Sunday Night July 20, 2008

Leaving Zander was the hardest thing I have ever done. Although he is in good hands, Christie and I had a hard time leaving the hospital knowing that he was not coming home with us. Prior to leaving though, we had a great morning and early afternoon with him.

When the Houston and Jackson came to the hospital to visit today, I went down to meet them at the entrance. For whatever reason, I turned down the wrong hall and ended up in an outside area for hospital employees. As I walk by, Dr. Kelley, Zander's surgeon recognized me and we talked about Zander for about 10 minutes. This was the first time we talked with Dr. Kelley since the surgery as he has had several surgeries in the past 72 hours. In any event, he proceeded to tell me that Zander's esophagus is about 3 inches from being able to connect. His largest concern at this point is that he does not want to stretch the portion of the esophagus coming from the stomach as it would likely pull the stomach up and out of the abdominal cavity. That brings us to the stomach issue. I have yet to comment about Zander's stomach because I wanted to talk with Dr. Kelley first. Now that I have done so, Zander's stomach is only about the size of a dime. A normal baby's stomach is about the size of a half-dollar. This is a significant concern for Dr. Kelley's plan of attack in that he can really only stretch the throat portion of the esophagus at this point.

To counteract the stomach issue, Dr. Kelley is now allowing Zander to have breast milk. The milk is being pumped directly into his stomach every 3 hours. Since the portion of the esophagus that is connected to the stomach has been closed off for now, Dr. Kelley believes that feeding Zander at this point will expand his stomach. Essentially, the stomach will expand over the next few weeks as they incrementally increase the amount of the breast milk he takes in alot like expanding a balloon.

Dr. Kelley did say that Zander was a tough kid and that over the next two weeks additional tension would be applied to the traction sutures attached to his upper esophagus which will in turn continue to stretch the esophagus southward towards the stomach. He did tell me that Zander was going to be in the NICU for "a while", but alot of Zander's time in the NICU is dependent on the expansion of his stomach and getting the tubes closer together. Dr. Kelley said he did not want to connect the espohagus to the stomach until the stomach was expanded. Doing so too early, based upon his expert opinion would only cause Zander to have significant stomach troubles including acid reflux on a large scale. Basically, Zander will be taking baby steps. Hurry up and wait is now the mantra by which we live.

We are now at home. Although we are close (about 15 minutes away), it is not close enough. It is good to have Houston and Jackson with us as we have missed them dearly over the past few days, but we are thankful that they had a great time in Florida. We are praying that Zander has a good night. We spoke with the NICU and they said that he is not rejecting the breast milk that he is receiving through the gastro-tube. Thank God for small miracles. It will be hard to sleep without him close, but we have pictures at our bedside.

We love you all and hope that each of you has a great start to the week. I will post again tomorrow (or maybe later tonight depending on if I can sleep). As always, thanks for the thoughts, prayers and support.

Sweet dreams Zander. Good night all.......

Clancy