Finally!

It was a great day yesterday. We finally got to hold Benjamin, after 2 1/2 long weeks!! We could hardly contain ourselves. We only got a short 1/2 hour to hold him before they closed for shift change but it was a great 1/2 hour. They took out his thoracic line yesterday morning so now his chest is clear of IV lines! He does have an IV in his arm now to maintain access but that's okay...it's better than his chest.

We attempted to feed him and he took about 20 mL, which seems to be his trend these days. He just tires out too fast. It's funny how we really don't realize that eating for babies is like going to the gym for us. And we are asking him to go the gym every 3 hours...after having major heart surgery! Poor little guy...he's trying though and doing well and that's all we care about.

We spoke to Dr. Jones yesterday afternoon as well. She is the geneticist that follows the 22q cases. She informed us that his immune system seems to have normal function. The full panel that they're running is not back yet but initial tests have shown that his immune system responds in the proper way to infection. That's great news! His suck-swallow strength is not too great, which could be why he's having problems feeding, but it could also be that he's just learning and tired too. Only time will tell. Palette problems are common in kids with DiGeorge, and if he does have a problem, it could mean problems with speech later on. But, like I said before, it's all a wait-and-see game. She also consulted with several colleagues about any connection between the feet and DiGeorge and she got no response from anyone. This leads us to believe that it is not associated with 22q and that it was a fluke...what are the chances! But, he should have no trouble walking because he has a nicely formed big toe with great ball function and he has enough on the other side of his foot for balance. He might not even need special shoes! It was a great meeting and we definitely are feeling positive on his prognosis!

In other news, Darin has found a job! Though not his first choice, we all know beggars can't be choosers! He is taking a job with Midas, and starts on Monday. This is a little sooner than we would have liked but a job is a job. We are just happy to have it! We shall let you know how this works out!