Jack, born 2008Our first baby, Jack, was born at 9:00pm on June 27, 2008 at 37 weeks, weighing in at 8lbs. 9 oz. and appeared to be perfectly healthy. My husband and I had no reason to suspect otherwise. I had an uneventful pregnancy and very easy delivery.
Less than 72 hours later, after being packed, showered and ready for discharge home from the hospital, our world was turned upside down. The pediatrician had heard a murmur when listening to Jack's heart, following a routine check, so he decided to have a cardiologist take a quick look before we left the hospital. The next moment will never leave my mind. I remember the nurse taking Jack for a quick check which seemed forever. The next 10-15 minutes seemed to go on for hours. Finally the cardiologist came into our room, but without Jack. He sat my husband and me down and proceeded to draw a heart on a piece of paper. We were told that Jack had Transposition of the Great Arteries (TGA) and a very large Ventricular Septal Defect (VSD). My husband and I thought our lives were over. Jack was taken to the NICU for observation. After three days in the NICU, Jack was ready to come home free of any wires or monitors and with the instructions to watch for him to turn blue. My husband and I were scared to death about caring for this precious new baby and the life he was going to live.
Three months later, while still dealing with all the unexpected news about Jack's heart, we decided to fly to Boston Children's Hospital for a second opinion. It was at Boston that Jack was diagnosed with L-TGA, Dextrocardia and Double Inlet Left Ventricle (DILV) along with the already known VSD and Pulmonary Stenosis.
Despite all of this, Jack is thriving. His stats are around 92%, is 95% for his height and 75% for his weight. We are so fortunate and blessed that he shows no outward signs of an imperfect heart. We see the cardiologist regularly and monitor his oxygen saturation. While we know we have a long road ahead of us that includes open-heart surgery, Glenn and Fontan, which will be performed at Boston Children's Hospital probably when he is two years old. We look forward to each and every day with our strong, little HERO. He has taught us to live each day as our last instead of worrying about the future.
Story by Jack's mom, Heather, Alabama
Kira, born 2002