In the PICU now

Well, after 48 looong hours, Harlie was finally moved out of the ER and up to the PICU. They said that’s a record stay in the ER. I am just so thankful for the quiet room and hope that I can finally get some sleep!

Harlie had 2 more cyanotic episodes (turned blue) today. One this morning (while on the vent) and one this afternoon during her transfer to PICU. It is so painful to watch your baby struggle to breathe. Clearly she is not getting better (which is very discouraging) but they are doing everything they can to figure out what’s going on. Unfortunately, it is not as simple as having pneumonia and treating it. It is my understanding that they simply aren’t sure what the infection is. Her new and unusual circulation and cardiac condition make treatments very complicated. What might be good for the lungs adversely affects the heart, etc.

She has many good doctors from several specialties working to figure this out. So, it looks like we’re going to be here a while. I am thankful that we are here in Richmond instead of DC, that’s for sure. Tonight, Harlie looks more comfortable than she has all week. I think they finally found vent settings that she tolerates, so that’s good. We are staying positive and not panicking, but we are certainly worried and scared (I mean, who wouldn’t be?). It’s the stuff like this that can take its toll on little babies recovering from heart surgery.

So, please continue to send good thoughts and prayers our way.
Thank you,
Christy