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New Beginnings Loading: A Journey to The Unknown

Updated: Apr 20


Nyla wearing her graduation cap
Nyla in her preschool graduation cap. Unable to attend graduation while admitted to Levine Children's Hospital, but still all smiles. Thanks to a family friend who generously offered to capture this image.

 

Spring is the season of bright fresh flowers blooming, proms, graduations, recitals, and weddings. With Spring, there's hope for a fresh start. A rebirth. And this is where our new journey begins. While many families enjoyed Spring Break, Mother's Day, and celebrating a graduation, we were fervidly filling our weekends with fun trips and family visits before Nyla receives a new heart. So, unlike some Nyla was not able to attend her preschool graduation.


This season in our lives began in January after a planned visit to the catheterization lab (cath lab) at Levine Children's Hospital. What we feared last Fall, an irreparable heart, was solidified on that day. In a nutshell, Nyla's Fontan was failing. This was not the news we wanted to hear. Being ushered into a family room for a thorny conversation left us feeling depleted. Empty. Lost. Unsure. Hurt. Angry. Betrayed. A cocktail of emotions that essentially left us bruised and battered. Just seven months prior we were alerted that if the functionality of Nyla's heart did not improve, then we were on the path for a new heart sooner than later.


How did we get here so quickly? We imagined it would be several years before a transplant would be considered. Unfortunately, here we are. In 2017, Nyla was born with Hypo-plastic Left Heart Syndrome (HLHS), a congenital heart defect which resulted in the left side of her heart being underdeveloped. She has undergone the Norwood, Glenn, Fontan open-heart surgeries, and countless other interventions. The Fontan operation is typically performed on children born with heart issues like hypo-plastic left heart syndrome (HLHS), tricuspid atresia, and double outlet right ventricle. This procedure would direct all oxygen-poor blood in a patient's body to their pulmonary artery instead of through their heart chambers.


Unwillingly being pushed to our extremities created monstrous thoughts and feelings. For weeks following this news, dark thoughts danced around in our heads. Whether or not we would ever see her graduate from high school, attend college, get married, have children, grow old, etc. Heavy thoughts that can unhinge a person. It must've been us baring our souls to God that brought us peace because the dark thoughts went away... Mostly.


The next couple of months, we underwent a series of evaluations to determine if Nyla is a good candidate for receiving a new heart. Putting it bluntly, the evaluations were brutal. Juggling the appointments, a new cardiologist and team, the vast amount of information presented, work, and family is a lot to process mentally, emotionally, and physically. Going back to therapy and how fitting in May (Mental Health Awareness Month), was just the help we needed. What our family was preparing to go through for the next several months will take endurance, mental clarity, faith, understanding, and patience. During evaluations, our minds easily spaced out. The realization of what was happening hit 100x over while we sat in that hot seat, talking about things we never dreamed to be discussing about our child. Our first born. And this soon.


Shortly after 2.5 months of evaluations, many sleepless nights, anxiety, and lots of prayer, the committee voted to move forward with a transplant for Nyla. In a strange way, this brought some relief. Partly because we survived the evaluation process and we could move forward. In April, we were officially listed on the transplant list. That month, we traveled with the kids and spent time with family and friends. Oh, and we received our first offer for a new heart.


Before we knew it, Nyla's last day at preschool was upon us before being admitted to Levine. This meant she would not attend her graduation or have final goodbyes with her classmates and teachers. A milestone we were robbed of unfortunately. As expected, York Technical Child Development Center and their staff pulled together a party and sent us off with gifts galore. So many touching messages, warm hugs, and kind eyes. However, on graduation day we were able to FaceTime from her hospital room to fondly watch the ceremony. We were excited to hear Nyla's name called and a brief shoutout to her being in the hospital awaiting a new heart.


On the horizon, we knew being admitted to Levine meant there's hope. However, we also knew waiting until we receive "the call" can break even the toughest one of us. For the average person, a hospital stay may be 1-3 days; but we were looking at being in the hospital for potentially 3 months. On the other side of hope is the dread that comes with feeling like a caged animal unable to experience life outside the walls of the hospital.


Let the waiting game begin...



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