This Boy

My dear, sweet, precious boy…..How can it be you will be seventeen years old tomorrow? I’d swear it was yesterday I heard your tiny cry for the first time. But here you are, taller than me, voice deepening, you’re driving, we’re talking college plans. You’ve grown up when I was busy being a mom.

You made me a mom first. I’ll never forget the first time I heard you, and knew you’d be a fighter. I won’t forget the first time I saw you, and it seemed impossible you were the same baby that had been inside of me just a few hours earlier. I won’t forget the first time I touched you, and you held on with all the strength in your tiny hand. I won’t forget the first time I held you, finally at peace, finally able to breath after five days of watching you through a 2-inch video camera screen. Was I scared? Oh yeah…I was terrified. I wasn’t ready. You certainly weren’t ready, but there you were. You taught me from day one things were going to happen on your terms and in your time. You’ve taught me more patience than I probably cared to ever have. You’ve taught me how it feels to live with my heart outside of my chest. You helped me learn to let things go, those little things that just don’t matter as much.

I love watching you, even still.  You walk into a room, and own it, whether you believe it or not. I love the way you connect with people.  I love watching people’s faces light up (especially your grandmothers, aunts, and great-aunts) when you give them one of your famous hugs. I love your quirkiness, your laugh, your spirit. I love that you’ve learned to battle your way through challenges, how to pick yourself back up and keep going. You will always be my first baby. You lead the way for your brother and sister.

I’ve walked those sixteen days over and over each year…..those days leading up to your birth. Your life is a gift. Your journey gave me a strength I didn’t know I had. You taught me how to be a fighter, even against the biggest odds.

Do you make me crazy sometimes? Uh, yep, ya do. Trust me, I thank God for even that.

Tomorrow is your birthday….seventeen. I don’t know why that seems to be a milestone, but it feels big to me. Big changes are coming, and you’re just on the verge of adulthood. I’m almost done the biggest part of my job as your mom. But know that no matter how old you get, or how tall you get, I will always see that little baby boy when I look at you. I love you. I’m proud of you. I’m honored and blessed to be your mom. Happy Birthday!

Those Nights – Empty Crib

I’ve written lots about the days I spent on hospital bedrest, Big Man’s premature birth day, and his many days in the neonatal intensive care unit (NICU).  There’s one thing I haven’t really ever talked much of, except for with friends who experienced it themselves, and that’s all the nights I left his bedside and drove home, leaving my son behind to the care of doctors, nurses, and machines.

I was released from my hospital five days after Big Man was born. I’d gone five days without seeing my son in person, staring at the two polaroid photos we’d been given, and watching video of him on the 2 x 2 inch screen of the video camera Spouse had bought the day our sweet boy was born. We sped to his hospital where I saw him, and held him, and began a “new normal” routine.

My days were full of routine – wake up, pump, get showered, eat breakfast, pump again, and begin the forty-five minute drive from home to the NICU. I was typically there by 9, and I’d sit there with him until 3 or 4, only leaving to pump again or go have lunch during shift change. To get to and from his hospital, I faced all the commute traffic the Bay Area could throw at me, so I generally tried to get out of there before rush hour started, or stayed until long after it was over.

I hated those drives home. I hated walking away from my baby boy to go home. I hated leaving him. Many of those nights, I cried nearly all the way home. I can’t even really begin to tell you what I did at home each night…I’m sure I made dinner, maybe stopped on the way home to get groceries, paid bills, returned phone calls, walked the dogs, fed the cats, watched tv. But mostly, my brain was wrapped up in the fact my too-small boy was not with us. We were a family, but a split family. He was not under our roof because my body had failed him. He was 4o miles away. His crib in his room was empty.

Blessedly, I didn’t have to walk past his room to get to mine each night, but too often, I found myself in his room, sitting in the glider beside that empty crib, thinking about all I could have done, should have done, all we’d lost, all we were waiting for, all that could go wrong, had gone wrong. When I was with him in the NICU, I focused purely on him – how much weight he’d gained, how many times he’s stopped breathing during the night, where he was on the developmental chart, how he looked. But at night, with no baby right there before me, I felt all those awful things I wouldn’t let myself feel when I was with him during the day.

