My Heart Belongs to Riley: Kaleena’s Story
When others give to Riley, I feel excited and relieved, because I know that some family much like ours is going to receive quite a special gift. That gift is hope and happiness that comes from healing hands at Riley.
That’s why we are honored to be able to encourage others to make gifts to Riley this month through the My Heart Belongs to Riley campaign.
(Click here to make a gift, and fill out the “tribute gift” section to honor a special Riley kid or caregiver.)
Our Riley journey began after we were blessed with our third daughter, who we named Kaleena Joy. Kaleena is Hawaiian for "pure," and we knew she would daily remind us that she is Pure Joy!
On the day she was born, we learned Kaleena had Down syndrome. Six days later we went from Columbus Regional Hospital to Riley Hospital for Children’s outpatient center. We met cardiologist Dr. Timothy Cordes, who became an integral mainstay for us, and Kaleena’s heart guide.
At six months old, Kaleena was blessed to have Riley heart surgeon John Brown, M.D., essentially reconstruct her heart with the assistance of Mark Rodefeld, M.D., in a seven-hour surgery. You see, Kaleena is an overachiever! She had not one, but two major heart defects. She had an AV repair done, which means that they rebuilt 3 out of 4 of the chambers of her heart. They did this with her own tissue from around her heart instead of using a synthetic material - a technique developed by Dr. Brown and now used at hospitals across the country.
He also repaired valves in her heart and what is called tetralogy of fallot, which is four minor defects in her heart. Dr. Brown said he enjoys the challenge of this surgery, however, there is no other cardiac surgery that is more difficult.
Kaleena spent six weeks in the ICU and two in the heart center. Each day we encountered the love of a medical team all who were guiding Kaleena's recovery with professionalism, experience, confidence, and compassion!
We appreciated intensivists, including Dr. Alex Rotta, who coordinated her ICU Care, masterfully handling complications with a calming presence. A respiratory therapist would work Kaleena over 24/7, helping revive her collapsed lungs. A pharmacist navigated her 18 prescriptions. A dietician developed a formula strategy that preserved a delicate balance between the medicines and the fluids in her system. Cardiologists monitored how Kaleena’s heart and lungs were reacting to the surgery. We were blessed with phenomenal nurses in the ICU who coached us through the roller coaster ride of recovery. They were so special to us! The heart center was equally impressive. They gave us the knowledge, hands on training, and confidence to bring Kaleena home with a feeding pump and seven kinds of medicines taken round the clock. After we were discharged, Kaleena transitioned off her feeding tube in four months with the weekly guidance of a Riley feeding specialist, Sara Parker.
Every day, our Riley team was gracious enough to answer all of our questions. They gained our trust, for the very life of our Kaleena Joy was in their hands and their hearts too. They loved her through it all!
Today, Kaleena is 3 years old and in preschool. She enjoys sign language; playing on her iPad; silly faces; music and dancing; school; bath time; playing with her big sisters; and meeting new people. Her heart is still “under construction” and will need surgery again in the future, but overall she is doing well. Kaleena spreads JOY – people can’t help but smile as they interact with her.
Riley not only gives us hope, but gives our Kaleena the means and the heart to live up to her name: pure joy!
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