Dark Places

November is Prematurity Awareness Month. I’ve been participating in a 30-day photo challenge, with a list of photos from our NICU time….everything from photos of him with all his tubes, to his feedings, first outfits, and so on. It’s been something of an emotional haul, going back through his baby scrapbook and all the other photos we have from those 93 days. Most days these days, I can recall his early birth and NICU time without getting caught up in the horror of that time. I have a normal, healthy 17-year-old young man. I have much to be thankful for, and he miraculously came out the other side, so those bad memories can take a backseat for the most part.

Here’s the thing….once you’ve lived that, you’re changed forever. There are deep scars that remain. And once in awhile, something will happen…a song, a sound, a smell, a photo…will take me right back to that time. Once in a greater while, something will really get to me, and I go to those dark places I rarely allow myself to go. It’s like a punch to the gut, my breath catches, and my heart races with grief and fear.

Those dark places are pretty intense and painful.  I hate that I fully believed my son was already dead the minute I saw that toilet full of blood. I feel I’d lost faith in him, his life, his will to fight. It messes with my mind, brings up all the what-ifs, should haves, could haves, would haves.

I was away from him for five days following his birth. God those days haunt me. Logically, I know it was completely out of my control, and it could have been so much worse. There was one point, due to the need to properly treat the severity of my staph infection, the doctors discussed keeping me where I was for four weeks so they could monitor my recovery closely and administer the strong antibiotics I needed in a controlled environment. I can’t even imagine what that would have been like…four weeks locked up in that hospital, ten minutes away from my son’s hospital, unable to see him. As it was, five days nearly drove me insane. I wasn’t there for him. Spouse saw him, touched him, held him, knew how to find him in the NICU, knew his doctors, knew the routine, knew what our son’s face looked like. Spouse had to show me all of that when I did get out. I still feel guilt over that. Stupid guilt, yes, but guilt nonetheless.  I hate those five days. I hate how they make me feel when I let myself go to this particular dark place.

When I did get out of my hospital and went to his, they could have told me any boy in that NICU was mine and I would have believed them. I had only seen him for a few minutes before he was transported to his NICU. Most of his face was covered in tape. I hate knowing I wouldn’t have recognized my own child if  you’d lined up five boys in their isolettes in front of me.

I didn’t spend 93 days and nights in the NICU with  him. The world continued outside, and I was encouraged to take care of myself…..go home at night, get rest, do life as much as possible. I dreaded leaving him every evening. I hate that I left him to the care of doctors, nurses, and machines while I went home and did normal stuff….bought groceries, made meals, cleaned the house, fed the dogs and cats, watched tv, and slept. I hate that the world went on, that I participated in any “normal” while he lay there battling to live.

There was one point he was developing an infection of some sort. They needed to do a clean blood draw, and then transfuse him. I broke down and fell completely apart. He was maybe three weeks old. I’d only been in the NICU for a little over an hour that day, but I left. I couldn’t take it. I could see his tiny face, red with anger and hurt. I could hear his muted cry, and I couldn’t take it. I went home and just cried…I’d failed him again. I wasn’t there for him again.

See…..dark places. They, as much as anything else, are a part of premature birth. It is rare I let myself go to these dark places. They are my worst memories, my worst fears, my deepest pain from his prematurity. They shouldn’t matter anymore, shouldn’t affect me anymore, but they do……very rarely, but they do.

The irony in awareness

I may  have mentioned Monday is World Prematurity Day, or that November is Prematurity  Awareness Month. As I’ve been sitting here reading blogs taking me back to Big Man’s early days, watching the video of the dad singing to his 24-week son who later passed away, and have thought and thought about the overwhelming emotions from Sunday’s race in Berkeley, I found the irony in bringing awareness to premature birth. For while I would have you understand what it is to be the parent of a preemie, to live through the NICU, to watch and wait as your child grows to see what the long-term outcomes will be…while I would have you understand the urgency of the need for help so someday no other family will live what we’ve lived, I would that you would never, ever know this journey firsthand. And therein lies the irony.

On Sunday, Spouse and I will attend a March of Dimes fundraising event, the Signature Chefs Auction. We will mingle with the guests, and tell our family’s story. We hope it will help raise lots of money towards research to help bring babies into this world healthy. I’ve spoken to groups numerous times before, shared our story more times than I can count. Typically I go into it with the goal of making one person cry. If I can make someone cry, I know I’ve touched them. They won’t forget us, won’t forget what we stand for, and hopefully won’t forget to give to this organization. But in the back of my mind, I always pray they don’t know what it’s really like to stare at your child through the walls of a plastic box for months on end, to know what it is to see your child stop breathing and his heart rate plummet, to watch your child struggle to do the things you know his body and brain are just not ready to do, to know in your heart you’ve somehow failed him when your body couldn’t do what it was supposed to do.