The empty crib, my empty arms, are the things I remember of those many long nights before he came home. I don’t talk about them often because those are the really dark memories of that time. But they happened, and they are part of the reality of having a baby in the NICU.

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.

I Found My Voice – Prematurity Awareness

I wasn’t much for causes as a young adult. Oh, I had opinions, and I respected people who fought for what they believed in, but I just never spoke out. Nothing drove me to that point. I participated in walk-a-thons and read-a-thons for MS and other things, but I wasn’t engaged. Nothing mattered enough to move me that far.

And then I had a very  premature baby. Life as I knew it was upended, changed forever. All my dreams were shattered. I had a baby fighting for his life, dependent upon me to advocate for him. I prayed, I begged God to save him, I watched him battle for every breath, every second of every hour of every day. I thought to myself, “If this tiny boy can fight this hard, I can fight just as hard for  him.” I discovered a voice I didn’t knew I had – a strength in myself I never knew existed.

Fast-forward four years, and my discovery of how research funded by the March of Dimes had essentially saved his life. Add to that their providing of an online support community in which I found others who spoke my preemie-mom language, who understood my fears, my anxiety, my grief, my pain. And then an outlet, a focus….we formed a family team to fundraise and walk in that organization’s annual March for Babies. I haven’t looked back. We’ve served as a local Ambassador Family, speaking at numerous events, participating in radio, news, and print interviews, my precious boy’s photos splashed across all sorts of media.

Then there came the autism diagnosis for Little Man, four years ago now. I had to again learn to advocate for my child, reach down deep inside and gather a strength I didn’t know I was capable of, to fight for my child’s needs and a place in a world completely NOT designed for him.

My voice – both written and spoken – was found through my children. I didn’t choose this path. I didn’t choose these battles. But they are our story. I speak out. I write. I advocate. I research. I help others just starting similar journeys. More than this, I’ve been given the courage to use my voice in other areas of life.

Today is World Prematurity Awareness Day. I’m wearing purple in honor of my beautiful survivor, for all those other precious babies who have come out the other side of a too-soon birth, and those for whom their early birth took them from this earth. We in this house are perfectly aware of Prematurity. We’ve lived it. But the voice I gained sixteen years ago, and the voice I have continued to develop over those same sixteen years, enables me to reach out and help others around me be aware of the severity of the problem of prematurity.

The Little Things – PTSD and the Preemie Parent

There have been numerous studies showing parents of preemies suffer from PTSD. Makes sense – you go through something so full of trauma, guilt, fear, anxiety, living minute-by-minute – you’re going to have ongoing emotional and psychological fallout. Most days, I don’t think about what we went through; it has been sixteen years after all since Little Man was born so early. But all it takes is one little sound, smell, sight and I am right back in those moments. I feel it, all over again. I forget we’re where we are, and I’m back in those days of fear, highs and lows, two steps forward and three steps back, having everything out of my control.

My mom had open heart surgery in 2009.  I went up shortly after the surgery itself to be there for her. She was in the critical care unit. I was in her room with my sister, all of us talking, when someone in a room nearby must have dropped oxygen sats and heartrate. The bonging alarm went off. My heartrate accelerated, and I broke out in a cold sweat. I heard that bonging every single day in the NICU, often coming from my own son’s monitors. You go into panic mode every time you hear that sound. I can still hear that sound in my mind. I will never forget that sound. I doubt I will ever hear it without reacting with panic.

I shave my legs almost every single day (TMI – sorry not sorry). If I go more than 48 hours without shaving my legs, I get twitchy. The reason? When I was on hospital bedrest, I went over  a week at a time without having my legs shaved. I can’t stand that feeling. It reminds me of laying helpless, lonely, bored, and terrified in that hospital bed. Same goes for washing my hair. I can barely make it 48 hours without washing my hair because it takes me back to those 16 days in that hospital room.  Seemingly little things, yes? But still – little things that can set me off all over again.

