*there's a tough kid

Will has had a busy couple of days. He was taken off the ventilator yesterday at noon and we had some great visits. He's much easier to enjoy without that breathing tube in the way. He held my fingertip for half an hour while he took a nap. I'm sorry to say that by 9 p.m. he had the breathing tube back in again. We are told that there are a few possible reasons why its so hard for him to breathe on his own right now. They are doing some tests and we'll probably know something by tomorrow. We hope it isn't something serious and can be easily fixed.

As always, there are some positive things going on too. The ventilator is set to the mode where he does all the work and it only helps when he needs help. His weight gain is not quite what they expect but he's still gaining. 2 lbs 12 oz now! Also, he is wrapped up in a blanket today burrito-style and looks very comfortable. The doctors hope that having the breathing tube to help him for about another week will give him time to grow and help his brain mature. After all these things happening to his tiny body, we can't help but think Will is going to be tough by the time this is over.

We hope to get his room repainted this weekend. Right now it still doesn't look like we are ready for him to come home!

RECENT FIRSTS

I saw Will's first act of fiestyness with his nasal cannula yesterday. There are pictures of him with it in previous posts (see the first few pictures on Nov. 13th). Yesterday he didn't like having that in his nose at all. Usually he has these aimless, random arm and hand motions. But he would suddenly grab that little tube and pull it down quickly with the clear intention of getting it out of his nose. I didn't know he could be goal oriented so soon. :)