Chunk-a-Munk

Hi everyone!

Today was a much better day than yesterday! I started to feel more settled and Ella girl was wide awake for most of the day. I used to be a little concerned while she was in the hospital because she slept so much, but I think it was because she was a mix of healing and not having anything else to do. We had three nurses in our home with her today. Two were training with the other to get a better feel for what Ella's care looks like. I guess I should rewind a little and explain that we weren't able to get the nurses that we had prior to our last hospital stay (one changed careers and the other got a new patient). The new nurses studied her like crazy checking out the schedule I made, the significant dates of things that have happened in her life, and any other medical settings or needs. It was so cool seeing them take such an interest in her. So today Ella was well loved on and got a lot of attention. I was able to follow her med and feeding schedule to a T! It helped relieve a lot of stress. Matt and I both hate it when we aren't on time with things because it ends up delaying other things, so today we were spot on! It was nice not to have that added stress, we just followed the schedule and things went smoothly!

It's been fun to see how Ella has been so alert and awake, observing her new environment. I feel like she is going to make leaps and bounds in development no matter how long we get to stay home this time. We are hoping to help her with her right side's development specifically since it was affected by the stroke.

Eli went to preschool and took a nap at Grandma and Grandpa's today so I was able to settle into our house a little more with the help of my mom. I never did take that nap that I wrote about! I felt fine most of the day, so I just kept trekking along. Tonight I'm not as motivated as I was last night during my "shift". Last night I had a ton of projects going on and was picking up and organizing all of Ella's things, but tonight will be a more relaxed night and do-all-I-can-just-to-stay-awake kind of night.

I called Ella's dietitian today to check in about the throwing up situation. We have a couple of plans in place to help her tummy not get so upset. We will try a series of things until we figure out what exactly is making her throw up. So this afternoon we started with removing the MCT oil from her diet. So far, so good. The fat content may have been a little much for her this time around and she's not needing as much these days. She has been gaining significant weight which you can see in these photos! She's gone from 3rd percentile in weight to somewhere in the 30s!

Right before we left

That hair!!! Those jammies!!! 😍

She's gotten so big! It's crazy!!! Check out all of the things she's hooked up to. Nuts, right?? I am hoping that, relatively soon, we will be able to condense her feeding times down to an hour or less like we were before so she won't be hooked up to quite as much all of the time.

Our little chunk-a-munk has seemed to settle right into the home life. I can't wait until she starts wiggling around on the ground with Eli again. We are still getting comfortable with her ventilator so that will come soon! She wore his old jammies tonight and it was so sweet to see her in them. Thank you for all of your prayers. We feel them!!!

Love,
Jillian