Today was our first day "rooming in" at the hospital. We essentially just did what we've been doing for a little while now but with a little less help. We are required to know when Ella gets fed and when her medications are due.
Matt was almost giddy this morning in anticipation. He walked onto the floor and said, "Start the timer!" 😁 We set up all of our home equipment in Ella's room last night so we were prepped and ready for the stay. Her equipment is MUCH louder than the equipment that the hospital has. The suction machine sounds like a small generator and her trach mist that she's on at night is a loud white noise.
I think the hardest part so far has been making sure we are staying on top of her medications. We've done a good job at it but I'm curious what it is going to be like when we are at home with Eli and other things distracting us. We have a pretty good system though so I'm sure it'll be totally fine and soon become routine. Today I spent some time organizing a new daily check off for her meds with the correct dosage and times for each one. She will be going home on a total of EIGHT medications. One is for her heart, one is aspirin to thin her blood, one is the lovenox blood thinner, 2 are reflux medications (this is super common of babies that have had heart surgery... doctors aren't really sure why the two seem to correlate), 2 diuretics, and 1 oil to add calories to her diet without adding too much volume. Pretty nuts! Some are given once a day, some with feedings, some three times... It's a lot to keep track of so that's why I made the check off. I also color coded the meds and the syringes that we use for them with stickers. I don't know if the color coding is super necessary, but hey, it may make it harder to make a mistake later.
Matt did a lot of the hands on stuff while I worked on the organization. He changed her, measured meds, asked for the meds and food when needed, etc. He was a busy guy! He seriously impresses me. And on top of all that, we had physical therapy and speech therapy today. Lots going on in Ella's little room.
It's been really weird/hard saying good bye to our nurses and doctors. Guys, I know I've said it a lot, but they are AMAZING. They have taken such good care of Ella. I have grown so attached to all of them. The one thing I keep telling myself so I'm not as sad is that we will see each other again whenever she has her next surgery. I am also really thankful for social media because we will be able to stay connected that way as well.
I have so much more to tell you all but for now I am going to go to sleep and try to wake up to relieve Matt in a few hours. 💜
Love,
Jillian
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