I can still vividly remember waiting in the ultrasound room for the doctor for what felt like an hour. We were only twelve weeks along, but the wait made my husband and I more than a little nervous. When the doctor came in, she told us that our baby had gastroschisis and that we could terminate the pregnancy up to 20 weeks. The fact that she said that made me feel that situation was very grave. Within 15 minutes we met with a geneticist who explained in greater detail what gastroschisis. The only question I can remember asking was "how do you spell gastroschisis?" It wasn't until we got home and had time to do research that we really began to process what we had learned. I came up with a list of questions, something I ended up doing for each doctor visit.

I remember feeling disappointed at the lack of information in 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 yet 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, but 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. We also feel 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 who gave us the strength to refuse a surgery for our daughter, the whole experience could have been much worse.

Emma is almost 8 months old now. She is all smiles and laughter.

Click on the images to enlarge.

Her Belly:


Her Sister:


Her Nap Time:

I intended to have entered our last blog entry. However, many have asked for an update on Emma that there is no better place to give it than here. Emma is gaining a very healthy ounce per day. Her belly button is now dime sized and still scabbed over. She has an appointment to have the last of her stitches removed on October 15th. Her hair is slowly growing back from the incompetent nurse.



She is a normal baby in as much as you imagine. She sleeps, eats, and poops with the best of them. She even had her first bath.



I hope to load some more photos in the upcoming days.

We are home. Emma's recovery has been nothing short of remarkable. She has done in 5 days what unfortunately takes most gastroschisis babies months or more.

On Tuesday, Ashley and I took a stand by refusing to consent to Emma's 3rd and 4th potential surgeries. We compromised by allowing a surgery for a temporary catheter. The advantage being only one surgery to put the catheter in instead of one to place it and another to remove it. The surgeon warned us of all the complications that may arise any time a baby is intubated. We were terrified. Ten minutes before the surgeons were to arrive to take Emma away she had a bowel movement. I yelled at the nurse's like Paul Revere announcing that the British were coming. They passed along the news to the OR and the surgery was delayed for another day. Hours later, Emma pooped again and again. The next morning she started on 15ml of pedalyte which they expected she would vomit. She didn't and surgery was delayed for another day. On Wednesday they ordered us to increase her volume of pedalyte to 30-45ml which they expected she would vomit. She didn't. Thursday she started 30ml of breast milk without any complications. Friday was 45ml of breast milk - no complications. A healthy color returned to her face and belly. Saturday Dr. Rice and his team came to visit. The look on his face was of absolute astonishment. How was it possible that one of the worst cases he said that he had ever seen was now towards the end of the fastest recovery he had ever seen? He gave the word, "let's send you home".

I do not know and can not pretend to understand how fortune is divided among us all. Still, without support from each other and this community we would never have been in a position to be so fortunate. Many people prayed for Emma and many others offered words of encouragement. We are grateful to all of you who have been there every step of the way.

Now that Ashley and I provide most of the care there is little time to write. I am between shifts at the hospital and Ava is eating lunch, so I have a few rare moments. Emma was due for surgery on Tuesday, but she managed a miraculous poop only 15 minutes before she was to be taken away. That stopped the surgery. Now they've removed the tube from her stomach so her bowel can try and process anything in her stomach. We've started pedalyte feedings every 3 hours with the hope that she may have some breast milk tonight. She's really hanging tough! She's had regular poops, a whopping 3 of them last night with me, and is eating well. Dr. Rice says he is very pleased and that she is well ahead of the curve right now.

I realize this is a poor summary of the last 3 days, but I hope to do a larger entry tonight or tomorrow morning. Ava is emptying all of the socks and underwear onto the floor. Gotta go!