The Amazing Twin Adventure

We finally had our meeting with Will's doctors, and the news was encouraging. First, the ENT did a bronchial scope and said things look a little better. His airway has grown a little, and the bigger it gets, the less of a problem the floppy spot will be. She said that small area is always going to be a little floppy, but as his airway gets bigger, the floppy part won't close it off. The pulmonologist said that he's doing really well on his trach collar trials- they've increased him to a two hour block every day. He said that our goal is to continue to increase that time off the vent until he only needs to be on the vent at night. Hopefully we'll be able to do this over the next several months. He said that if everything goes really well, we might look at taking him completely off the ventilator next spring after cold/flu/RSV season has passed. After that, we begin working towards getting the trach out. The ENT said that it's extremely rare for a child to have the trach out before they're two, but that Will shows every indication of being on the path to having it out around two years old. That is excellent news!! It's still a ways away, but two years goes by quickly. Our next big milestone is to continue to increase his bottle feeding until he can take all of his nutrition from the bottle. Tomorrow, they're going to allow him to take as much as he can over a 15-20 minute period, and that will set the volume of his feeds for now. Let's hope he does well and takes a lot! More exciting news is that the doctors want to hold off on the gastric feeding tube for now. If he does well on his bottle feeds, he may only need a feeding tube for another month or two and they think that a G tube would be unnecessary. So, fingers and toes crossed! The pulmonologist said that Will can come home after we get all the feeding stuff figured out and we have enough experience with trach care to feel fully comfortable with it. Hopefully just a few more weeks.
Will was a really happy boy today. He was very smiley and didn't get the least bit upset when the ENT did the bronchial scope. We were talking about how far he's come over the last couple of months. I don't always get the full perspective on his progress, but I have to remember that this time two months ago he was intubated, sedated out of his mind. He barely opened his eyes, and when he did, he couldn't focus them. We had to have three people just to get him out of the bed so we could hold him. Now he's alert and happy. I can pick him up by myself. He's just a regular baby, albeit with a few extra tubes! He has really made incredible strides and we are so proud of his progress.
Hays is starting to take a little formula (preemie formula, not the crazy-expensive crap). I'm mixing it with breastmilk to make the transition easy. It's just getting too hard to pump with everything going on, and it will be even harder when Will comes home. But hey, four months of breastmilk is a good start. I think he'll probably gain weight faster on formula, and that will be a good thing. He's still a scrawny little chicken!