I am a 31 year old woman living in central NY, but 5 years ago in Chicago, our son was born.
Unfortunately, for no known or predictable reason (I was even checked the day before I went into labor, and no one anticipated any problems!), he was born two months prematurely and with a blood disorder called hemolytic anemia further complicating the health issues of prematurity, so it was a few days before we could even reach into the little box keeping him alive, find some skin not covered with tubes, wires, cords, monitors, tape, splints and other apparatus, and touch what should still have been inside of me.
It was a week before we could hold him, a blanket tightly swaddled around him, trailing an umbilical cord of electronics that connected him to his new, acrylic womb. It was a solid month of time in the NICU before we could bring him home, even briefly, before his next inpatient stay at the hospital.
Caring for any newborn has a good chance of being the most challenging, exhausting, daunting, and nerve-wracking thing a person has yet tried to do, but caring for an infant like our son was ever so much harder. He was a little fighter from the start, but his body and brain simply had not had time to get ready to face the world, let alone such a traumatic first experience of it. We had been told, “Don’t get attached. You can’t expect this child to survive.” Naturally, we were ready to do anything in our power to defy that.
Still, it was hard not to feel helpless.
The very process of keeping him alive was torturing him, because he needed a lot of iron supplements to increase the time between the blood transfusions that he always reacted badly to, to buy him time until his body was developed enough to create its own red blood cells, yet he was intolerant of iron to a level on par with severe allergic reactions! He was so sensitive to iron that he would react even if I was the one who took the extra iron supplements, and he got it, pre-digested, through my milk.
This was no ordinary case of colic. The poor baby would scream for seven hours straight, pausing only long enough to refill his lungs after expelling a complete breath in the most heart-piercing wail, and then he’d pass out for ten minutes at best before doing it all over again. You could see his torso writhing around as if a clutch of alien babies was trying to claw its way out of him, which was only made more dramatic by his belly button hernia popping out with each exhale like a turkey timer. The only thing which took him from agony to merely pain was being held against a warm body, in substantial motion, 24/7. We tried all kinds of things, from swings to vibrating, hammock-like chairs, to elaborate combinations of fake, arm-like props, heating pads, vibrations and fake womb sounds.
Nothing fooled his system. He needed what he needed, so we gave it to him. We found a variety of carriers and slings that let us keep him on us safely nearly all the time (I could nurse him from one, but changing his diapers was hard to get around), and still allowed us to do other things. We freecycled for one treadmill for each main space in the house, and constructed tables that allowed us to do things like eat and use the laptop while walking. My husband took a night shift job so we were able to meet our son’s needs in shifts.
One of the ways that our son reacted badly to the blood transfusions was to start breaking down his new red blood cells even faster, which in turn jacked his billiruben levels. Since jaundice is already a problem for premature babies, this meant our boy had, at the hospital, needed triple phototherapy and medication to help keep the jaundice from reaching the level where it causes brain damage, and bring it safely back down again. Unfortunately, they test billiruben levels through a blood test, and usually by the time things were under control on that account, he would have run out of red blood cells again, need another transfusion, and the cycle would start again.
Because of this element to his health challenges, one of his other needs once released home was to get as much ultra-violet light as possible, to serve as natural phototherapy. We were told that to improve his chances of being able to be home with us for even a month at a time, I would need to walk him in the most direct sunlight possible, exposing as much of his skin as possible, during the “worst” part of the day in terms of ultra-violet radiation, every day, for at least 3 hours a day. So that, too, is what I did.
True, my husband and I each got about two hours of sleep a day, during our son’s first half year of life. We suffered hearing loss, and I won’t get into our relative levels of sanity. But our son was able to be home with us for an entire month before he had to go to the PICU for another transfusion. It was his third by two months of age, but it was also his last. His body stabilized itself at 6 months, while two medical networks and the Mayo clinic were still trying to figure out how to save him.
Now, this miracle baby who was not supposed to survive is a healthy, happy five year old. He was left neurologically disabled by his early medical challenges, but even in the hardest times helping him live up to his potential, everything – both then, and now – is without a doubt, more than worth it.