Why I Ride:
This year I am riding for two amazing little boys, my son Colton and his friend in heaven, Simon Griff.
Colton (Moose) was born Dec. 12, 2015 at Good Samaritan Hospital in Lafayette. As soon as he was born, everyone knew something was terribly wrong. Colton was blue and barely breathing. They immediately rushed him to the NICU and then took him by Flight for Life to Children’s Hospital Colorado. Colton was diagnosed with Total Anomalous Pulmonary Venous Return, Hypoplastic Left Heart Syndrome, and Coarctation of the Aorta.
Colton had his first open heart surgery at only four days old. The surgery went well and he began to heal. A week later, Colton’s oxygen saturation began to slowly drop. At 16 days old Colton went in for a catheterization lab to see what was happening. While in the Cath Lab, Colton clotted off the shunt in his heart that was placed during his first surgery. Colton went into cardiac arrest requiring Extracorporeal Membrane Oxygenation (ECMO), which he came off of 24 hours later. We then received a new diagnosis; Pulmonary Vein Stenosis (PVS).
We were told that Colton’s PVS was severe and progressing very quickly. On Feb. 4, 2016 Colton went into respiratory arrest and was taken in for his second open heart surgery. Many people were not expecting Colton to overcome another surgery, but he did. He began to thrive. He was gaining weight and smiling at every person who came into the room. A couple weeks later we were sent home. We couldn’t believe that we were finally home. Later that night the pulse ox monitor was alarming, but the hospital told us to come in the next morning. Everything seemed to be okay. When we brought Colton in the next day, he was re-admitted. He was not able to hold his oxygen saturations and they wanted to keep an eye on him. That week we just laid low, cuddling and playing as much as we could.
On March 14, 2016, Colton woke up uncontrollably crying. When the team came to look at him, they knew something was wrong. They called for an echocardiogram and saw that his shunt was beginning to form a clot. We knew things were about to take a horrible turn. Code blue was called and many people rushed to our room. This time, despite all efforts made, we could not save him. At 9:05 a.m., at only 3 months old, Colton lost his battle to CHD. He was a brave, strong and resilient little boy who know nothing but love. He was known for his amazing smile and silly personality. Colton loved to play and cuddle but hated when his toes were touched. He had a WubbaNub pacifier that just happened to be a moose. It became his best friend. In three months, Colton touched more lives than most people could in a lifetime.
While we were inpatient with Colton we met the Griffs, although we weren't as close in the hospital, we connected with their family after the loss of both of our sons.
This is Simons story:
Simon Eugene Griff was born January 18, 2016 in New Orleans, LA. It was the most joyous day meeting our sweet boy! We were in love with his stocky shoulders, chubby thighs, and “Shrek” hands and feet – just like his grandpa. The day after his birth he was transferred to Children’s Hospital in New Orleans and we learned that instead of having a few months to prepare for surgery he would need surgery before ten days of life. A family friend (Dr. Cindy Barrett) generously helped us quickly find a surgeon best suited to Simon’s unique defects (Taussig-Bing anomaly, HLHS, aortic coarctation, pulmonary valve stenosis, ASD, and VSD). We chose to have Simon transferred to Children’s Hospital Colorado to undergo surgery with Dr. Jim Jaggers. We treasured getting to hold Simon, feed him, and change his diapers; his nurses patiently helped us parent our sweet boy. The day of surgery every update brought better-than-expected news until he came out late in the evening.
Simon was so strong and his heart was functioning normally! We saw our little guy and were encouraged to go to the hotel to sleep, as it would be a busy night in his room. In the early hours of the morning we were jolted awake by the most devastating call a parent can receive – Simon’s heart had stopped and he was being placed on ECMO (life support). Over the next twelve days things continued to go from bad to worse for our beautiful, good-natured little boy. He (and we) received such tender care from his competent, compassionate nurses and physicians in the CICU. Sweet Simon died February 10, 2016 at 23 days old after being unable to separate from ECMO. Even now there aren’t adequate words to describe the pain and grief of living after your child has died. Our hearts will always ache for Simon. We cling to the sure hope that because of Jesus’ death and resurrection one day all things will be made new.
“And I heard a loud voice from the throne saying, ‘Behold, the dwelling place of God is with man. He will dwell with them, and they will be his people, and God himself will be with them as their God. He will wipe away every tear from their eyes, and death shall be no more, neither shall there be mourning, nor crying, nor pain anymore, for the former things have passed away.’ And he who was seated on the throne said, ‘Behold, I am making all things new!’” Revelation 21:3-5
By sponsoring me as a rider, your funds will go directly to the Heart Institute to provide life saving medical equipment and research for many heart warriors like Colton and Simon. Thank you for your consideration in supporting our heart warrior community and Children's Hospital Colorado!