Fin’s life was a roller coaster from the very beginning—full of breathtaking highs and devastating lows.

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After years of trying to have a child, just as we were beginning to let go of the dream, Finian Summit Medeiros (aka Fin, Fini, Finnebago) came to us, and we were over the moon. Like most expecting parents, we imagined the life ahead—dad’s hiking & skiing buddy, mom's pride & joy and snuggle buddy—our perfect little soul. ​​

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But at our 20-week ultrasound, everything changed. A small irregularity in our baby's heart led to a referral, and then to a diagnosis that would change the course of our lives: Hypoplastic Left Heart Syndrome—HLHS—one of the most severe congenital heart defects (CHDs).

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There was a glimmer of hope in Boston, where doctors were pioneering in-utero heart surgery. While the world was shutting down due to COVID, we traveled there, and Fin underwent a delicate operation—surgery on a heart the size of a grape. It was technically successful, and for a moment, we let ourselves hope.

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But weeks later, we learned it hadn’t been enough. Fin would still be born with HLHS. And because our high-altitude home in Colorado posed too great a risk, we had to move. So, we packed what we could into two cars and drove back to Boston, determined to give Fin the best chance possible.

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Fin was scheduled to arrive via C-section on June 30, but in true Fin fashion, he made his entrance early, on June 28, on his own terms. After a quick hug and kiss from mom, he and dad were taken straight to the CICU—a place that would become home, a place where Fin would spend over 400 days of his life.

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The next day, he underwent his first open-heart surgery (the Norwood). Complications left his right diaphragm paralyzed, and he struggled to breathe on his own. But after weeks of effort, Fin pulled through—strong, stubborn, and resilient.

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After eighty-nine long days, we finally brought our boy home. Life was beautiful. It was full—just us and Fin (and Grandma, and our two dogs, Monte and Louie). We soaked up every second, shielding our miracle from any chance of COVID.

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Several months later, we went back for his second surgery (the "super-"Glenn). From the start, Fin had trouble breathing. No one could understand why—until one morning, he had a cardiac arrest, and we almost lost him. Miraculously, he survived without any side effects and even smiled at the doctor who came to check on him afterwards. That was Fin's way.

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Further tests revealed a heartbreaking truth: his left diaphragm had been paralyzed during the second surgery. He had another operation to reverse the "super-"Glenn, and we held out hope for any diaphragm function to return, but it never did... He would never breathe on his own again and would need 24/7 ventilator support... so back he went for another surgery, to have a tracheostomy placed.

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And because autonomous breathing was necessary for the next stage of HLHS surgeries, Fin was no longer eligible, meaning his life would likely be cut short.

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To say we were devastated would be an understatement. We spent weeks drowning in grief but, ultimately, we chose hope. We would explore every avenue possible to support Fin... from phrenic nerve repair to heart transplant... every option became a non-option... leading us to our only option—to choose joy. If we couldn’t give Fin a long life, we would give him the best life.

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Two hundred and ten days later, we left the hospital for the second time—this time with more equipment, more medication, more fear, and in need of more help. That’s when Karen, our night nurse (aka cruise ship director), came into our lives. Soon after, our day nurse, Amanda (aka Fin's BFF) joined us.

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Together, we became one big, blended family, further extended by their families. We celebrated holidays, traveled, and went on unforgettable adventures. Karen pushed us to say yes to life. Amanda made sure we did it safely. And Fin thrived.

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They say it takes a village to raise a child, but for Fin, it took a city. He had an incredible care team, led by an extraordinary cardiologist who went above and beyond, staying in close contact with us—essentially on call 24/7. Fin also had a devoted fan club and a community that loved him fiercely.

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He defied expectations at every turn—going to school, and on countless adventures... hiking, camping, bowling, horseback riding, sailing, sledding, skating with an entire hockey team, seeing Blippi (3 times!) and Sesame Street Live and the circus, hitting theme parks (Sesame Place, Santa's Village, Storyland) and even breweries—he even had a beer named after him! His life overflowed with love, laughter, and adventure.

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For two incredible years, Fin lived life to the fullest. It wasn't without its challenges, of course—there were numerous appointments, therapies, tune-ups and interventions... but life was relatively good.​ It was happy.

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Eventually, however, the medications that had kept his heart going began to wear on his kidneys, which worsened his heart's tenuous state. We started spending more time in the hospital, but we did our best to keep things fun and familiar. Karen and Amanda stood by our side, even if it meant going largely unpaid during Fin's frequent in-patient stays. Their love for Fin and us never wavered.

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