<div>Support Irie on Her Heart Journey
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<div>As the sun rose on September 11, 2023, we welcomed our second daughter, Irie Clare Gellis, into the world, marking the best day of our lives. A perfect 8.5 lbs with a head full of dirty blonde hair, she loved nursing, kisses from her big sister, Faith, and the feel on sunshine on her face. Irie's name was chosen months before her birth and means "<em>good vibes, gentle, all will be fine</em>". Her birth was witnessed by only Olivia and Al, at home, after a long 42 week pregnancy.
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<div>Olivia intuitively felt something was not quite right with her baby girl so she was taken to Sarasota Memorial Hospital on the evening of September 12.
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<div>That saved her life.
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<div>At the hospital, Irie was diagnosed with HLHS, a congenital heart condition also known as "half a heart." It was not visible during her anatomy scan in pregnancy so we were completely blindsided by the findings.
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<div>Our 40 -hour-old baby was quickly life flighted in a helicopter to All Children's in St Petersburg, FL where she spent the next 3 weeks undergoing multiple tests, catheter surgeries, intubations, and evaluations by dozens of doctors. The medical team at All Children's was originally hoping to take Irie on the typical path of HLHS reparative surgeries (Norwood, Glenn, Fontan procedures at 1 week, 5 months, and 3 years respectively), but they eventfully decided the safest route would be full heart transplant.
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<div>On October 4, Irie was again life flighted in a helicopter to one of the leading pediatric cardiac units in the country, UF Health Shands Hospital in Gainesville, FL.
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<div>On October 25, 2023 she was officially listed as 1A status on the pediatric heart transplant list.
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<div>Irie will soon have her first open heart surgery to connect her to a VAD called the "Berlin Heart" while we await the perfect donor heart to make it's way to her which is an average wait time of 6-9 months.
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<div>We are reaching out to friends and family for support during this time. Our family has made an emergency relocation from Sarasota to Gainesville where we will remain for a minimum of 2 years.
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<div>We have had to pause a majority of the projects we have been working on for clients in Sarasota, which means extremely limited income at the moment. Car payments, daily bills, and childcare for Faith are quickly dwindling our savings accounts.
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<div>Once discharged, Irie will need a combination of in-home therapies and care that will not be covered by insurance (Music therapy, play therapy, feeding therapy, craniosacral, chiropractic, etc...). We are determined to provide her with the best possible support to promote holistic healing of her body, mind, and soul. We would also like to get Faith enrolled in an age-appropriate play therapy to help her understand and process her own experience in having a medically sensitive sibling.
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<div>Our lives have made a drastic change since the arrival of our beautiful baby and while we wouldn't change one moment with her, it's been a very difficult transition. Instead of healing her body after birth, Olivia was running around cold hospitals, pumping breastmilk into a machine while speaking to dozens of doctors, and praying over her baby's paralyzed body. Instead of bonding with his newborn in a warm bed and cooking his special postpartum meals, Al was falling asleep while driving the car behind the helicopters to the next hospital, juggling hundreds of phone calls and emails to get specialized insurance, and praying over his baby's paralyzed body. Instead of snuggling her new baby sister who she was unbelievably excited to meet, Faith has been drawing pictures for Irie, exploring new local playgrounds with Daddy, and wiping "Mama sad tears" away.
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<div>We have been working tirelessly to provide Faith with a sense or normalcy and structure, keep our business in Sarasota afloat, and stay abreast the always changing medications, stats, and updates of Irie's condition.
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<div>All support is greatly welcomed, whether it be a financial contribution or a simple (yet powerful!!!) prayer for our baby.
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<div>Our faith has not wavered once. We have faith in Irie, our medical team, and the path we are all on.
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<div>We love Irie with all our hearts and feel grateful she chose us to be her family for this lifetime.
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<div>**********
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<div>Thank you for reading our story. There is so much more to come!
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<div>Irie will live a life of joy.
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<div>She will go to sleepovers, pet all the dogs, and read magical books. She will fall in love (hopefully a few times!), dance in the rain, and travel the world.
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<div>She will feel sunlight on her face.
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<div>*And So It Is.*
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<div>Resources to learn about Irie's condition and treatment plan:
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<div>HLHS: <a href="https://ufhealth.org/conditions-and-treatments/hypoplastic-left-heart-syndrome" target="_blank" rel="noreferrer noopener"><a href="https://ufhealth.org/conditions-and-treatments/hypoplastic-left-heart-syndrome" target="_blank" class="" rel="nofollow noopener noreferrer">https://ufhealth.org/conditions-and-treatments/hypoplastic-left-heart-syndrome</a></a>
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<div>Berlin Heart: <a href="https://www.berlinheart.de/en/patients-and-relatives/excorr-pediatric/" target="_blank" rel="noreferrer noopener"><a href="https://www.berlinheart.de/en/patients-and-relatives/excorr-pediatric/" target="_blank" class="" rel="nofollow noopener noreferrer">https://www.berlinheart.de/en/patients-and-relatives/excorr-pediatric/</a></a>
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<div>Heart Transplant: <a href="https://ufhealth.org/conditions-and-treatments/pediatric-heart-transplant" target="_blank" rel="noreferrer noopener"><a href="https://ufhealth.org/conditions-and-treatments/pediatric-heart-transplant" target="_blank" class="" rel="nofollow noopener noreferrer">https://ufhealth.org/conditions-and-treatments/pediatric-heart-transplant</a></a>
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Ryan Burke

Toshitada Morikawa

Jose Sandoval

Support Baby Irie on Her Heart Transplant Journey

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Support Baby Irie on Her Heart Transplant Journey

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