Today was not part of the original plan, but I want to share an update on Evelyn and also explain what happened in a way that makes sense....

Though Evelyn is doing great, we are going to wait until tomorrow morning to try and extubate her. Today the team wanted to see how the function of...

Evelyn was unfortunately not able to get her breathing tube taken out today. Her right heart function has decreased some, so the team is going to focus on...

This afternoon Evelyn had a very scary episode where her oxygen saturation levels suddenly dropped very low without warning, o2 into the 40's. The team responded immediately, called...

Not a lot of big updates for today. Evelyn still remains sedated with an open chest. The team is very pleased with how her heart function looks as...

Today has been an extremely long day. From 7:30 a.m. to 7 p.m., Ross and I didn’t see our daughter — by far the longest surgery she’s ever...

Today was another good day for Evelyn. She stepped outside for the first time in a week and a half. We were only able to go out for...

Today was a good day. Evelyn had a visit from our friend Alyssa, we played UNO, painted, colored, and danced. Then Evelyn asked me to dye her hair...