There is so much I want to say, yet there are no good words.
I want our little Z to come home, of course. Yet I am so grateful for the care she is getting here.
How to describe this place?
It’s the unbelievably dedicated nurses and doctors who see and treat unfathomable conditions, who somehow manage day after long day to bring compassion to their care — i.e., the nurses who are so dedicated to the care of these babies, they work twelve hours a day with competing demands and stressed out parents and patients that won’t all make it home; the doctors who manage the care of over 50 newborns and infants with a wide range of diseases and disorders, staying on top of both cutting edge research and technology and day-to-day treatment.
It’s the mamas who come every single day, doing what little we can for our babies to feel like their mamas, sitting bedside, taking their temperature, changing diapers, folding tiny clothes, feeding them however we can. Holding hope. Counting days.
It’s the daddies who come as often as they can, before and after work and on their lunch hours, or taking care of the rest of the family with constant attention and devotion. Keeping it together. Wishing and waiting for their families to come home.
It’s the babies born too soon or too sick, too small and too frail, wrapped in wires and stuffed with tubes, hooked to monitors and electronic devices tracking every bodily function. Sleeping in rooms with four or five other babies, under dim fluorescent lights, with constant probing and testing by different people every few hours. Some have never been home or felt the sunshine.
It’s the sound of babies often crying in symphony, from one bay to another. It’s the sound of beeping equipment and the constant din of machinery.
It’s a staffer’s small gesture of kindness that brightens an otherwise dark day — e.g., the security clerk who remembers the names of family members who come day after day, the administrator who offers stickers to an exhausted toddler and makes her smile, the social worker who tries to diminish the strain on a family’s disruption; the volunteer in the playroom who plays with sick kids from the pediatrics floor.
It’s the parent kitchen where visitors and weary eyed parents head to replenish or retreat — e.g., the mom whose baby was born on the 4th of July at 24 weeks and hasn’t yet been home after five surgeries, and her dad who sleeps on lounge chairs in the hospital lobby to be near his daughter and first grandson; it’s the grandma getting a rest from sitting by her grandchild’s crib for hours because her parents have to work; it’s the woman who gave birth last week to a sick baby after nine miscarriages; it’s the dads refilling water bottles for exhausted moms.
It’s knowing that some babies don’t get any visitors, because their families are too far away or have other children or can’t get enough time off work or can’t afford to stay in SF. It’s that the nurses are the only ones to hold these babes.
It’s hearing the stories of others, confidentiality be damned, and knowing you are not alone — e.g., the seemingly healthy girl born at full term who turned blue soon after coming home from the hospital and no one knows why she has trouble breathing; or a boy born with congenital heart defects who is facing his fifth procedure in five months.
It’s my cousin — born nearly 42 years ago at 29 weeks — one of the first “bubble” babies and success stories; and his parents, my aunt and uncle, who re-lived those emotions when they came to visit Baby Z and experienced the sights, sounds and memories of their time in this very same NICU.
There are so many things that make the NICU what it is. But more than anything, to me, it’s about the fragility of life. Precious life.
The other day there was word that a 28 weeker was going to be born and headed to the nursery. 28 weeks. They had to make room, prepare, send a team out for the delivery. It so happened that as Mac and I were leaving with Jaye that day, we saw them headed our way. There was an entire team of doctors, nurses and specialists, wheeling a cart with full respiratory support, IVs, everything. Eight people in all, plus a tiny little baby, just born. As they headed towards us, we stopped talking. I held my breath as they passed. I looked at the tiny little face, covered with a respirator, clinging to life with the support of miraculous modern medicine. I literally could not breathe. I squeezed Mac’s hand and then slowly exhaled as they passed by, headed towards the NICU where that baby would begin its long struggle.
I knew how lucky we were to have made it to 33 weeks, and now 35 weeks (aka 11 days old), after our own scare at 28 weeks. I knew how lucky we were that our daughter’s little lungs were working just fine. Yet in that moment, when I saw that tiny little baby, brand new to the world, born a trimester too soon, I realized yet again how truly fragile life is.
That is the essence of this place.
And I can’t wait for Z to come home.