Today’s featured cherub is Harper Yucka. Harper is the angel daughter of our MA Ambassador, Lynn Marie Gray. Lynn had this to share about Harper:
“All my life, I wanted to be a mommy. From the time I was a little girl, beyond aspirations of being a teacher or a journalist….. being someone’s mommy was my ultimate dream. That dream came true when I had my son, Logan Reilly. He turned 16 years old last month. For 10 years, I yearned for another child, but it seemed like it wasn’t meant to be. Then, when I least expected it, I found out I was pregnant with a baby girl. My dreams of creating a mother-daughter bond like I had with my mother was filled with shopping adventures, coaching softball, hair braiding, dance recitals, and meat pie baking lessons, just like gramma makes.
At 16 week’s gestation, we first learned what those crushing words meant “congenital diaphragmatic hernia”. We learned our daughter would have left sided CDH and her condition was on the severe side. Even though CDH babies have only a 50% chance for survival, there was never a doubt in my mind, we would persevere and she would be among the survivors.
Our sweet Princess Harper was born June 12 at Brigham and Women’s, immediately placed on a ventilator, stabilized and transferred to Boston Children’s. Just for a moment, we heard the tiniest cry and made eye contact before she was whisked away. She defined beautiful.
Her first surgery at 24 hours of life was the repair of her diaphragm, more than 75% open, shifting all her major organs up into her chest. Within 48 hours, she was placed on ECMO. Over the next few weeks, she endured countless surgeries, multiple lung collapses, viral and bacterial infections, sepsis, and pulmonary hypertension. We celebrated her coming off ECMO after nearly 3 weeks, and a while later on Day 56, she came off the ventilator for the first time. Imagine waiting 56 long excruciating days to hold your baby, at will. Before this, we had to have a team of nurses and aids maneuvering around her tubes and wires just to pick her up.
Harper had three older brothers when she was born, Tyler, Logan Reilly, and Logan Andrew — ages 11, 10, and 6 respectively. Our home was 90 miles away from the hospital. While Harper was in the hospital, I lived in her room. I had to return to work after 6 weeks and would either work from her room or drive back and forth to Boston to be with her, staying over as often as possible. Her father and I both juggled full time jobs and jam packed sports and school schedules for the kids and squeezed in every opportunity we could to bring the boys for extended stays to see their baby sister. In retrospect, we were pretty lucky – we knew families with similar circumstances that traveled hours, out of state, even by plane, to receive treatment in Boston.
Boston Children’s Hospital was our home away from home. Our extended family was Harper’s medical team and primary care nurses and other NICU families. We leaned on each other, we cried together, and we even found a way to share a couple laughs. We cried tears of joy when babies were able to go home to their families. We worried together and prayed together and held each other close.
A healthy baby’s early weeks are typically filled with wonderful firsts – first baths, first smiles, first nights in their own crib, first visits to Grandma’s house. Our early weeks were spent worrying about repair surgeries, PICC line placements, heart and lung function, drug weans, and longing for the day we would finally get to hold our babies.
Mostly, we all felt completely helpless. Depending on the day or the severity of Harper’s condition, there was no touching, no loud noises, and I would literally sit on my hands to prevent myself from reaching in her crib so I wouldn’t disrupt her.
At 28 days old, I was finally able to hold her for the first time – she was still on the ventilator but the wonderful nurses could see, it was time. It was as if angels provided me strength to bear her weight. She may have weighed less than 6 pounds at the time, but with all of the wires, breathing tubes, and the sheer fragility of her condition, I was shaking like a leaf.
I share these memories with you today, because it’s those tiny, precious moments that meant the world to me and my family. We would never bring her home. We would never be able to teach her to walk, say her first words, celebrate her first day of school, or show her how to ride a bike. Her entire life (126 beautiful days) was a mini-series of precious moments in a hospital room on 7 South. Holding her hand, kissing her cheek, placing her bow, rocking her to sleep, and singing her lullabies. Some of my fondest memories are seeing the look in her brother’s eyes as they held her, read to her, and kissed her tiny cheeks.
At 126 days old, on a rainy Thursday in October, Harper slipped away peacefully in my arms, with her daddy and brothers and grandparents present.
Her hypertension wasn’t getting better and every conceivable intervention was met with the fact that her tiny body and organs had just had too much. We were given the opportunity to hold her tube-free for the first time – unrestricted by wires, leads, breathing tubes and IVs. It was the most precious and heartbreaking moment of my life.
I will forever be humbled by the strength of all CDH babies and their families. It especially makes my heart happy to hear when they get to go home and grow and thrive. I like to think Harper is watching over each and every one of those warriors – offering up pink clouds, rainbows and butterflies as gentle reminders of her brief and beautiful existence here on earth.
Cherubs was an organization that stepped up when we needed them most. They provided my family with information, support, a sounding board, and most importantly, connected us with families that were going through the same thing. Before our diagnosis, we had never even heard of CDH – through the countless posts, emails, support groups, and connections we were able to lean on Cherubs when we didn’t even know what we needed at that time.”
