May 20 update

Addison is slowly getting ‘downsized’ as she gets better. Now she only has 4 active IV pumps on her IV tree. At one point, I think she had more than double that! She is no longer on the extra oxygen, so she has just the NG tube for feeding through her nose.

Though she has lost a pound while in ICU (which is a lot for a baby that was 9 pounds when we first got here), she has managed to get longer. For the first time today, she was back in clothes! She has been naked up until now, with all those tubes and lines going everywhere. When we put on a 0-3 month sleeper, her feet were stretched out to the very end. She has gained a little bit of weight in the past couple of days and I think it’s gone straight to her cheeks…they are definitely chubbier than they were post-surgery. Of course, within an hour of putting on the first sleeper, she pooped all over it. Then on the second sleeper of the day, she spit up all over that one. We decided to go back to naked – it’s much easier for changing diapers and cleaning puke.

Today was more of a rest day for her. The medical team decided not to push her too much with more changes today. She will be completely weaned off all sedatives/painkillers by tomorrow morning, which is also a good step. She is still on several different drugs, including antibiotics, an anti-seizure medication, and a few anti-rejection drugs.

We are heading into a long weekend and I think Aaron and I will try to get a little extra rest and sleep this weekend. The ICU nurses keep telling us to get as much sleep as possible because when we are upstairs, we will be rooming in with Addison 24/7 and we’ll be able to take over even more of the day-to-day stuff. Already, we have been sponge bathing her, changing diapers, and feeding her. It’s so great to be able to do some regular baby activities with Addison.

Hope you all enjoyed the gorgeous day today!

Elaine, Aaron and Addison

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