What this day means

It’s been seventeen years since that day, and no matter how far we’ve come, this day is a sucker-punch every single year.

The minute we found out we were pregnant with Big Man, after more than 18 months of trying, a year of fertility treatments, and one early miscarriage, I started dreaming and imagining. I knew exactly how it would go…..I never thought anything would go wrong. That just wasn’t even on my radar, not for one second.  I firmly believed once we were past the first trimester, we were in the clear and it would be smooth sailing from there until the day my newborn was laid upon my chest.

That moment, on September 6, 2000, when I looked down into a toilet full of blood, my dreams were shattered….dreams of a picture-perfect, full-term pregnancy and birth. Those dreams were gone forever, replaced by fear, guilt, the possibility of death for my child as well as myself…..reality became steroid shots to help my baby’s lungs develop sooner than later, multiple ultrasounds, strict hospital bedrest, being away from home for who knew how long, and the lovely effects of magnesium sulfate. Reality became long, lonely hours in a hospital room. Reality became odds and percentages. Reality became praying every day for one more day. Reality became the knowledge that our baby was likely going to come too soon, too small. Reality became knowing I would never, ever take pregnancy for granted again…not for myself, nor for anyone else.

My son is here, seventeen years later. It was a battle, but he’s here. And prematurity does not end when you leave the NICU. His physical scars are minimal. My emotional scars are forever. I know exactly the fight my brave boy has inside of him because I watched him fight every single day. I know just how stubborn  he is, because it’s been his timeline from day one for every single milestone.  I know how tender-hearted and caring he is because I see the hugs he gives everyone, how he connects and relates to people. I truly believe that comes from him being handled by so many caring, loving nurses for three months. I know his eyes don’t close all the way when he sleeps, and I know he holds his hands in loose fists, with his thumb out, because I spent 93 days watching him intently, especially as he slept.  I know the long, narrow shape of his head is due to him laying on one side or the other in his isolette and then crib for months on end (and is a common look for preemies who do extended NICU time). I know more medical terms than most lay-people, because we lived in the medical world for a long time.

September 6th, especially when it falls on a Wednesday, will always be a pitfall for me. It will always bring back the worst of the memories. It marks the beginning of a journey……

When the days line up

We have a whiteboard calendar above the desk in our kitchen.  I was super late getting around to updating it to August, so it was just two days ago I finally managed it. As we’re already well into August, I started with that day, and went into September. And then I wrote down  Big Man’s birthday, and it hit me…..the days line up this year. His birthday is on the same day of the week as his birth day.

I mentally count down the events leading up to his birth every year. That’s nothing new. The day I started bleeding and was admitted into the hospital, the day I found out I wasn’t going home until I reached 32 weeks or he was born (whichever came first), the day they discovered I’d lost 8 pounds in six days and the feeding frenzy began, the days I got my first, second, third, fourth, fifth, and sixth steroid shots to help his lungs develop early, the day I had the fetal fibronectin test and no one would tell me the results, and then the night I started running a very high fever courtesy of the severe staph infection which would result in his birth the next day at exactly 26 weeks gestation. I feel those days coming every year. I’m not as emotional as I used to be, but it still hits me. He’s come so very far…he’s perfectly healthy and “normal” in every way, but that doesn’t take away the toll his premature birth took.

There’s just something about the years the days line up exactly. It makes it that much more of a journey to navigate because it’s all the same as it was seventeen years ago. I started bleeding and was admitted on a Wednesday. I was told on Saturday I wasn’t going home. I was weighed on Monday and they found out I’d lost too much weight. It was on consecutive Thursdays and Fridays I received the steroid shots. It was a Friday when I had the fetal fibronectin test. I was a Friday when the fever started. It was a Saturday afternoon when he was born. I’ll relive that exact journey this year. It’s like a punch in the gut.

Don’t get me wrong – I feel incredibly blessed we came out the other side with the miraculous outcome we’ve had. He’s my amazing boy – my first born, nearly seventeen years old. But none of who he is or what he does nor how he is takes away the guilt, fear, pain, and sense of loss from his premature birth. NONE of it. I will always relive those days in my heart and mind, each and every year for the rest of my life.  And when the days line up with the year he was born, it makes it that much more difficult.

