Our Story

Leo was born at 33 weeks gestation along with his twin brother Derek at Children’s Hospital Colorado (CHCO) after a prenatal scan revealed that he had an abnormally small left ventricle, mitral valve and aorta. Leo had two heart surgeries in his first 6 weeks of life, one to repair his aorta and one to open up his mitral valve in hopes that he could make it long enough for...

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Updates

Summer 2021 Update

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Leo has had a somewhat eventful spring and summer. Beginning this past March, Leo had some concerning changes on his echocardiogram. Without a cause such as a virus,... Continue Reading »

Check-up Reports and Formula Change

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  Leo has had a big week of appointments! He had his check up in Denver and got a lot accomplished! First and foremost, he had a great... Continue Reading »

Surgeries 7&8: Pleurodesis/VAD Wound

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Once Leo got his heart transplant, the heart itself did very well and acted like a typical transplanted heart. Since it had been sitting on ice on the... Continue Reading »

Heart Transplant Day! (Surgery #6)

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The days following Leo's mechanical pleurodesis were terrifying and seemed hopeless at times. The lack of fluid leaking meant his body and lungs held onto it, as you... Continue Reading »

Surgery #5: Mechanical Pleurodesis

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Being put on a Ventricular Assist Device (VAD) is a major surgery, especially for an incredibly sick baby. Recovery was intense the first few days, but Leo's vital... Continue Reading »

ECMO to VAD Part 3: Surgery Day

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Walking into Leo's room the next morning was strange. My little baby boy, who I was reading his favorite book to just 24 hours earlier, was now completely... Continue Reading »

ECMO to VAD Part 2

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The day after finding out that Leo needed a heart transplant was long. Long because I knew my child's heart was barely functioning on its own. It was... Continue Reading »

Surgery #4: ECMO to VAD Part 1

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Before beginning to tell the story of Leo going from ECMO to VAD, let's rewind 5 days to March 28th. We had been discharged after his second admission... Continue Reading »

2nd Surgery: Mitral Valve Repair

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The wait between Leo's respiratory distress event and his second surgery was one of the longest weeks of my life (little did I know what lay ahead). Our... Continue Reading »