I've been told that Handy Man brought in a digital camera to the recovery room so I could see our newborn son on the tiny 1.5" screen but I don't remember that. I remember the words "NICU", "think there's a problem with his heart", and "they think he should be baptized". My baby boy born three months before his due date was on a ventilator. He was born silent; too small to cry. He had a minor heart problem, a small opening, but it did not account for oxygen levels in the 30s. Thirty percent. He was blue and not responding to the efforts from the ventilator. In addition to his extreme prematurity, Trouble had Pulmonary Hypertension, Patent Ductus Arteriosus and was low birth weight for his gestational age (IUGR). He was on total "life support". Machines breathed for him, tubes fed him, probes and wires snaked out from his belly button, both hands, ankles and for a brief while, his head.
And so I missed it. His baptism was done in haste by the hospital chaplain, witnessed by a cardiologist, a neonatologist, a respiratory therapist, 2 nurses, his father and my best friend. But not by me.
He was put on an oscillating ventilator, given experimental levels of Nitric Oxide, a synthetic lung-moistening drug called Surfactant, Vi@gra, and hosts of multi-syllabic medications over the next three months. On day of life 11, it was discovered that the ventricles in his brain had filled and pooled with blood. He had a very big brain bleed. The hole in his heart closed after the second try of medication. He responded well to the Nitric Oxide. He received many blood transfusions. He had a PICC line, several IVs, daily heel sticks and chest xrays. Slowly though, the IV pole lost its ornaments, he was able to tolerate feedings, he was moved to a regular ventilator. On his due date, after 3 months in the NICU, Trouble came home. He weighed 5 pounds, 1 ounce that day.
Ultimately, this story has a beautiful ending. But not without a lot of middle stuff. I cringe inwardly when well-meaning people say things like, "it's amazing what they can do these days!" or "but he's fine now". Yes, it's amazing what they can do. Yes, our sweet little miracle, "Trouble" is fine now.
But there were quite a few days in between his birth and baptism until the layperson's "fine" prognosis. Premature babies are not just small babies. They are underdeveloped. And it takes years to develop what can be done perfectly in the safe home of a mother's womb if given enough time.
Trouble spent over 3 years as an oxygen-dependant child. His first 17 months he was also on an apnea and heart monitor - first at all times, later only at night or in the car - that would screech at us when his heart rate dropped or he stopped breathing. He had therapists with their own initials - PT, OT, ST, DT. He had a medication schedule so complicated we had to chart it.
Everywhere he went he was a spectacle - not that we went much of anywhere. The 'poor child' with tubes up his nose and stickers on his cheeks, dragging feet of hose behind him anchored to a tank in his stroller. Children stared. Grandmothers looked and smiled at me with faces of sympathy. At home, he had 50 feet of tubing. As he grew older and mobile he would get tangled around chairs, drag toys, and frustratingly reach the end of his tubing. Like a dog on leash, he would lay and howl while his big brothers roamed freely around the house. It was hard. Many days it felt like an unfair burden. I cried. A lot. He was so good-natured, tolerating years of those stickers on his face and tubes up his nose.
He celebrated his first, second and third birthdays on oxygen. No candles on his cake. No party. No germy McDonald's playland. No mommy-n-me classes. No preschool. No slides. When he was 2, he added glasses to his list of necessities he sported because he was cross-eyed. The very thing that had saved his life - oxygen - damaged his vision.
And you'd think a child forced to do all this would be unhappy, rotten, scarred. He wasn't. He was the happiest baby I've ever known. He charmed the doctors, nurses and therapists with his huge dimples, easy laughs, and flirty eye lashes. He was social, happy, loved his brothers, loved his books and his toys. He finally learned to walk shortly after his second birthday, and hasn't slowed down since.
I write this essay not for sympathy or even for empathy, but for understanding. Understanding of prematurity in general - kids aren't "fine", it isn't easy, this doesn't just happen to crack moms or those who don't see a doctor. Prematurity happens to healthy mothers who do everything right. We need answers for why this is happening to 1 in 8 births in the US.
But I also write this for understanding for Trouble.
Quite simply, he is a miracle. That word is used flippantly these days. But in the true sense of the word, my son is a miraculous creature. So when he wakes up in the morning and runs around the house swinging a light saber, it nearly takes my breath away. When he dresses himself, sings the alphabet, or says, "I love you, Mommy", I find a gratitude inside so deep and so sincere that I can't help but to know joy.
I used to long for the day when we could be an "anonymous family", to not stick out like a spectacle everywhere we went. And although I would never go back to those days of hauling tanks and equipment, some days I want to shout to the world so they understand how special this little boy is. I longed for him to be a regular kid at the park, and now that he is, I want to wear a billboard exclaiming how much he's overcome to be there. But still, deep in my heart, I find it nothing short of amazing that he is just a regular kid on the playground. Amen!
