Valentines with heart

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Fearless. Loyal. Supportive. Kind. Compassionate. Advocate. Loving. Inclusive. Motivated. Deserving. Fighter of the good fight.

These are all things I can say about my friend Colleen. From the day I met her my freshman year at Belmont University, she proved to love me fiercely. It was recruitment week and I was still trying to find my place in college. I was majoring in art, which I had never done in high school (that’s a whole other story), and while I really loved the people I was meeting in art class, I felt there was a great group of friends out there that I hadn’t met yet. I was hesitant to join a sorority because, as my friends at Alabama and Auburn can attest to, it’s a completely different thing at a state school than it is at Belmont. No greek housing, no tailgating, no football, etc. But at Belmont, if you aren’t in music, it’s really hard to make friends. So I thought what the hell. I’ll see what it’s about. And I don’t know where I’d be today if I hadn’t taken that chance.

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I never would have met this girl who sat in the parking lot of our apartment building with her arms around me when I got a phone call with bad news. There would have been fewer porch hangs in pajamas or runs to Wendy’s late at night after going out. With every bad relationship we learned from, or friendship that crumbled, she was there. She recruited me not just in the sisterhood of Alpha Sigma Tau, but as a friend for life.

Fast forward to ten years later. We’re both married and she’s expecting. You know the excitement that comes from each ultrasound but also the fear that is in the back of your mind that something could be wrong at any time? Colleen and Dan were told their son was showing signs of HLHS (Hypoplastic Left Heart Syndrome). This means that the left ventricle of his heart did not fully form. They went through further testing and received the diagnosis. Did you know 1 in 100 kids are diagnosed with a congenital heart defect? Colleen is a mental health advocate, passionate about research and fearless in asking questions. Dan is one of the most patient and loving men I’ve ever met. All qualities of making a great team. Their focus immediately turned to being the best advocate for their son. They made a plan to love, care & prepare for him.

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I was honored to be there with friends and family as Paul Lucas Melchiorre was born. He was born at Vanderbilt & immediately taken for his first heart surgery next door at Vanderbilt Children’s Hospital. Such a happy day but also filled with a natural anxiety of heart surgery for someone less than a few hours old. Paul fought through it as he still does today, a heart warrior from day one.

Paul has since had his Glen and Fontan surgeries. His Fontan procedure was performed at The Children’s Hospital of Philadelphia (CHOP). This procedure establishes a normal direction of blood flow for patients. Even though these procedures have created a more functional life for some, these warriors sometimes have complications such as clots, liver complications and plastic bronchitis.

For Paul, this procedure presented an underlying lymphatic issue. As a result, he began to develop plastic bronchitis.

The Children’s Hospital of Philadelphia explains plastic bronchitis as a lymphatic flow disorder that causes severe respiratory issues. In children with plastic bronchitis, lymphatic fluid builds in the airways and forms rubbery or caulk-like plugs (known as casts). These casts block the airways, making it difficult to breathe. This complication is a life threatening one, and their medical team rushed to look at their options.

CHOP has an amazing resource called the Single Ventricle Survivorship Program. You can read more about it HERE. Their team is working to develop treatments to help these heart warriors be survivors, and increase their quality of life. Paul’s medical team posed the possibility of an experimental procedure which would attempt to close the holes which were draining lymphatic fluid into his lungs. Paul was only one of seven in the world to undergo this procedure. In most of their patients, they were able to find one or two sources of leakage. In Paul there were thousands. They had never seen it before. Rather than plug individual holes with a substance called lipidil, they sprayed his entire lung beds with it. It was able to temporarily assist Paul in breathing and get him stable.

Unfortunately, after returning to Nashville, Paul began developing casts again. Even after being life-flighted to CHOP for a second procedure, he is now back in Nashville and has been listed as 1A status for a heart transplant. He will stay in the hospital until his gift of life arrives, which is bittersweet. As they wait for a new heart, they pray for the donor family and their grief as well.

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Not only is Paul a warrior, but he’s a big brother to baby Georgia.

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He just turned three and is a lover of Bubble Guppies and Sesame Street. His laugh and smile are contagious. I mean, just look at this handsome face:

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So if you didn’t land here on this blog post because you saw our fundraiser on social media, you might be wondering why we’re sharing this story. Through February 14th, we’re donating 50% of the proceeds from a special Valentines box to CHOP (The Children’s Hospital of Philadelphia) and specifically their Single Ventricle Survival Program (Click HERE to purchase).

 

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Because of their work, more children like Paul will have a team who is advocating for them and their quality of life. Every angel baby and heart warrior deserves for us to fight for solutions that could save lives. Your purchase will help contribute to their efforts. And if you don’t need Valentines this year, please consider a direct gift to this program by clicking HERE.

* A big thanks to Paul’s family & photographer Suha Dabit for allowing us to post these beautiful family photos. 

 

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