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.

In simple terms, Sabrina is still listed for a heart transplant, but she is no longer considered at the very highest level of urgency. A 1A status is reserved for children who need constant, intensive hospital support and have a mechanical device helping keep their heart pumping. So far, Sabrina has not needed that type of mechanical support.

What makes this especially difficult is that until today, we had a clear path forward. This change does not mean Sabrina no longer needs a transplant. Her heart has not healed. It simply means the wait for a new heart is likely to be much longer.

Now that we are 1B, the plan is to attempt to come home and do everything we can to keep Sabrina as healthy and stable as possible for as long as possible. But the reality is incredibly hard to face: this path often means waiting for her to get sicker in order to qualify again for 1A status. Caring for your child while knowing there is no clear next step until they decline is a heavy place to sit.

This begins a new phase for our family. We are learning how to manage Sabrina’s complex medical care at home—essentially becoming her nurses around the clock. We are willing to do whatever she needs, but it comes with many new challenges and unknowns.

We have very mixed emotions. We’re grateful that Sabrina is stable today, but this likely means a journey we hoped would take less than a year could now stretch into several years. Our focus is doing everything we can to protect her health while we wait for the heart she still so very much needs.

One small potential positive—if we can manage everything safely—is the possibility that our family of four may be under one roof again. That is still to be determined.

We’ll keep taking this one step at a time. Thank you for continuing to walk alongside us.