Saturday, October 24, 2015

Ronan's Birth Story Part Three: There and Back Again (A NICU Tale)

Life and time both run away from you.
Priorities change. When my son naps, I have to make a decision. Do I:
A. Wash the dishes?
B. Watch one more episode?
C. Exercise to battle the baby weight?
D. Fold the mountain of laundry the cats are using as a nap site?
F. Vacuum?
G. Clean the bathroom?
H. Shower so I feel human?
I. Make dinner?
J. There's something else I used to do . . . what was it . . . BLOG?!

So, yeah, that's kind of life right now.
It's not a bad thing.
In fact, it's pretty much a GOOD thing.
It's just life.
And life is lovely, but it's filled with a ten-month-old who is crawling and exploring like energy is going out of style. Mine is, but his? Oh, laaaaaawd have mercy!

But it all started in the NICU. 
P.S. Want a brilliant description of the NICU? Read This

The NICU is . . . it's a different sort of place. A different state of being. You exist in that tiny room for as many hours a day as you can stand. Completely sanitized.  You hate leaving that room to eat or go to the bathroom because of the washing, the checking in, checking out, and, really you just hate leaving because your tiny little person is in there.  So you sit in that chair, snuggling that tiny, fragile person for as long as you are allowed, wondering if the scent you smell is him or the hospital.
I always heard stories about that "straight from heaven scent" newborns carry.
I don't know if Ronan every smelled like that. I mean, I liked his smell, but it seemed . . . sometimes I wonder if it was too sterile. If he smelled like hospital, like his islet and the tubes and the clean hospital blankets. Once he was home, I think he smelled differently. Now, he smells like himself and his chamomile baby wash. It's perfect.
But I'll never know his true brand-new smell.

You don't get to hold preemies the moment they're born, you know. They're whisked away--for their own safety--to their warm little nest, hooked up to IVs for nutrients since they may be too little to nurse, and, sometimes, there are the little oxygen masks.  32 weeks seems to be the tipping point for oxygen--before that, it's almost guaranteed that the preemie will need assistance breathing until his lungs are stronger. Once the baby hits 32 weeks, there's a strong chance that he can breathe on his own. Ronan was the latter--I don't know if it was the steroid shots they gave me that morning and evening or if he was just ready, or if was just God, but that tiny little body had strong lungs under that bird-sized ribcage. When he would hiccup, I was afraid his chest was going to explode then collapse, it was so violent in someone so small.

He was, shockingly, born with feathery hair all over his head, but no eyebrows or eyelashes.
We couldn't really take pictures of him except on our phones, and, even then, we had to sanitize our phones and then sanitize our hands. I used that little bottle of foaming sanitizer like it was going out of style.

Ronan spent one day in the most critical level of the NICU.  I couldn't bring myself to look around. The babies in there, so very, very tiny. Incredibly tiny.  Parents and doctors hovering.  I didn't want to see--I didn't want to see what he almost was. What he could have been. I still can't look at pictures of preemies without my chest constricting, aching. It scares me. I should have been braver, more understanding, but I was afraid. So I looked at him, and that was all.

For nearly two weeks, he was in the second level--the halfway point--each baby had their own little room filled with the whirring machinery. You had a window and a rocking chair that may or may not rock properly. Everything surrounded the islet as if it were the Ark of the Covenant.
Everything revolved around that little nest. It was his safe haven--where the temperature and the wires and tubes were just right, where he was nestled between rolled up blankets, where he was absolutely safe.
We had to change that impossibly tiny tiny diaper through the islet's little round doors like portholes in a ship.  You'd reach your freshly washed hands inside and lay one on his tiny ribcage, feeling him breathe while he slept.  You couldn't take him out unless he was awake because waking him up would cause stress, and stress burns calories, and he needed every single calorie.

If only that works for adults like it did preemies, right?
Oh, look, I just woke up and I'm unhappy about it. 100 calories burned, YES.

ANYWAYS . . . .

