A huge thanks to everyone who has prayed for Harlie. Please, continue to do so! She has shown some gradual signs of improvement, including some signs that her organs are able to function! She is still sedated and on a ventilator; she is able to breath on her own, but the doctors want her body to put all of its energy into the healing process. The sedation has been lowered a little, however, and my mother-in-law reported that she had her eyes open for about 45 minutes early this morning. This is the first time she has been “awake” since she got so sick!
I think, right now, the biggest concern is that her kidneys show some improvement. If they don’t, she may have to be moved to another hospital for dialysis. The closest hospital that does dialysis for children is 2.5 hours from here, which is a good 4 hours from Harlie’s home. Please pray that the kidneys start to do their job!
A lot of family came down to see Harlie over the weekend. Although we hate for it to take these kind of circumstances, it was nice to see everyone.
Egan meeting his Momo for the first time!
There is no “back to normal” when you have a loved one that is chronically ill. At least, not for a long time. But life does seem to settle into a sort of a routine of its own. Let’s call this A New Normal.
Ava listening to Gigi’s audiobook about caring for sick children.
I am thankful that, at least for now, Harlie is in a hospital in our city so that we are able to visit and try to share the load, at least a tiny bit. We are still figuring out what our New Normal should be. How often it is appropriate to bring the kids in to see Harlie is hard to determine. The kids have done really great behaving at the hospital so far (and I am not afraid to put a movie on a lap top!) They want to see Harlie and to talk to her. However, Harlie’s in an ICU unit that is not conducive to prolonged visitation (although this has by far been the best ICU I’ve ever seen as far as allowing guests!) So we’re still trying to figure out what the best balance between being supportive and keeping our kids out of everyone’s hair should be.
Izzy’s favorite hospital activity!
When Harlie first got sick, I went into a sort of numb survival mode. That’s my coping mechanism; I handle a situation like it’s not me/my family involved. Over the past couple days, I’ve been able to let that guard down, but the flip-side of that is my body has let itself feel the stress. I was at a breaking point last night. Fortunately, I have an understanding husband who took care of the kids’ nightly routine so that I could go on a run and have some time away from everything. Feeling much better now.
Aunt Heather hanging out with Egan.
So now I’m just kind of rambling, as the words that have been elusive to me this week are finally coming in waves. In “other news,” Melanie finally had her baby! We picked up Jack on the way to church on Sunday so that she could make her way to the hospital. We only had him a few hours before his grandmother got to town, but I confess I barraged Melanie’s husband, Brad, with approximately 47 texts throughout the day until I finally got a picture of Melanie with her sweet bundle. He was born right before kick-off, so Superbowl Baby he is!
Josh with Betty Jo, Harlie’s grandmother.
So that’s it for now, I better close it out so I can prepare for our first night of Mission Friends at our own church! I guess I will have to blog more on that later. I think we may also be spending some time with this sweet girl…