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……

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 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.

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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.

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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.

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

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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.

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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.

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.