Alexander's Story

Britney - Alex's Mom
March 2005

Alexander (Alex) was born a healthy 7lbs. 2 oz. after a healthy, non-complicated pregnancy. In the hospital, everything seemed fine and we went home after the typical two day stay. At about one week old, Alex began vomiting, vomiting, vomiting. At that time, we were seeing a general family doctor who, just from symptoms alone, diagnosed “severe reflux” right from the very beginning. We were very lucky. At two weeks, Alex had an upper GI and was put on Prevacid. The vomiting, however, continued. Alex was never interested in eating and when he did eat a couple of ounces, they would just come right back out immediately. At seven weeks he was labeled failure to thrive and an NG tube was placed to supplement his bottle feedings. He continued to vomit up his NG bolus feeds and the feedings were switched to continuous. At this point we pretty much lost all oral feedings. Being a Speech-Language Pathologist myself, I knew that once the NG tube was put in, all oral feeding would be lost and I was right. I just wasn’t ready for how quickly it would happen.

Alex chugged along with his NG tube for three months. He continued to slowly gain weight but because he still showed no interest in oral feeding, he had a more permanent G-tube put in. While the G-tube didn’t help the vomiting, it did make Alex more comfortable and life a little easier. We were to the point where Alex was pulling out his NG tube at least once a day and reinserting it was an absolute nightmare for him and for us.

Through all of this we continued to search for a reason or diagnosis for the vomiting. So far we had a diagnosis of reflux, laryngomalasia, hypotonia and a small VSD in his heart. Still nothing seemed to describe the severity of the vomiting.

At 10 months the vomiting became so severe that Alex became dehydrated. His GI recommended we take him to the emergency room to have a GJ tube placed. We had that done and were sent home. A day later Alex starting vomiting blood and bile and, again, was dehydrated. Back to the hospital we went. Alex was admitted and one week later a j-tube was placed. After recovery we went home with a new feeding method called, by our surgeon, the “feed and drain system”. We feed him through the j-tube and suction all fluids out of his stomach with the g-tube. In theory, this would leave him nothing in his stomach to vomit. It was a good theory but here we are-- Alex is now 12 months old and he continues to vomit throughout the day and night. Admittedly, the vomiting has reduced from about 15-20 times a day to more like 8-10 times a day. Also, he now only vomits stomach acid so he is gaining a considerable amount of weight with the j-tube. Still, I find this amount of vomiting unacceptable and I continue to search for reasons and solutions.

Through it all Alex has always been a beautiful and happy baby. The vomiting has never really seemed affect his mood. It doesn’t really make him cry or get upset. He just vomits and continues on with his day. He’s amazing! The vomiting has, however, affected his motor development. His reflux is so severe that sitting for him is still nearly impossible. Every time I try to sit him up, his stomach churns and he projectile vomits. It’s as though sitting smashes his stomach and causes him major upset.

Alex is our first baby and as you can imagine, it has been quite the bumpy road for all of us. In and out of hospitals all year long and we are still waiting for some more conclusive answers and solutions. Alex’s first birthday party is this Saturday and I can’t help but think about all we have been through and how different I imagined his first year would be. We have been blessed with a very supportive family and an amazing team of doctors. I really feel the while best treatment route has been taken with Alex, the best is still not good enough. The vomiting has to stop.

Thank you all for listening. I write Alex’s story so that when some frantic mother is searching on the internet to figure out what is wrong with her baby, she will not feel alone. The severity of reflux can truly be unbelievable. We just have to remember that we are not alone and that things will get better—they have to get better.