On CHDA Week

Some of you may know that I am the mommy of a heart baby. You may not know that it is Congenital Heart Defect Awareness Week.


When Jay was born, 12 weeks early and weighing a mere 1 pound, 14 ounces, he was diagnosed with Tetralogy of Fallot. Basically, this means that he was what is commonly referred to as a "blue baby." When he would get upset, his oxygen saturation would go down as a result of his heart defect and he would turn blue. Basically, he had a narrowed right ventricular, which required a stint of sorts to keep it open and hole between the chambers of his heart that required a patch. That's the simplest way I know to explain the situation.


Because of his very small size, he wasn't eligible to have the surgery. His heart doctors wanted him to weigh at least 15 pounds and he needed to be ten months old to have the surgery. Let me tell you, waiting for a 28 weeks preemie to reach 15 pounds felt like it was going to take an eternity.
Unfortunately for Jay, he wasn't stable enough to come home without the surgery. Which meant we waited it out in the Infant ICU with a trachea, oxygen and ventilator. Being on a vent for 10 months is very damaging to a baby and can cause brain damage. That added to Jay's brain bleeds and lack of breathing at birth made for a very scary situation.


The day before Jay turned 10 months old, the heart surgeon came to us and said that he had a spot open first thing in the morning and he would take 14 pounds and some change as an adequate weight. He knew that the longer we kept Jay on the vent, the greater our odds of damage were.


At 6 am the next morning, my little guy went into surgery. He was in surgery for 12 hours. It was the scariest 12 hours of my life. I'll never forget seeing Dr. Brown's face after the surgery and having him hand me the squares he used to cut Jay's patch and stint. I still have them and every time I look at them, I realize how incredibly blessed we were to have such an amazing surgeon operate on our son.


After 10 months on a vent, Jay was off of it within 3 days of his surgery. He did amazing. His heart defect was what was holding him back from thriving all along. Within a month, we went home on nothing but oxygen. It was an amazing thing. 


There are so many people I would love to thank for helping Jay when he was in those early fighting stages of life. We had the most amazing doctors and nurses I have ever encountered. But my greatest thanks to anyone other than God will always go to Dr. Brown. He gave me the greatest gift when he fixed my baby's heart and let me take him home.