Today is a special day for our family—it’s Abigail’s 4th birthday and Devin and my 8th wedding anniversary. I can’t believe we’ve been married for 8 years and that Abigail is already 4. It truly feels like just yesterday she was born and in the NICU.

This morning, Abigail was taken off all sedation, and so far she has been doing well. Please pray that she does not experience withdrawals and that she continues to tolerate her feeds. Yesterday was a tough day as she threw up multiple times, so they stopped her feeds for a while. They have since restarted them at a slower rate and smaller volume.

During rounds, the PICU team shared that one of the requirements for discharge is that Abigail is able to tolerate most of her feeds at her pre-surgery volume of 165 ml per hour.

She is scheduled to go back to the OR this Friday around 12 PM so the surgeon can take another look at her airway. There is also a possibility she may need a stitch in one of her incisions, as it has been bleeding slightly and may not have fully closed.

PT came by earlier today to help her regain strength so she can walk without being wobbly after being sedated for a week. Speech also evaluated her because she has been trying to talk, but we haven’t been able to hear her. We learned that it’s normal for kids to temporarily lose their voice after airway reconstruction surgery.

Abigail was originally scheduled to see the plastic surgeon outpatient this Thursday, but since she is still inpatient, he came to her room instead. He spent time with us discussing possible next steps for future surgeries to help correct her jaw and open her airway further. The ENT surgeon had mentioned a few days ago that she has become more difficult to intubate due to her small jaw and limited space for her tongue.

The plastic surgeon said he will work with the ENT surgeon to come up with a plan and will update us before we leave Boston at the end of the month.

Please continue to pray for healing for Abigail and that she will not need any more airway reconstruction surgeries.