| In August of 1999 my son, Bradley, was born. After an uneventful pregnancy, everything was expected to be fine. But, Bradley liked to sleep, and wasn't at all interested in eating. At first, the doctors and nurses were not concerned. After all, many babies are very tired after birth. Late that evening, when Bradley still wasn't eating, the nurse that was on duty said that we had to get some kind of nutrients in his little belly, and forced him to drink a bottle of formula. Even though, I really wanted to nurse this baby, like I had my first son, I knew that she was right. She assured me that I would be able to nurse this baby also. Two hours after the feeding, Bradley vomited it all back up. I immediately called in the nurse because I was starting to get worried. When the nurse came into the room, she sat with Bradley, and checked him over briefly. She noticed that his stomach was looking a little distended, and thought the he should be examined. The nurse told me to try and get some rest, and that she would take the baby to the nursery, and they could keep an eye on him for a while. I had no idea what was about to happen. In the middle of the night, it must have been about 2 am, I was awoke by the neonatologist from the hospital. He quickly explained to me that they were running tests on Bradley, and that he may in fact need to have an operation. Still very groggy, I could hardly make any sense of this. "What kind of operation?", I asked. "We think that he may have a rare intestinal disorder, and that is why he is vomiting, and still has not passed any stool", replied the doctor. I was awoke again about 6 am by yet another doctor telling me that the x-rays that had been performed were showing that Bradley was likely to have Hirschsprung's Disease. I called Bradley's father (Thom) who was at home thinking that we would be coming home today, and said that he needed to come to the hospital right away. I told him something was wrong with our new son. And then I called my mother and explained to her the little that I knew. I made my way to the nursery, and what I saw when I entered there, is something I will never forget. There lay my new son, with nothing on and a tube running down his throat. He looked so helpless. It broke my heart. We talked with the doctor, and found out more about what Hirschsprung's Disease was all about. They asked us to sign some paper's to have the baby transferred to another hospital that had an intensive care nursery, and a GI clinic. A couple of hours later the ambulance arrived to take Bradley to Sacramento. I wasn't even allowed to ride with him. There were just too many people, and too much equipment, and no room for Mom. We arrived in Sacramento a little over an hour later, and went straight to the NICU. Bradley was already there, and was being "prepped". I saw IV tubes, and a tube in his nose. The nurses were sticking him with needles, and the poor thing wasn't even crying. He must have just too weak, and sick. We were told by the doctor on duty, that we would be meeting with the pediatric surgeon, Dr. DuBois. Everything was just so overwhelming. I had just given birth to a baby on Wednesday, and on Thursday I should be at home enjoying my new son. But, instead, I was at the hospital waiting to hear from the surgeon. Later that evening Dr, DuBois finally arrived, and took one look at the x-rays and decided that he definitely thought that the problem was Hirschsprung's Disease. He said that he didn't feel that Bradley's surgery would be able to wait until Monday (the hospital we were at doesn't have a pediatric anastigiologist on the weekends or evenings), so we would have to be transferred again to another hospital. The next morning all the transfer arrangements were made, and we found ourselves on the move again. When we arrived at the new hospital, we were told that as soon as the surgeon was out of surgery, he wanted to talk with us. My mom and dad both finally went home about 11:30pm, thinking that there wouldn't be any surgery happening that night, being that it was so late. About 12:30am the nurse came to find us, and told us that the surgeon wanted to speak to us right away. When we came around the corner, he explained to us that Bradley was being prepped for surgery, and he would be going in about 10 minutes. We were asked to sign the consent forms. 3:30 am Bradley was out of surgery, and we spoke with Dr. DuBois about what he found. He said that an infection had already started to set in, and that it definitely was HD. He also told us that he gave Bradley a colostomy, and that he would have it for about a year. Just until he grew a little bigger. Then he could be reattached. Over the next 2 weeks I spent a lot of time in the NICU. I think that the nurses wondered when I would ever go home. I was trained in changing and cleaning colostomy bags. The nurses all commented on how well I was doing under pressure. It is amazing what you can do when you have no choice. Bradley spent a total of 14 days in the hospital after he was born. His newborn pictures from the hospital were of a 2 week old baby, but we were finally taking home our son. The next ten months after his surgery really weren't that hard. Not like those first few weeks in the hospital. The bags didn't bother me, and they didn't seem to hold back Bradley either. He did everything ahead of schedule. Rolling over, crawling, walking. Those bags didn't bother him at all. I got to a point that I could have changed the colostomy bags in my sleep. And I had to a couple of times. The time finally arrived that Bradley was going to have his second surgery, and be reconnected. Hurray!!!! He was almost 10 months old. I was very excited because this was just a little sooner than we were originally told it would be. For Bradley's second surgery, he stayed in the hospital for 8 days. The procedure performed was called a Swenson Pullthrough . It was a hard surgery for him. I felt so sorry for Brad. But children are amazing on how they handle things. Finally, five days after the surgery Bradley was allowed to start nursing again. If he was able to keep down that milk, then in 24 hours we would be on our way home. After we got home again, we were able to start slowly introducing food back into his diet. We have follow up appointments with Dr. DuBois, just to make sure that everything is still looking good. I imagine that we will continue seeing him for the next couple of years. But, Bradley is doing GREAT! |
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