The start of the storm

In the blink of an eye, your life can change. Ours changed on December 10th, 2020.

At our 20wk appointment, the doctor saw that Levi’s heart seemed slightly enlarged appearing to be pushing his stomach out of place. They referred us to a specialist for a follow-up scan in two weeks. We left that appointment with some anxiety and worry but remained optimistic that everything would be okay.

Fast forward to Thursday, Dec 10th, the day of our appointment for our follow-up ultrasound. The ultrasound tech focused on the heart and stomach area. Phil and I chatted during the scan, not understanding anything she was looking at. She finished up and went to get the doctor. The doctor came into the room and delivered the news that no parent ever wants to hear. “Something is very seriously wrong with your baby.” In that moment, our world stopped spinning and it felt like all the air was taken out of my lungs. My heart didn’t just break, it shattered into a million pieces that I wasn’t sure would ever be put back together. The doctor continued on telling us it appeared Levi had a condition called Heterotaxy along with some significant abnormalities of his heart. We were told they had already contacted Children’s Hospital and we were to head straight there to meet with a pediatric cardiologist for a fetal echo. The drive down to Children’s was quiet as both Phil and I attempted to process the news we had just received. We arrived at Children’s and we were brought into the room for our fetal echo. I stared at the screen the whole time watching Levi’s heart beat and prayed that this had all been a mistake. I could feel him moving. I could feel his kicks. I could see him rolling around on the screen. He seemed perfectly healthy. After a very long fetal echo by both the ultrasound tech and pediatric cardiologist, we were brought into the family lounge. We waited for what felt like an eternity until the cardiologist came in to discuss what she saw. The next hour was overwhelming to say the least. She showed us a picture of a normal heart and then a picture she drew of our baby’s heart. She explained every detail of what made his heart so unique and walked us through what to expect. I think we only took in about 10% of what she told us. We sat there in shock that this was actually happening. We tried our best to understand what was being said but I think we both walked away knowing only one thing. Our little boy was going to have to fight for his life and we weren’t going to let him fight alone. We scheduled our follow-up appointment for the next week and walked out in silence to the car. It is this moment that I will never forget. We got in the car and Phil looked at me and said “That was the worst day of my life” and we both cried in silence for a very long time. Our life had changed. It would never be the same. From that moment going forward, things would be different. We had been thrust into a club that we didn’t ask to join. We had been shipped off to war even though we had never enlisted in the army. But we knew, without a doubt in our minds, that we would put on our armor and walk into to battle side by side ready to fight. There was simply no other choice.

The eye of the storm

Levi was born on April 5th at 3:12pm weighing 7lbs 2oz and measuring 19.5″ long. He was simply perfect in our eyes, except the reality was he was very sick. Levi was born with a long list of critical congenital heart defects including Heteortaxy Right Atrial Isomerism, AV Canal, AVSD (atrioventricular septal defect), DORV (double outlet right ventricle), TAPVR (total anomalous pulmonary venous return), pulmonary atresia and obstruction of his pulmonary veins. At just six hours old, we handed Levi over to the surgical team to undergo his first open heart surgery. Levi spent the next 8hrs in surgery fighting for his life. He was unable to come off of the heart and lung bypass machine and was placed on ECMO (life support). After 10 days, Levi’s heart and lungs were strong enough to make it off of ECMO but it came at an extreme cost. He had extremely poor perfusion and developed small little blood clots in his hands and feet. Levi’s hands and feet turned purple and began to die. He received painful daily dressing changes to both hands and feet as the team waited to see what parts his body might heal. At 72 days old, Levi want back to the cath lab to place a stent in his shunt to allow for better blood flow. Meanwhile, Levi’s hands and feet continued to deteriorate eventually exposing bone on his right heel. It was decided at 85 days old to take Levi back to the OR for a quadruple amputation in order to prevent the risk of infection with exposed bone. Less than 24hrs later, it was found that Levi had a 50% blockage of his shunt and was emergently taken back to the OR for his second open heart surgery. Levi recovered remarkably well from his second open heart surgery and his heart seemed to finally be stable.

Levi’s journey was filled with complications and setbacks including fevers, infections, chylous effusions and poor nutrition. We knew Levi’s heart was very sick but what we didn’t know was that he also had very sick lungs. Levi failed extubation five different times and after a multitude of tests was diagnosed with unknown chronic lung disease. He was not going to be able to breathe on his own and would require a trach. At exactly 30 days after his quadruple amputation, Levi had to go back to the OR a second time to revise three out of four of his amputations due to infection and poor healing. Once again Levi seemed to thrive after surgery. Five days before Levi passed, we had a care conference discussing how to progress Levi’s care. We knew we had a long journey ahead of us with placing a trach, future heart surgeries and revisions to his amputations but we were prepared to charge the storm head on.

The storm that broke us

On Monday, August 2nd, Levi gained his angel wings in the comfort of my arms with Phil right beside us. Our hearts shattered. Our world stopped spinning. It was a pain that words truly can’t describe. A physical pain that tore through us. Breaking us open and creating a wound so deep that no amount of time would ever heal. We were caught in a storm we didn’t see coming. It was relentless, growing stronger by the minute. It broke us.

Finding sunshine

We were broken. Lost in the storm and struggling to charge through it. That is when our herd showed up. They came together surrounding us with their love and strength, carrying and guiding us through the storm to the sunshine that awaited on the other side. Without their support, we would not have survived. We are so thankful we had our herd. We know there are so many families out there without one. It was very shortly after Levi’s passing that I knew his story wasn’t over. Levi was the most courageous person I’ve ever met. The amount of things he went through would have broken any adult I know but Levi fought on. He had a feisty little spirit that got him through the most challenging storms. He proved everyone wrong. No matter what the odds were. No matter how many people doubted him, he persevered. Levi made a bigger impact on so many lives in his 17 weeks than I could have ever imagined. He left a mark on the hearts of family, friends, nurses and doctors, reeling them in with his long eyelashes, chubby cheeks and double chin. Along with the great sadness that we all feel from missing Levi lives a universe of gratitude. Levi’s connection with all of us changed our lives. It is a honor to continue his legacy.

Photo Credit: LyndseyLew Photography