This was a rough weekend for us. Her labs have been mixed, with some things getting better and others getting worse. Her CO2 was building up and causing her blood to become too acidic, and then the O2 on her CPAP was getting maxed out, so they ended up having to intubate her and put her on a ventilator. (Which means that instead of giving her air with lots of oxygen and slight pressure to help her breathe, now a machine does the pushing and pulling of breathing for her) But it actually looks better in pictures, just one smaller tube instead of the big tubes she had before. This morning her CO2 has dropped back down to good levels. The two other things that cause us the greatest upset are that her liver numbers are not steadily getting better, and she doesn't have nearly enough white blood cells.
We want her to start having mother's milk again, but with the chemo treatment it seemed that her intestine's smooth muscles stopped working, and so nothing was moving through. (Not uncommon) That seems better now, but she has bloody stools, and she won't be getting fed until those clear up.
To end on a positive note, her skin continues to clear up nicely. The pain medications she had to go on during chemo has been cut in half, and she still seems very comfortable. And she seems to be able to focus on more with her eyes now, which she opens more often.
We are also going to start a little physical therapy workout when we are doing diaper changes aka. "the new pants dance" since all the swaddling has kept her from squirming so much so her joints have not been getting their work out and may get stiff. Here she is with her fancy 1 month party hat and multi color booties (they go with everything) and she is holding her gauze rolls to stretch out her fingers.
Happy one month, Marion!
ReplyDeleteWhat a lousy weekend! One of the frustrating things about bodies is how everything is connected and when one thing is wrong, it's so hard to get everything to coordinate with trying to fix that other thing. (The acidity issue reminds me when Steve's blood was a bit too acidic (I think that was it - it's so hard to keep track of it all), so they advised him to try the equivalent of baking soda... which then completely screwed with his potassium levels and made his heart feel most unpleasant.)
But less pain is great, as is looking around and seeing the world. There's nothing quite like seeing the world through a newborn's eyes; even the most boring things can be FASCINATING.
Yay! Birthday! Good thing she doesn't know about cupcakes yet, it would stink to know what you're missing!
ReplyDeleteWhat a precious hat and booties! I bet Marion is the most stylish baby in the NICU.
ReplyDeletePsalm 139: 13-14
For you created my inmost being; you knit me together in my mother's womb. I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well.
Since I am a day late -- A very merry unBirthday to you Baby Marion!
ReplyDeleteThat hat is TOO CUTE