Little Turkey pulled her feeding tube out from her nose last night, and was very pleased with herself.  Shoutout to a great nurse neighbor, Audrey, for coming over...

A quick update on Sabrina Despite all of our isolation and doing everything we possibly can to keep her safe, it looks like our girl has picked up...

Life at home looks a little different than we imagined — but Sabrina is doing so, so well. She’s thriving. She’s happy. She’s smiling. She’s eating some of...

On Saturday, 1/10/26 Sabrina was discharged to home after 168 days inpatient at Children’s Hospital. I got to put her in her car seat and drive away. It...

Today Sabrina had her Broviac line placed, and she did great. She was under general anesthesia, which is always a little nerve-wracking for a heart kiddo, but the...

We’ve been a little quiet lately because we’ve been very busy training to get ready for Sabrina to come home. That means learning and practicing everything — administering...

As we close out 2025, I keep coming back to how this year has somehow held the highest highs and the lowest lows of our lives. We started...

Quick update! We’re working toward getting Sabrina off continuous feeds in preparation for going home. She’s been on continuous feeds since mid-November, when bottles just weren’t something she...

This morning we woke up to upsetting news: Sabrina is no longer approved for her 1A exception and has been downgraded to 1B on the heart transplant list....

'Twas the night before Christmas, inside hospital walls, Where the hallways stayed hushed and soft paging calls Echoed low through the unit, all lights glowing bright, As families...