The End

While I’ve talked about the frequent weight checks for Big Man, I haven’t really talked about all  he’s been going through the last few years, and part of the reason for all those weight checks.

It wasn’t something entirely unexpected, but it was frustrating nonetheless.  Back in late-seventh, and eighth grade, nearly all his friends started their growth spurts. While Big Man didn’t stop growing, he didn’t spurt. Suddenly, most of his friends were significantly taller, while he stayed much the same height. My brother grew late. Spouse grew late. So did my BIL apparently, so we weren’t too worried. But then he fell far off his own growth curve….like REALLY far off his own growth curve. It was enough his pediatrician called in the troops – ordered blood work, and started all the referrals to any specialist applicable. We’ve spent the last 2+ years getting follow-up testing, blood work, bone age scans, visiting endocrinology a few times.

What it came down to is the fact he is just constitutionally delayed – by a bit over 2 years. That means his body is two years behind his chronological age. That’s kind of a big deal for a fourteen/fifteen/sixteen year old. He took it in stride initially, but then when even the “small” kids in his friend group grew taller than he, the struggle began. He never said much about it, but I knew it was hard for him. It was miserable for me to see the difference, to see my little big boy walking around, significantly shorter than most of his peers. I prayed continually for him to grow. Like when  he was in the NICU, we began to celebrate every ounce gained, every part of an inch grown. We watched for any sign he was entering his spurt. Days, weeks, months passed, and nothing.

He’s nearly seventeen. He’s grown almost three inches since January 1st. I really have to look up to him now. His voice has changed. His face looks different – more adult, more defined. He sleeps constantly. He eats when he isn’t asleep. He’s shot up three lines on the growth curve. His ADHD doctor now says he can’t even guess how tall Big Man will be (just a year ago, he was telling me Big Man would maybe end up at 5’9″ or so).

I can’t express my level of relief – moreso for him than anything. I don’t have to see that look on his face anymore. He’s catching up to his friends. We saw his pediatrician last week and she was surprised, but not really surprised. We’ve reached the end of this particular medical journey. He is fully in his growth spurt. Whew. We do have one more visit with endocrinology in September, just to dot that final i and cross that final t.

I’m once again reminded of his NICU days…..in the beginning, in the middle, and even towards the end, it seemed we would never see the day he would come home. The last few years, it seemed we would never reach the end of this delay, we wondered he would ever grow. This child has always done things in his own time, on his own terms. This shouldn’t have been any surprise to me at all, yet it was. But now this too will be put behind us, and I will look up at my getting-taller-every-day big boy, and be thankful.

It’s his, but he doesn’t remember

I met with a  new local March of Dimes staff-person last week. As is typical, I shared why we volunteer, told our story – how we’re connected to the mission of the organization. She asked if Big Man does his own fundraising, tells his own story. Um, no. He walks, but when it comes to the talking, he leaves that to me. Why? Well…..it is his story,, but he doesn’t remember it, thank the good Lord. He knows my version of his story. He’s heard it a billion times. He did live it, but he has no memory of it. The baby in all the photos is him, but like any other baby, he has no memory of his early years, much less his too-early, dramatic entry into the world.

He does get why  his story matters. He does  understand prematurity was, is, and always will be part of who  he is, but all the emotions attached to his premature birth belong to others, not to him. Does that make sense? He lived it, but we lived the fear, guilt, pain of having failed him in any way. He was the feisty fighter who made it while we stood by, watching and praying. He did it, but we are the ones who remember.

He compared it to when people say I’m strong for having gone through all we’ve gone through.  My response always is, “You never know how strong you are until you have to BE strong.” He just lived – he doesn’t see anything amazing in that coming from him, but instead places the credit upon us, his nurses, his doctors. I say he had a strong will to survive right from the very beginning.

