Leilani Sol Heart Warrior

As many of you know Marissa just gave birth to our beautiful little girl, Leilani Sol at 3:49pm on Wednesday the 14th of March. What you may not know is that it’s been a rollercoaster of emotions ever since. Go ahead and name them (the emotions) and then multiply their strength 100 fold , and you will understand our mindset over the past month. So Leilani was born with a rare congenital heart defect known as total anomalous pulmonary venomous return (TAPVR). For those who do not want to google, it’s when the pulmonary veins coming from the lungs to the heart do not connect to the left atrium of the heart as they should, so the body makes another vein, (that’s where the word anomaly enters the equation) and instead dumps the oxygenated blood flowing from the lungs into the right atrium causing all kinds of problems, mainly to the lungs and if not caught in time the rest of the organs. After I cut the umbilical and Marissa held Leilani to her chest for about 30 seconds, one of the nurses did not like her color and took her right away to be examined by the respiratory doctor on call. The respiratory doc had a feeling it might be heart related and called a cardiologist near by. We were very fortunate that the experienced crew at Jupiter Medical Center caught this and the cardiologist diagnosed it in time to get us to the right place. So 6 hours after the delivery Leilani and I took our very first, (and preferably only) Life Flight helicopter ride to the Nicklaus Childrens Hospital in Miami. They confirmed that diagnosis and prepped her immediately for open heart surgery. I was told it should be approximately a 5 hour procedure. It turned out to be just over 7 hours. The reason for that extra 2 hours was because the surgeon that was charged with this difficult task found 3 other defects in Leilani’s heart. 2 separate holes, one in the atrium and 1 in the ventricle, plus she had a cleft mitral valve. So she repaired those as well. She told me that she has seen all of those defects before but never all at once. Of course our little girl put these guys to the test, (I have no idea where she got that behavior). In summation, this place is amazing, and everyone that works here, from the heart surgeon who performed Leilani’s procedure down to the most experienced nurses I have ever met, are all top notch and we are forever grateful to them. All that being said, our plan is to launch this Go Fund Me to take care of all of our medical costs down to the exact dollar amount and anything that we receive in excess will go right into the Nicklaus Children’s Foundation. I’m not going to sugar coat it, I feel as though I owe these folks my life. We will take anything from pennies to thousands. If that range of amounts is not in your budget, then we ask only your prayers, thoughts, energy and Love. Thank you in advance. Love, Leilani Marissa and me ❤️

Donations

  • Anonymous 
    • $1,000 
    • 17 mos
  • Mark VanBuren  
    • $100 
    • 17 mos
  • Marguerite Mumma 
    • $50 
    • 17 mos
  • Dangerfield Heather Gibbs 
    • $10 
    • 21 mos
  • Anonymous 
    • $100 
    • 23 mos
See all

Organizer

Ethan Huemmer 
Organizer
North Palm Beach, FL
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