Blog

Keep praying for our girl

Posted May 27, 2026May 27, 2026

They tried to extubate her on Sunday. After Evelyn was extubated, she was unfortunately too weak to maintain her breathing on her own. CPAP and BiPAP were not...

Today we got a piece of our girl back

Posted May 23, 2026May 27, 2026

Earlier in the day, Evelyn was about to get her tube out. The team had been slowly weaning support and watching to see how she tolerated everything through...

Small Steps…

Posted May 22, 2026May 27, 2026

No new updates tonight, Evelyn is still intubated, but we are continuing to make progress toward extubation. It was noted in her chart this afternoon that if her...

We have a PHD in Evelyn- Advocating Matters

Posted May 21, 2026May 22, 2026

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....

Hope for Extubation Tomorrow

Posted May 20, 2026May 21, 2026

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...

Heart journeys are a marathon, not a race

Posted May 19, 2026May 21, 2026

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...

Scary Moments

Posted May 18, 2026May 21, 2026

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...

Waiting for Evelyn to Wake Up

Posted May 18, 2026May 21, 2026

Evelyn continues to do really well. Every time a doctor walks in, I hold my breath expecting the worst, but every time they have nothing but good things...