Counting our blessings at Christmas

Autumn is two months old today, and she is doing great. We are celebrating her first Christmas here at Johns Hopkins Hospital, grateful for how far she has come.

A lot has happened since our last post — most of it pretty awesome. We are excited to say that it looks like we will be counting the time toward our exit in weeks now instead of months.

It’s a miracle.

Autumn is completely off the breathing machines. Her pulmonary hypertension is under control on just one medication. And she is almost completely off the narcotics she needed when she was sedated in the early days.

Now we just need to figure out her stomach.

Currently she receives nutrition through an IV because she has been unable to keep anything down. Reflux is common for CDH babies, but Autumn has something more. The doctors are vexed by it. They did a surgery a few weeks ago that they thought would fix the issue, but she is still having challenges.

She is scheduled for another surgery next week that we hope will get us closer to the door. She has had four surgeries already. Hopefully this one will be just what she needs.

In the meantime, a children’s hospital is a pretty magical place to be during Christmas. The nurses and doctors have given Autumn gifts. Santa Clause gave her gifts. Family and friends have given her sweet gifts. She got gifts from the hospital volunteers too. We are so grateful.

For now, all is calm. All is bright.