I spent months reaching for the foot pedal every time I went to wash my hands. If I smell that antiseptic soap ever, I’m back in the NICU, washing my  hands before I walked through the double-doors into the NICU pods. Half the time when I wash my hands, I still mentally sing the ABC’s as we were taught early on the NICU – because that’s about how long you’re supposed to lather and wash to make sure your hands are really clean. If I come across a foot-pedal sink, I’m back in the NICU too.

Seeing pictures and videos of preemies in the NICU send me right back to Big Man’s early days. There’s a distinctive way NICU babies move with all the wires and tubes connected to pretty  much every extremity. I’m reminded one of the things I hated the most – that board strapped to his arm or leg to keep the lines straight. God I hated that board. I hated the mass of tape over and around his mouth to hold the ventilator and feeding tube in place. I hated the nurse who ripped the tape off his face one night, tearing off layers of his too-thin skin, leaving him with a dark splotch on his face he carries to this day. I hate that I still cry when I think about this.

We played music for him throughout the day as soon as he was able to tolerate the stimulation. I had to toss those cd’s when we got home from the NICU. I couldn’t stand to hear those songs anymore. When I heard them, I could smell and hear the NICU again. I still get the sweats when I hear any of those songs, which blessedly isn’t often at all, but still.

Most days, I don’t think about the NICU, or hospital bedrest, nor all the attendant fear, grief, anxiety, pain, heartache, stress. But those little things, man, they’ll do  me in in a heartbeat. PTSD for parents of preemies – it’s a real thing.  Just ask a preemie parent.

Is this the next shoe?

I spent the first five or six years of Big Man’s life waiting for the next shoe to drop. When you have a micro-preemie, there are lots of shoes involved. Because I felt like we’d escaped his early birth and subsequent NICU stay relatively unscathed (physically and developmentally), I was certain there would be plenty of shoes falling from the sky. We couldn’t be that lucky, right?

He was diagnosed with high muscle tone on his left side when he’d been home just a few months. High muscle tone can be an indicator of cerebral palsy, often a result of very premature birth. We used massage and physical therapy, and within a few months, the high tone was gone. He had a speech delay at 15 months. We used sign language, sang and read to him constantly, incorporated some speech therapy, and by 2.5 years, we were begging him to stop talking. At four, he was diagnosed with reactive airway disease, which became full-blown asthma at 5 years old.This wasn’t unexpected – there was damage to his lung tissue from the oxygen he needed to survive. It was still a big speed bump for us. He would go from zero-to-pneumonia within a matter of hours every time he got a cold, an allergy flare, or the flu.  But then daily maintenance meds, and extreme vigilance became the norm. We tossed aside that shoe. At eight, he was diagnosed ADHD, and we learned he had something of a visual processing disorder. He got meds, and he got glasses. He became much more successful in the classroom, much more confident in himself. He was at 80% higher risk of ADHD just by fact of his prematurity. Genetics also played into that hand.

He’s a small guy. When he fell off his own growth curve a couple of years ago, we started with x-rays, bloodwork, a trip to the endocrinologist, protein shakes, diet changes, etc. Turns out he’s just dealing with delayed puberty. Again, fabulous genetics, from both parents. But it was a process. And I couldn’t help but wonder if this wasn’t another shoe. You know that growth chart doctors parade in front of parents at every visit? Yeah, that. Well, he wasn’t even on that chart for height or weight until he was well past three years old, and even then, he hovered below 3%. He still hangs out down on the lower end. His BMI isn’t close to being on the chart. That teeny, tiny, 2 -pound, 15 inches long baby is still a long, skinny young man. Another shoe….a handle-able shoe, but it still feels like a shoe.

