I am so excited for my sixth year at the Courage Classic riding for the Cardiac Climbers. Although I'm no longer working on the Cardiac Unit and work in the emergency department, I'm forever a cardiac peds nurse at heart and will be dedicating my ride in memory and honor of Everly Grace:
Everly Grace Snowden
Hypoplastic Left Heart Syndrome (HLHS)
1/3/21-7/2/24
Everly Grace Snowden was born on January 3rd, 2021 with Hypoplastic Left Heart Syndrome. She was inpatient at Children’s Hospital Colorado for 6.5 weeks when she was born. During that time, she had her first open heart surgery, the Norwood, at 4 days old. She also endured a double uterine hernia surgery, gallstone removal procedure, and what seemed like one complication after another. She also defied the odds of ever getting a g-tube in her life. At 4 months old, she had her 2ndopen heart surgery, the Glenn. She fought hard to heal andendured a lengthy battle with chylous effusions. During her first year of life, she was inpatient 8 separate times for a total of about 3 months. She also spent most of her first year on oxygensupport. After her first year, she had other inpatient stays, mostly when she contracted respiratory viruses. Her heart also struggled to squeeze well at times during her first few years.
At 3.5 years old, Everly had her 3rd open heart surgery, the Fontan. During a 3.5 week stay in the CICU, she had a roller-coaster of a journey. Her healing made some progress forward and she even walked around the CICU with assistance. But her body battled extensive chylous effusions & bronchial casts that took its toll. She endured 3 chest tubes being drained daily, a sedated MRI, heart caths, a catscan, accidentally extubating herself/an emergent reintubation, ended up on ECMO, many bronchoscopies and a Fontan reversal via a heart cath(Children’s of Colorado’s first of its kind). Ultimately, Everly’s very resilient body rejected the set-up of the new Fontan flow. Her body and organs suffered as a result. On July 2nd, Everly took her last breath in the arms of both parents.
From the very beginning, Everly was sweet, spicey and sovery strong. She fought hard, pushed through complicationafter complication, and defied the odds time after time.Despite her traumatic medical journey, Everly had a beautiful life and had so much normalcy. If you were to meet her in life, you’d likely not realize that she had half of a heart and that she had the traumatic medical journey that she did. She was very smart, social, and her language skills were far above her age. She was silly, loving, and funny. Sheloved to travel/explore & traveled to Florida, CA, Maine, and SD. She loved her family & friends. She loved to read, sing, dance, paint, cook, arts/crafts, to love others and be loved on by them. She loved movie night, to drink ‘sparkie’ water and have popcorn. She adored her older brother Cooper that equally adored her. She loved playing outside in the yard, digging in the dirt, and jumping on what she called the trampole’. She also loved all animals, especially small creatures including puppies, kitties, bunnies, lady bugs, chickens, lil frogs and so much more. When you askedEverly why she was so special, she would tell you ‘that’s how God made her’. God surely used her short life for His glory and that has continued after her passing. Like all of our heart warriors, we are pretty sure that Everly was made so very extra special."
I ride and fundraise to help raise money for the amazing cardiac patients I have the honor of taking care of at Children's Hospital Colorado.
