I made his special Valentine's Day Open Heart Surgery quilt. I made a felt appliqué of the baby heart character from his pre-op book.
Baby Henry the Fifth was born with a heart defect called Tetralogy of Fallot. The defect was found on his second day of life when Dr. Robertson heard a murmur. When we left the hospital after he was born we went directly to the pediatric cardiology specialist 2 hours away near Tacoma for a test. Dr. Puntel, at Madegan Army hospital, told us the news. Baby Henry would need open heart surgery to repair the defect. The Tetralogy includes a Ventrical Septal Defect, a shifted aorta, pulmonary valve stenosis, and hypertrophy of the right ventricle. Babies with Tetralogy of Fallot generally turn blue when upset or sick. Fortunately Henry was what they called a Pink Tet.
In December after Henry was born, the Navy moved us to Norfolk VA. The surgery was scheduled at the civilian hospital Children's Hospital of the Kings Daughters. Our surgeon was Dr. Gilbert and Brandie was our specialist nurse. He had surgery on Valentine's Day 2008 - a perfect day to repair a broken heart.
After surgery, Henry developed an arrhythmia called Heart Block. This extended our stay for 10 days while they waited for the heart block to resolve. It didn't. So, on February 26, baby Henry had a pacemaker placed. It is just below his sternum since he is too small to have it in his chest. The pacemaker does just that- it paces the heart. It is not a defibrillator. That means that the pacemaker detects Henry's own heart beat. If the heart skips a beat or doesn't beat in time, the pacemaker fires and causes a single beat. Henry's heart is not any any more risk of stopping than a normal heart. (A defibrillator is for folks whose hearts might stop and need a kick start.)
MommyHenry 4 and Henry 5.
The good news, is that on our recent check up they discovered that the heart block has started to resolve, meaning that his heart is beating normally some of the time and the pacer doesn't need to fire. This is an unusual development and leaves us very hopeful. He may continue to get better and not need the pacemaker or things may stay the same. We are happy either way.
This whole process has been amazing. We are so grateful to have had an incredible surgeon and amazing staff at the hospital. I am blown away at what was able to be be done to make my baby healthy and happy.