Heart Hero of the Month July 2022

Story by, ❤️Mom Katie

_{A BRAVE HERO}

Someone once said, “A hero is an ordinary individual who finds the strength to persevere and endure, despite overwhelming obstacles.” Never did we imagine the bravest hero we would come to know, who would overcome some of the most challenging obstacles, would be our own son.

Cole joined our family on November 18, 2014, and life as a family of four was in full swing. We got to snuggle, work on feeding, take countless photos and introduce him to several family members, including his proud big brother, Carson.  He was perfect. We had no idea how abruptly our world would be turned upside down.

As with every newborn, Cole was taken for some testing before getting ready to go home. We were awakened by the doctor telling us that the oxygen saturation in his hands and feet were not the same, so he was transferred to the NICU for closer monitoring. An ECHO was performed in the morning, and we were informed that Cole was born with a severely underdeveloped left ventricle. He was officially diagnosed with Hypoplastic Left Heart Syndrome (HLHS). The doctor told us, “It’s serious, it’s rare and it’s not something we can fix here.” Cole was air-lifted to Children’s Hospital & Medical Center in Omaha, from Sioux Falls, and Tyler and I made what felt like the longest 3-hour drive of our lives to be at his side.

After spending a few days in the NICU, meeting his surgeon and other members of his care team, Cole had his first reconstructive open-heart surgery, the Norwood, on November 26^th, the day before Thanksgiving. After almost a week in recovery, everything looked promising – until it didn’t. Something wasn’t quite right with the rhythm of his heart, so he was emergently taken back to the operating room for exploratory surgery. By the grace of God, they were able to find the problem, correct it and get him back on the right track. We spent Cole’s first Thanksgiving, Christmas and New Year’s in the hospital, and after 52 emotional days, we were able to bring our baby home. 

Life at home was nothing like we had envisioned. Feeding tubes, blue lips, daily weights, O2 sat checks and medication alarms became our new normal. While other moms I knew meal prepped, I med prepped. I pre-dosed as many medications as I had syringes to help save time.  We reached a level of exhaustion we never knew existed, but we did what we had to.  Cole was fighting hard and so were we. 

What made Cole’s diagnosis a little different than most with HLHS, is his left ventricle was borderline in size, not entirely unusable. Rather than going with the typical 3-stage surgeries (The Norwood, The Glenn and The Fontan), Cole was on the path of Left Ventricle Rehabilitation (LVR). This meant that after the Norwood, the number of surgeries would be unknown -that it would all depend on his progress, growth and reactions to each. Cole went back and forth, to and from Children’s for a number of heart caths, and even a few more open-heart surgeries before he was two years old.

On April 12, 2017, Cole had an operation for a mitral valve replacement to try and allow more blood flow to his left ventricle. The surgery went well and we made our way from the cardiac waiting room to the waiting area outside of PICU. We were told it might be close to an hour before the nurse comes to get us, while they get him all situated. An hour passed, then an hour and a half, then two hours. We had been through this enough to know that it can often take longer, but this time was different. The knot in my stomach and a lump in my throat was getting bigger by the minute. When instead of the nurse, we saw the cardiologist and nurse practitioner pacing apprehensively toward us, we knew something was off. We were given the news that once Cole was up in recovery, he went into V-tach, coded, and was placed on ECMO. 

I remember dropping to my knees, my head fell onto Tyler’s lap, and I sobbed.  

Eventually, we gathered the strength to get down the hall and to his bedside. Seeing his chest still open was not something I was prepared for, but I had never been so grateful for medical advancement. He was successfully decannulated three days later, but still, we had no plan for what was next. A cath needed to be done to explore his options, but he was not yet strong enough. It was over 4 weeks before the doctors felt he was well enough to withstand a cath. While not the news we were hoping for once complete, we now had more of a definitive plan.  Cole’s heart was sick, his left ventricle was not growing as we had hoped, he developed a blood clot that needed emergent intervention and he was weak. We were introduced to the transplant team, completed our evaluation, and on June 3rd, he was officially listed for transplant. An entirely new journey had begun, and all we could do was wait.

Fast forward to July 4^th — Cole’s health was getting progressively worse and morning rounds with the medical team had not gone well. Medication doses were nearly maxed out and he was placed on a ventilator to reduce the amount of work required from his body. It was made clear that unless a heart became available, he would soon die. Time was not on our side and there was little left for the doctors to do. As we glanced at fireworks scattered throughout the city, from the panoramic window of room 217, we wondered if it would be the last holiday we would get to spend with our baby boy. There were few words and many tears.  It was a night of little sleep and a lot of prayers.   

