Wednesday, April 22, 2009
1:30PM Update - Wed.
Holding my baby girl!
Today the sun is shining and I have adjusted my attitude to the new, yucky room. Kate is adjusting, too, although has been quite scared at the new room and all the new people. She still hasn't pooped and is suffering with cramping. I have repeatedly asked for an enema and was told that they rarely do that here. *sigh* It's so hard to watch her suffer for three days while they give her Miralax--with nothing happening. They gave her a suppository yesterday, and another one a few minutes ago. I hope it produces some results.
I was so excited to be able to get her to eat a few bites of lunch but about an hour later, it all came back up. Holding her while she vomited was both a privilege and torture. She was sooo pitiful. My heart aches for her.
She vacillates between wanting my touch and looking at me with eyes full of reproach. I think we are about 50/50 with that, compared to yesterday when I got waaaay more reproach. So that is progress! :) I was able to hold her today, which was wonderful. She didn't seem too uncomfortable, thankfully.
When I was feeding her lunch, Jeff was here, and I started being silly, trying to get her to eat. And then it happened... she smiled!! It was so incredibly precious. Jeff grabbed the camera and got a few shots, which I knew you would love to see. Most of the time, her eyes are dull and cloudy with pain, but for a few brief moments, they were shining. And God allowed it to happen when Jeff was there and had the presence of mind to grab the camera. I really felt like God knew how discouraged I was about her progress, and how hard is has been the past few days to see her eyes so glazed over. He gave me a glimpse of my sweet girl, which keeps me mindful that better days are ahead.
Her smile was like a burst of sunshine on a rainy day!
Her chest tube fluid is about the same. Unfortunately, she developed a large air pocket again, so they had to put her tube on suction mode. The doctor explained to me that this helps to get the fluid out, but it tends to irritate the lungs, which in turn causes more fluid to be created. So it's a vicious cycle. They will try to turn off the suction later today, so I am praying that it can stay off.
I have tried to pin them down about how long her stay will be, but have been told by everyone that fontan kids drain anywhere from 2 weeks to 3 months. Ya'll know what I'll be praying for!
Jeff had to go to Chicago today and will be coming home tomorrow night. Please pray for his mom and sister while they hold down the fort at home. Next week he has to go to Boston from Mon-Thur., so that will be a challenging week.
Since we have been moved to the regular floor, Kate no longer has a nurse hovering over her bed every minute. She is also awake a lot more. Jeff came up for awhile today on his way out of town, so that I could get some lunch. I don't want to leave her alone because she is so scared. I do leave at night, though, because there is no way I could get any sleep in this room. It kills me to leave her but I know I need to rest or I will get sick and be completely useless.