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We run for Emmett. Born September 2017 with Hypoplastic Left Heart Syndrome (HLHS) she has fought bravely through two open-heart surgeries, endured countless significant procedures, and spent over a third of her 18-month life in the hospital. While Emmett still has a long road ahead, Levine Children’s Hospital and The HEARTest Yard have been there since day-1 to guide and support her throughout this journey and continue to do so through the in-home skilled nursing program and newly launched Neurodevelopmental Clinic. We cherish the community The HEARTest Yard has built and celebrate the confidence it has cultivated in families as they navigate challenging chapters with medically fragile children.
We run for Hank…. our nearly five-year-old son, who was diagnosed shortly after birth with Tetralogy of Fallot. We run because we expect nothing but endless opportunities for him, and do not allow him to be defined by his diagnosis. We run because the initiatives funded by the Heartest Yard Foundation are truly life-changing for Hank, and other children with congenital heart defects. The Heartest Yard Program was vital in allowing us the confidence to care for Hank appropriately at home. The Heartest Yard has brought awareness of CHD to our community, and it gives a platform for our friends and family to support our efforts to improve the quality of Hank’s life, and for those like him with CHD. We run because we are forever grateful to this foundation for giving Hank the opportunity to thrive.
Our son, Brantley Douglas Register, was born on February 3, 2014 with an undiagnosed condition known as Hypoplastic Left Heart Syndrome (HLHS). Shortly after Brantley was born, his hands and feet started turning blue. The nurses quickly checked his pulse oximetry and realized immediately that there was an issue as his readings was dangerously low. After being diagnosed with HLHS, he was transferred to Levine Children’s Hospital that evening. Less than 24 hours after being born, Brantley received lifesaving open-heart surgery. Before going home for the first time, Brantley spent a total of 63 days in the CVICU and 74 days total at Levine Children’s Hospital.
During our stay, we met Greg and Kara Olsen and their son TJ who also has HLHS. Greg and Kara shared their journey with TJ’s special heart, provided lots of support and encouragement, as well as told us about their foundation The HEARTest Yard. We found out that The HEARTest Yard provides in-home nursing care for children like Brantley during the time between their first and second heart surgeries, typically 6 months. The time between the first and second surgeries is critical, and these children basically live in a bubble. It is crucial to their survival that they not develop any illness, that their pulse ox and weight are checked daily, and that they follow a strict feeding protocol. The HEARTest Yard provides nurses who are trained on how to take care of patients with HLHS, who can watch for the warning signs that something is wrong, and basically provide a peace of mind for parents of these children. Many times private insurance will not approve in-home nursing care and most families are unable to afford the cost on their own. This was one of the reasons Greg and Kara told us that they founded The HEARTest Yard.
Brantley was a recipient of in-home nursing care through The HEARTest Yard. As parents of a child with a congenital heart defect that has the highest mortality rate, we were relieved, ecstatic and overwhelmed with gratitude that such a foundation exists to help families like us. When we went to the hospital to have Brantley, we thought we were having a normal baby. One can only imagine the state of shock that we were in when we found out about Brantley’s special heart. So many emotions run through your head when faced with a situation like we were in. What do we do? What will happen next? Will he be ok? What will we need to do to take care of him? How will we be able to afford to take care of him? Will one of us need to quit our jobs? The answer to our questions was basically The HEARTest Yard.
In 2014 and 2017, Brantley returned to Levine Children’s Hospital for his second and third heart surgeries. We absolutely feel that the nursing care that Brantley received during the first and second surgeries helped provide the best possible outcome that we could imagine. Without the nursing care provided by The HEARTest Yard, we feel that Brantley would not be the thriving, healthy FIVE year old that he is!
The HEARTest Yard has been a part of our family’s heart journey since the day of diagnosis. At Nora’s 20 week anatomy scan, we learned she would be born with Hypoplastic Left Heart Syndrome, a condition we had never heard of before. Searching the internet for information, we came across the Olsens’ story and their foundation to support heart families like us. Seeing they had a 5K just a few weeks later, we quickly signed up. The 5K was our introduction to the heart community and the positivity of the day was a bright spot for us while we processed this life changing news.
When Nora arrived that fall, she spent several months in the hospital recovering from two open heart surgeries and some significant complications. We came home with nursing support provided by the HEARTest Yard, allowing us to return to work with peace of mind about Nora’s care.
Our family and friends returned to the 5K the following May, this time with Nora in tow, and celebrated everything that she had overcome the previous year. Nora has a long journey ahead, but she is now 18 months old, walking, talking and keeping up with her older sister thanks in part to the support we received from Levine and the HEARTest Yard.