I wasn’t able to hold my daughter until she was seven weeks old. At her birth, four months premature, Ramey’s skin was so thin, and her nerve tissue so disconnected, that even the gentlest touch from me would stress her to the point of coding.
I couldn’t hold my little girl, and so I watched.
I watched Ramey develop on the outside of the womb: Miniature elephant flaps grew cartilage and slowly rounded to form perfect ears; eyebrows took shape over still-closed eyes.
I also watched the team charged with Ramey’s care. I observed them as they handled, swaddled, and monitored their pint-sized patients, all while assessing and evaluating various indicators, recognizing and responding to change.
I watched intense, sometimes hour-long sessions at shift change to review event details for the next crew, the departing shift talking and the arriving shift taking scrupulous notes.
I witnessed communication and collaboration between locum, employed, and independent providers. I overheard daily phone calls to the local meteorologist to determine the current barometric pressure so machine settings could be adjusted correctly. I observed the team making careful manual calculations for medication dosages.
I watched as therapists and technicians arrived in the department, putting their skills to use and documenting their service by hand, learning about Ramey from the NICU staff, becoming engaged in the fight, and literally loving my daughter to life as they performed their work with her. She had a mountain of tests: multiple chest x-rays and blood work daily, even hourly. The team coordinated the results and sequence—a time-consuming process that took a highly organized and skilled nursing staff.
They didn’t have the technology we have today to create an environmentally correct space. Ramey was in an open warmer bed, and the staff covered it with Saran wrap because the slightest movement of wind from someone walking past would overstimulate Ramey’s senses, causing apnea and bradycardia.
They turned down the lights for the same reason. Staff members worked in a dark and whispering environment, adapting their work culture to meet my daughter’s needs. All of this was critical to Ramey’s brain development, and she responded and thrived under the care of her dedicated team.
After being discharged from the NICU, Ramey spent her first three years with therapists, heart monitors, and oxygen tanks. She spent her childhood years pushing through numerous barriers with determination, education, and a sweet attitude. Her neurologic challenges have, at times, been her worst enemy. But they have also been her strength, as they’ve made her who she is today. She has learned to keep pushing when the task gets hard, to love others no matter how they treat her, to laugh at herself when she feels more like crying, to set big goals and work long and hard to achieve them. She homeschooled herself through high school; today she has completed her first associate degree and has a full-time job and her own apartment.
Twenty years have passed since our time in the NICU, and in that time technology has improved and enriched the healthcare experience—for providers, staff, and patients—in a multitude of ways. The crossover from administration to clinical applications has expedited information flow, which, of course, provides better outcomes, increased patient safety, and consistent quality measures. Electronic health record (EHR) technology provides instant calculations and data that take the place of those bygone calls to the local weather station and manual calculations for medicinal dosage. E-messaging between providers eliminates phone tag and all of the other time factors that can become barriers to efficient interoperability.
But with all our advances in the digital age, healthcare, at its finest, is still a deeply human endeavor.
Every patient has a story. Perhaps the reason for this blog post is simply to tell one. Because stories heal, stories change the lives of our patients, and stories are the foundation of human compassion and connection. I share Ramey’s story as a reminder, to all of us who are working daily to determine the best use of our EHR technology, that even the most advanced technological processes can never replace our inherent human ability to nurture, engage with, and care for the patients we serve.
Happy Holidays from the team at Halley!