Looking Good

Hi Everyone!!!

Ella has continued to progress slowly but surely! We haven't really had any set backs recently, which is amazing (and kind of unbelievable!). I have been able to help care for her more and more and I'm really enjoying it!

Ella is down to "half" a nurse. Her nurse has 2 patients and that shows us that she is less critical and is getting better. We have been seeing little signs of getting closer to discharge (and no, we haven't gotten any word of discharge yet)!

Ella has continued to show all of us what it is like to be a fighter. She has looked so good these last few days that no one would guess that she was on life support just a few weeks ago. She is tolerating all of her feedings. Before today she was getting food continuously through the g-tube in her tummy, but today we are going to what's called "bolus feedings" where she gets her food given from the food pump in a shorter amount of time with a break in between. When we were home last month she was getting 70mL of fortified milk (we add formula for higher caloric value) every three hours over a half hour, so we are working our way up to that now with an even higher amount.

Doesn't she look amazing? Such a beautiful girl.

The nutrition has been so key in Ella's head wound healing, it's getting a lot better. After being on ECMO (life support), Ella's head wound opened up, but it wasn't as bad as it was before. I have been the primary caretaker of her wound and now have a new job with some that developed on her chest from the different wires and tubes that were in it. Not going to lie, the chest grosses me out WAY more than the head. It's pretty amazing how I have changed in this regard as well. Before Ella, stitches would send shivers down my spine, but since having her I have been able to handle a lot more than stitches! The wounds on her chest are pretty ugly looking. One is even (sorry for the imagery here...) tunneling under the skin and connecting to another one and they are pretty deep. After watching the care that these wounds need, the wound nurse told our PICU nurse, "Mom knows how to do it", so now I am in charge of it, eek! I love it when they have confidence in my ability to help care for my girl. I still have yet to push the Q-tip through the tunnel, under the bridge of skin, to clean it out--thankfully Ashley did it for me yesterday. That is the part that freaks me out. Tomorrow will be the first time that I do it though. Should be interesting! HA! 😝

The leak in Ella's aortic valve has seemed to go down a tiny bit! So that's exciting! The doctors say it's probably because they started a new med for her heart, which may be true, but I know it's really because God is helping it!!! Keep praying for that leak to subside!

Ella is still on the ventilator but has been doing sprints on CPAP pressure support. Each of these sprints (or more like strolls, as I was told by another doc) has seemed to have been pretty easy on her. We continue to pray for her to get off the vent quickly and build up the strength and stamina needed to get her home without one!

One unfortunate piece of news is that we will always have to be in isolation precautions for any of the future hospital stays. The bacteria that she contracted in her chest (not the one brought in by another patient) is one that they make the families always dress down for, for the rest of their lives. Bleh... but it could be worse! And this way, Ella will actually be more protected from outside bugs getting to her. So oh well, it's annoying, but definitely the least of our worries!

In other news, Eli has continued to be a trooper through all of this. He is such a big boy now. He has grown a lot from all that has happened these last five months. He's even going to preschool on Tuesday!!! He is really excited and so am I. I know he's going to love it. I get to spend the first day of preschool with him, so that will be really fun.

I cannot believe that it is September already. Where have these last 5 months gone?? I guess they've been in a hospital room for me! It has been weird not going back to my "normal life" and teaching, but I honestly couldn't imagine not being in the hospital room with Ella at this point. I think it's gotten to the point now that it will be weirder when we get to actually be home. Last Sunday I took Eli and Matt back to Grass Valley and it was the first time that I felt really homesick. I feel like I've been able to just go with the flow for the most part since Ella was born, but for some reason Sunday was really hard to leave. It was just a sweet, though short, time at home... I spent time with Matt, gave Eli a bath, sat outside in my garden, saw my friend Kristen and her son, the air felt crisp like it does when Fall is close, and it just felt so good to be in our house. So I reluctantly drove back to Sacramento. It's not that I didn't want to see Ella or anything like that, it was just that I remembered what it was like being in my own home and the joy that it brings me. After I arrived at the hospital I spent time with Ella and knew immediately that this is where I belong right now. God has been so good at helping me to be content in my circumstances these last few months and I have learned so much about Him, myself, and life in general that I would never have experienced without being here.

Hope all is well in the outside world! 😊

Love,
Jillian