Bryce

An HLHS Warrior

From the very beginning, we knew we had a special little guy. After 8 years of infertility, 2 specialists, many medications, and giving up, we were surprised by our little warrior. Due to a family history of heart conditions, it was advised that we see a specialist for an ultrasound and fetal echo. I will never forget hearing the difference in the sound of his heart during that echo. In that moment, I knew something was not right. We were taken to another room and informed that our little Bryce had a heart condition and we would need to transfer care to a larger hospital. Our world was spinning in that moment.

A few weeks later, we met with the Fetal Health team at Children's Mercy. It was confirmed that Bryce had HLHS. The team reviewed the info and came up with a plan that best suited Bryce; it included the 3 standard surgeries. Bryce was born on February 7th and had his Norwood surgery at 3 days old. He had his fair share of ups and downs. I will never forget holding him for the first time after surgery; it was the best birthday present I could ever ask for!

We finally made it to the step-down unit. Bryce was doing well, but was not drinking as much as he needed. It was decided that he would need a G-tube. That surgery went well, and he was sent back to the floor.

A few days later, Bryce started having blood in his stool. After X-rays were completed, he was placed on NEC precautions. 6 days into the precautions, he began having seizures. Bryce had a stroke and needed to go back to the CICU floor for treatment to stop the seizures. He was placed on a blood thinner and 2 seizure medicines.

Bryce has had his Glenn surgery and is doing wonderfully. He has come off of all of his medications except 2! He went on his first vacation to the beach this summer, and it was a wonderful time!