Stepping into the unknown. It’s the hardest thing to do for most people. After all, humans are wired to seek familiarity; avoid the unknown. Anxiety is perhaps an out-of-date evolutionary mechanism that has kept us safe from threat. Although challenge is difficult, the grit required to push through fear and anxiety can drive unanticipated opportunity. This can take us from surviving to thriving. This is the story of the opportunity that presented as a challenge at our small-town hospice.
When presented with a challenge, take the time to consider it before succumbing to the instinct to decline it. I am a new Nursing Manager in a small-town hospice. We were asked to assist a family who needed help in the journey of their new baby, we will call her Baby Kay*.
It was a Friday afternoon when the intake request arrived.
I happened to be off that Friday and people smarter and more experienced than I rose to the challenge and accepted Baby Kay to our facility. Although our facility’s admission policy includes any age, we had never had the opportunity to care for a neonate. Though there was initially some fear and trepidation, the journey with Baby Kay ended up being a beautiful experience that brought many of us joy, love, opportunity, growth, and increased heart.
Baby Kay came to us at 3 days old with a prognosis of days to weeks due to a terminal heart condition. Baby Kay’s family did not have the means to travel back and forth to the large metropolitan hospital where Baby Kay was being cared for; they needed Baby Kay to be closer to home if they would consider visiting at all.
This did not come without its own set of challenges. Sometimes the things that are worth doing are the most difficult to do. Watching a beautiful baby live and die is difficult.
It could have been said that we were unprepared. We didn’t have infant diapers, formula, a crib or a baby bath. Most of our nurses were not familiar with pediatric drug administration and dosing. We were not emotionally prepared to deal with falling in love with a baby, only to have to say goodbye so soon. We didn’t always all agree with regular baby issues, such as how much to hold her, or how to treat her umbilical stump.
We didn’t know much about Baby Kay’s diagnosis, it took us several explanations to understand that even though Baby Kay looked like a perfect, healthy and beautiful baby – her heart condition made it so she didn’t have long to stay with us. Although our heads understood this, our hearts did not. Reconciling these two things was an extra challenge.
Getting the “things” we needed ended up being the easy part. The sending facility provided us with a starter kit of the essentials. Our staff and volunteers filled in the rest. Baby Kay would be gifted the best of the best-brand names, special gadgets, and the best formula available. There was no lack of generosity. The joy of giving had the same vibe as the spirit that charms the holiday times.
The true generosity was in the love we provided to Baby Kay, it was given without hesitation; kisses and cuddles were abundant throughout her short life. Baby Kay was also given a nickname, she was tenderly called peanut; charms in the shape of peanuts are still displayed in our hospice and provide warm reminders of Baby Kay’s existence.
The training for the staff also came; we were provided with an in-service from the Sick Kids Pediatric Advanced Care Team (PACT.) We used this experience to connect with more training opportunities for pediatric palliative care and will be hosting a training day at our facility for Pediatric Learning Essential Approaches to Palliative Care (LEAP) this October.
We had the heart it required to look beyond our fears and put Baby Kay and her family first. We provided the solution to a logistical challenge, as well as seizing the opportunity to provide the best life to a precious soul with such a finite existence.
Baby Kay was a gift that touched our lives with the gentle grace of a butterfly’s wings. Her brief stay on this earth illuminated the power of love and resilience, as she brought joy and light to those around her, despite the challenges she faced. In her short journey, she united us all with an unspoken bond of love and grace.
Amanda Racicot
RN, Nurse Manager, Matthew’s House Hospice
* Name changed for privacy