Ronan hated it when his hat fell over his eyes, but every hat was so huge on him . . .
He felt the same about his little bandit mask he had to wear under the Billy Light when he was slightly jaundiced.
The little guy has always wanted to see absolutely everything.
 Each nurse was assigned three babies.
If something went wrong--breathing was irregular, heart rate increased, feeding tube emptied, alarms went off on the computer screens beside each baby and at the nursing station. Every time Ronan cried, his alarm would sound, and I would feel just awful, desperate to soothe him, afraid they would find me the worst mother EVER, that I was hurting him.
They were always incredible sweet and understanding. Gosh, I loved those nurses.  They were wonderful caretakers and teachers. You couldn't survive that place without the kindness of nurses.

So treat them right, dang it.

Ronan cried because he was hungry, and, for the first few days, they couldn't feed him.  He received all of his nutrients--a mix of fats and sugars--through an IV in his arm. It's not the same, though. His stomach was empty, so empty, and we would snuggle skin-to-skin, and, somewhere, deep down, instinct would wake up, and he would root desperately, and then he would wail. The tiniest little "wahwah" you've ever heard. So hungry and determined. And there was nothing I could do. He was too tiny to nurse, and, no matter how much I hooked myself up to that breast pump, I was barely making any milk.

Every tiny bit counted. I was proud and hopeful and bitterly disappointed with every drop.
That cursed, blessed, dreadful, glorious breast pump. My constant, whirring companion. My taskmaster. I swear it started humming, "Redrumredrumredrumredrum."
Seriously, that little contraption RULED my days. Every three hours, I plopped my boob in that thing, turned it as high as I could stand it, and started and finished with hand compression. Seriously, I drained those suckers dry, and, on a good day, I got maybe six ounces. For the entire day. I think once--ONCE--I got eight ounces. I was so darn proud of those ounces--handing in two nearly full bottles of milk to the nurse. It never happened again. I would turn in a bottle, nearly ashamed, and she would mix it in with a formula. He might get one feed of JUST breastmilk.
I was ashamed. I suppose I should not have been --I would never, EVER tell any mother she should be ashamed of her milk production. Not ever. That would be the biggest jerk-wad move of all time.
I mean, really, want to crush a new mom's already delicate spirit? Make fun of her boobs' abilities. She would never recover. EVER.
And you could be branded heartless and soulless for the rest of time.
For really reals.

Newborns sleep a lot.
It never feels like it, but they do.
It feels like preemies sleep more.
Even when they're awake, their eyes are only open for a few seconds (oh the joys and gifts of seeing his big, alien, grey eyes looking about).  Then they melt against you, and they sleep. If they're hungry, they may root and nuzzle, and, sometimes, they even stretch (Ronan used to stretch in the womb like that--arms and legs STRAIGHT out like he was trying to shoot out), but, mostly, they're just still.  They sleep because they are exhausted, because they're supposed to be sleeping in the womb.

Every three hours, they are woken up for a diaper change--those ridiculously teenie tiny diapers (I wish I had saved one, just to remember how incredibly tiny he was)--a turn over, and a quick vital check. If we were in the room, this was when we were allowed to hold him and all of his little wires.  They'd let me hold him "kangaroo care"--tucked inside my robe or hospital gown skin-to-skin--with a hat and some blankets.  And he would sleep again, and I would sit there until I was too tired or had to pee so badly I was in pain. 
In level two, I had to wait until the nurse came in or I could wave her down so she could help re-position his wires safely.   Then I discovered the nurse call button, and that helped.
Especially that time they doubled Ronan's feed amount (as they had been every day), and, apparently, his little tummy wasn't ready for it. Little guy vomited all INSIDE my hospital gown. I said I had finally been truly baptized into motherhood.
Thank goodness it was just one of those little newborn spit-ups. Not fun, but not vile.  Hysterical, really.

