On Wednesday of this past week, we met Dr. Christopher Knott-Craig. Dr. Knott-Craig will perform David’s heart surgery. I have been praying for weeks that the Lord would grant me peace and reassurance from this meeting. The meeting was sobering for both me and Louis. The reality of our baby having open heart surgery at 3 months of age is difficult. Although the day proved to be difficult and emotional with many tears shed, the Lord did show us small mercies and comfort throughout the day. This sign is in the cardiology waiting room…God has placed us where we can receive the best care for David – comfort!
Before we met Dr. Knott-Criag I had read and researched his history. He is a world-renowned heart surgeon. Developing a particular type of surgery that had never been done before. Parents could not say enough good about him. I read stories of parents who had followed him to LeBonheur so their children could remain in his care. If you interested here a few links. I posted these especially for family who might like being more familiar with David’s surgeon.
During our meeting, we learned that Dr. KC came to LeBonheur because they would allow him to introduce a no pain and anxiety / compassionate approach of treatment – comfort. Makes perfect sense to me, but some CVICU units do not practice this type of care. He wants the experience to be as anxiety free as it can be for both baby and parents – comfort. The CVICU at LeBonheur is a 12 bed unit – beds large enough that mothers can get in bed with the baby for comfort and feeding – comfort. Surgery is scheduled for August 13. We will arrive on August 12. Dr. KC said the nurses are allowed 2 tries to get an IV. If they don’t succeed he forgoes the IV and puts it in after the baby is sedated for surgery – comfort! We will not have to withhold food from David the night before surgery. I will be allowed to feed him throughout the night – comfort! The entire process from start to finish is 4-5 hours – comfort. Dr. KC told me to wear the same shirt for 2 days and bring it in a zip lock bag. They will put the shirt near the baby during surgery and right after when we are still unable to hold him – comfort! The surgeon has performed hundreds of surgeries correcting defects like Davids, and fewer than 6 have had to return to the operating room for leaking issues – comfort! Some children go home as early as 4 days after surgery. Even with David’s Down Syndrome and Hirschpreungs Dr. KC does not expect us to be there longer than seven days – comfort! After meeting Dr. KC his nurse gave is a tour of the CVICU. Louis and I will be able to stay with David – comfort! Heart surgery is sobering and scary, but Louis and I both feel that God has given us the best care we can receive for David.
On our way up to the CVICU we met Pam in the elevators. Pam was one of our favorite nurses. She was David’s nurse on the day we found out about his Down Syndrome, and she was the mother who prayed when she was pregnant that her baby would have Down Syndrome. We were thrilled to see her. After we left LeBonheur we went to lunch and Sarah, our other favorite nurse, came to visit.
I’m pretty sure David remembers his first bubble bath from Sarah. I’m thankful that on a very difficult day God caused our path to cross with these two wonderful women who have been a blessing and a source of strength.
I ask again that you pray for our family. For me please pray for mental / physical strength and peace in the days before surgery. For Louis, the strength and ability to lead our family with wisdom and tenderness while he tries to fulfill his other daily responsibilities. For Lily please pray that she will understand why we will be separated again. For David that he will continue to eat and stay well.