Riley Samuel Mihulka was diagnosed with hypoplastic left heart syndrome at 23 weeks of gestation. From that point onward, our family set out on a mission- “Operation Bring Riley Home”. We relocated from Montrose, CO to Denver at 37 weeks. Riley was born on March 20th, 2024, at Colorado Children’s in Denver. We chose the name “Riley” because of its definition- “valiant and courageous”. Shortly after deciding this, a close friend, without knowing Riley’s name, told me Riley’s life would be defined by “fortitude”. Fortitude means to have COURAGE in the face of pain or adversity. Wow. The same definition as his name! Little did we know just how prophetic those words and Riley’s name would be.
Just as predicted, Riley’s fight started the second he was born. Riley’s surgeon, Dr. Stone, invested all he had into our sweet boy. He informed us after Riley’s first surgery that his native aorta was only one millimeter wide- the width of your fingernail! Riley spent his first eight weeks in the hospital, charming the staff with his big (brown) eyes. At eight weeks we were finally able to take Riley “home” to Ronald McDonald house. The thing is, Riley was still sick. HLHS doesn’t have a cure, just palliative treatments. Our normal day consisted of medications, monitors, beeps, feeding intolerance, oxygen, weigh-ins, and lots and lots of naps. Phone calls to the medical team were so frequent that I was told the phone lines slowed down once Riley was admitted again. We had him home for a total of eight weeks, interspersed by three emergency room visits that led to two additional admissions, one for 12 hours and one for three weeks.
Those eight weeks at home were such sweet, sweet times. Riley quickly earned himself the nickname “Smiley Riley” due to his perpetual smiliness. He rarely got grumpy, despite how bad his tummy had to feel. Jamming out to Disney tunes during bathtime became a nightly ritual we all looked forward to. Afterward, he would sing along with me during our bedtime serenades. Because he was on continuous feeds, the child never knew hunger. In the mornings, we’d wake up to the sound of his hand running along the mesh of his bassinette, just patiently waiting for us to come find him with a huge smile on his face and lots of stories to tell. He enjoyed walks in the park, trips to the zoo, the butterfly pavilion, and the aerospace museum, and even got to watch Dad race dirt bikes. His kick n’ play kept him entertained for days on end. Anything red or orange totally captivated him. If his clothing had red on it, he would bring it so close to his face it would make him cross-eyed. His orange fox was his best friend; in the car, on the stroller, or on his hospital crib, they were always chatting.
All this…in between frequent outpatient visits to cardiology, physical therapy, and the special care clinic. Most of the time Riley didn’t mind. He would often sleep through his echocardiograms and even through his g-tube replacement. He enjoyed watching the monitors and Bluey and chatting with his providers. He even rolled over all by himself for the first time while at the cardiologist! One of his emergency room nurses asked us if he was always this “calm and curious”. Yes, he really was! He was smart, talkative, curious, patient, and loved meeting new friends. His eyes said it all- you knew he cared, even though he was only a little guy, too small for the growth chart.
The time finally came for Riley’s second surgery, and all of us were more than ready. We could tell his heart was getting very sick. Well, Riley’s second surgery did not go as planned. He went into cardiac arrest for a moment at the end of the surgery…then made a full recovery. Later that night, he went into severe arrhythmia and heart failure, only narrowly avoiding mechanical heart support (ECMO). Miraculously though, he started to recover…until he got sick because his gut wasn’t getting enough blood to digest food. It was at this same time we learned he had also suffered a stroke during surgery.
The six weeks following his second surgery were a series of shocking complications followed by miraculous progress and recovery. The team eventually decided he needed a ventricular assist device, or a mechanical heart pump, and would need to be put on the transplant list. He made it through the complicated surgery of placing the VAD without issues. However, after placed, he developed a leaky valve which prevented the device from adequately supporting him. A week later he underwent his fourth surgery to repair that valve and then, finally, we really thought he was on the way to recovery!
Tuesday, September 17th was a great day. He started feeds and opened his eyes for the first time in two weeks. Then Tuesday night, his valve started leaking again…in a different place than where his repair was. By the time I got to the hospital on September 18th, his urine was red, he was swelling before my eyes, and his kidneys were failing. The team tried one more catheter procedure in effort to stop the leak, but it was too much on his heart. Riley went to live with Jesus on Wednesday evening.
Because of HLHS, I got to spend every moment of Riley’s earthly life with him. Because of HLHS, I got to know this incredible community of heart warriors, their families, and their providers, who offer so much hope and life in the middle of this broken world. Over the months of Riley’s life, our medical team became the community we spent our days with. I can’t say enough about their impact on us and their passion for helping Riley. Because of them, we got to enjoy Riley for six months that we otherwise wouldn’t have had. It’s because of them that we got to know our boy at all. Heart Institute, thank you for all that you did for our family!
