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A Week of Ambiguity: Father's Day, Juneteenth, Birthday, and The Gift of Life

Updated: Apr 20


Family walking down the hall of the hospital holding hands.
Eric, Nyla, and Tia tearfully walked behind the Anesthesia Care Team toward the operating room (OR). Instead of sedating her to roll Nyla back to the OR, the team gave her control and she braved that walk.

 

They say hindsight is 20/20 and that statement could not be truer. Throughout our lifetime, there's been only a handful of people who we've admired enough to call a badass. It takes a remarkable person to hold in that regard. As it turned out, we were blessed with our own little extraordinary human. Looking back at the events that unfolded the week Nyla received her new heart intensified our admiration and leveled up her badassery. Gosh, we love her.


Father's Day weekend in the hospital was like any other weekend in the walls of Levine Children's Hospital. At this point, we've been in the hospital for 30+ days and we've established a routine. Morning rounds with the transplant team somehow evolved into Nyla and her cardiologist having water fights with syringes. One of his comrades always seemed to be in the direct line of fire of his syringe and walked out wet every time. Haha! We implemented quiet time daily from 12:30 - 2:30. For fresh air and sunshine we had an occasional lunch or dinner on the outdoor patio. Receiving special visits from loved ones was always warranted. Maybe a trip to the playroom for a change of scenery and to mingle with other children. Or simply cruising the 8th floor with her roller skates and/or tricycle.


On this particular Sunday, we washed and styled her hair in preparation for family portraits with Flashes of Hope on the following day. Flashes of Hope is a program of Alex's Lemonade Stand Foundation that creates free uplifting portraits to honor the unique life and memories of every child fighting cancer. However, the invitation was graciously extended to our family and we accepted. Hair care seems to be a low priority when it comes to the hospital for most patients. In comparison to saving your life, hair care takes a backseat. Since we were in this for the long haul, we came prepared and got creative for Nyla's hair care routine. Even for something like the curly hair that adorns her head, normalcy was needed to bring a little joy to Nyla.


Monday was like any other typical day, except it was Juneteenth and picture day (Flashes of Hope). Generally, in our household a Juneteenth weekend includes attending a festival, music, Eric performing in the festivities, and discussions about the importance of that day. Juneteenth is a federal holiday celebrated on June 19 to commemorate the end of slavery in the US. The holiday was first celebrated in Texas, where on that date in 1865, in the aftermath of the Civil War, enslaved African-Americans were declared free under the terms of the 1862 Emancipation Proclamation.


Nyla standing by toy train.
Nyla happily takes a photo in front of this toy train by the Family Resource Center.

As our daily afternoon activities ceased, we dressed the children and proceeded to the Family Resource Center for our photo session.


Feeling a bit weary, Tia (Nyla's mom), was reluctant to participate but enjoyed the experience. Living in the hospital for weeks is exhausting and can deplete the most upbeat one of us. Understandably, even wearing a smile at the lowest of times can be a chore. However, to see how genuinely cheerful Nyla was and to see her interact with her little brother in front of that camera melted our hearts.


Tuesday strutted by and just like that it was Eric's birthday. Since it was Tia's night to stay with Nyla, that morning she dropped our son off at daycare, packed an overnight bag, and headed for the hospital. During evaluations we were told on average "the call" happens in the wee hours of the night/morning. Think between midnight to 6:00 am. However, it can happen any time. So, be ready at all times. For our sanity, we operated each day with that timing. So, it never occurred to either of us, that today was any different. It was a business as usual type of day.



Nyla wearing backpack with heart medicine.
Nyla posing for Flashes of Hope. Equipped with her trusty backpack that carried her medicine. Our brave girl is pictured with a PICC line, showing off her heart scar. She wanted two puffs on the top of her head with beads in the back.

Obviously, celebrating any holidays or special occasions wasn't happening. Eric already mentioned he did not want anything for Father's Day or his birthday except being with his family. There was nothing unusual about this day except his energy when Tia arrived at the hospital. On the ride up, a sermon by Bishop T.D. Jakes called "It's Worth the Wait" was playing in the car. As a place of comfort, we are intentional with surrounding ourselves with inspirational messages. This message was right on time because waiting is painstakingly hard.


Persistent on not arriving empty handed, she arrived with flowers, cake, and a smile. Eric received the gifts, but... something was off. His head appeared to be preoccupied. Little did she know he JUST received an unexpected birthday gift. Walking into Nyla's room and seeing a member of the transplant team wasn't unusual. Seeing freshly drawn animals (a frog, giraffe, unicorn, etc.) on the windows wasn't out of place either. It was just another day.


What she did not know was that moments ago, Eric just learned of a heart being ready for Nyla. The not-quite-right energy was him processing what was happening. So, instead of "the call", we received an in-person visit with the news of a heart being available and the impending surgery was underway in less than 16 hours. Have you ever experienced several emotions at once and it made you nauseous??? THIS is what we experienced. A mixture of relief, sadness, gratefulness, confusion, hope, nausea, happiness, anxiety, helplessness, etc all came rushing in at one time. We weeped for the donor and their family. We weeped for Nyla. We weeped because in the words of our uncle Alphonso, "to love is pain."


