December’s Heart Hero of the Month

Heart Hero Cole

by, Heart Mom Kari

Cole was born on July 21 of 2017.  Although he was born 4 weeks early, he was completely healthy and showed no signs of having any developmental defects or issues.  Fast forward three months; my and my husband’s (Brad) employer offered to move the family from Pennsylvania to Nebraska for a two-year project. We accepted the offer as it would be a career advancement for both of us and the children were still young at the time. The move would entail uprooting and moving a family of six halfway across the country in six weeks…and during the holidays.  It was no small feat, but like everything else Brad and I faced to-date, we powered through the late nights of packing & making arrangements with moving companies. Soon enough, we had our little family settled in Papillion, NE by early December. 

A week after moving, we decided to venture out and find our Christmas tree.  Brad took our 3 older boys to pick out the tree while I stayed with Cole in our car to keep warm.  It was then that Cole, almost instantly, started modeling and was struggling to breathe.  I noticed how sweaty and lethargic he was and knew immediately his life was in peril but didn’t understand why.  Earlier that week he had a slight cough but no other issues that would raise alarms.  We waited near the tree farm for emergency personnel to arrive and were immediately transported to Children’s Hospital of Omaha. Seconds seemed like hours while waiting for the ambulance to arrive. I can remember feeling an overwhelming sensation of panic and tunnel vision all the while.  Moments before the ambulance arrived, Cole seemed to get his color back and was breathing better. When the medics arrived, Cole and I were loaded in, and away we went to Children’s Hospital.  Brad and the boys followed behind us.  At the hospital, we were taken into a closed room in the emergency room.   After a quick x-ray, it was determined that Cole had an enlarged heart, and he needed intervention immediately.  He was diagnosed with dilated cardiomyopathy with left ventricular non-compaction and was intubated that evening.  In a matter of a few hours, our world changed, and we were told we could lose our baby boy.  Somehow, we had to figure out how to be in two places at once… at the hospital for Cole and home for his brothers.  We had no family and no friends within 1,000 miles.  Luckily, our family rallied and we had Brad’s sister and grandparents arrive within the next two days to help. 

We were told patients with Cole’s condition can have one of three outcomes.  One-third completely recovered, one-third survive on oral medicine and one-third pass away unless they receive a heart transplant.  We were immediately hopeful he could recover.  Over the next few weeks, we tried IV meds, oral meds, therapies, etc. to help Cole rebound but after many failed attempts there were no changes to his heart size or function and in some cases, his function was worse.  He went through some rough spots and had to battle high fevers and accelerated heart rates over his stay as well as self-extubated himself and scared his parents a few times.  After a long consultation with his medical team, we ultimately decided to place him on the heart transplant list on January 3… which also happens to be my birthday.  We prepared ourselves mentally to wait for a long time for a donor’s heart.  Again, Brad and I had to draw strength from each other to face another obstacle to overcome.  We were confident we were making the right choice because Cole’s doctors were very clear that he wouldn’t see his first birthday without a transplant.  The thought of our son dying and having that void in our lives, more importantly, in our 3 other son’s lives was gut-wrenching. 

Only 18 days later, on January 20, we received “The Call” that there was a heart for Cole and to prepare for surgery in the early morning of July 21, his 6-month birthday.  We weren’t fully prepared to get the call so quickly but we knew this was the path Cole was meant to take.  We were able to bring his brothers into the PICU to give some good luck kisses & prayers.  After my parents took the other children home, Brad and I snuggled with Cole for hours until it was time to start pre-op.  It’s a mixture of emotions to hand your child over to a team until only recently you have known.  Walking down that hallway to the OR, your mind wonders if the surgery will be successful or not, whether your child will come back alive or not, what the future for your child holds, etc.  Even though we had been preparing and praying for this, I don’t think a parent ever fully knows the emotions to be had until it’s GO Time.  Despite those feelings of worry and hesitation, we had so much faith in our team that we almost felt relieved to have a solution, even a chronic solution, to his heart failure. 

There is a guilty side to receiving a donor organ in knowing that somewhere out there, a beautiful child passed away to give life to your child.  Even to this day, I feel like we’re paying a debt that can never be repaid.

The surgery went well and his recovery had some bumps in the road but today, you would never know all that he has been through except for a few scars on his chest and stomach.  Cole’s surgery was the 21st heart transplant at Children’s of Omaha which he received on January 21, 2018, exactly 6 months after he was born.  It seems to be that 21 is his lucky number!  Cole loves playing with his brothers, only wears pajamas everywhere, loves Superheroes and Toy Story, and is rapidly learning so much as the days go on.  He has the best dimples when he smiles and is a blessing in our family.  His brothers have their baby brother with them, which brings tears of joy to our eyes! 

Every day is a gift and we strive to appreciate that.

During our hospital stay, we were able to connect with two organizations: Midwest Heart Connection and Heart Heroes.  Both were a source of information, comfort, and community.  We still treasure his Bummer Bear and Heart Heroes Cape that he received from each organization.  They both serve as reminders that he is a strong, special little boy and that we are not alone in this CHD world. We were not the first family helped by these two organizations, and we won’t be the last so long as there are continued support and volunteers provided by gracious individuals both inside and outside of the organizations.