Monday, October 2, 2006


Well, the family meeting has been cancelled. It was determined that it was too difficult to get all her doctors in one room (there are more than 10 I think). So, we are just going to start to meet with them one on one. Which, personally, I like better. The thought of being in one room with all those doctors was a little intimidating. They will still communicate with each other to determine the priorities of what she needs done and when. But now we can focus on one area at a time.

There was talk of removing the breathing tube (ET tube) today. They have reduced the air coming from the ventilator to practically nothing - so she is breathing on her own - room air. But, just a few mintues ago, it was determined that it was just too risky to remove the tubing at this time. Evidently, it requires a team to get her intibated, and it just isn't worth the risk. (clearly, we agree!)

I'm sure things could change, but it looks like in the next few weeks they are going to put the trach in and a feeding tube in her belly. I know we will learn how to take care of her - but it is a little unsettling to know that we are going to have to feed her through a tube in her stomach instead of, well, the normal way. I think our sense of normal, will not be normal anymore.

I am told that she won't be able to cry - well, make the noise I mean. And I have to admit that makes me sad. A mother should know her baby's cry, and I have no idea what it sounds like. And it makes me terrified, because what if she needs me in the middle of the night???? How will we know? They tell me that they have a way of communicating and letting us know that they need us. I hope they are right.

As far as how she is doing today, she is doing well. They were able to get all the swelling down. Now she looks REALLY skinny. They haven't been able to weigh her because of the ET tube, but clearly she has lost some weight. Just a few hours ago they finally started to feed real food for the first time (my milk). So, hopefully all will go well so she can start to pack on some weight. Well, that's all for now. Talk to you later.

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