be intubated. Many parents have a difficult time seeing their baby on a ventilator. Depending on how much bowel is out, they may put a plastic silo around the exposed bowel, and it hangs from the top of the isolette your baby is in. Often, gravity will help much of the bowel go back into the abdomen.  The bowel that is out will be monitored closely for any changes in color or size. Eventually, your baby will have surgery to put the remaining bowel into the abdomen. 

Do your best to have breastmilk for your baby. With gastrointestinal issues, breastmilk truly is the BEST and once your baby starts eating, he or she will tolerate breastmilk much better than formula. That being said, I would not anticipate your baby eating for awhile - anywhere from days to weeks, depending on the severity of the gastroschisis. But save that breastmilk!  Your baby will receive parenteral nutrition through an IV, with something our NICU calls TPN and lipids. The lipids help baby gain weight, and the TPN provides essential amino acids and vitamins.

 I know some of what I described sounds scary.  I have seen these babies do very well but it can be tough on parents. Good luck! Thoughts and prayers are with you!

BrittanyMachelleHayes

I have met with the surgeon and he explained alot of different things to me. Things that are very rare even but he said that he prepares for the worst and hopes for the best. He informed me that it could take up to 21 days for her bowels to start working for me to be able to feed her myself. He also encouraged me to breastfeed so that is the goal. I was not aware of the ventilator, or at least don't remember the doctor mentioning it but I was trying my best to hold it together to be able to listen. I will be 33 weeks pregnant on Monday..&& My last high risk appt was this past Wed and they told me she weighed 4lbs 9 oz already and that was growing very well. He said her stomach was growing atypically for babies with this problem and that him and the other doctors were bragging about her size, so I am hoping that it is a good thing. I do have low fluids and they are watching them I just hope and pray they don't get low enough for them to have to take her any earlier than what is already planned.  I really appreciate you messaging me back, it helps me so much to be able to hear things from other people and not just what my doctors are saying.. Thank You!