Following the emergency C-section; waiting for confirmation that my wife and baby had survived the surgery; scrubbing into a Neonatal Intensive Care Unit; meeting a 29 week preemie who appeared far too fragile to be long for this world; my day shifted gears yet again to preschool pick up duty. My highest priority transformed from keeping our newborn alive, to pushing the playground swing the "right" way, so that our four year old didn't get mad at me.
The next day the doctors let us know that our baby could be blind, mentally disabled, or may not survive. Then I picked up our eldest from school and read a National Geographic kids book about snakes for the 4000th time:
"Yes, that's a constrictor...No, it doesn't have venom."
My family embarked on a new normal. Once my wife was discharged from the hospital she would watch over the preemie during the day. Then I would bike over to the hospital after putting our eldest son to sleep. I was just a useless observer at this stage, but I knew that my wife would sleep better with me there. The hospital staff compared us to the penguin couple from March of the Penguins who traded off caring for the egg...
Preemies personify the saying "one step forward two steps back". When our little guy had his breathing tube removed, his oxygen saturation levels steadily dropped. The doctors had to re-intubate him. Then the CO2 in his blood began rising toward a level that was unsafe for his delicate brain. The medical staff wheeled into the room a high-frequency ventilator of last resort. If that machine was unsuccessful at lowering his CO2 levels, he could die. The CO2 number crept higher still on the screen next to his bed that displayed his vital signs. I silently willed him to live as I locked my eyes on that number. The number rose even higher.
The number finally leveled off.
It began to drop.
Once the baby's CO2 levels were back in the safe zone, I returned home. I informed my wife that the preemie's blood gases were perfect. Technically, I didn't lie. I just didn't share all the moments leading up to that truth. Then I ran the eldest a bath.
The NICU floor sounds like a 1980's video game arcade except that most of the chimes are bad news. The din becomes background noise for the staff. They know that a slowing heart rate is most likely temporary, so there is an inevitable casualness in how they respond to the alarm. For a parent, especially one new to the NICU, every alarm is a potential catastrophe. It is hard to understand why a medical team is not sprinting to your child's bedside with each errant beep.
We shared a room with a family whose doctor gave them life altering news while I sat within earshot. I pretended I didn't hear the muffled crying of the grieving parents behind the curtain. Their baby would live. But, the parents would be lifelong caretakers to a severely disabled child. I am not proud of this, but the thought of being in their shoes scared me more than losing the baby.
Following the first few touch and go weeks, the hospital staff began describing our son as a "feeder/grower." This meant that he was a "healthy" preemie who just needed time to grow strong enough to breathe and eat on his own. It is hard for a parent to see a frail, skinny baby who is still supposed to be in his mom's womb as "healthy:"
The Party Crasher's first attempt at feeding by mouth
Once the word got out that our family had a premature baby in the hospital, I was inundated with preemie recovery stories. It seemed like everyone I spoke to knew someone who had been born prematurely. The preemie story arc would invariably end with the baby growing taller, stronger, and smarter than the person telling the story. I appreciated each and every one of those stories.
I started to cautiously believe that our child might be okay near the end of our hospital stay. A doctor asked if I would consent for her to train residents on our baby. She explained that there was no other healthy baby in the hospital on which the residents could practice their "well-child" exam. I consented. The term "well-child" echoed in my head long after the physician left the room.
The first time I saw my son without a feeding or breathing tube.
When we received positive news I would also feel a twinge of guilt. Why had we narrowly dodged a bullet when the baby next to us had not? I had no illusions that God wanted it this way or my family deserved a better outcome because we were "good" people. If we had lived ten minutes further from a regional medical center our baby would have died or been permanently disabled.
During the long days and nights in the NICU I would reflect on the myriad of threads that led to a positive outcome. I was born in an upper-middle class suburb that kept its property taxes within its own borders thereby lavishing the local public high school students with the choice of seven languages and a robotics lab. Meanwhile, just six miles away within the borders of a major Rust Belt city, their property tax revenue couldn't even pay for schoolbooks.
During a decade where passing as an upper-middle class, white guy was an asset for booking high paying commercial work, I was able to save up a downpayment for a house in a desirable neighborhood. The house that was only two miles from a regional NICU. The distance that saved my son's life.
When I took our eldest son to his doctor for some immunizations, I informed our beloved Pediatrician of my family's surprise addition. Following a discussion about our preemie's care, the doctor shared his experience on a medical mission in Africa where he was called to the bedside of woman giving birth to premature twins. There was nothing he could do. He didn't have any equipment. First one died. Hours later he watched the other one die. He repeated, as if to himself, that there was nothing he could do...Our doctor's thoughts returned to the exam room in Encino where we once again discussed the shots my eldest child was about to receive.
I don't pretend to understand why we have a healthy child. I don't understand why others are forced to declare bankruptcy due to medical bills while my family had good health insurance. I don't understand why geography determined that my child lived while another one died. I just try to be grateful. I try to advocate for public policies that would give others the same chances my family got. I try to volunteer my time to make the world a more equitable place.
I guess I'm trying to earn the life with which I've been blessed.
The Party Crasher dancing last week.
To pretend this post is on theme, I would like to add that biking to the hospital in lieu of purchasing a hospital parking pass saved my family about $300. During the eleven weeks I was keeping vigil at our son's bedside, the ten minute bike ride to and from hospital was the only part of the day that I wasn't sedentary. I needed that bike ride.