Replaying the walk from the elevator to Nyla's room, Tia soon understood the lurking and jittery reactions from the nursing staff. They knew something she did not and was almost bursting from the seams withholding the good news until she found out. That night was buzzing with activities. From the regularly scheduled medicines, to meeting with the heart surgeon, the lead anesthesiologist, palliative care, child life, etc to preparing Nyla for bed.


Before Eric left to get our son from daycare, we met with a Child Life representative who walked Nyla through what to expect and what she will see before and after surgery. I applaud the efforts to explain a highly complex and difficult situation to a child. Although we've been through heart surgery multiple times, this is the first time Nyla has been this aware. She's older and more active.



Nyla in roller skates and playing the Nintendo Switch
Hours ago we learned of receiving a new heart and Nyla continues to roller skate and play the Nintendo Switch. The innocence before a major life change is deafening in this photo.

Seeing how Nyla took in the information made our hearts flutter. So young and innocent. She didn't ask for any of this but this is her life. Being shown a virtual tour of pre-op and the operating room (OR), protective overalls, gloves, masks, talking through her emotions, and demonstrating IV lines that she may have on a doll made what she was about to face hard to swallow. You see, we remember all of Nyla's surgeries. We remember things she will never remember. Although she's going through the actual surgery, we carry the hurt, worry, and pain uniquely.


From experience, there are things that are etched in our minds about how ugly and gruesome this journey can get. Some imagery sits idly in the back of our minds waiting on the trigger for it to present itself. I applaud the medical professionals who live with tainted memories of grim situations. They fearlessly brave these horrors from patient to patient. It's a lot to take in and I understand even with their best efforts not to get attached to some patients... they do. They're human. They, too, carry the burden differently.


Getting settled for the night was a task. Our night was filled with updating family and friends of the BIG news, orchestrating care for our son, and keeping our minds settled for the impending event. Throughout that night certain moments froze and others came rushing through like a freight train. As Tia and Nyla settled for bed, Nyla said, "Mommy, I'm scared." What she didn't know was we were scared, too. Scared of losing her. Scared that those moments could be our last moments together and they were being filled with busyness.


Typically, on the eve of an operation we would snuggle in bed together. There is something comforting about snuggling with loved ones especially when venturing into a scary situation beyond our control. However, we were under different circumstances. Ordinarily, Nyla would cleave to her daddy, the protector; but this time we decided Tia needed to stay. The hours described leading up to Nyla receiving her new heart were eerily synonymous of the hours of labor pains to birth her into this world. That said, Tia and Nyla bonded as only a mother and daughter can.


As they laid in their respective beds, Tia probed, "Why are you scared?" As innocently as possible, Nyla said she did not want to lose her heart, she did not like the way the sleepy medicine made her feel, and she did not like being grumpy afterwards. For perspective, the side effects of being under anesthesia, Versed (Midazolam), and the anti-inflammatory steroid will make you feel quite odd. The anesthesia alone will make you feel nauseated, dizzy, and achy. Add in the other side effects from the other drugs of amnesia, uneasiness, moodiness, weight gain, etc. and you've got yourself an unpleasant experience.


Drawing from an experience of her own, Tia validated Nyla's feelings but also prayed with her. She, too, was sad that the heart that was created inside of her womb, be it ill-formed, will be taken away. That heart was made with love and was a part of our DNA. In our household, we pray when things are good and bad. So, staying connected to our creator on this journey is second nature. Letting Nyla know it was okay to feel scared, helped. Instilling in her that we often do things while scared but are still brave, helped. Telling her to talk to God and tell Him she is afraid and to calm her, helped. Ending our night by tucking her in, sharing our emotions, giving tight hugs and kisses made the next 5.5 hours of sleep seem like 15 minutes.


Here goes that freight train again. Time just raced by. And just like that, it was 4:00 am and time for the big event. Our account of what happened next is nothing short of a miracle.



Nyla thumbs up Flashes of Hope
Our little heroine, Nyla, gives the thumbs up that everything will be okay. Photo taken by Flashes of Hope.

We started this article saying how much of a badass Nyla is and we are not here to convince you of that. With half of a heart (HLHS), Nyla exceeded expectations from her medical team. She never looked like what she's been through. Always sweet. A hard worker. Down to earth. Intelligent. A leader. Fun-loving and has beaten the odds every time. The medical procedures she has endured hasn't been fun but in-spite of it all, she found her joy. If this isn't a testament from a child of how we should approach life, I don't know what is. Born with a defect and still thriving. In the words of her granddad, "Life isn't all peaches and cream..." We all have our seasons of happiness, sadness, building, growing, blessings, loss, etc. It's what we do in those seasons that says a lot. Nyla is a badass because no matter what season she's in, she is extraordinary and defies the odds.


We are #NylaStrong!



2 Comments


Michelle Alexander
Michelle Alexander
Jul 27, 2023

So happy to hear Nyla got her heart! So brave and beautiful! Thank you for sharing her testimony!

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Continued Blessings Nyla that took a lot of Courage you are so Brave I thank God for you

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