I keep encouraging him to own his story. I think he’s there now. He  had to write his own obituary in his psych class recently.  He did include his premature birth in his narrative. I was a little surprised by the inclusion. If you don’t know his story, you’d never guess his story. You can’t look at him and say, “Oh, yes, he was a preemie.” You can’t tell by looking at him, in other words. Well, I have to edit that a little bit – many preemie moms I know can tell by looking at a kid, but we know what to look for as we see it in our own preemies. The general population can’t look at him and know, without being told, he was born 3.5 months too soon.

I’m thankful he doesn’t remember at all, this story of his. I’ve always said I remember enough for both of us. But I’m glad he’s owning it, making it his, because it is his, even if he doesn’t remember one second of it.

I Hit My Knees

I grew up in the church.  It has just always been a part of my life. I don’t remember a time I didn’t believe in God, pray, know that Jesus died for me. My faith is a part of me.  I developed a more personal relationship with God as I grew into my teens and college years. Life was not perfect…my Daddy had heart issues, my parents went through a divorce, our family suffered through severe financial struggles. But it was not until Big Man was born that I ever found myself falling to my knees.

When I was admitted to the hospital, just over halfway through my pregnancy, prayers went up at our church, throughout our family and spread through friends.  Once Big Man was born, the network expanded literally around the world. I didn’t realize the extent at the time. We were so caught up in the world of prematurity and the NICU. When you find yourself with your child in the NICU, you enter a new place, a new normal. I prayed continually, but not many of those prayers were very complete. They often came in brief sentences, or parts of sentences. My thoughts were so scattered, the emotions so intense I could not formulate complete thoughts. Sometimes, oftentimes, I was reduced to just saying, “Please,  God.”

When Big Man was about three weeks old, I came home from visiting him with a feeling that something just wasn’t right with him. He didn’t look right. He wasn’t acting the way he normally did.  He had more episodes than usual of apnea/bradychardia. He was fussy. He was too sensitive for me to hold him that day. I tried twice and he dropped his heart rate and stopped breathing both times. So the entire time I was with him that day, I stared at him through the walls of his isolette. When I got home that night, I went into his bedroom. I rarely went in there while he was in the NICU. It was just too hard to see a room all ready for a baby who would not be home for months. It was too difficult to think I should still be pregnant with him. Seeing his empty room brought home the fact I was a daily visitor to my tiny infant in a NICU world full of lights, beeps, alarms, IV lines, sickness and even death, rather than being a complete family under one roof. But that night, I went into his room and stood before his crib. And I hit my knees. I found the words to bargain with God for my son’s life. I cried for all we had lost. I sobbed in fear. And after a long while, I felt some small peace steal over me, like warm, comforting arms wrapping around me. I was not completely at ease, but I had someone stronger than myself to lean on.

We went back to the NICU at 10:30 that night because I was still unable to rest. Turned out Big Man had his own staph infection. It was agonizing news to receive, just when we had begun to think we were out of the woods as far as the scariest time in the NICU with a micro-preemie. Three days later, just before he was scheduled to have a spinal tap, he turned a corner. Within seven days, he’d beaten the infection.

I will never, ever forget that night. I will always remember with such clarity that moment of complete surrender. I can’t say that I never tried to negotiate with God for my son’s life again, but I knew he was not in my hands.  I’ve not hit my knees that way since then, but I know I can.

Weight For It

When you have a micro-preemie, how much he weighs is an obsession from day one. Every ounce, or part of a ounce gained, is a huge win, a step in the right direction on a very long journey. We waited, so very anxiously, to see his weight on his chart each morning he was in the NICU. It seemed to take forever for him to get back up to his birth weight of a whole two pounds. We had a mini-party when he reached three pounds. When he came home at 6 lbs 7 ozs, he seemed huge compared to the day  he was born, that is until I took him to the pediatrician for a weight check and initial visit a few days after he came home from the NICU. Surrounded by “normal” full-term babies, he diminished.

