Paxton was born in April. She was the picture of perfection! 7lbs 2 ounces 20 inches long and tons of dark hair!! Everything was going great until she failed the congenital heart screen. Her oxygen levels were hanging out between 86 and 88%. Doctor called the cardiologist and we took an ambulance ride to Lincoln, about an hour and a half away. There they did an echo and we found out she had a heart defect called pulmonary atresia and also a VSD and that it would need corrected with surgery. From there we took another ambulance ride to Omaha, about another hour away. We stayed at Children’s hospital for 10 days. On our third day there we got the diagnosis of 22q11.2 deletion syndrome! It was such a shock. I had never heard of such a thing.
After getting the diagnosis we researched everything we could about it. I had no idea that something so common is highly unheard of! Paxton had her first heart surgery at 3 months old and has another one coming up in the near future. She also has growth delays and is only 12 lbs. 9 ounces at 9 months old. She takes calcium supplements everyday due to her hypoparathyroidism. She works with PT and OT twice a month to help with strengthening. Other than that she is a healthy, happy baby girl!!