It didn’t feel right

I remember distinctly the first, and the second time, someone called me “Mom”. It was hours after Big Man’s birth, and I was being wheeled to his bedside just before he was transferred to his NICU. A nurse said, “Here comes Mom.” I looked around. I didn’t feel the least bit like a mom. I certainly didn’t feel like this baby’s mom – I’d failed him in every way in my mind, my body booting him out well before it was time, not protecting him the way I should have. There was so much guilt wrapped up in that word, “Mom.”

The second time I was called “Mom” was five days later, when I finally got to see him again. I walked up to Big Man’s isolette, and his  nurse whispered to him, “Your mom’s here.” I still didn’t feel an ounce his mom. I had been pumping every three hours faithfully since his birth days earlier. Spouse had brought video of him for me to watch every day. I’d signed the form for his birth certificate. But I still didn’t believe I was a mom. Everything about the process was wrong at that moment in time.

I was afraid of my child. He was so tiny. He was connected to so many tubes and wires. His face was covered in tape, his eyes covered by goggles to guard them from the bili lights he was under for jaundice. In my heart, it was my fault he was laying there, when he still should have been inside of me. I held him that night. He was too small for me to hold in my arms, so I held him on a pillow. One of my biggest heartaches is that they could have put any baby boy before me and told me he was mine, and I wouldn’t have known the difference. I’ve never said that out loud before.

Days passed. I spent hours every day next to his isolette. One day, I saw him kick out one leg, stretching beyond the boundaries of his cuddler, and I realized that was the exact same leg, the exact same motion he’d made while still inside of me. I connected the baby in front of me with the baby that had been in me. Suddenly, the name, “Mom” didn’t seem so wrong. His primary nurse encouraged me to take an active part in his daily care, even if it were just to take his temperature a couple of times a day before diaper changes. I gained faith in myself, and started to not flinch when someone would call me “Mom.” Eventually, I was the one changing his diapers, flipping him from side to side, watching his color instead of the machines so much, even occasionally pushing his feeds through his feeding tube. Once he graduated to an open crib, and was off the vent and CPAP, and able to be dressed in more than a diaper or hospital t-shirt, I changed his clothes as well, and then gave him baths. I read to him. I talked to him. I held him. I grew into my Mom name. By the time he came home, three months after his birth, I knew him, I knew me as his mom.

The guilt never leaves…the guilt over his birth, the guilt over being afraid of him, the guilt over not knowing him, the guilt of not being there for him his first five days of life. The first time I was known as Mom, it didn’t feel right. It took me awhile to get there. I don’t know if that hurt ever quite goes away.

And I thought that was hard

Big Man was born 3.5 months too soon, and spent ninety-three days in the NICU. I spent countless hours driving back and forth to spend countless hours sitting by his isolette. I watched him forget to breath, watched his heart rate drop, watched him turn gray, watched him battle his own infections, watched machines keep him alive, watched him fight to survive. And I thought that was hard.

n755588836_1022277_1220

Big Man on his birth day

Big Man came home from the NICU, and we had a home health nurse out every other week, a developmental specialist out every month, bi-weekly doctor visits for weight checks, monthly doctor visits for synagis shots to keep him from getting RSV. My life, my schedule was not my own. He didn’t want to be put down, ever. I had to learn to let go of my want for routine, schedule, time. And I thought that was hard.

When Big Man was four months old, I discovered I was pregnant with the Princess. I faced a pregnancy certain we were going to be back in the NICU. I was full of fear and anxiety. I saw a specialist OB (perinatologist) every other week, until we got past the gestational age Big Man was born. Then she had to be induced at 41 weeks 1 day. And I thought that was hard.

Big Man was developmentally nine months old when the Princess was born, so I basically had two infants under one roof. They are twelve months and nineteen days apart. Sleep was at a premium. Bottles were everywhere. We all three cried for hours every evening. And I thought that was hard.

top-1_edited-1

Big Man had high muscle tone on his left side, and a mild speech delay. Enter therapists visits to the weekly routine. And I thought that was hard.

When Big Man was nearly two, and the Princess eight months old, we moved….400 miles away.  I left my career of ten years. I left my family. I left my friends. I left my church. We moved in with spouse’s  (awesomely amazing) parents for eight months while our new home was being built. I found a new job I hated. It took forever to build new relationships. I had two toddlers in a new place, and I wasn’t entirely happy…yet. And I thought that was hard.

I had two toddlers under one roof – two toddlers who were like the wonder twins. I couldn’t keep up with their creative disasters. They finger-painted with baby shampoo in the middle of Big Man’s room. Baby shampoo NEVER comes out of carpet, ever. They unraveled a Costco-sized package of toilet paper up and down the upstairs hallway. They threw another Costco-sized package (out of the plastic wrapping) into my big jacuzzi bathtub. They ran away, down the street and around two corners, while I fed their six-week old baby brother. Big Man cut ALL of the Princess’ hair off, to the scalp, twice. They colored the underside of the pool table. I caught them, frequently, eating frozen waffles underneath the dining room table. Ditto bags of candy they’d climb on top of the fridge to retrieve. And I thought that was hard.

IMG_3735

I had three kids under four. I can’t even list all that drama, but I thought that was hard.

