Lucia's health within any given day has been so variable from one moment to the next. In a single day, she can go from being her perfectly calm, sweet self with great colour, excellent heart rate, a beautiful cry to a completely hysterical little baby with an unusual cry, very pale/bluish even, with a heart rate that goes through the roof, and a breathing rate that way exceeds normal. It's the kind of roller coaster ride I don't wish upon anyone. These past few days -- and really as I look back -- I would even go as far to say these past few months, have been like this. Needless to say, we are exhausted and much more importantly, so is poor little Lulu. In fact, she doesn't really sleep (this is a horrible thing considering that this is what babies are supposed to do for a good part of their day). The most she will get is 2 hours at a time, and this is a blessing when it happens. Also, she has lost so much weight because of all the work she is doing just to breathe. Her lungs continue to fill up with fluid, and the nurse says she hears alot of wheezing. The weight thing especially (among many other things) really breaks my heart because she was doing so well before this all happened. Anybody that saw her that truly knew what T18 "looks like" woud tell me that Lucia looked GREAT...and I would beam with absolute pride (the good kind).
It is heart wrenching to watch her suffer and so we beg for Christ's mercy to take her suffering away. Please continue to beg Him with us.
On a final note, I know many of you have only seen pictures of Lucia, so I took a video of her yesterday morning when she was being her delightful self so that you, too, can experience the joy of our little sunshine. (p.s. please don't mind my high-pitched, whiny baby voice...it may be annoying, but Lulu likes it ;) )