Years ago, in the online community for NICU parents, many of us wrote our children’s stories in the form of an Imagine poem. Here is mine:  Imagine  It is a powerful thing to ask someone to place himself in your shoes, to imagine what it was like. But imagining and living are two different things. And while I may ask you to imagine what our journey has been like, I will pray you never have to do more than that imagining.

The irony of raising awareness is just this: wanting people to understand what it is you are working on raising awareness of, but hoping they never have firsthand knowledge.

Awareness

November is Prematurity Awareness Month. Unless you have a preemie though, or are friends/family of someone who has a preemie (and whom also knows it’s Prematurity Awareness Month), you may not be aware this is your month. I  have a preemie. I know it’s Prematurity Awareness Month, and I take it as a personal responsibility to make you all aware too. Hah!

Every month on the calendar has some kind of “awareness” now attached to it. Oftentimes, there are multiple awareness campaigns going on each month. What month is yours? Do you know? If you really look, I’ll bet you can find something in almost every month that has affected your life. Just as far as I’ve looked, I get April, October and November, and that’s without investigating further. So how do awareness campaigns work, and why do we have them? I’m still figuring that out. We are slammed with so much information on a daily basis. We are approached by so many organizations asking for help, doling out data, wanting us to be aware. So you might know about prematurity, but do you know what it really means?

I had no clue what it really meant to have a micro-preemie. Like many people, I thought preemies were just tiny babies who just needed to grow. I thought preemies just got to wear those really cute, really tiny diapers and clothes. I was clueless….until I was gushing blood and admitted to the hospital just over halfway through my pregnancy. Then reality struck when numbers and odds were being thrown at us for his mere survival, when food to help me and my baby was pushed at me every other hour for sixteen days, when I was given steroid shots six times to help my baby’s lungs develop early, when someone asked me on the day of my son’s birth if I wanted them to attempt resuscitation, when I watched my child fight for his very life, when we spent years in follow-up care, not knowing what his outcome would be, when every cough/cold/flu brought pneumonia, when even now I worry what shoes wait out there to drop even fourteen years later. Preemies are sick babies who need machines, medicines, and 24/7 care to stay alive. Parents of preemies wonder if they even truly are parents until their babies come home, if they come home. Parents of preemies don’t get to hold, change, or feed their babies like normal parents of newborns. Parents of preemies must wait until their baby is stable enough to be held. They must ask permission to even touch their baby. Parents of preemies learn what each beep, alarm, and tone of each machine attached to their child means, and even years later will react when they  hear those sounds. Parents of preemies learn how to properly wash their hands, and will continue to reach for the floor pedal to turn the water on even months/years after leaving the NICU. Parents of preemies worry at the gain of loss of parts of ounces. Parents of preemies want to show their pictures of their precious child, but are terrified of peoples’ reactions. Parents of preemies best friends are their NICU nurses. Parents of preemies struggle to find someone, anyone, who will just get it. Parents of preemies will tear up at even the most mundane of their child’s activities, because there was a time they didn’t  know if their child would live much less be able to do something so normal, like walk, run, talk, eat, see, hear, breath on his own, play t-ball or soccer or golf. Parents of  preemies too often watch another parent of a preemie make the brutal decision to take their child off life support and say goodbye. Parents of preemies know it can all boil down to a roll of the dice whether their child survives.

One in eight set of parents knows what it is to be the parents of a preemie. ONE IN EIGHT!!! What exactly is premature birth? It is, by definition, birth before 37 weeks gestation. Early preterm birth is before thirty-two weeks gestation. Very early preterm birth is that before 26 weeks gestation. While the rates of survival of micro-preemies is continually improving, the long-term results of such births is still being researched. When I was admitted, we were told our 23 weeks 4 days baby had a less than 10% chance of survival, and zero chance he would survive without lifelong medical and developmental problems. When he was born at 26 weeks, he had an 80% chance of survival, less than 50% odds of surviving without lifelong medical and developmental problems.

This is what it means to have a preemie.

It’s November. It’s Prematurity Awareness Month. November 17th is World Prematurity Day. We will spend this month honoring our preemie, celebrating his life and the life of other survivors, and remembering those preemies whose lives ended too soon, their tiny bodies unable to overcome their too early beginnings. teamrooback2-whitebackground

Big Man on his birth day

Big Man on his birth day