On December 5th, 2022, we went to our first MFM appointment because the ultrasound techs were having trouble getting images of Mavericks heart.
We went in feeling hopeful it was just the position the baby was laying in my belly and left absolutely heart broken and feeling lost on what to do.
We were not prepared to receive the news of Mavericks HLHS. We were set up with a pediatric cardiologist who performs echocardiograms on Maverick frequently during pregnancy and is still with him doing all of his testing today. Pregnancy was a roller coaster of emotions trying to prepare to have our first child be a medically complex child.
On March 17th, 2023, our little warrior made his appearance with seconds to spare on St. Patrick’s Day. We knew it was urgent for him to get to the NICU and get an echocardiogram immediately after birth and not long after, we were told he was being set up to be life flighted to the Children’s Hospital of Philadelphia. His diagnosis was changed from HLHS, to a mild form of HLHS with hypoplasia of the aortic arch and aortic valve stenosis. We arrived the next day when I was discharged and unfortunately could not stay in the room with him because of the ICU but stayed at the Ronald McDonald House.
On March 22nd, Maverick received his first life saving open heart surgery to correct the aortic arch and was in critical condition after. They left his chest open after surgery due to the pressure in his heart and after 3 days it was closed. His pressures went up, but he tolerated it well and they were hesitant to do any further surgery on him in his state. After 3 weeks of intensive care and recovery, we got the best news that he was well enough to go the step down unit and days later on his first Easter, we got to bring him home for the first time.
Maverick had a lot of work to do with learning how to eat again, gaining weight steadily and Brandon and I had a lot to learn about not only being first time parents, but being parents to a heart warrior.
His pediatrician and cardiologist continued to watch him extremely closely to monitor his weight gain.
After 3 months of being home, Maverick was re-admitted to the hospital for failure to thrive after losing 11 oz in less than a week and it was determined he needed another surgery. We were admitted at Geisinger in Danville and were transported by ambulance to CHOP where he would have a procedure done the next day on his aortic valve to relieve the pressure in his heart. Recovery was hard but he is so strong and 7 days later we were on our way back home.
He has been thriving since! He is learning so much and finally doing fantastic with his weight gain. We know there is a high chance of needing additional surgeries but we are hopeful it’s a few years at least before the next one.
Organizations like the Children’s Heart Foundation are the reason kids like Maverick have a fighting chance.
Help us raise donations for this foundation to continue their research to help kids born with CHD.
