Thursday, August 22, 2013
For most parents, a child’s birthday is filled with unmitigated joy. For us–for me–it’s more complicated because the day Little Bug was born is also the day he almost died. So we didn’t have unmitigated joy. The overwhelming feelings we had were fear and sadness. Laura followed him to the NICU when he struggling to breathe, sickly pale grey, and it was an hour before he worked UP to turning blue. I didn’t see him for 14 hours and didn’t hold him until 10 days after he was born. So his birthday, in some ways, is like our legal marriage–a significant life event misplaced out of emotional time. Because just as our love and commitment to each other occurred years before our marriage in 2009, that unmitigated birthday joy didn’t happen until 17 days after his birth when we brought him home from the hospital, August 22, 2010, three years ago today.
So each year I’ve had mixed emotions as Little Bug’s birthday approaches. Happiness for sure, joy that he’s still here, but also sadness about his birth and those 17 days that followed. And I hope that as the years go by, and his birthday becomes an exciting event for him, that I’ll be better able to embrace the joy of it, and the pain of his birth will recede in my memory and will not feel so palpable. But I feel a bit robbed that we didn’t get the birth we had hoped for. We’ll never have that memory of him being born and lying on my chest, looking up at us, or holding him for the first time in blissed out joy. Or giving him a bath when he was days old. Or leaving the hospital together shortly after his birth.
Instead, he’s covered in tubes and needles and machines in those first pictures we have of him.
While PPNH is rare, occurring in only .1% (yes, point one percent!) of full term births, about 20% of infants die from the condition. And of the 80% who survive, about 20% of those have long-term physical or developmental disabilities. So it isn’t a small thing. And when I tell people that x, y, or z causes me to be concerned because of his birth (i.e. his torticollis, his speech, etc), and someone says back to me “well, everyone worries about their kid,” all I can think is, “ Did your child almost die at birth? Did your child have a birth experience that caused them to be followed for a year by various specialists? Were told that your kid could have developmental delays related to his birth that could appear years later?” And it’s true that I can’t know how other people experience concern for their kid, but what is true for me is that sometimes it’s just regular concern and I’m not thinking at all of his birth, and sometimes, the kaleidoscope turns, and I’m experiencing it through the lens of the NICU.
Which is not to say that I (we) are not also incredibly grateful: grateful that we lived a mile from a University hospital that could expertly treat his PPHN and that we didn’t go to the community hospital that couldn’t; grateful that we had unending and amazing support from our friends and family who visited us, sat with us, and brought us food–to this day the kindness we experienced still takes my breathe away; grateful that while Little Bug was part of that unlucky .1% who got PPNH, he was not part of the 20% who died and is not yet been part of that other 20% who is permanently disabled; grateful that Little Bug was born in 2010 and not 15 years earlier when the death rate was three times higher. So I’ve come to realize that the incredible challenge (gift?) of a NICU experience is that you get to experience the emotional whiplash of holding incredible pain and gratitude at the same time.
But still, I keep waiting for that moment when the NICU will recede into my memory and I won’t seem him through the lens of “he almost died.” And it’s hard and it pops up when you don’t expect it. Most recently, in the preschool paperwork we just filled out for him which asked for birth complications, serious illnesses and hospitalizations, and a developmental history. So I fear that he will be 16 and refusing to take out the trash, and I will say, “That’s ok sweetie, you were in the NICU.” And I know this isn’t good for him–or me–so I’m working on it. Part of that is writing this blog post. Part of that is thinking about how we want to talk with him about his birth and starting to write his birth story for him. And part of that, I think, is just waiting for the passage of time.
So today for me, August 22nd, and probably all future August 22nds, is the day of unmitigated joy. Three years ago today, we took our baby home and for the first time he slept in his own house and we were a family outside of a medical setting. For sure, the craziness of the NICU followed us home–how would we know he was OK without all of the blinking lights and beeping sounds of the machines?–and we frantically called the NICU nurse after 2 hours to report that he was sleeping, we couldn’t wake him, and he was shivering. She calmly asked what he was wearing, and we said “a diaper” and she said “well, he’s tired and probably would like some clothes or a blanket.” So we put clothes back on him, but stayed up all night to watch him breath. And things got better from there, until, unbelievably, he is a happy, joyful, sweet, sensitive, funny, smart, caring, coordinated three year old. Happy home day sweetheart! Your mamas love you.
Postscript: Little Bug just had his three year doctor appointment and got a clean bill of health! Normal hearing and vision, an ongoing concern due to the medications and treatments he received in the NICU. He’s not anemic (for the first time), his lead level is down (our landlord did some remediation in the fall) and he’s 31 pounds (43%) and 38 inches (64%). For the first time, they measured him standing up instead of lying down and gave him a johnny to wear, which he danced around in–so I guess this means he is officially “not a baby” anymore and is, as he would say, “a big guy.”