Category Archives: David’s heart

LeBonheur Heart Reunion

Last weekend Lily, David, my mom, Morgan (affectionately called MoMo), and I loaded up and headed to Memphis for the weekend. Our first stop was Didi and Uncle Steve’s house. Uncle Steve is a great cook, and we had a yummy meal of grilled fish, vegetables, and risotto waiting on us. We always have fun at DiDi’s house. Lily had the camera, so excuse the little finger in the way.

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DiDi lives 2 blocks from LeBonheur, so during those first weeks of David’s life we spent alot of time here. Many memories came flooding back – panic attacks, sleepless nights, exhaustion like I’ve never experienced before, tears (tears and more tears), bowls of strawberries and yogurt waiting on me because Uncle Steve and DiDi knew that those were some of the few foods I could keep down, the fear on the morning of David’s Hirschpreung’s surgery…

Here we were 10 months later to attend the second annual LeBonheur Heart Reunion. A lot of those memories brought tears to my eyes, but the faithfulness and mercy of God moved me to tears also. I was there with my two children and with some of the individuals who stood beside me through those difficult times. There was David snoozing on DiDi’s chest, swinging in his little portable swing, happy and content and making us smile with his smile – that smile that lights his entire face. Lily was busy playing in the warm sunshine, and serving Uncle Steve breakfast, and cleaning the cat box, (because that is the “neatest” chore in her book). She is a big sister because of God’s mercy in answering so many of our prayers.

The heart reunion was a lot of fun. It’s kind of strange how easily you can strike up a conversation with a complete stranger. We all have a common bond – our babies were alive and well because God has given man the ability to repair tiny hearts. There were miracles everywhere you looked.

There was face painting and cookie decorating

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and crafts

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I love this picture of Lily and David.

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Dr. Knott-Craig arrived about half way through the reunion and you would have thought a celebrity entered the room, well, I guess to us he is a celebrity. Mamas holding their heart warriors swarmed him. If these pictures don’t melt you heart…

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yeah, I was crying happy, thankful tears! If I’ve said it once I’ve said it hundred times. I will say it until the day I die, “I will be forever grateful for Dr. Christopher Knott-Craig.”

Our Heart Story

This is a story you’ve heard, a story I’ve told many times…

The month of February is heart month, a month where we celebrate the ones we love. This year during the month of February, (and really every day) I celebrate my heart baby. February 7-14 is Congenital Heart Defect Week, and this week has special significance for me.

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Louis and I prayed for a baby for a year and half before our prayers were answered. We prayed the prayer that every parent prays…”Lord, bless the baby to be healthy, bless the delivery to go well.” Looking back I was guilty of praying nonchalantly. I was 31 years old, healthy, perfect sonograms, uneventful pregnancy, of course, I would have a healthy baby. David was born on May 4, and I instantly fell in love with our Sunshine. I was allowed to hold David for a few minutes before a nurse, who was unhappy with his lack of crying, took him to be examined more closely. I kept asking, “Is he okay? Why can’t I hold him?” His oxygen was never higher than 92%, but once they were comfortable enough with his breathing patterns they let me have my baby boy. I counted fingers and toes, and they wheeled us to a recovery room. Since David’s oxygen was low the Nursery nurses recommended he stay a few hours in the nursery for observation. A nurse brought David to me three hours later for his first feeding. She was a kind nurse who sat on my bed and told me that David was turning blue around his mouth when he cried. She assured me he was receiving great care and that the pediatrician had been called.  I couldn’t get him to eat or wake up, and I had a faint, uneasy feeling that something wasn’t right. I loved on David, sang to him, kissed and snuggled him. Those first moments are some of the sweetest – the ones you always remember.

Early the next morning a pediatrician came to my room, took my hand and told me she suspected congenital heart disease. Tears, panic, anxiety! What did that mean for David? A specialist from LeBonheur was called, and a few hours later Dr. Lee came to give us our official diagnosis – atrioventricular canal defect (AV Canal). This defect left David with only 2 chambers in his heart instead of the usual 4. God was merciful when he sent Dr. Lee. He is a gentle, kind man. An understanding man with 2 small children, a man who was so patient to answer all my question, so reassuring that David’s heart could be repaired. He held a diagram in his hand explaining the anatomy of the heart, the defect, the nature of the repair. I heard very little of the explanation, because I could think of nothing besides open heart surgery for my little boy.

There were no NICU beds available at Germantown Methodist, so David and Louis, along with the flight team, made the trip to LeBonheur Children’s Hospital. I begged to be released early, so 12 hours after delivery I was on my way to join Louis and David. I called to check in and Louis told me, “This place is amazing, and we have the best nurse. You will love her.” He was right! Nurse Sarah was the best!

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Sarah sat down with me shortly after my arrival and began to explain all the wires, tubes and medications. She handed me a stack of papers about AV Canal Defect and there on the front page – this heart defect was most common in Down Syndrome children. I walked over to David’s bed, looked at my sweet boy, and thought, “Yeah, I can see it in his eyes.”

In the days and weeks that followed we had several echoes on David’s heart.  His oxygen never went above 95% and his heart rate was always too fast. Once David was discharged my soul mission was to keep him healthy and gaining weight until he weighed 10 pounds. Ten pounds and 3 months old was our goal. On August 12, we were admitted for heart surgery. David weighed 10 pounds, 11 ounces and was 3 months old.

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Dr. Christopher Knott-Craig repaired David’s heart on August 13.

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This week I celebrate love. I celebrate my family. I celebrate David’s life. I celebrate his heart. I celebrate 6 months since surgery. I sing praises to God for all the people who stood with us, held our hands, whispered prayers for our sweet Sunshine. I thank God for modern day medicine and the individuals who took such excellent care of David. I pray for other heart warriors.

This heart warrior has forever changed my life! I celebrate him!

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