Jaxon was born September 13, 2017 at St. Clare Hospital in Fenton, Missouri. After birth the doctors and nurses noticed he was having trouble with his oxygen levels. They put him on a CPAP machine and took him to the special care nursery for overnight observation. They thought being a boy born a couple weeks early he was just having trouble getting acclimated to his new environment. The next morning a doctor from Cardinal Glennon Hospital was making rounds at St. Clare and doing an examination on Jax when Jaxon’s mom mentioned that Jaxon’s dad was born with a murmur and a whole in his heart (VSD). The doctor suggested transporting our 1 day old baby from St. Clare to Cardinal Glennon so he could be further checked out. Once arriving at Cardinal Glennon hospital Jaxon was admitted to the NICU. After a few hours in the NICU and a few tests the doctors came in and told us that Jaxon wasn’t just having problems acclimating an in fact he was born with a birth defect. He was born with a Congenital Heart Defect (CHD). Jaxon was born with Tetralogy of Fallot with Pulmonary Atresiais is a more severe form of TOF. It’s a congenital condition, which means it’s something a baby is born with. Babies who have TOF with pulmonary atresia have five heart abnormalities: Overriding aorta: This means the aorta is moved toward the right side of heart, just over the VSD. Thickened right ventricle. The right ventricle becomes thicker than normal from pumping blood against resistance. Complete pulmonary obstruction. In TOF, the pulmonary valve is narrowed, but in children with TOF with pulmonary atresia, there is no pulmonary valve at all to connect the right ventricle to the lungs. This means blood must find its way to the lungs through other, smaller arteries. Abnormal pulmonary arteries. These arteries may develop abnormally to help move blood to the lungs, but this can vary widely from child to child. In some children, they’re essentially normal, except for the fact that they are connected to the aorta rather than to the right ventricle. These abnormal pulmonary arteries are referred to as major aortopulmonary collateral arteries (MAPCAs).Ventricular septal defect (VSD) Ventricular Septal Defect (VSD) There is a hole between the two bottom chambers (ventricles) of the heart. This is usually a single, large hole. On September 20, 2017, Jaxon had his first surgery. It was an open heart surgery to place a PICC line and place a shunt in his heart. After this surgery the doctors were baffled a bit because Jaxon was struggling with blood flow. He had too much blood pumping through his body. They ended up taking Jaxon for his second surgery of his life. They did a cardiac cath to get a better plan of what was going on with Jaxon’s heart. Then on September 28, 2018, daddy’s birthday Jaxon went for his third surgery, second open heart surgery. Jaxon had a thoracotomy and they closed a collateral on his aorta in hopes to shutoff some of the blood flow to his body so he could start progressing towards home. Jaxon spent from September 13, 2017 to October 11, 2017 between two hospitals and mom and dad were there every moment of everyday. Jaxon had a couple episodes after going home but everything turned out okay. Then on April 10, 2018, we met with the surgeons to go over “the Plan” for Jaxon’s next surgery. Dr. Fiore went over a list of 5 things he had to fix and because Jaxon had a collateral the doctor had to fix an additional part of his heart which could had required them not to be able to close his chest for two days because the surgery was going to be so extensive. May 9, 2018, after an unsuccessful attempt on the 8th Jaxon had his “full” repair; which, was his fourth surgery and third open heart surgery. Hopefully and I pray and knock on wood that we won’t see another hospital until Jaxon is between the ages of 5-7. We’ll see.