*tetralogy of fallot

Baby Will was moved to a different NICU yesterday. Not because he is sicker, but because he needs to be closer to the cardiologists. He has a heart defect called Tetralogy of Fallot (fuh-LOE). We're still learning what it is, but we know that it means he will have surgery when he's around 4-6 months old and he will see a cardiologist for the rest of his life. It can be related to other problems but we won't be concerned about that until needed.

The other things we have learned so far are positive. Children tend to do well after the surgery. For example, one of the neonatology interns at the NICU was born with the same condition. Although Will has other problems due to being born prematurely, this would've been there anyway. So far he doesn't need any special treatment for it and we are trying to patiently wait as the doctors get to know him better. Over time they can tell us more about what to expect.

The most pressing thing right now is his inability to breathe on his own. That still helps determine when he can come home, but more importantly....when we can hold him! There is some debate about whether the heart problem is related to his trouble breathing. As you can see, every day brings some new information so we will share when we know more.

The good news is that we like being at the new NICU. He has a private room that is more convenient for us in several ways. There is more room so we aren't in any one's way and we always have a comfortable place to sit. We also don't have to leave when the nurses change shifts or when the doctors do rounds on other babies. We'll take some pictures tonight to show you.

In the meantime, if you want to know more about his heart you can do so here. We have been given some good information on paper but this description is pretty good also.

Mr. Woobie is back....sprawled on his back with his head next to Will's head.

Here is Will's bedding that came in the mail today: