Heart Hero of the Month NOVEMBER 2022
Story by, ❤️Mom, AnneDee
In May of 2009, on our oldest daughter’s 9th birthday, we crowded the ultrasound room with our three daughters who were excited to find out if they were having a brother or a sister! Ten days later we’d hear the words “Hypoplastic Left Heart Syndrome” for the first time. The doctor we met with that day did not have a very good outlook and left us with little hope. Over the next few weeks, I started my own research and networking and began to find hope for the first time.
Avery Grace Weisdorfer was born on September 14, 2009. She had her first open heart surgery, the Norwood Procedure, four days later on September 18. We spent the next five weeks in the hospital and the next five months at home where it was very critical that she not get sick. A runny nose or cough for one child could have been very critical for her. Her sisters would have to shower immediately when they came home from school and sanitize before they touched her. We went to church where we sat upstairs in the choir loft with the musicians. We waved at everyone as they exited and we left the building when it was empty. Our lives at home during that time were filled with feeding tubes, daily weight checks, O2 monitoring several times a day, and lots of doctor’s appointments.
She was about a week shy of 6 months old when she had her second surgery, the Glenn, on March 6, 2010. Amazingly, she was home in less than a week and was back to sitting up and would soon learn to crawl! Her surgeon encouraged us to, “Have fun, let her get dirty!” and to live life. And that we did. Before Avery could talk I’d rock her and whisper stories in her ear. Stories of miracles! The story of her special heart. I’d mention her doctors and nurses by name and tell her that God made them so smart that they fixed her heart so she could grow up. I would tell her about her scar, why it is amazing, and – always – how beautiful it is. When she was old enough to talk, she’d ask me to tell her stories to her. It wouldn’t be much longer and she was the one telling the stories.
Two years would pass before we started noticing changes in her activity and we knew they were warning signs that she needed surgery again. She couldn’t make it up and down a flight of stairs or walk more than 20 yards. Her sisters couldn’t even tickle her because she would get to worn out. Physically she couldn’t keep up with her little friends and she had isolated herself because of it. She would rather sit on my lap than even TRY to play with them. She has always been the type of kid who worries less with more information (like her mom!) so I felt we could be honest with her in preparing for the next step. “The doctors are going to fix my heart so I can run around with my friends!” Tasks and responsibilities ease her mind as well so she enjoyed planning which of her favorite things from home would make the 3-hour trip to Children’s with us. Among them were Toto and her ruby red slippers, Dorothy and princess dresses, glass slippers, her Heart Heroes cape, and of course the things from her bed that she knew she’d find comfort in being away from home for a time.
Her third open heart surgery, the Fontan, was performed on July 1, 2013, when she was 3 years, and 9 months. Handing her over for this surgery was easier than before because we could tell how desperately she needed it. She ran into several hiccups during her hospital stay, including a collapsed lung and chylothorax, so we were inpatient for a month. Even so, there was a time she was literally running laps in the lobby, something she would not have been able to do before surgery. She got stronger every day, had pink lips and warm hands for the first time ever, and grew into a happy and healthy preschooler!
When Avery was 6, she had a grand mal seizure. It was discovered that she had significant damage from a stroke, likely during one of her first two surgeries and unknown to us, which made her likely to have the seizure. From our experiences with cardiology and her heart, we always knew what to expect and had a general idea of what was going to happen and when. Seizures and epilepsy do not work that way. Her seizures happen in her sleep and have increased significantly over the last year.
Today Avery is 13 years old and is a 7th grader at Pleasanton Public School. She is just as proud of her scar today as when she was a toddler! She has taken dance and guitar lessons and has played softball, soccer, volleyball, and basketball. She is still finding her passion and she’s having a lot of fun looking! Avery has attended Camp Braveheart twice and is excited to go back again next summer. She has had so many amazing experiences there already! A week at Camp Braveheart is like a reboot. She leaves her comfort zone and comes out of her shell. She makes new connections independent of her family and life at home which is so empowering! It is therapeutic to be submersed in nature and bond with a group of peers who you have so much in common with – other Heart Heroes.
I am so thankful Heart Heroes provides this opportunity for these kids!!!
After that initial diagnosis, what I wanted was for things to be “normal” and to be “ordinary” again. Turns out, everything since then has been EXTRAORDINARY and not normal at all! A few people that were just ordinary people became my saving grace. Events have become miraculous. A hospital building became a home where we found family and friends. Time has become a gift. And a simple cape has become a strength.
I believe Avery was one of the first to receive a Heart Heroes cape almost 13 years ago. She was a baby so I picked light pink and purple with a heart and sparkles. A few weeks ago, Avery received her new cape. The one SHE designed. It’s BLACK with sleek silver and blue accents. With a STAR. Because that’s who she is now. She’s not small and delicate, she is fierce and she has conquered. She wears it with purpose because she knows how inspiring she is to families with younger Heart Heroes!
