We haven’t updated about Parker on here since April 1–we’ve been updating social media, but we realize not everyone has that, so just wanted to pop on a give an update.

Parker has been listed for 70 days on the transplant list. He is status 1A, meaning highest priority. There are several statuses for the waiting list, but because he has a stent in place, is on the ventilator, and requires IV heart failure medication, he is able to be listed 1A.

We get asked often how long we’ll have to wait. And there is no way for us to know.  We do know there are several ahead of him on the list. When an organ is available, they are gifted to those who have been waiting on the list the longest, are within the appropriate geographical radius for organ procurement and whose size matches best.

Parker has been doing so well the past few months. He is on non-invasive ventilation (NIV). His echos have been stable. He had been struggling with feeds when I last updated, and was not being fed for a while. We finally started him on an amino formula he was able to tolerate at 5ml/hr (4oz total throughout 24hours) for several weeks. We recently switched him back to breast milk and he has been doing great so far. He’ll be on just the 5ml/hr of milk (plus his IV nutrition) until after transplant, as his heart just can’t seem to handle more volume than that.

The hospital has done the best job of making days special and “normal” for us. They created a daily schedule for Parker that we do our best to follow. We’ve gone outside several times now which is always a fun adventure. He’s been working on getting stronger, and even rolled to his side for the first time today!

We pray Parker can continue to remain this stable as we wait for the perfect heart. Special thank you to Sam Littlefield for starting the prayers for Parker Lee Instagram. His dedication to leading prayer for Parker is incredibly kind.

Parker, we love you buddy and are so proud of your strength! Thank you to everyone who messages, texts, calls, prays—we are so grateful.