When one tells a story, it is usually best to begin at the beginning and allow the story to unfold as it will. . .
Once upon a time, a young man and his bride found themselves quite unintentionally pregnant with their second (his fourth) baby girl. Her name was Zaccheus until they learned she was a she, then sweet Zaccheus changed to Margaret Keller, Maggie for short. She was loved, though unknown, until her birth some seven weeks early. With her arrival, Maggie became an essential part of our family, and our hearts expanded to our new whole.
Maggie was almost two months early on her birthday, 10 December, 2004. She spent eight or nine days in the NICU at East Tennessee Children’s Hospital, mostly “feeding and growing.” She did need oxygen for a few days, but thankfully did not require intubation, as I was able to get steroids (which help premee lungs mature) prior to delivery and she had excellent peri-partum and newborn care. We got to bring Maggie home a few days before Christmas. Our 2004 Christmas card contained 2 photos: one of three wild-haired littles “speeding” on the back of their daddy’s Motoguzzi and the other of a tiny, semi-jaundiced Christmas princess, thumb perched ever so daintily in mouth. We’d had no clue we needed Maggie in our family, but what a priceless addition she was (and is). . .
Then came 10 January, 2005, her one-month-old-today-birthday. Maggie did not nurse well that morning. Her color was off. “Mommy hairs” were standing straight out, on high alert. I delivered three and a half year old Emma Grace to day care and took Maggie to our office, where she tested positive for RSV, or respiratory syncytial virus.
“Okay,” we thought, as Greg and I considered the diagnosis. We’ve done this rodeo a time or two; we can handle this. Yes, this is dangerous for little littles, especially premature littles not even due yet, but it is also our ‘bread and butter.’ We’ve got this.”
I tried nursing her while waiting on the breathing treatment to be set up. Maggie got very quiet and very still and then very dusky around her mouth. This was apnea with color change (in English, she forgot to breathe because of the virus and her oxygen salutations got too low). This is a very dangerous complication of RSV in young infants, especially in not even due yet premees . . .
I called for help and simultaneously stimulated Maggie to get her breathing, but she didn’t. I do not remember everything that happened over the next ten minutes, only snippets: our nurse and dear friend Julie “bagging” Maggie (giving her breaths using 100% oxygen and bag and mask). Salwa Alkhoury, a pediatrician who was working with Greg during my maternity leave, beginning chest compressions when Maggie’s heart rate dropped below fifty beats per minute. Thinking about PALS, and the statistic that less than two percent of children and infants who suffer full-on cardiopulmonary arrest outside a tertiary care center (specialized hospital) will survive without significant damage.
The ambulance ride was too long. Knowing every bump or pothole we crossed was life sustaining stimulation for Maggie to breathe. The emergency room physician, Dr. Ken Wicker, was waiting on us when we arrived, as were my mother and very close friend Elisabeth. Mom and Elisabeth thought I might just be drama-queening (I may have done this a time or two in the past). Elisabeth now says she knew the situation was grave when Greg walked in looking six feet plus tall and bullet proof, “game face” ON.
Dr. Wicker allowed me to hold Maggie for a moment, perhaps a last one, saying, “keep stimulating her or she will quit breathing.” He then intubated her.
Transport from Emergency Department to Pediatric Intensive Care Unit involves a five floor elevator ride, during which anything can and does usually happen. It is one of the most dangerous times for a critically ill child. Maggie “coughed up her tube” and essentially went, again, into arrest.
As the PICU team took her from the gurney, her pulse was in the forties (by the way, normal newborn heart rate values are between one hundred twenty and one hundred fifty beats per minute). Her oxygen saturations were in the low sixties. I thought, “this is it and I don’t need to see her die,” so I stepped out of the room. Immediately, I was flooded with a sense of peace – THE peace that passes all understanding. I turned around to see Greg’s knees hit the floor as he crumpled. I scooped him up, saying, “we don’t need to watch this. Let’s go to the chapel,” another five floor elevator ride back down. When the elevator doors opened on the first floor, there stood Greg’s dearest and truest friend, Tim and his wife Linda. Timme took Greg from my arms and the four of us went into the chapel for prayer.
Later that afternoon, with Maggie still very critical, but stable for the moment on a ventilator, Greg sitting with her, and my mom gone to collect the other littles, Elisabeth drove me home to get a bag together. As we drove, we planned Maggie’s funeral, Ebeth assuring me she had this and would handle it if the time came. I would never have to consider this again. To say that conversation was surreal doesn’t even begin. . .
In room twelve of the PICU, our precious Maggie hovered near death for four days. The nurses and providers in the unit worked tirelessly, quietly, and none of us were able to maintain great eye-contact. When Maggie finally rounded the corner, precious, tender tears of grief changed to sweet tears of joy. She would live . . .
Today, not only does Maggie live, she thrives. Her lungs should be riddled with breathing problems and asthma. Cognitively she should struggle with learning and school, given the degree of hypoxia she endured. Instead, Maggie has needed less than five breathing treatments total over the past ten years. She is an academic superstar, asking for more, nearly every day.
Through this experience, Greg and I learned the only proper posture for us is on our knees, singing our praises and whispering our prayers to the One who loves us so deeply and completely. The general tenor of our lives is that of gratitude . . .