Weight checks have just been part of his life, his entire life. He received synagis shots October through April the first two years of his life to fight him getting RSV. That meant we were in the pediatrician’s office much more than other infants and toddlers. And he was weighed every single time. I always had anxiety on doctor-visit days, and would hold my breath until his weight came up on the scale. His growth chart didn’t look like any other I’d seen. He had his own way of doing this, his own growth curve.

When he was diagnosed with ADHD, and we began medicating him, regular weight-checks were re-introduced. Blessedly, the medication didn’t seem to affect his appetite. But then he fell off his own growth curve a few years back. Bloodwork, visits with specialists, bone-age scans, and even more frequent weight-checks ensued. We pushed calories, good calories, as best we could. I could still wrap my hand around his upper arm. I found myself back in that place, the one I’d been in while in the NICU…breath-holding every time he had to get on the scale or be measured. Failure to thrive, malnourishment (oh yeah, that one really pissed me off at the same time it nearly broke me), constitutional delay….all those words were thrown at him. Few asked what dad had weighed at the same age. And every time, I felt like a failure. I hated to see the look on his face when there were no gains, or the gain was too little, when he hadn’t grown since the last visit three months previous.

He has a weight-check appointment today.  I know he’s grown, thank God. But has he gained any weight? We’ll find out in a few hours. I’ll be holding my breath, and my heart will get that little hitch. Even knowing how much and what he eats every day, I wonder if it’s enough to make a difference, to make it so I don’t have to hear those words from the doctor, see that same number on the scale.

Send some heavy thoughts this way. And weight for it.

The Hand We’ve Been Dealt

Some might say we’ve been handed a less-than-stellar parenting hand. Trust me, before we got pregnant with our oldest, I didn’t intentionally sign up to have a micro-preemie nor an autistic child. And I know well too many parents who live a much more difficult parenting road, some too painful to even think about. So I don’t complain, much. Are our lives easy? Nope, but there’s never a promise of easy when you start down your life path.  You deal with the hand you’re dealt. That’s my take anyways.

I suppose we did have a choice. We could have told the doctors to not take any extraordinary  measures to save Big Man.  We could have quietly let him pass, fears of what his future might  hold taking precedent over his chance of survival. We could have walked away. We could have chosen not to fight. But I knew him – I knew his fight, even before I saw him face-to-face. I’d felt him within me, I’d heard his strong, fast heartbeat. I’d seen his tiny arms and legs on the ultrasound screen so many times. I knew long before he took his first breath we would fight as long as he had fight within him. We didn’t  know, even when we brought him home from the NICU, what his future might hold, but honestly, do you ever know what your child’s life is going to be? Life holds no guarantees. We took him as he came. We loved him, we watched him, we cried, prayed, laughed. We continue to advocate for him, raise him, fight with him and beside him.

The day (and admittedly for a few days afterwards) we found out we were pregnant with the Princess, I cried, so not ready to face pregnancy again so soon after Big Man’s birth. He was 3.5 months old. Our babies would be just a year apart, if I made it to full-term this time. I fretted, I worried, spent days full of anxiety, so sure we were going to end up back in the NICU again. I eventually reached a place of knowing our family was going to look a bit different than I’d planned, but we were blessed. And oh  how I fell in love with that little girl.

I recall so clearly the drive home from the psychiatrist’s office the day Little Man was diagnosed autistic. I called my friends. How would I do this? Why was this happening to him, to our family? What had I done wrong? Why did my baby have to suffer? A wise friend reminded me my baby was still my baby – a diagnosis did not change who he was. I would have to fight for him at times, I would have to find the strength inside to deal with the hard parts. I would go to the deepest depths when my nine-year-old told me this was too hard and he didn’t want to live anymore. I’d have to remind myself all the amazing things he’s capable of when it seemed all I was hearing was what he couldn’t do.

I guess I could have walked away, said this was too hard, too much, could have chosen not to fight for him and his needs. But I  never saw that as an option. I’m not amazing. I’m not extraordinary. We aren’t special because we continue to parent him. We deal with the hand we’re dealt. Our hand  may not look like yours, but you take what you’re given and you deal, or you don’t.  We just never imagined there was a choice for us, never considered any other option than loving our babies.