Austin was born at 39 weeks gestation with a previously undiagnosed heart defect.  He was sleepy and unable to latch on for breastfeeding, he also had a noticeable heart murmur.  Due to lack of energy and poor feeding, Austin was jaundice and needed to stay in the NICU for a couple of days to receive phototherapy and get his blood sugars corrected.  On his second day of life he had his first echocardiogram that showed how special his heart was.  We were so worried about him because of some initial misinformation, that his cardiologist made a special visit to update us on his condition.  His original diagnosis was multiple ventricular septal defects, and the plan would be to close them with a patch at 1 year old.  At 4 months of age we began noticing he wasn't moving the right side of his body appropriately and took him to a neurologist where an MRI showed he had evidence of an old brain bleed in his cerebellum which had either occurred in the womb or shortly after birth.  Several ekg's and echocardiograms later, due to poor weight gain, Austin had his first major surgery to place a pulmonary artery band to reduce the workload on his heart.  It was after this surgery and his first heart catheterization that we learned he had what is called a double outlet right ventricle which meant one of his bigger septal defects was right under his aortic outlet valve and could not be closed with a patch without losing the pacing center which would require him to have a pacemaker and place him at higher risk of needing a heart transplant later in life.  After discussing with multiple cardiac surgery teams in various states, his cardiac team decided the best approach for him would be a single ventricle repair.  This repair is known as the Glenn/Fontane procedure and is done in 2 stages, both open heart surgeries, the first of which would occur at 1 year of age.  For his first year of life, Austin had PT and OT to help him improve functioning on his right side and he also wore a helmet for tortecullis, and also needed feeding therapy.  The first stage of his repair went as well as could be expected, and once his pain was controlled, he made a quick recovery.  While he was still circulating mixed blood, so had that typical dusky tint of a heart kid, he gained enough energy to grow and by post op day 5 was home and crawling on all 4's like he had been doing it all along!  Over the next year his right sided weakness virtually disappeared!  Over the next few years he had many more ekg's and echocardiograms as well as 2 more cardiac catheterizations.  Just before his 4th birthday he had the second stage of his heart repair which would finally allow him to circulate fully oxgenated blood! This procedure was a little more complex and due to some common complications he was in the hospital for 3 weeks.  Although he still had oxygen/IV cords/and chest tubes, his typical stubborn attitude prevailed, more than once mom and the nurse staff was chasing behind him with equipment poles while he rode his tricycle around the unit!  Since that surgery he had a brief period on oxygen, 2 more cardiac caths and was on medication for blood pressure.  After his last catheterization this spring, we got the good news that he wouldn't need any more surgeries for 3 years and the only medicine he has to take is one baby aspirin a day!  Today he is a happy and thriving 5 year old that will be going to kindergarten in the fall.  He loves to play outside, kick soccer balls, and all things math!  We were so lucky to have the care and journey we did, and hope to raise money so that others can benifit from all the great work these special people do!  Without them we would not have our AWESOME boy!