Heart Hero of the Month June 2022

Story by, ❤️Mom Melanie

Oftentimes it is hard to know where to start when sharing Lewis’s story. So much has happened to this little boy in his 3.5 years of life outside the womb. His story begins even before that, as we found out that something was not quite right at our 20-week ultrasound. What they believed to be a mass in his heart turned out to be a blood clot in place of where his left ventricle should have been. We found out that Lewis had Hypoplastic Left Heart Syndrome (HLHS), as his left ventricle did not develop. Throughout our pregnancy, it seemed we kept getting worse news. As it went on we were told that Lewis was categorized on the severe end of the HLHS spectrum, and he also had a restricted atrial septum. Depending on how restricted it was, he would need an immediate procedure to open it up after birth, before his first big heart surgery. We were scared and unsure of what was to come, but I just wanted to meet my sweet boy. 

On December 27th, 2018 at 7 a.m. Lewis was born at  Women’s Methodist hospital in Omaha. I was able to hold him briefly and get a few pictures. Then my husband John and Lewis were transported to Omaha Children’s Hospital & Medical Center. When they got there, they did an echocardiogram. His restricted atrial septum was worse than expected, and he needed to go to the catheterization lab for a balloon septostomy as soon as possible. I was transferred to the hospital right next to Children’s and got there just in time to see Lewis before he had to go down to the cath lab. The procedure took over 5 hours but was successful. Then he got to rest for a few days before having his first open-heart surgery, the Norwood Procedure. His Norwood was actually on our Wedding Anniversary.  He came back with an open chest, which they kept open for a few days before closing it. During the time his chest was open, we could see his heart beating and even some of his lungs. The science teacher in me thought it was kinda cool, but it being my son made it hard to look at. 

Lewis has an older sister named Lucy. She was two weeks away from turning 2 when Lewis was born. She was very excited to meet her younger brother! She would ask us every day how baby Lewis was doing and when would she get to come to meet him. She was able to see him, and we got to have our first family picture with all of us in it on New Year’s Eve! 

Lewis’s first hospital stay was a long recovery. He struggled with collapsed lungs and needed several bronchoscopies. He had a paralyzed left vocal cord and many feeding/vomiting issues. We were finally able to bring him home 47 days later!

Lewis was at home for 1 month before low oxygen saturations brought him back in and he ended up staying until his second heart surgery, the Glenn Procedure. Lewis got his Heart Hero Cape during this time, and we kept it with us on his bed for strength! They also sent one for Lucy, his sidekick. This recovery was much better and he was able to go home in just 10 days. Life was really great for a while. People always told us our journey would be like a rollercoaster with lots of ups and downs. They were right. I thought of it more as hills and valleys. A rollercoaster seemed too fast. During this time we were at the top of a great hill. Lewis was doing great and we had pretty much returned to a semi-normal life. Then we dropped off that hill.

In November 2019, Lewis went into severe heart failure. He had myocarditis which caused his heart failure. We are still unsure what caused the myocarditis and believe it was due to a virus infecting his heart muscle. Just a common cold virus that anyone can get, but it was very hard for his little body to handle. We were transferred to the heart failure team and began treatment and new medicines to help his heart. The first night we were back in the PICU with him was very hard on me. I was struggling to even pray. I kept wishing I had a rosary. John and I hardly got any sleep. The next morning when John was putting back some of the cushions on the bench/bed in our PICU room, he saw something silver glinting in the light under the cushion. He went to grab it and out he pulled out a rosary that had been stuck under the cushions. I felt in that moment that Jesus was with us, watching over Lewis and that no matter what was going to happen he would be with us through it all. 

Over the next two months, we talked about all of our options for Lewis. With myocarditis about ⅓ of the cases gets better, ⅓ get worse, and ⅓ stay the same, but that is for children with a healthy heart. No one was really sure how Lewis would handle it. He was evaluated for a heart transplant. It was determined that although he was a candidate for transplant, they wanted to hold off on listing him for one month to allow him to get some vaccines he would not be able to get after the transplant. During that month he kept improving, and he continued to improve enough that we did not end up listing him for a heart transplant. By September 2020,  his echocardiogram showed that his heart had improved so much that his left ventricle went from “severely depressed function” to “moderate to mild depressed function.” He basically was not considered “in heart failure” anymore! The doctors told us his heart was almost back to how he was before he had myocarditis! 

Lewis is 3 and a half years old (hard to believe it has been 3.5 years) and although he is no longer considered “in heart failure,” his heart squeeze is not as strong as it should be for someone with HLHS. He has frequent cardiology visits, about every 3-4 months, to keep a close eye on his heart squeeze. However, he is back on track to have his third heart surgery, the Fontan procedure, instead of having a heart transplant. He will have a cath procedure sometime this summer to help us decide if he is ready for the Fontan.  We know that Lewis’s heart defect is not “curable” and these surgeries only give him more time until he will need a transplant, but we are hoping that is much further in the future.

For the past year and a half he has been out of the hospital and home more than he ever has before.  He has a lot fewer medicines that have to be given a day, and we only see Cardiology, GI, feeding therapy, and speech therapy still. He still struggles with feeding, which has honestly been our biggest daily struggle throughout his entire journey. He has stopped vomiting (he used to vomit over 20x a day). We see a feeding therapist and GI who help us work on weaning off his tube feeds. He is currently taking about half of his calories orally, and half in his overnight feeds. However, he no longer has a GJ tube, just a G tube! His current favorite foods are cheeseburgers and M&Ms. He has chubby cheeks that jiggle when he runs and has the best laugh. He rides his strider bike, loves superheroes, and pretends to shoot webs like spiderman. He builds towers out of magnatiles with Lucy and they line up their cars to go through the “coffee line.”  He even became a big brother last October to Milo and takes his new role very seriously. He says, “I love you” and my heart melts. 

 During Lewis’s life, we have learned to cherish each and every day we have with him and celebrate all the small victories.

I have never cheered so loud as when he took his first bite of food. Heart Heroes has been with us throughout this journey providing support in the hospital and providing opportunities to connect with other heart families. His cape is a symbol of strength and endurance, a sign that this little boy can truly do anything!  I wish I could go back and tell myself after finding out about Lewis how much our lives would be changed for the better.  Yes, we will have to go through some really terrible and difficult days, but the joy of seeing that sweet boy’s face, hearing him say, “Mama,” and watching him walk/run around is all worth it.

I cannot imagine my life without him. He is the best gift we have ever been given, and we will be with him in his fight every day.