‘She may not survive surgery.’ For 9 days, her chest remained open. She wasn’t the baby I expected.’: Mom has photo shoot in ICU before preemie passes to ‘make each day beautiful’

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“She smiled at me as I caressed her brown locks from the comfort of our couch. It was June and the sunlight sent sparkles dancing across her dark eyes, portals to the wisdom inside of her. I traced the scars on her chest and exhaled. ‘You did it, baby girl! You really did it. You came home.’

Carmen Grace was born November 30, 2017, weighing just over 3 pounds. After a fairly typical pregnancy, she arrived early and en-caul, unknowingly full of secrets. Carmen was taken to the NICU for observation and I innately pulled on my skinny jeans to pick up groceries and prepare our home for her early arrival. Her big sister, Holland, was anxiously awaiting her new best friend and I had just enough energy to finish nesting in order to properly welcome the final member into our family.

Courtesy of Sydney Hatcher

Four days later, snow lightly covered the ground as my phone rang.

‘Is there any chance you and your husband could be related?’

‘Does dwarfism run in your family?’

‘What does your other daughter’s chin look like?’

‘We are going to need to run some tests.’

My body replayed Carmen’s birth, her face, my motherly instincts. She was perfect, right? She was tiny, but she was perfect! This must be a mistake. Holland tugged on my shirt, requesting another snack. I stared at her face, questioning if everything in front of me was a dream.

Courtesy of Sydney Hatcher

Before I could catch my breath the phone rang again.

‘We found a heart murmur.’

‘…Open heart surgery…’

‘Horseshoe kidneys… underdeveloped cerebellum…’

‘Too small…may not survive surgery…’

‘…Suspected genetic anomaly… incompatible with life…. Mrs. Hatcher? Are you there?’

I was there, physically. But mentally, spiritually, and emotionally — I was remade that day. My beautiful baby girl was not who I thought she was. She was not the baby I prayed for. She was not the baby I expected. She was not the baby I was prepared to love. She was broken, and lacking, and uncertain.

Courtesy of Sydney Hatcher

She was more than anything I could have ever hoped for. She was my hero.

Carmen was diagnosed with a rare genetic anomaly, never seen before. Statistics suggest Carmen should have never been born and with numbers like that, Carmen quickly became my personal miracle. The rarity of her diagnosis initially was a challenge, yet soon became a blessing in disguise. No one knew what she was capable of and no one could say for sure what she was incapable of. The unknown was a wedge between impossible and possible. Carmen became a pioneer of possible.

Courtesy of Sydney Hatcher

At six weeks old, Carmen had her first open-heart surgery, which most assumed she would not survive. For nine days, Carmen’s chest remained open as her body was too small to close her swollen heart. Piles of machinery overwhelmed her metal crib. Lines and wires supplied blood, nutrition, and countless medications to keep her sedated body alive. The constant beeping of monitors became her lullabies. Intense overhead lights became her sun. The hospital became her home.

Courtesy of Sydney Hatcher

Carmen welcomed me into a world of uncomfortable. She compelled me to look at the undesirable, speak for the unheard, feel the unimaginable, fight for the underrepresented, love unconditionally, and celebrate in the unknown.

As the weeks passed, it was impressed upon me to provide Carmen with a full life within the ICU. Without holding her, I was challenged to comfort her. Without hearing her, I was challenged to understand her. Without knowing the number of days she was given, I was challenged to make each one beautiful. Every day I entered the ICU dressed in my uniform of black, circles under my eyes from worry, tears, and lack of sleep. Along with me, I carried the mission to be Carmen’s mom. The most powerful position I have ever held.

After nine weeks, I hesitantly brought a small clear box into the ICU. Inside was a blanket and matching hair bow. I asked for a small comb and began creating a sign to document my baby girl. With somber eyes, the nurses granted my request to attempt to photograph my daughter in an honorable way.

Courtesy of Sydney Hatcher

As I brushed her unwashed hair and placed a bow on her temperature-controlled head, I was shocked by how stunning she was. I lightly wrapped the blanket around her small frame, hiding as many wires as I could and began snapping pictures with my phone.

This is the day everything changed for me. I suddenly knew how to be Carmen’s mommy. If Carmen could never live outside of the hospital, I would bring life to her.

Courtesy of Sydney Hatcher

For 194 days Carmen and I celebrated everything! Her first shirt, lowered ventilation settings, first time up in my arms, her first bath without monitors, heart surgeries, first walk in the hallway, her first time in the fresh air, successful g-tube surgery, first cry, her first smile. We celebrated every holiday and nonholiday alike. The close calls, the tiny victories, the 3 a.m. visits, and the days that never ended. We celebrated everything. Carmen taught me not to sit and wait for a good day to come, but to find good in each day, and if there wasn’t any — I was to create it myself.

The photo-shoots became a tradition and soon, Carmen’s ICU room resembled a work of art. Pictures and hair bows lined the walls and lavender and worship songs welcomed each caregiver. This small act of celebration gave Carmen identity. She was no longer another patient. She was Carmen, and she was loved!

Courtesy of Sydney Hatcher

On day 194, Carmen got to go home. She smiled and laughed and listened to her big sister randomly sing ‘Happy Birthday.’ Carmen batted at her toys and felt the warm summer air through her ever-gorgeous hair. She experienced family and fulfilled every prayer we ever lifted. She gave us everything.

Courtesy of Sydney Hatcher
Courtesy of Sydney Hatcher

As quickly as Carmen seemed to thrive, her health declined and her presence was requested once again in her hospital home. Because of how Carmen’s life reflected worth, undeniable love and perfection infused celebration, we had reason to celebrate her death. Surrounded by family and friends, Carmen was dressed in a white gown from my childhood, adorn, of course, with a small white hair bow. We sang to her and dedicated her to the Lord, confident in our reunion one day. We held her cold, limp body and for one of the first times ever, Carmen’s body was free of lines, wires, tubes, medications, monitors. It was even then, something to celebrate.

Courtesy of Sydney Hatcher

232 days might not be enough for most people. But for Carmen, 232 days was all she needed to change the world.

My job as Carmen’s mom did not end the day she went to heaven. Instead, I was entrusted to carry out her celebratory lessons until I can hold my miracle again. In her legacy, Carmen’s Miracle Makers inspires and equips parents of critically ill children with tools used to encourage bonding and memory-making while enduring a lengthy PICU stay and beyond!

Courtesy of Sydney Hatcher

Her story is my favorite story to tell. I have been honored to publish ‘Carmen: ‘The PICU Baby‘ as a resource for families of medically complex children. Carmen’s life and death inspired my newest books, ‘Still Fighting: Battles of a Bereaved Parent,’ and the whimsical children’s book on love endurance titled, ‘And if You Can’t.’ Each book purchased helps to sustain Carmen’s Miracle Makers and ensures that good can be found in each day.

Carmen’s big sister, Holland has developed an unmatched desire to help others. Her toddler vocabulary included ‘stethoscope’ and ‘prescriptions’ and as a four-year-old, she gives the best baby doll check-ups of anyone I know. Holland loves packing up donations for the children in the hospital and got a second chance at becoming a big sister when we welcomed Mia Rae into our family in 2019. Between the two of them, Carmen’s hair bows have gotten plenty of use.”

Courtesy of Sydney Hatcher

This story was submitted to Love What Matters by Sydney Hatcher from Gainesville, VA. You can follow their journey on Instagram, Facebook, and their website. Do you have a similar experience? We’d like to hear your important journey. Submit your own story here. Be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.

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