Kaden Shivers turned four months old on July 28, and he did it in the NICU at Egleston. Born at 26 weeks gestation and weighing only 1 pound, 6 ounces, he has spent all of his short life in the hospital. He’s been through multiple surgeries, breathes with the help of a ventilator and has a long road ahead of him. His parents, who have been by his side every step of the way, marvel at the little fighter who now weighs more than 7 pounds.
I hear often from parents that they’ll never forget a single moment spent in the NICU. But it’s easier to do than you might think. It’s the worst time in a parent’s life. Their child is incredibly ill, they have medical terms and procedures thrown at them many times every day and they still have to deal with life outside of the NICU. It can all become a blur, with days running together and things quickly forgotten. That’s why we write in bedside journals for patients who will be with us for more than a few days.
When a baby comes into our NICU, one of the nurses, usually the primary nurse, will grab a journal and start telling the story of his or her stay with us. We like to think of the journals as their first baby book. Many parents and families come to us from far away. With work schedules, other children at home and the demands of everyday life, it’s often not possible for parents to be with their new little one all the time. The journals help them understand exactly what is happening to their baby, both when they are and are not able to be there. The journals also help mom and dad explain what’s happening to friends and extended family members.
For families to fully understand their child’s journey, it’s important to tell both the good and the bad. Milestone moments, such as growth spurts and first smiles, are captured along with surgeries, medications, setbacks and bad days. Many journals include locks of hair from a baby’s “first haircut.” It doesn’t matter that the first haircut is usually the result of shaving a baby’s head for an I.V.; it’s still a memory for the parents to cherish. To illustrate each story and show progress, we also include photos taken throughout the baby’s NICU journey.
The first journal entry is typically a letter written from the baby to his or her parents, explaining a condition, how he or she is feeling that day, how happy the baby was to be held or visited by mom or dad, and what everyone is doing so he or she can get better. Many staff, including nurses, doctors and unit secretaries will also include personal notes to the babies, telling them how they’re caring for them and offering positive thoughts and encouragement. Often, we list the names of everyone who touched their lives during treatment. During holidays, we’ll dress the babies in cute costumes or decorate their beds for a photo op. And, when possible, we include handprints and footprints on handmade cards for celebrations like Mother’s Day and Father’s Day.
The journals also serve as a beacon of hope. My colleague, Myrtle Ryan, started the “Ticket to Home,” which is placed inside the journal along with an outline of exactly what the baby will need to do in order to go home (gain weight, breathe without the ventilator, etc.), as well as what the parents need to do to take their baby home (take a CPR class, learn how to maintain a feeding tube, etc.). This gives the parents something tangible to work toward. For those babies who eventually go home, the journal serves as a record of medical care and progress.
A sad truth of our world in the NICU is that not all of our babies will make it home. For these babies, the journals provide parents with lasting memories of the lives of their precious little ones. The final entries into these journals by the people who cared for and loved their baby can serve as a type of closure for the parents.
For every baby, the journals are a testament to a tough beginning, an incredible fight and memories to cherish. And while it’s not a written part of our job description as NICU staff, many of us feel that it’s our duty—and indeed, privilege—to tell these special stories.
Since the program began, our NICU nurses have graciously donated the journals, photo ink and scrapbook materials used to create the journals. Here’s an opportunity to support their efforts.