More Setbacks

Grace's sleep study did not go well yesterday. Here is a picture of Grace undergoing her sleep study. Now I ask you, how could anyone breath with all this stuff strapped to her, let alone sleep? I mean...C'mon already!

We knew Grace didn't do well when the pulmonologist wanted to see her today instead of next week. Unfortunately she feels that Grace had so much obstructive apnea that she is going to need a tracheostomy. To say that we are devastated by this is such an understatement. There are a lot of things that we don't want for Grace and this is near the top. It means a risky surgery on Friday, and then 1-2 years of the "trach" before she will be allowed to have it closed. It means she will not be able to cry anymore and that we won't hear those baby babbling sounds. Sad. The only upside that I can see is that she will get more oxygen to her developing brain.

Grace has been admitted since the sleep study was so bad that she needs a little more respiratory support than we can give her at home. After you have had your little girl nuzzle into your neck every evening you find it hard to leave her back at the hospital and come back to an empty house strewn with things that remind you of her. In just two short weeks I have become more attached to my little "smidgen" of a girl than I ever thought possible. I never realized it so acutely until today and my heart just breaks to think of all that she will have to endure. Without question this is the single most difficult thing Deb and I have ever had to deal with in our lives.
More tomorrow. Sigh.