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Because of my tiny patient, the words from my favorite song, "Edelweiss," took on new meaning.
ALTHOUGH BORN ON JANUARY 1st, little Ferd didn't make headlines as first baby of the year. His mother was in jail; his father, not around. He'd been intubated shortly after birth and transferred across town to the intensive care nursery where I worked. Because of persistent newborn pulmonary hypertension, he was on a mechanical ventilator and receiving inhaled nitric oxide.
Ferd had gloriously curly black hair, almond-shaped black eyes, and a round brown face. He caught my heart the first time I laid eyes on him, and I signed on as his primary nurse on the evening shift.
Caring for Ferd wasn't easy; he was a feisty boy. Whenever those bright black eyes were open and aware, he seemed to look right through me. I'd run my fingers through his curls-just like my daughter's when she was a baby-and sing to him.
All the babies in the nursery quieted down when I sang. The other nurses liked to tease me, but I kept singing and Ferd kept listening. Sometimes I'd joke that maybe he was from another planet where everyone breathes nitric oxide. He'd smile as if I'd guessed his secret.
Over the next few months, Ferd got stronger, becoming a funny, active baby who loved being held. I was glad to oblige, rocking and singing to him.
Then Ferd's physician decided to try oral sildenafil (Viagra) as an off-label treatment for pulmonary hypertension. This potent pulmonary vasodilator allowed us to wean Ferd from the nitric oxide. Receiving only oxygen via nasal cannula, he was moved to his own tiny room, where we whiled away the summer rocking and singing show tunes. Many evenings I lulled him to sleep with my favorite, "Edelweiss" from The Sound of Music.
Come September, the nurses excitedly began preparing for Ferd's discharge. He was sitting up on his own but still dependent on supplemental oxygen. He was assigned to a wonderful foster mother whom we began teaching about his needs for oxygen, sildenafil, and tube feedings.
Ferd's daytime nurse and I had come to love this little boy and called each other his "mommies." But we also knew our place as his nurses, and we proudly watched his relationship with his foster mother blossom.
But Ferd never went home with his foster mom. In October, his condition suddenly deteriorated. At first, antibiotics seemed to be helping, but the health care team worried that if he went back on a ventilator, he'd never come off. When I learned that a conference was scheduled on Tuesday to make decisions about his care, I made sure I was assigned as his nurse that day.
Monday morning, stopping at the bank, I felt a sudden rush of emotion and a gripping sensation in my heart. I knew that something awful had happened. When I arrived at work, I learned that Ferd was back on a ventilator and critically ill.
When I told his other "nurse-mommy" about my strange feeling that morning, she told me that he'd been intubated at 11 a.m.-the exact time I'd entered the bank.
On Tuesday, the conference room was packed with neonatologists, a pulmonologist, social workers, nurse practitioners, Ferd's court-appointed surrogate, and his two primary nurses. A bioethicist asked what Ferd's two "mommies" thought should happen. Speaking as one, we said, "Let him go. He's had enough." Everyone was in tears, but we all agreed it was the right thing to do. Ferd's surrogate and physicians decided to extubate him the next day and provide comfort measures only.
For almost the whole shift that evening, I held Ferd's hand and sang to him: "Edelweiss," show tunes, lullabies, anything I could think of. Heavily medicated, he mostly slept, but he closed his fingers around mine and held on tight.
Near the end of my shift, he opened those black eyes and gazed at me. "I love you," I whispered. "It's okay, Ferdie, you can go now." But he was still alive when I went home at 11:30.
I got the call the next morning. Ferd had died during the night, after his two nurse-mommies had gone home. I cried for my Ferdie all morning.
That evening, hoping to cheer up, I watched a TV special about Rodgers and Hammerstein, composers of The Sound of Music, and sang along with their tunes. I learned that during rehearsals for the show on Broadway, Hammerstein had been diagnosed with cancer. A film clip showed him singing the last song he ever wrote: "Edelweiss." Hearing the song took me back to those evenings when I'd sung those very words to my Ferdie and to the place he'd always hold in my heart:
Blossom of snow, may you bloom and grow, bloom and grow forever.
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