kk.A Heart Repaired, A Life Transformed: Levi’s Battle and Victory Over Heart Defects.

Levi’s Heart Journey: A Story of Hope, Resilience, and Unwavering Love

From the moment we learned that Levi would be born with serious heart conditions, we were thrust into a world of uncertainty and fear. At just 16 weeks pregnant, we found out that Levi had been diagnosed with Dextrocardia, a condition where the heart is positioned on the right side of the chest instead of the left.

But that was just the beginning. Upon birth, we discovered that Levi also had Transposition of the Great Arteries (d-TGA), a couple of Ventricular Septal Defects (VSDs), Superior-Inferior Ventricles, and Pulmonary Stenosis. To say we were overwhelmed would be an understatement.

Levi, along with his identical twin brother Lane, were born prematurely at the University of Cincinnati Medical Center—seven weeks and two days early. Lane weighed 4 pounds, and Levi weighed just 3 pounds.

While Lane was stable enough to stay with us, Levi’s condition was too critical. He was transferred by ambulance to Cincinnati Children’s Hospital, where the medical team immediately began working to stabilize him. Levi was incredibly small, but against all odds, he was stable enough that his doctors decided to wait for his first surgery.

For those first few months of Levi’s life, our world was filled with more medical terms, tests, and procedures than we ever could have imagined. But it was also filled with moments of hope and awe as we watched Levi fight.

On August 19th, 2022, when Levi was just under three months old, he underwent his first open-heart surgery. The procedure was a success—Levi had a BT shunt placed, and his pulmonary artery was reconstructed. This surgery marked the first big step in his fight for life.

Levi spent a total of 102 days inpatient at Cincinnati Children’s Hospital, moving between the Cardiac Intensive Care Unit (CICU) and the step-down unit. During this time, we learned how strong Levi was. Every day was a battle, but every day, Levi grew stronger.

He faced setbacks, but he also experienced small victories, which were cause for celebration.

There were moments when we were scared, when we didn’t know if he would make it through, but we never lost hope. The incredible care of his medical team was a constant source of comfort for us, and with each passing day, we saw Levi’s resilience.

On December 29th, 2022, Levi underwent his first catheterization. The doctors needed to get a better look at his heart in preparation for his second, much more complex surgery. It was another step on his long road to recovery, and although it was difficult, it gave us the information needed for his next procedure.

On January 24th, 2023, Levi underwent his second open-heart surgery. This one was urgent and more complex, but once again, his surgical team worked tirelessly to give him the best chance.

Levi had a bi-ventricular repair, where they were able to patch his smaller VSDs, put in a conduit for his larger VSD, and use a Contegra conduit (made from cow tissue) to reconstruct his blood outflow. The surgery was a success, but it was also incredibly difficult for Levi’s tiny body to endure. After spending 24 days inpatient, he was finally cleared to go home.

Perhaps the most incredible part of Levi’s journey was the day he was taken off home oxygen after his second surgery. This was a milestone that we never thought we would see, and when it happened, our hearts swelled with joy and relief.

Levi had fought through so much already, and this was proof that he was making real progress. His road was still long, but this was a significant step forward.

Now, at 3 years old, Levi is doing amazing! Looking back on his journey, we are filled with a profound sense of gratitude and awe. He has been through more than most children will ever experience, yet he is strong, resilient, and full of life. We look at him today and are reminded of how far he has come. His spirit, strength, and determination have been nothing short of inspiring.

To celebrate his progress and to mark the anniversaries of his surgeries, we recently had Heartiversary photos taken. The images are a testament to how far Levi has come. They capture his joy, his strength, and the love that surrounds him.

Every milestone in Levi’s recovery has been a victory, and every victory is a reminder of the incredible care he received at Cincinnati Children’s Heart Institute.

We are forever grateful to the surgeons who performed Levi’s heart surgeries—Dr. Lehenbauer for both of his surgeries and Dr. Morales for assisting with the second surgery.

The Heart Institute’s team of experts, as well as the incredible staff in the CICU and ACCU, have been a constant source of support, providing the highest level of care for Levi. Their expertise, compassion, and unwavering dedication have been critical to his recovery.

As we reflect on Levi’s journey, we are reminded of how lucky we are to have had such an amazing team of doctors, nurses, and specialists by our side. But more than that, we are reminded of the power of love.

Levi’s strength has been fueled by the love of his family, his doctors, and the countless people who have supported us along the way. Through every surgery, every setback, and every success, love has been our constant guide.

Levi’s story is far from over. He still faces challenges, and there will be more hurdles to overcome, but with his strength, the love of his family, and the incredible care he’s receiving, we know he will continue to thrive.

We are filled with hope for his future, and we look forward to watching him grow into the amazing young person he is destined to be.

To all of those who have supported Levi along the way, we want to say thank you.

Your love, prayers, and encouragement have meant the world to us, and we are forever grateful. Levi’s journey has been one of miracles, and we know that the best is yet to come.

We continue to watch Levi with awe as he grows stronger each day, grateful for every precious moment we have with him. 

His heart has been repaired, but it is the love and resilience inside of him that continues to inspire us all.