Story by, Heart Mom Leslee

We found out Alexis’s heart was “special” during our 24 week anatomy scan. We were sent to a pediatric cardiologist and it was confirmed: our baby girl would be born with half a heart, a condition known as Hypoplastic Left Heart Syndome (HLHS). HLHS requires a minimum of 3 open heart surgeries to optimize the circulatory system, so we
knew we had a long road ahead of us.

Lexi’s dad, 2 year old brother, and me (mom) traveled to Denver for her birth and two days later Lexi had her first open heart surgery. Nobody should have to see their baby that way, but we knew without the surgery she would die. Even with the surgery, she was only given a 75% chance of making it to age 1. Aside from the heart issues, the first surgery caused a paralyzed vocal cord, meaning she couldn’t swallow safely, resulting in a g-tube. After 4 weeks in the hospital and one more in Denver for follow-up appointments, we were finally released to go home.

At 3 months old, Lexi had an episode at home that caused her oxygen levels to plummet to 65% and her heart rate to increase to 220 bpm. We were flown to Denver that night and she had a heart cath the following day. It was decided that she was big enough and it was time for heart surgery number 2. That happened a week later and we spent another week in the hospital.

Once home and well recovered, we began the process of teaching Lexi how to eat orally so she could get the g-tube out and eat like a normal baby. The process of getting her weaned from the tube was more strenuous and more tearfilled than either of her previous surgeries. But we knew it was for her benefit to teach her how to interact normally with food. At 9 months old, she was eating everything by mouth and her g-tube stoma was closed a couple of days after her 1st birthday (We were told she would probably have a g-tube until she was 4 years old).

At around 3 years old, Lexi got a clot in her left ventricle (the small side) and was put on coumadin. She had to be in the hospital for a week when they found it so we could get the blood-thinning levels just right. She has been on coumadin ever since.

At 3 months shy of her 4th birthday, we went back to Denver for her 3rd open heart surgery. This one was
excruciating as she was old enough to understand what was going on, and she was not happy about it! She had a
couple complications causing her chest tubes to drain out a liter of fluid from around her lungs every day for two weeks. It was more than the doctors had ever seen out of a kid her size. They finally got the medications to the right dose, after a cath to make sure the pressures were ok and the surgery she just had was successful. After exactly a month in the hospital she came home, yet again.

Lexi is just now celebrating her 6th birthday (we were told she had a 50% chance of making it to age 5) and we could not be more proud of her! She loves having a “special heart” and she tells everyone she meets about it and how God uses her special heart to teach people about Him. She’s our miracle and her brothers (one older, one younger) absolutely adore her. She is thriving in school and we can’t wait to see what the future holds for her. She still takes a liquid medicine 3 times a day for the fluid that accumulates in her lungs without it, coumadin pills and an arrhythmia pill twice a day. She is currently battling headaches, too, but that doesn’t stop her from hiking when we go to the mountains, swimming in our pool, and playing hard with her brothers. She’s amazing and I can’t believe I get to be
her mom and have a front seat to watch the wonderful child she is growing up to be.