Pretty Good

Hi everyone,

Ella has been doing really well since the surgery. By really well, I mean Ella-really-well haha! She has been pretty stable and was able to get her chest closed today. They have lowered her sedation meds so she's opening her eyes and wiggling her fingers and toes. The doctors are happy overall with her progress.

Ella is still on the pace maker and it's been a bit tough getting a real read on her heart rate. People were trying to figure out if it's the monitor stickers on her chest that aren't picking it up, her puffiness making it hard to pick up, or if there's scar tissue where the pacemaker is connected to her heart. We are praying that she won't need it much longer.

The doctors are hoping to get some of Ella's excess fluid off today and tomorrow. She's puffy, but we've definitely seen her puffier. We need her kidneys to start working again, they took a shot before she got on ECMO so they're working overtime.

Speaking of ECMO...Due to the ECMO machine and how they couldn't move Ella while she was on it, Ella's head wound reopened, thankfully it's pretty shallow. She also developed a wound on the side of her head that hasn't reopened. The one on the back of her head is about the size of a nickel and the one on the side of her head is about the size of a tennis ball-ish (it's not round, so it's hard to compare it to something...). The wound care nurses have checked them out and aren't super concerned, but are bummed they happened... They will be coming twice a week to check in on them.

Today was a little hard even though Ella did well... This evening I broke down because it's been about two weeks since I have been home. Matt left tonight which is always hard. I miss Eli. All I want to do is be able to hold my baby and take care of her, but I can't. And I can't for at least a week... It's beginning to feel like this is never going to end. The tears have been flowing a lot this evening. 😢

Last night, Matt and I were out in the waiting room on Ella's floor because Child Life was bringing in a bunch of newly graduated therapy dogs. It was so cute to watch them. They were some of the most well-behaved dogs I've ever seen. After a couple of minutes, we heard the lady's voice on the intercom. Now, it's not abnormal for us to hear them with alerts, but this time she said, "Code blue. Pediatric Intensive Care Unit. Third floor. Code blue. Pediatric Intensive Care Unit. Third floor." Our hearts dropped and we ran into the PICU scared Ella was "coding" again. It wasn't her. It was the other little girl that was on ECMO down the hall from her. Little Lupita. She was able to get of ECMO that morning. I just started crying because it was scary for us, thinking it was Ella, and I felt horrible for Lupita's parents, who were standing outside of her door crying. These things are things that I would hope no family has to go through and it reminded me of how fragile these single-ventricle babies are. It's scary. Thankfully they were able to rescue Lupita and things seemed much more calm today.

Overall, things are looking good, but I can't help but be nervous that I'm going to get a call tonight saying that Ella's status has changed. Praying for a good night and rest for my Ella girl.

Love,
Jillian