Christmas Eve

This year I haven't thought much about Christmas. I have not had the emotional capacity or energy to. I know it's awful not to have gotten my child anything for Christmas but honestly, it's just too hard to buy her gifts and celebrate knowing what she's going through. I know this surgery, and all those that shall come next, are meant to give her life and health but each carries potentially fatal risks. So while we celebrate each a every victory and milestone of recovery- I can't help but feel our true Christmas will be the day we take our girl out of here for good. That day will be my Christmas miracle.
Needless to say, all I have wanted from the moment we learned of Avely's condition- is to have her happy and healthy. It's a huge want. A want that many parents of CHD kids never get to experience. We're lucky that it's still an eventual possibility for our girl. She continues to make strides in her recovery and we hope to get out of the pediatric cardiac ICU and into a less specialized and acute floor by the first of the year. 

As for specifics: 

Today has been quite the eventful day for our dear Avelyn Marie. She is slowly but surely making headway in her recovery. She started to urinate off excess fluid (which was given to her immediately post-op to get her blood pressure up) and hasn't let up! She's starting to look less swollen but is still retaining quite a bit in her belly, hands, and feet. 

All the extra fluid also makes it more difficult for her to breathe. It can seep into her lungs and also just weigh her chest down.

Once she started urinating the excess fluid it was time to work on extubation. She hated her breathing tube. Every time she would move her little head with it in she would fight and struggle against it, which would often upset her to the point of needing pain medication. Through the night she performed admirably on CPAP trials, which are done to gauge readiness for extubation. Although she got a bit worn out from all the trials, they were still able to pull her tube in the late morning. Since then she has been doing pretty well. Although she does have periods of breathing too fast. She's still in high flow oxygen and will be for sometime but she's improving. 

Since the breathing tube came out we were able to hold her for the first time since Tuesday. Holding her is a major process of managing the 2 central IV lines, arterial line, 2 peripheral lines, chest tube, 5 lead heart monitor, kidney and brain perfusion monitors, pulse oximeter, and high flow oxygen cannula. So we won't be able to do it much for now but I am beyond grateful none the less! 

The two hours with her in my arms was the best Christmas gift I could ever imagine. 

In some of the photos you can see the excess fluid collecting in her little face and neck. It's been hard to see her so puffy and I'm glad she making strides towards getting it all off. Please keep our little Avie in your thoughts. She's fighting her damnedest against an uphill battle that she doesn't understand nor deserve. This kid is the strongest individual I've ever known and she's only a week old.

Much love to you all and Merry Christmas!