Articles and Updates from Phoenix Children's
This blog was written by Chelsea, a member and Chair for the Heart Patient and Family Advisory Council (PFAC).
Our lives were turned upside down when our baby was 23 weeks new in my womb.
After many doctor’s visits and ultrasounds, we had a diagnosis: Jaxton was born full term with a complete atrioventricular septal defect (AVSD). A complete AVSD occurs when there is a large hole in the center of the heart, which allows blood to flow between all four chambers of the heart.
We were so fortunate that after 16 days in the NICU, Jaxton got to come home to grow until his surgery date. It almost felt like life was going to be normal. Jaxton was nursing and only on a few medications. A little pale, but he spent most of his hours being loved on by his big sister Charlie, and his dad continued to work like normal. We had a false sense of what life would be like as a heart family.
When Jaxton was 4 months, our cardiologist, Dr. Byron Garn, and the team decided it was time to get our boy's heart fixed. Jaxton went into his first open heart surgery on Oct. 10, 2017. Our lives would never be the same.
From what I understood at the time, my son was supposed to stay at Phoenix Children’s for 10 to 14 days after surgery. Mr. Jaxton had other plans. We stayed in the hospital for the entire holiday season that year. Halloween passed, then Thanksgiving, and our boy was struggling to breathe, eat and sleep. It took a while, and then we learned that Jaxton's repaired valve was leaking too much for his body to handle. He needed an intervention. Not just any regular heart surgery but one that had never been done in Arizona before.
Of course, this was terrifying news. Everyone on Facebook told me to head to Boston, and I looked into second opinions. However, with Dr. Velez's help and kindness, my "mom gut" told me that Dr. Velez was the one who knew my boy's heart. We needed to stay at Phoenix Children’s. With Christmas around the corner, I couldn't fly across the country alone – especially with Jaxton in this condition. So, we stayed in Phoenix, and I couldn't be more grateful.
On Dec. 7, 2017, Jaxton and Dr. Velez entered the operation room early in the morning and didn't come out until 7 or 8 p.m. Dr. Velez looked exhausted but proud. He had done it! The first-ever MELODY valve in the mitral position in Arizona, and it worked beautifully!
Then came a long recovery and Christmas in the hospital. It was a tough but amazing experience. Ignite Hope happened the day after that surgery. We now attend Ignite Hope every year, and I cry every single time we turn the corner and see the lights in the windows. I know what it feels like to be inside.
Since that first Christmas together, Jaxton has had a g-tube placed, a pacemaker implanted, a few cardiac catheterizations and his valve dilated. Then in September 2020, his valve was replaced – open heart surgery #3.
As you can see, Phoenix Children's is our home away from home. It's deeper than medical professionals: It's family.
I currently chair the Heart Center Patient Family Advisory Council to give back and try to make a difference going forward. Our family began a non-profit called Jaxton's Heart Warriors that hosts a golf tournament annually and has raised more than $75,000 for the Cardiovascular Intensive Care Unit (CVICU).
Jaxton is 4 years old now. He takes one medication, has cardiology appointments every six months, and has – what I call – his “electrician appointment” biannually. He also loves to drive his big sister crazy. He loves to make everyone he meets smile and laugh, and he talks about Jesus daily. He wants to be an athlete and a "cooker." He's our silly little monkey.
We have so many friends that didn't get to keep their warriors. We hold our children tight each day in gratitude for what we have. Who knows what surgeries Jaxton's future holds. But we know one thing for sure: Phoenix Children's has it covered.