Elanor did have a quiet Saturday. She spent most of it in either Ravi’s or my arms. At one point I had to go back to Ravi’s and my apartment just to deal with a few things, and Ravi stayed with her. He held her the whole 3 hours or so I was gone and continued to read to her from “George’s Marvelous Medicine” by Roald Dahl.
In the evening we had some family time. Elanor was napping in my arms, so Ravi and I put in a dvd and cuddled with her. While sitting in chairs near our daughter’s warmer watching tv on my laptop isn’t quite what I had planned, nor is the presence of so many little wires and tubes, it was still a wonderful and comforting experience.
Elanor continues to work on feeding through a feeding tube. She had some reflux twice yesterday and so we’re moving up VERY slowing from amount to amount. As of right now she is “drinking” 4 cc’s per hour, and the goal would be 19 cc’s per hour. Because we can’t increase her feeds as quickly as the doctor would like, this morning he said they’re going to add calories to her IV drip, which until now was basically saline with some glucose to keep her blood sugar from tanking.
One of the weird side effects of having a baby on a feeding tube is that she doesn’t wake up and cry for food. She does wake up and look around and she’s making lots of normal baby noises. She certainly cries to tell us she’s upset with the world whenever the nurse takes her temperature in her armpit or we change her diaper. But over the night, she doesn’t wake up and cry…and it just continues to strike me as odd, even though I understand that she doesn’t need to wake up and cry because the food is right there.
Around 8/9 last night, Elanor’s blood pressure began to go up. The doctors want it in the 80s over 40’s but she’s been in the 90’s over 60’s. She was given blood pressure medication, but it didn’t seem to do much. The big concern with high blood pressure, especially in Elanor’s case at the moment, is the potential for high blood pressure to aggravate her brain bleed.
Late last night, Ravi and I had gone to the parent lounge for a snack. There we met a mom of another baby here in the PICU. I don’t want to share too much of their story, but suffice it to say that there are much tougher journeys than the one Elanor is currently on, and I found that mom’s strength inspiring. She reminds me that it’s enough that the baby is alive, and that everything else can be worked with or worked around.
We’ve seen certain parents over and over here in the last week (today is day 7, sadly). It’s always hard to know if you should greet them, or try to get a conversation going. Being a PICU parent is often a rollercoaster and while there are times when it would be nice to talk to another parent going through an equally scary experience, there are plenty of times when the last thing you want to do is talk to anyone. There are good days and bad days, and the lesson I’m learning is to not take the good or quiet days for granted, and to look to your partner for strength and support on the bad days and to grit your teeth and force yourself to believe that whatever the bad/scary thing is, it will pass or it will be dealt with. Because regardless of how you actually feel, you HAVE to be positive for and with your child, no matter how little she is.
This morning on rounds, I was told that tomorrow we’ll meet with the team who will help us with her suck reflex (which is starting to come back, but still has a lot of room for improvement), and possibly hemotology for some evaluations (including, possibly some test on us to help figure out if we’re passing on specific genes or disorders that we’re unaware of).
Today Elanor is getting another CT scan (which luckily is a very quick procedure) to monitor the brain bleed. Fingers crossed that it looks the same, which is about the best we could hope for in her case. She’s currently getting it right now, so we should know more by the afternoon.
Basically at this point the major areas of concern for Elanor are the brain bleed, her blood pressure, and her trouble with feeding. The infection fight seems to be progressing, and her organ functions and various levels are trending towards normal. Luckily Elanor is one heck of a fighter.