I ride to give hope to Children's Hospital Colorado patients like Ava.
Ava was born healthy and happy along with her identical twin sister. As they grew, their love for adventure, animals, and each other was unending. The physician that had been taking care of these twin sisters since they were born retired. The new pediatrician at Ava's annual wellness visit as a six year old said "I hear a murmur. Ava has a murmur." He recommended I go see a cardiologist to rule out anything dangerous or grossly abnormal. The pediatrician reassured me, most murmurs are insignificant.
A couple of weeks later Ava is getting an echocardiogram. I have to constantly remind her to hold still because she is an active, happy, healthy, impatient, perfect little six year old girl. She is given a blue sucker as a distraction. The echo-tech ominously says "best of luck with everything" as she escorts us back to our patient waiting room. The cardiologist, whom I've never met says "Look at your blue tongue, if only that could be our biggest problem." He proceeds to discuss the anatomy of the heart, the four chambers, what each of them are for, and then describes where Ava's has a hole. Holes can be patched, he says, no problem, but the proximity of Ava's hole to her mitral valve has left her valve cleft. The combination of which can only be treated with open-heart surgery. She has an atrial septal defect (ASD), the most common of congenital heart malformations. Her cleft mitral valve however, is allowing regurgitation to cause enough stress to enlarge her heart. We are referred to Children's Hospital in Denver for surgery.
Children's hospital in Denver supports us every step of the way. We do all the preoperative lab work, tests, consultations, tours, and make all the arrangements to hand off her twin sister to family. We are told she could be in the hospital anywhere from 3 days to weeks depending on how she does through the surgery.
We wake her up the day of her surgery in the hotel we are staying at. We make sure she doesn't eat or drink anything and take her to the hospital. Check in is fine, escort to pre-op is fine. She gets a dose of versed and we get to giggle at her giggling. Both of her bottom front teeth are loose, the anesthesiologist says he will have to remove them. I think to myself, does the tooth fairy even get to come for little kids in the hospital? And then we hand her off to a room full of strangers, equipment, lights, monitors, and tools. Me and my husband are reduced to tears as we return to the pre-op room to gather our things and Ava's stuffed unicorn.
Did we make the right choice? Will the surgery help? or hurt? Will she ever be the same? Did we just lose our daughter? Will her twin sister and best friend ever see her again? Will her heart re-start after they chemically stop it? Will she visit heaven? What does tomorrow look like? It's excruciating. Waiting in the surgical waiting room looking at the clock, feeling like time cannot go fast enough, you can't get enough updates from the operating room nurse. Your family has to feed you because you forget about eating, drinking, and anything you've ever complained about your entire life. Please God, just let my baby get through this.
Then the surgeon comes out, as though he just effortlessly baked a batch of cookies. He says she did great, the valve is sewn closed, there is minimal regurgitation, hole is patched, no leaking is observed, her vital signs are stable and we can go see her as soon as the nurses get her settled. "Thank you for saving my daughter's life" says my husband, reminding us all that this was no batch of cookies. She is a tiny, cold, sleepy body in her big hospital bed with tubes and wires everywhere. It's done though, now we wait. We wait for about 24 hours, she perks up, tubes are taken out, wires are disconnected, she is transferred from the ICU to a regular floor. She gets a bath, goldfish crackers, netflix, and stands up to use the toilet. Resilience is truly the most remarkable quality our children poses. What started as the most unimaginable fear as a parent, turned into just the worst weekend of our lives. Surgery on Friday and home before lunch on Monday. She had a flawless recovery. Learned to swallow pills, let me take a picture of her chest incision every week until it was just a beautiful little scar. She no longer requires medication, her heart has returned to normal size, she can now beat her twin sister in a race, and is tougher than any little girl I know. We see our cardiologist once a year for routine echocardiogram and EKG. My fear is always that he will say she requires heart surgery again, but so far, each visit is that she is doing great, and is back to being an extraordinarily ordinary little girl. Ava's grandma said "I am thankful to exist in a time where this can be treated." She is a success story in our medical system, that all started with her pediatrician being thorough.
Ava will not be the last child to face a life-threatening illness, and her family will not be the last to navigate a frightening diagnosis.
The Courage Classic is not only a personal challenge, but also an opportunity to support positive outcomes and healthier futures for children.