As told by her mother, Christina
I could never have predicted the blessings she would bring. I knew having a daughter would be wonderful. I dreamed of mothering a sweet little girl. I would dress her in the prettiest clothes, take her shopping, watch her twirl in dresses and pick flowers. Some day I would help her pick a prom dress and maybe even a wedding dress to wear as she started on her new journey. But that journey was not meant to be, nor were the dreams I had for my little girl.
Panic encompassed me as I sat in the small dark room learning that my daughter was expected to be born with a congenital birth defect that would require surgery for her to sustain life. That panic produced fear of loss which swelled into anger and eventually tears that seemed to flow continuously. I went home and sat in the nursery looking at two cribs. Slowly, I began to clean and take care of baby boy clothes and toys while all of my baby girl’s belongings sat untouched with tags still attached. I stuffed her things onto a shelf in the closet before turning to leave the room.
It was a process coming up with names for not one, but two babies. Family members and friends chimed in with many suggestions. It wasn’t until we received the news of our daughter’s pending medical challenge that we agreed on Audrey, meaning noble strength. I knew with every fiber of my being that she would need strength beyond anything I could supply to endure her journey that was to come. Her twin brother was named Asher, meaning happy blessing.
Many prayers were said for the health of both of my little Twiggins. They arrived the morning of August 06, 2013. Asher was given a clean bill of health and placed on my chest. Audrey was shown to us briefly and whisked away to be evaluated. Doctors quickly confirmed that she had esophageal atresia/tracheoesophageal fistula, a birth defect where the esophagus does not connect to the stomach. A plan was made to surgically place a feeding tube in Audrey’s stomach to provide nutrition while she spent time in the NICU growing and waiting for the optimal time to make the surgical connection required.
I was devastated. My daughter was born broken and laid one floor beneath me and her twin. I will never forget the moment I was wheeled into her hospital room for the first time. She wore a pretty pink crocheted cap my husband had picked for her. A suction tube was taped on her cheek and went into her mouth. More lines were stuck to her chest monitoring her heart and respiratory rates. A SAT probe was wrapped around her little foot. An alarm was on her wrist. She looked so frail, yet peaceful amongst the chaos. I attempted to shove my fear aside and be strong as I leaned in to say hello. Her beautiful blue eyes locked on me and my heart broke. I didn’t get to spend much time with her during that visit. They allowed me to hold Audrey briefly before taking her to the operating room and me back to my own room where I would continue trying to build a bond and routine with her twin.
The next day my husband arrived in my room with a new set of doctors. They had been able to identify several congenital heart defects through the initial testing Audrey received. These heart conditions would require close monitoring and eventually open heart surgery. My stress level rose. Time began to blur. This was not my dream.
After several days, Asher and I were released from patient status and able to join the rest of our family by Audrey’s side. We met with a large team of doctors to discuss her care plan, which included a lot of waiting. Audrey would face more trials during that wait, infections, loss of lines, and more diagnosis. One day late in the afternoon Audrey’s assigned nurse asked when we could meet with the geneticist. We responded with, “now.” Panic once again consumed me. I watched our nurse through the glass window as she spoke with the geneticist. It was clear that his intention was to go home, but he walked in to speak with us anyhow. He sat in a chair next to us and confirmed that Audrey Ann had Down Syndrome. We knew nothing about Down Syndrome.
I sat in the hospital, our new home, grieving over every dream that I had ever thought of for my daughter. It shames me to admit that I sat at arms length afraid to care for or bond with her. My oldest son and husband returned to work and school one month after the babies were born. I would play with and care for Audrey’s twin while she lay in a hospital bed a few feet away fighting to live. The doctors would come each day often times with the same message of hurry up and wait. At first, I would get so frustrated with that message. That changed after a few rough days filled with scary trials for Audrey and her life. It was during one of those trials that a doctor pulled me from my grief over my dreams for her life and taught me to embrace the blessing she was. I began to sigh with relief when the message was “status quo” though I still ached for a life with my family at home.
The nurses encouraged me to spend more time caring for Audrey. I learned how to change her diaper with tubes and lines in the way, feed my baby by tube and machine, and clean her failed Gtube stoma. I learned what the different beeps and numbers on the monitors meant. I learned how to care for my sweet girl the same way her nurses did. It made me sad to know she had so many pretty clothes that could not be worn with the many lines and tubes. I asked her grandmothers to alter some of her clothes to follow the hospital NICU guidelines. Her Beba and Mimi wasted no time. Soon she had special one of a kind outfits complete with bows, leggings, and toe polish.
Audrey spent 175 days in the Brandon Holden NICU at C.S. Mott Children’s Hospital. During that time, she had several major and minor surgeries. She came home weighing just over 9 pounds with tubes, scars, machines, a compromised immune system, and medicine. We were excited to start a life with Audrey at home even though that life included return hospital visits, additional surgeries, and a set of challenges we had yet to face.
Our sweet girl learned many new things while being home including how to sit unassisted, sign and say some words, clap, dance and sing. She earned the nickname Cricket because she would frequently clap and rub her feet together. Audrey also had a love for music, textures and people, especially her family (both blood and medical). Although Audrey was able to be home she was also known as a frequent flyer at the hospital for routinely scheduled surgeries and hospitalizations due to complications.
Her father and I drove her to the hospital for one of those many stays on January 1, 2015 due to respiratory distress. The symptoms she displayed were consistent with both complications she experienced due to her esophagus diagnosis as well as a common cold. Tests showed that Audrey did not have a cold and surgery was scheduled. She did well and looked like she would return home once again until she suddenly began decompensating. She had contracted a cold while in the hospital as well as had a complication due to her many surgeries that affected her lungs. I stood by as my child was bagged over and over. I asked them to reintubate my baby girl and prayed as the medical staff placed her back on life support.
She didn’t get better. Audrey struggled to breathe with help of machines and was placed on ECMO life support. She fought until February 18, 2015. I held her hand, kissed her face, and told her “I love you” over and over until her final breath was drawn and her heart no longer drummed. I asked the doctor for the stethoscope to be sure she was gone. Silence met me as my tears rolled from my face to hers. My daughter, my dream was gone.
Audrey Ann Wiggins lived a short life that was full of messy, broken, complicated beauty. She taught me how to be strong, how to be brave, and how to love with abandon. This is her life’s legacy and I am honored to share this with the world until my last breath is drawn and heart drums no more.
Christina Wiggins is the mother of two boys on earth and one beautiful daughter in heaven. She is the cofounder and president of Audrey’s Army Inc (Facebook and Instagram). You can find her behind a sewing machine or writing when she is not spending time with her children. Follow her Bravery Bucket List on Facebook and on Instagram.