Something else they didn’t tell me

When you’re going through fertility stuff, you get to go through lots of bloodwork. When you’re on hospital bedrest for sixteen days, you get one or more IV’s, all of which are moved every two or three days. When you get a severe staph infection, you get a PICC line for four weeks (which might take three or four tries, including a trip to a surgery unit to finally get it in) accompanied by once-a-week bloodwork to check the status of said staph infection. Now, there were a lot of things they didn’t tell me when I was on that hospital bedrest, nor when Big Man was born 14 weeks too soon, nor when I was recovering from that severe staph infection. One of the things they didn’t tell me was that, for probably the rest of my life, my veins will roll and collapse when getting blood drawn or an IV line put in.

Phlebotomists and nurses get all excited when they see my veins. They look nice, pretty, and totally accessible, until they try to access them. Then forget it. Bye-bye veins. It’s not fun to them. It’s seriously not fun for me. I warn them, but almost to a t, they don’t believe me until they go to put the needle in.

I had to have blood work this morning. Right away, a pretty vein showed up on my left arm, but as soon as the nurse went to put the needle in, it disappeared. I told her what had happened to me, and this was not out of the norm anymore. She was really nice and worked with me, using the baby  needle and holding my arm in just the right spot. She got it in on the second go.

I’m whining. I get it. Worse things could have resulted from those experiences seventeen years ago. Quite honestly,  this is just an annoyance I rarely have to deal with anymore. But it’s a reminder, every single time, of 21 days of IV’s, four weeks of a PICC line, and just about everything else that went wrong that September. And it’s just something else they didn’t tell me would happen.

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.

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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The Healing Baby

Little Man will turn 13 later this week – that’s right, we will have THREE teenagers under one roof. (send wine)  He doesn’t seem thirteen to me. It doesn’t seem possible on the one hand – it feels  he was just born. On another hand, because he’s autistic, and because he’s the youngest of our three, he just seems so much younger than Big Man and the Princess seemed at thirteen. Is that always the case with the youngest?

I knew, even after having our boy, and then a year later, our girl, that I wasn’t done, for many reasons. I’d always imagined myself as a mother of three kids. I didn’t feel done with having babies, although Spouse would have (back then) been good with just the two we had. In my heart, something was missing. More than that, I was hurting. I’d suffered a miscarriage, I’d had our firstborn ridiculously early, my pregnancy with the Princess was full of stress and anxiety we would go through another premature birth. I needed a pregnancy on my terms.

Little Man was just that – a pregnancy on my terms. He was my happiest pregnancy, even with that awesome morning-but-really-all-day sickness during the first trimester. I was relaxed. I was calm. I was so happy. I sang to him, I talked to him, I played music for him, I constantly had my hand on my belly. The day after my due date, having been dilated to 3cm’s for almost three weeks, I was induced. He took his time coming out, and there were a couple of hours of stress, but then he was here – the only baby put on my belly at birth. I fell in love instantaneously.

I won’t lie and say that day was perfect. We did have some stressful hours that day. He wasn’t in a good position, I wasn’t progressing, and then he started having some heart rate decelerations. We talked c-section, but then my doctor got him shifted, and things went quickly from there. Little Man had some junky breathing hours after birth. He spent some time in the nursery, and there was a brief consideration of sending him to the NICU. But then they brought him to me, and I held him, and he settled.  His first two nights home, he didn’t sleep, at all. I did, for real, fall asleep standing up. But day three home, he became the perfect infant, for the most part.

Before I got pregnant with Big Man, I had dreams of a very blond little boy. Well, Big Man was born with platinum hair that all fell out, and came back in brown. Little Man was that blondie I dreamed of, to a T. He was my healing baby – he helped me recover from all the pain, fear, guilt, grief of a too-soon birth, and then a too-soon pregnancy right after our NICU stay. He was my baby, my way.

When he was diagnosed on the spectrum, I remember feeling somehow that healing was being torn away. My perfect pregnancy, near-perfect birth, perfect baby wasn’t perfect anymore. But then a beautiful friend reminded me a diagnosis doesn’t take away who he is, how he came to be. Autism couldn’t touch how I felt the day he was born – all those cherished memories weren’t gone. He was still that beautiful blond toddler I’d dreamed about and held in my arms.

Thirteen years ago, he took away so  much pain, and brought so much joy. He completed our family, completely. I’m so grateful God saw fit to make me this precious boy’s mom.

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.