Herdatbaptism

The Herd in earlier days

There was a time they were all three involved in multiple sports….baseball, soccer, dance, piano lessons, golf. I lived at whatever field it was the season for.  I spent hours and hours in the car getting them each to whatever practice, game, lesson, or recital. And I thought that was hard.

Big Man was diagnosed ADHD, and with a mild visual processing disorder in second grade. We chose to medicate the ADHD. He fought the medication for the first year. I’d find pills hidden in the kitchen drawer, under the lazy susan in the middle of the kitchen island, and pretty much anywhere but in him if I didn’t watch him take it and make sure he actually swallowed it. He got glasses, and we got an every-six-months schedule of appointments with the pediatric opthamologist. And I thought that was hard.

I had three in elementary school. I went on field trips. I taped, glued, cut, copied, read to kindergartners and third graders, ran the book fair, was on the PTA, and basically lived at the school. We lived in nightly homework hell. And I thought that was hard.

Little Man was diagnosed on the autism spectrum, and ADHD, in second grade. It nearly broke me, but we finally had an answer, and a plan, and help. We entered the world of IEP’s, special education, accommodations, speech therapy, psychiatrists and therapists. And  I thought that was hard.

We moved on to middle school for the older two – ugh, middle school and middle schoolers. They each got their first phones, and we had to start talking about internet safety, data plans, and had to come up with rules of how we would handle things. And I thought that was hard.

Now here we are…..two days away from having three teenagers under one roof. Two are in high school. I was ill-prepared for the drama, the angst, the emotional rollercoaster, the pushing back against rules we’ve had in place forever, the angry words that instantly bring tears to my eyes, the eyeball rolling, the intense search for independence, the life-lessons they are learning through which I just want to help but know I need to stand back and let them have at it, come whatever the natural consequences will be. I’ve watched my biggest baby boy struggle to find his way academically when it used to come to him so easily I think he took it for granted. I’ve watched P fight to find herself – somehow losing (hopefully temporarily) the brave, bold, confident girl we used to know. Then, recently, came the day Big drove himself and P to school, his driver’s license finally earned. And I think this is hard.

Within the next five years, I will watch as they have all the rest of those “firsts”, as they graduate, and leave for school, only ever to come back for what will essentially be visits between semesters and school years. I know I will look back on all those things I thought were hard and will know that was nothing, because watching them go be their own people, away from us, my heart living outside of me (possibly far away from home), now that, that will be hard.

Schweitzer Family.jpg

 

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.

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.

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.

Maybe this is his “greatness”

High school has been, well, an adjustment for Big Man. Let’s just say it’s been a rough year all the way around. He’s learning, on the fly, study skills, time management skills, prioritizing, and the fact there isn’t anyone to babysit him anymore, aka remind him to turn in the homework he spent hours on the night before. I’ve had to wrap my brain around the possibility he’s average. He’s excelled academically since second grade. We put him in all honors classes this year. Maybe that set the bar way too high. I’ve struggled as his mom to be okay with him not being tops in his class any longer. He does work hard. I don’t want to take anything away from that at all. (He reads these posts, and I want him to know I am extremely proud of him, at the same time I’m frustrated with the learning curve this year has brought.)

I was talking with my friends last week about this whole thing. They’re NICU moms too. First, one who has a son in 11th grade told me how extremely normal this is for a Freshman boy. Normal. Huh. She assured me he will begin to figure it all out, and next year will be much better, and the year after that even moreso.

One of the things I said to my friends was that I firmly believed he was destined for greatness. Why else would he survive such an early birth, overcome so many odds, and turn out “normal,” despite everything against him? My wise friend J said, “Maybe this is his greatness….being here, being normal.” I’ll give you a second……Read that again. “Maybe this is his greatness.” Whoa.

She’s right. Maybe being alive, being normal, driving me crazy, frustrating me to no end….maybe that is his greatness. And isn’t that great enough? For all intents and purposes, he very well could have died. He could be severely disabled by his early birth. He could be blind. He could be deaf. Maybe his greatness is in being alive and wonderfully average.

We’ve been able to tell his  miraculous story for the last almost-sixteen years, bringing awareness to the problem of premature birth, the work  of the March of Dimes. Even more than that, his life is testament to God in the fact he’s not only alive, but suffers no repercussions from his too-soon birth. My momma’s heart and mind needed to make some sense of his prematurity, so I would always tell myself, “He’s going to do great things. God must have a big plan for him.” I’ve come to realize this may be his great thing,  God’s big plan….

He (Big Man) touches lives daily. He is so positive and upbeat. People like him. He does work hard. He may be number six  of six on the varsity golf team, but dang it, he’s a Freshman on the varsity golf team!  He’s getting B’s and C’s, but dang it, he’s getting B’s and C’s in all honors and one AP class (not that I want  you to be okay with that, Big Man!). He has a ton of friends. He can talk to anyone. His story inspires many.

I needed to change my perspective, change my definition of greatness. He may not ever run or golf (so awesome that golf is an Olympic sport this summer!) in the Olympics. He may never be a Rhodes Scholar. He may not win a Nobel Peace prize, or find the cure to cancer (or premature birth). That won’t mean he hasn’t done great things. His greatness is in him being alive, being normal, completing our family, and maybe one day, being a great dad to his own amazing children.