13 Days til Surgery

Claire figured out how to hold her pacifier AND
get her fingers in her mouth this week. 

Claire's surgical team met yesterday morning to go over all of her scans and medical record. They all feel that her surgery and recovery will be more complicated than usual because she also has pulmonary hypertension. Because of this they have decided to move her surgery to 10/13, she is able to be the only cardiac surgery on that day. We are still being monitored on an outpatient basis for her weight gain and will go in on 10/7 for her two hour pre-op appointment. She will have additional scans done, we will meet with the surgeon and anesthesiologist, and they will draw her blood so that they can get blood for surgery (she will be on full heart/lung bypass so she will definitely be getting blood during surgery).

Our check-in time is 5:30am on Monday the 13th and surgery starts at 8am.  Just like last time, I will create a "surgery updates" blog post and will post updates throughout the morning.  They have a surgery waiting room for us to sit in and they will call us periodically with updates that I will share.

At our appointment yesterday, she was still not showing any weight gain so we have switched to fortifying my breast milk with a "pre-digested" prescription formula.  She is still on continuous NJ feeds (into her intestine) via a pump. We will try the new formula for a few days and go in again on Thursday to see if we have made progress. One of the benefits of a later surgery date is more time to gain weight!  Her surgeon would like her to be a little over 2 pounds heavier than she is now which probably isn't realistic in two weeks time but we're going to try to get as close as we can.

13 days ... trying to get in as much cuddle time as we can as it will be a while before we will be able to hold her again post-surgery.  I am starting to feel like I'll be holding my breath until I hear the words "we are finished and everything went great" ... until then, I'm picturing her in Jesus' arms and filling my heart with as many peace-filled scriptures I can find ;).  I will update again on Tuesday after our pre-op appointment when I will have more information about exactly what they are going to do.

Thank you for praying!