Penelope Rose Winsman (Penny) arrived on October 31, 2019, at 31 weeks, weighing 2lbs 15.9oz after a vehicle failed to yield, causing an auto collision. Penny and Mom were rushed to the hospital where an urgent emergency C-section was performed to save Penny’s life. Penny battled prematurity and an irreversible severe traumatic brain injury, sparing her brainstem and cerebellum. Medical professionals said, “Only time will tell until Penny passes.” She was given a life expectancy of six months or less.
We were placed on Palliative Care and began quality of life and comfort measures, but we never gave up. Penny’s medical conditions were complex and unpredictable. Throughout Penny’s NICU journey, she experienced many events and conditions relating to the neurological impairment she suffered as well as other issues relating to prematurity. Eventually, she grew out of some of the conditions while others were lifelong. Just to name a few, Penny dealt with sleep apnea, central apnea, respiratory distress/ respiratory failure, neuro-irritability, microcephaly, eating difficulties/G-tube dependency, spasms, and spasticity.
We never left Penny’s side during our three-month stay in the NICU. Time was limited and it was important for us to be there, to advocate for Penny, and give her the love that only we could give, improving her quality of life. Our time together could not have happened without family, friends, community, and support from organizations like the Ronald McDonald House and her amazing medical team. We were given the priceless gift of time and cherished every moment. Our journey of impending loss was able to also be our journey of togetherness, memories, and much, much more.
Penny kept fighting! She continued to amaze us with her strong will to live, showing everyone what she was capable of. We loved her every single day and always told her how proud we were. Penny finally graduated from the NICU and was able to experience life at home with Mom and Dad on Hospice Care. We created a beautiful life full of love and happy experiences for Penny. We danced, listened to music, planted a healing garden, celebrated monthly birthdays, played musical shows on “Penny’s Porch”, went on lots of photoshoots, stared into each other’s eyes, had long conversations, and hugged Penny day and night.
Throughout Penny’s journey, she faced many challenges but also had many accomplishments. She did so much more than was expected based on her MRI, CT, and EEG results. She knew who Mama and Dada were! She could hear and see us. She loved to hit her toy fish and every time we said, “You did it, Penny!” The BEST day ever was when she learned how to SMILE! It was so beautiful. Penny loved affection and responded to encouragement. She communicated to us in baby talk and through the expression of her pretty eyes. For a short amount of time, Penny was able to visit with her family in person until the pandemic arrived. COVID made it impossible for us and Penny to be around others. Penny had no indoor visitations, except for Hospice and window visits from her loved ones due to her compromised immune system. Even through the pandemic, we still found ways to celebrate Penny’s life as a family.
As Penny grew, her brain couldn’t keep up with her body’s demands and the conditions worsened. After 8 courageous months, Penny decided it was time. She peacefully passed away in Mom and Dad’s arms from respiratory failure on June 28, 2020. Penny finally gained the glitter wings she requested and rode her unicorn Hope onto a rainbow into the sky, free from pain and into eternal happiness and love. We always told her she could do and be anything she ever imagined and could visit us anytime.
During our journey with Penny, we received an outpouring of support from our family, friends, and community, who we now call PALS! We are beyond grateful and hope to provide that kind of love and care for our medically-fragile pals and their families.
Our sweet Penny gifted us with a shining light of love and hope, and we will continue to carry that light through the work of Penny’s Pals.
-Penny’s parents, Rose and David Winsman