The night I was released from the hospital a second time, I learned that Ronan would be moving into the third wing--the final wing. "Oh, we think he will be home by Christmas!" his second tier nurses told us.
Oh, that was our hope and prayer.  That would have been five weeks in the NICU, and he would have been 37 weeks along (it was also the day they were going to induce me had my preeclampsia had not been so severe).

Instead, we had Christmas in the NICU.
Thanksgiving in the ICU. Christmas in the NICU.
Weirdest holiday season EVER.

NICU days all blended together.
We technically weren't allowed to have food in the rooms, but I would sneak nibbles of cookies or chips when the nurse was treating the other babies. The two little ones next to Ronan were drug babies--if they weren't sleeping or eating, they were crying, screaming. It was heartbreaking. I met the mother of one--she was incredibly nice, a bit older, said her little girl was a surprise because she never expected to get pregnant at her age.  She was on pain meds for a back injury, and, when she became pregnant, her doctor put her on methadone; when the normal dose didn't take effect because her gestating baby girl was absorbing it all, she was given a very high dose, and now she and her little girl were in recovery. "Does it feel different to you? With your baby in here? Like, you're not bonding like you normally would? I don't remember it being quite like this with my other babies."
"Yeah, yeah, I guess it does." I had no idea based on experience, but something in my gut knew it was odd.  Maybe it was just expectations--TV shows, blogs, women talking about that first sight, that first moment, the skin-to-skin snuggles in that first hold, the first feeding. They made it sound magical. The magic of the NICU is how they help these babies grow.  Maybe not all bonding is instant and magical. I know that there are more women who struggle like we NICU moms struggle, fighting through a barrier, desperate to connect because we know we're supposed to, that we need to, feeling inhuman because it's not easy. There's not an instant spark. It's a tiny ember you coax to a flame. It's there, one day, but it's work.
"I hold her and sing the 'I love you, you love me,' song from Barney. That helps, I think."
"Yeah, yeah, that's sweet."

I saw the other baby's mom twice.
Once, I dozed off, Ronan snuggled on my chest (which is how I spent the majority of our later NICU days), and I woke up to an angry voice. She was sitting at the nurse's station, borrowing the phone, hunched over, but everything about her was angry.  "It's so f***ing stupid. They won't f***ing let me take her home. They're giving her more meds, way more. She's been in her longer than I was using! I want to take her home! It's just so f***ing stupid!!!"
And I tried to look like I was still asleep and not listening.
The second time I saw her, I was in a wheelchair (ridiculous hospital protocol) and taking Ronan home. She had come out of her daughter's room to tell the nurse she was leaving, and she looked at me in a way only a women can look at another woman--anger and jealousy. Why the crap was I going home with my baby but they were keeping hers there? When was it her turn. I averted my eyes in shame and fear.  Life wasn't fair. I felt bad for her in its unfairness. Maybe I shouldn't have--she used while pregnant, after all--but it's hard, being there. It's good because your babies are growing and cared for. It's bad because they don't feel fully feel like yours until you can take them home.

I tried not to look in the other rooms, but, at the same time, curiosity gets the better of you. some rooms were brightly decorated with banners and pictures. One looked like she was living in a pink, princess birthday party. Most rooms had just the decorations the sweet hospital volunteers brought in--mostly tiny, bright quilts used as islet covers to help the babies get used to the concept of day and night. Ronan's was orange and blue clown fish.
One room said not to enter without nurse's permission followed by a big word you had to google.  The baby was being treated for cancer.
You didn't look in the rooms because it broke your heart.

We didn't really have anything to decorate Ronan's room.  We had just barely put his nursery furniture together and didn't have much else. After all, we had eight more weeks, right? It's not like we'd suddenly have a baby super early or . . . oops.  But we did have treats and chocolates for the nurses.
Because nurses are awesome.
One of our nurses told me later that everyone on the hall knew our room had snacks. The night shift LOVED our room.

