CHOP.

Please view the previous post if you’re curious as to how we got to where we are now!

During Brendan's NICU stay, I reached out to Children's Hospital of Philadelphia, commonly known as CHOP. I spoke to some amazing people that told me to transfer Brendan immediately and they would take care of him. At that point, I wasn't ready to leave Pensacola or be away from my home or Mabel and Wright anymore than I already had. The doctors in Pensacola seemed to be listening so I chose to stay.

Hindsight, I wish I would've packed him up and transferred him then. I can't go back so we're moving forward!

After a few short calls and texts with CHOP on the day I decided to leave Sacred Heart, we had an appointment. THAT MORNING. Granted it was a video call because we were in Destin, and they are in Philly and, COVID. But STILL. THAT DAY. THAT MORNING. So much more promising than the treatment and urgency at Sacred Heart. The nurse and the doctor promised me that they were going to take care of Brendan and to get ready for things to move fast. They weren't kidding! I had many video appointments with various doctors the next day. A few days later we were on a plane to Philly!

After a long goodbye with Mabel and Brendan, here we are.

Boys first flight was a sucess!

The night we arrived Brendan was scheduled for a sleep study. The next morning the nurse came in and asked me how long we were planning to stay. I told him they told us to be prepared to stay anywhere from a week to a month. He explained that Brendan had severe episodes all night and he was glad to know I was prepared for some serious intervention.

We've had many appointments over the last few days. Genetics, Plastics/Craniofacial, Anesthesia and Radiology. Everyone here is so nice and accommodating. One of the best parts is that there's hardly every any waiting!

After meeting with the Craniofacial surgeon, it was clear from his X-ray and a more detailed review of his sleep study, that Brendan needs intervention. The Craniofacial surgeon went over the steps of the jaw distraction and he said unless the bronchoscopy showed anything more concerning, that he would have the surgery on Tuesday. The plan is for us to stay for 2 and half to 3 weeks post surgery for them to complete the distraction and then for us to come home. This consists of them turning keys in his jaw to extend it every day, until it is distracted to the appropriate length. They will take the exterior brackets off before we come home then we will come back three months later for them to remove the interior brackets and to repair his newfound microform cleft.

I am not excited for Brendan to have surgery but I am very optimistic. The care at CHOP has been exemplary thus far and I feel they are going to help my baby tremendously.

I‘m not sure when I’ll see Mabel or Brendan but hopefully soon! Being away from them makes this so much harder. Thankful that my mom

is navigating this with me!

As for Wright, he is doing wonderful and is the happiest baby ever!

Thank you to all of you that have reached out and all of your prayers. I know God is listening and guiding us through this.

The boys are 7 months today! Look how far we’ve come! God is good!