The following afternoon, sitting at Cole’s bedside, we noticed both the Transplant Coordinator and Chief Transplant Cardiologist standing at our door. While not uncommon for one or the other to stop by throughout the day, to see them together, at that time of day, was rare. That’s when we knew. After 32 days of being on the transplant waiting list, not a moment too soon, they confirmed to us,

“We have a heart that we’ve accepted.” 

Drowning in more emotion than we knew humanly possible, our tears poured. Alarms seemed to fade, as though only white noise. Cole was getting a second chance at life and we were ecstatic. At the same time, we were fully aware that for Cole to receive this miracle, another child would need to make their home with Jesus. It would be the last time those parents would hold their baby and that shook us to the core. We cried for them. We prayed for them.  Nothing about it was, or ever will be, fair. To call it selfless heroism would be an understatement.

Cole was resting well and had a calming smirk across his face. It was as though he heard everything and knew that life for him was about to change drastically. We tried (and failed) to get some rest, knowing it would be nearly impossible once the process began. After numerous delays and being up all night, we were made aware that the heart had arrived at the airport and was in transit to the hospital by way of an ambulance. Anticipation was at an all-time high as we peered down Dodge Street from the parking ramp. There it was, lights flashing, racing down one of the busiest roads in Omaha, carrying the most precious cargo. The sound of those sirens meant hope had arrived, and in nothing more than what appeared to be a red camping cooler.  Our regard for an ambulance forever changed.

Surrounded by inspirational artwork from other families alike, we made our way to the all too familiar private cardiac waiting room. There, one display read, “Where there is great love, there are always miracles.” We had already been witness to a miracle and were feeling anything and everything, other than a lack of love. As unsure as we were about how his body would react, it was the most at peace we had felt in a while. One way or another, life was never going to be the same. After less time than expected, at a little after ten o’clock in the morning on July 6th, the heart was in and beating on its own. Finally, we were able to breathe the sigh of relief for which we had prayed.

We made our way to see Cole in PICU recovery. We were in awe of how normal he looked. His nail beds and lips were no longer blue, but pink. His oxygen saturations were higher than we had ever seen. Somehow, he mustered up enough strength for a little smile, with his Elmo tucked in closely.

After a few setbacks, another code, intense therapies, transplant education, 128 days in the hospital and re-learning to walk, we were finally able to bring Cole home again. Something only a couple of months prior, we feared may never happen. Our patience was tested, but our faith prevailed.

A few months later, in late fall, a narrowing was discovered in one of Cole’s pulmonary veins at his post-transplant follow-up visit. The fix for this would be a marsupialization procedure, to go in and widen the troublesome areas. With all we had been through, we had never seen the doctors so skeptical. We were given the option of a surgery date, being told, “We don’t want to wait too long, but we will let you decide if you want before or after Christmas, as it could be his last.” We spent Christmas Eve at home, drove to Omaha on Christmas Day, and surgery was set for December 26^th. Our hardest “see you later” yet, thinking we were done with those for a while. Thankfully, surgery, and even recovery, went better than I think anyone expected. He was able to be home for the New Year and ready for a new beginning.

We continue our trek to Omaha every three months for Cole’s check-ups with the transplant team, and heart caths on an annual basis. To date, he has had 9 open-heart operations, and caths, I’ve lost count. This month, July 6^th will mark the 5-year milestone since he received his gift of life.

It hasn’t always been easy, but it has been worth every sleepless night, smile and tear.

Cole’s entire journey has brought us closer as a family, celebrating all moments, big and small. I never knew I’d be so emotional over preschool graduation – now he will be starting second grade! It’s been an absolute delight to watch him play baseball, swim, ride his bike, play with his siblings and friends, and grow to do the things a little boy deserves to do. He is a pro with his meds and has even made the advancement from suspensions to capsules! He loves big, does everything in Sonic speed and gives the best hugs! He’s the strongest, most resilient boy I’ve ever known. We will never take for granted our village of a support system that has helped get us to where we are. Being a part of the heart community reminds us that we are never alone on this rollercoaster ride, and we will be forever filled with gratitude.

Cole’s heart hero cape is a tangible reminder of how truly brave he is, all he’s endured, and everything he has yet to overcome. He will always be our hero.