I remember feeling disappointed at the lack of information on the web about this condition. I was fortunate enough to find a UK website, gastroscisis.co.uk that offered wonderful information and insight. It was a huge help and it was through this website that we met Kandi, a mother of a little boy born with gastroschisis. Kandi was amazing. She helped us to prepare for the challenge of having a baby in the NICU and warned us about some of the difficulty we might have with nurses and doctors. This was something we hadn't expected. She explained that her son's doctors wanted to perform an additional surgery which she declined. At the time I thought there was no way I could do that.We were being seen at Duke's Maternal Fetal Medicine and, therefore, were seeing several different doctors, and surprisingly, getting several different opinions. One told us our baby would have a belly button, another said she wouldn't. One said that I should be as active I would in a normal pregnancy while another advised against much physical activity because it could cause the baby to be even smaller than she already was (11th percentile.) This went on and on, and though we couldn't know it at the time, it set the stage for things to come because it demonstrated that doctors are not infallible. We had frequent appointments, ultrasounds, and NST's (non stress tests). It was difficult and stressful. We were encouraged by the information we learned from our ultrasounds, but the sonographers were quick to remind us that sometimes the ultrasounds can be misleading and the surgeons may find that the bowel is much better or worse than it appeared in ultrasounds.
We were induced at 37 weeks 1 day. Our daughter, Emma, was born on August 19, 2008. She weighed 6lbs. 1oz. which was larger than they anticipated. I guess the extra cheese, nuts, and added pounds didn't hurt after all. She went into surgery within a few hours because her bowel looked much worse than they expected. The doctor warned us that we would have to be patient because she was likely to have a long stay in the hospital.
We quickly ran into problems with some NICU nurses who decided that though our daughter's intestines were still in a silo above her, she should be weaned off her morphine. She cried for hours in agony until her morphine was restarted. We were furious! Other nurses surfed the internet and appeared to do the bare minimum. There were wonderful nurses, but you never knew which your baby might end up with, so we took turns staying by our daughter's side around the clock. We held her hand, talked to her, sang to her, and made sure that the nurses were tending to our daughter's needs. They didn't appreciate our near constant presence, but that wasn't important.
It was 8 days before we could hold her and at 10 days old she had her closure. She was finally all stitched up and we began waiting for poop and for her feeds to begin. The NP's kept saying that she would start on this day or that, but the surgeon wanted to wait. After 13 days she was discharged from the NICU out to the floor to make room for another baby. Her PICC line busted the same day and could not be reestablished, so they pushed us to consent to a Broviac line. In the meantime, they shaved both sides of her head and put two IV's in place.
We refused to let them do the Broviac line. We were confident that she was improving and was ready to try feeds like the NP's had said. This forced her surgeon to begin feeds sooner than he wanted. Emma was eager to feed and had begun pooping as soon as her replogle tube was out. She started on Pedialyte and was soon moved to breastmilk. Her dosages were steadily increased. They had warned us that if she was throwing up or even spitting up that they would stop feeds and we would need to allow them to put a Broviac in so that she could be given TPN (IV substitute for food that is rough on the liver.) Of course she threw up, but we were providing all of her care in the hospital and because she was still pooping and gaining weight, we decided not to tell them.
Emma was released after 19 days in the hospital and besides a skin infection caused by stitches that were not dissolvable as the doctors said they were, she has been completely normal. She was gassy for a couple of months, but we kept her on Mylicon and that seemed to help.
We are grateful that Emma did so well and we feel so fortunate to have had the advice of other parents who had been in the same situation. They were a tremendous support. Without their help, especially Kandi's, who gave us the strength to refuse a surgery for our daughter, the whole experience could have been much worse.
