Little Hearts

Caleb, born 2016

My husband and I sat unsuspectingly, pouring over the amazing 3-D pictures of the beautiful baby growing inside me, waiting for a doctor to hand us the envelope which would reveal our babyís gender. We were so excited. It was the last thing we expected when a doctor entered our room somberly and introduced herself as the high-risk OB. My heart leapt into my throat. My pregnancy was not high-risk. That day, we found out our baby had Transposition of the Great Arteries. It felt like our world came crashing down. I had to constantly remind myself: You are so lucky; You have a baby; His condition can be treated; There is so much hope in this trial.

We transferred our care to the world-renowned Johns Hopkins Hospital, searched online for information and hope, and broke down into tears over and over. Looking back, I am grateful we had this time to prepare ourselves for the scary start to our son, Calebís, life. Thirty-three weeks into my pregnancy, my healthy pregnancy got complicated, and I delivered Caleb prematurely at just 34 weeks gestation.

Caleb was intubated at birth and taken straight to the NICU. When Caleb was just a few hours old, he received an atrial septostomy to stabilize him. Over the next four days, my husband and I tried to be parents of our medically unstable little baby. Two days after Caleb was born, his nurse let me hold him for the first time. Our doctors debated if they should let our little preemie grow before his surgery or repair his TGA right away. Caleb had the last word. He was unable to tolerate being taken off prostaglandin. Because of this, it was decided that Calebís heart must be fixed right away.

At just five days old, we gave our baby a kiss on the operating table. As we left our son, a nurse called my way, ďItís going to be okay mom.Ē Their confidence uplifted us. Still, it was the most excruciating moment of our lives. Six long hours later, we received news that Calebís surgery was a wonderful success-our babyís tiny heart had been repaired. Calebís recovery has been remarkable. Just thirteen days after his surgery, we took Caleb home.

Today Caleb is growing by leaps and bounds. He is meeting his milestones, despite his prematurity and congenital heart defect. He is gaining weight at an amazing rate. Caleb has received breast milk exclusively and could nurse exclusive at about two months of age. We continue to follow-up with Calebís cardiologist. Caleb has pulmonary artery stenosis which may require a cardiac catheter procedure in his early childhood but this is not affecting his development.

Most days, I donít worry about his heart. He is a normal, happy and healthy baby. We attribute Calebís success to the amazing care we received at Johns Hopkins Hospital. The people who care for your infant during your most vulnerable moments are completely unforgettable. It is because of them, that we enjoy the snuggles and smiles from our son each day. Most importantly, we attribute Calebís success to an awesome God. We had a large team of people praying for us and for Caleb from the moment we found out he had Transposition of the Great Arteries until the moment we took him home.

Wishing strength to all CHD families.

Story by Lindsay, mom to Caleb - Maryland

10/31/2016
Natalea-Jo, born 2004
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Pablo, born 1999
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