With some consistently funky bloodwork, we were sent to a specialist at Children’s who put him in a study. Part of that study was a body scan, including bone density. I thought nothing of it. The initial purpose of the scan was to compare muscle mass, bone mass, and fat mass in his body to determine if he were at healthy levels. Do you see another shoe? I didn’t, until the results from the study came back. He has severely impaired bone density. I didn’t know what to do with that. I was calm about it for a couple of days, then kind of started to process what that might mean. Impaired bone density = easily broken, right? He’s an active kid. And he’s a normal kid. Rough-housing, falls, trips when he’s racing – they’re all normal parts of his day. So now we have supplements, and a trip back to endocrinology.

I thought  I was doing okay with this. It’s just another bump in the road, right? But then my preemie-mom-mind went there….Could this be another shoe? He’s a 16 year old, former 26 weeker. He’s kind of on the front end of micro-preemies being considered viable, and fought for. The medical community is still learning the long-term outcomes of saving these littles. Trust me, in NO WAY am I saying not to save them, give them a fighting chance. I’m just saying, when your baby is born at 24, 25, 26 weeks, they can’t tell you how that’s going to look when he’s 15 years old, 20  years old, 50 years old. Of course, not any one of us, preemie or no, knows what our lives are going to be like long term. So there’s that. But I couldn’t help but ask, could this new thing, this impaired bone density, be a result of  his premature birth? Is this some outcome they didn’t know could happen?

I wouldn’t change a thing done to save him way back then. Oxygen, steroids, lipids, caffeine, blood transfusions, vitamins, and antibiotics were a way of life for 93 days. Those are the things that saved him. But did one of those things do this? We’ll never know. And in all honesty, it doesn’t matter. I wouldn’t undo it. I have my baby. He came home, and he’s a thriving, normal teenager.

I do see that shoe hovering over my head. I keep looking up at it, waiting for it to fall. I don’t know if this new wrinkle is a shoe, but when you have a micro-preemie, pretty much everything the rest of your son’s life will look rather shoe-like.

That day

It’s Big Man’s birthday today. I was scrolling through my Timehop app, reading my posts on his birthday each  year. To a point, every single one of those posts mentions his early arrival, survival, dramatic start, and how proud we are of how far he’s come. It seems that day, beyond being his birthday, will always carry that part of it, that part of his story.

I can’t consider his birthday without remembering or thinking about how he came into this world. I can’t talk about his birthday without bringing up his beginning. Every time I think about how quickly he’s growing up, I think about what exactly that means.

That day will always be a part of his story. It will always be included in my narrative of his life. I can go for days without thinking about it – how his life started. I get caught up in the normal day-to-day stuff of having a teenage son. But when milestones hit, I always go back to that day. And I need people to know just what that milestone means, why I get a little crazy about each and every one. I want them to understand just how far he’s come, why that matters, what a miracle he is, how incredible it is he’s here.

I can tell you almost exactly what was happening at any given moment this day sixteen years ago. I remember my thoughts, my fear, my denial. I remember the pride in Spouse’s voice when he announced we had a son. I remember the tiny cry Big Man gave just before he was intubated. I remember thinking the fact he’d made a sound meant everything was going to be okay. I remember the words of the neonatologist as he handed us a polaroid photo of our son – him splayed, naked, tubes and wires attached to all parts of him. I remember how red he looked because he didn’t have all his layers of skin yet. I remember him grabbing onto my finger. I remember hardly hearing the words of the doctor and nurses as they loaded him into the ambulance that would take him to his NICU ten minutes away. I remember that gut-wrenching goodbye, not knowing when or if I would see him again. I remember feeling I’d failed after all –  my body had failed him. I remember the first time a nurse called me his mom. I remember my nurse rolling the breast pump into my room, showing me what to do, and making sure I was aware how vitally important it was I pump and get the breastmilk to my son. I remember how surreal it all was.

That day, this day…..It’s his story. It will always be his story. No matter how many birthdays pass for him, I will always think of and mention that day. I will always be aware his start, how far he’s come, what an amazing gift his life is.