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.
Let me begin this post by telling you it may be a jumbled mess. During the past two weeks I have had so much on my heart and mind. I guess the “so much on my heart and mind” has been the upcoming heart surgery. The past two weeks I felt as if the dread of the unknown was all consuming. I struggled! I cried – ALOT! I whispered constant prayers where I asked God to deliver me from the grasp Satan had on my mind. I begged for strength and grace and mercy. On days where I felt like I might fall apart He “renewed my strength.” He renewed my strength by hearing my three year old, Lily, sing, “Those who wait upon the Lord shall renew their strength. They shall mount up with wings as eagles. They shall run and not be weary. They shall walk and not faint. Teach me Lord, teach me Lord to wait.” Lily loves this scripture song. She sings it again and again with gusto and zeal. As difficult as it is – I have to wait on the Lord. I can’t run ahead to David’s heart surgery – we are not there yet, so the grace for that day isn’t there either. I have to walk day by day, living in the moment, because this is where my grace is found. He has proven Himself faithful in the last 10 weeks of David’s life, and I know He will be faithful in the weeks to come.
Shortly after David was born I began researching various aspects of Down Syndrome. I came across this statistic several times – 92% of women who undergo genetic testing before birth abort their babies if Down Syndrome is suspected. I was shocked by this number. Because I look I David, and he is just my sweet little boy. Perfect. Cute. Big Cheeks. Pretty red lips. Long toes. Red Mow-auk (that has been trimmed twice). Fat rolls on legs and wrist. Smiles and coos. Yawns and stretches. Except for God’s mercy I am no different than the women who chose to end their pregnancies. I have thought about the 92% alot since David’s birth, and I wonder why. Was it the fear of the unknown? The realization that their child would look different, act different? Wouldn’t be “perfect” or fulfill their dreams? The hopes and dreams we have for our children are exactly that – OUR hopes and dreams. They aren’t David’s. I want to and think I am learning to see beauty with new eyes. At the out-patient surgery clinic, I saw a little girl with club feet, another child strapped in a wheel-chair who could do little except become excited over her daddy’s whispers and kisses. I saw oxygen tanks and ostomy bags and deformities. Before David was born I would have stared and thought, “Oh, that poor mama and daddy.” Now, I look at children who don’t fit into a mold, and I know the potential for all the blessings these children can pour into our lives. I know God has given us blessing after blessing through our Sunshine. I hope I don’t sound preachy, because some days I still wrestle with the new path God has given me to walk. At the end of the day, in all honesty, I can tell you that God brings me to the realization that this is the best path for me to walk.
I am thankful that God has chosen to reveal Himself to me – that I am among the 8% who will enjoy the miracle of David’s life.
A quick update on David – he is weighing in at 10 pounds, 8 ounces. He continues to eat like a champ. I smile when I warm up his “big boy” bottles. We saw cardiology and received a good report. He looked and sounded well enough that Dr. Lee did not do an ECHO this visit. Our next appointment is in August. We will move towards finalizing surgery plans during this visit. We had a follow-up with Dr. Feliz, and David continues to receive good reports.
Please keep us in your prayers,
We hope you enjoy your holiday!
The Lord continues to shower us with blessings. Blessings we never expected. Blessings we didn’t know to look for. Blessings in individuals and families we have met and know we will meet. Blessings in unexpected places like hospitals and doctor’s offices. Blessings all around us each day.
Shortly after David was born, I was contacted by a New Albany neighbor, Mindy Crawley. She and her husband have three boys – Cooper, Cason, and Camden. She was 29 when Cason, who has Down Syndrome, was born under similarly surprising circumstances. Over the past 8 weeks we have emailed back and forth, and this past Saturday their family came over for supper. I was somewhat nervous about their visit. Besides David, I have never met or had any interaction with someone with Down Syndrome. I had tears in my eyes as I watched this smiling little boy come running down our walkway. He’s not too different from any other 3 year old boy you would meet. He loved opening and closing doors, playing with toys, and eating ice cream hoping for seconds. He enjoyed running around the backyard with bare feet, swinging on the swing set, and playing in the sandbox. His smile was contagious. It made me happy to watch him play. It made me look forward to our future with David – to know he will just be our little boy. He may not walk as quickly. He may use some sign language to help communicate, but he will still be a little boy having fun. A little boy who has showered our lives with unexpected blessings.
I was able to sneak one hug from this smiling, happy boy, but he liked Louis. We look forward to seeing this family again. I think a meeting at El Agave might be in our near future.
We have 3 doctor appointments this week – we will keep you posted.