I loved our room, too, because Ronan was there.
I snuggled him as much as I was allowed. By room three, that was almost all day. I miss that tiny bundle sleeping on my chest. Sometimes, he'd have the hiccups. Once, he snored and it sounded like a rusty swing. All those tiny noises. I loved them.  He was a sweet, sleepy little guy. 
If the nurses were talkative, we'd sit and chat, sometimes. His physical therapist was awesome. Yes, preemies need physical therapy.  You see, as the baby grows, there's resistance in the womb that helps them develop strength. Since preemies come out early, therapists have to develop imaginary resistance. Little leg, wrist, and arm stretches, finding tiny shoulder pressure points to help the baby's relax. So his therapist would help with these seemingly simple, insignificant movements that were so very important, and we would talk about Arrested Development and she would answer as many preemie questions I could think of. I loved his therapist.

Weekends were the hardest.
What they don't tell you is that the NICU isn't just hard for the mother. It's hard for dad, for baby, it's hard on your marriage, on your way of life.  I woke up in the mornings--late, usually, because I was always so tired thanks to stress and blood pressure meds--and my MIL would get me to the NICU by lunch. There I would stay until Chris came to get me around 8:00 PM or later. I was fine with later. I got to stay with Ronan.  On weekends, though, Chris wanted us to rest together; we needed clean laundry, clean dishes. I needed to pump. Nonstop it seemed. So we didn't get to the NICU until dinnertime.  I hated it.
I hated it because I needed rest.  I was sick, my body was weary.  The nurses urged me to take time to rest--that if I didn't take care of me, my milk never would increase, that I wouldn't get better, that I wouldn't be able to care for Ronan.  Chris didn't want something else to happen to me. So I rested. And I hated it. It felt right and wrong all at once, and I cried about it all the time because I felt guilt and relief simultaneously.  And it all just felt wrong.
I needed my husband. I barely saw him.  He didn't know what to do with himself in the NICU. He felt useless. He was bonded with Ronan--faster, I think, than I did--but he wasn't sure how he fit in the hospital setting, where we were essentially useless. Chris needed me. We needed something to feel almost normal even though everything felt wrong all the time.
Wrong because we didn't have our baby.
We were weary and anxious and guilty, and just didn't know what to do with weekends.

One night, we only stayed for a couple of hours. We ran into my parents there.  Chris and I had to do something--I don't know what--but we decided to leave right before Ronan's next feeding. We fed him once, and we agreed to let the nurse do the second feeding. My mother told me later that she couldn't believe it. Why on earth would I so casually let someone else feed my baby when I had the chance to feed him? When we needed to bond?  I sobbed. I didn't know I wasn't supposed to do that. A nurse always fed him through the night. I didn't know that I wasn't supposed to let the nurses feed him. I fed him every meal I was allowed when I was there during the daytime.
"Do you think that if you were there more often, all day, that maybe he would eat better? That he could come home sooner?" I was asked.

It wrecked me.
That question absolutely wrecked me.
I was trying to pump, but I couldn't produce enough. I was so tired I slept through all of my nighttime pumping alarms.  I was so tired that I had no appetite.  I was so tired I couldn't wake up in the mornings.  I was emotionally and physically broken, and I felt nothing but guilt all the time.
I hated the thought of Ronan alone in that room.
"It's good care, but it's institutionalized care. He needs you."
Yes, yes he did, and I thought I was doing my best, but maybe I wasn't. Maybe the reason he wasn't home for Christmas was my fault because I didn't push myself hard enough. Maybe I didn't care enough.
And I just wept.
I woke up early the next morning, dragging myself through the hospital, to begin my first of three twelve-hour days. I had a new nurse--she reminded me of a friend from college--I handed her my meager supply of breastmilk and asked, "If I were here from dawn til dusk every day, would it make a difference in his development? Would he get home sooner?"
"No," she said, "No, it wouldn't make a difference." She paused, frowned, thought for a second, "Actually, maybe, only because, if he ate better when you fed him, he might pass the feeding requirements. Does he eat better with you?"
"Sometimes, yes, others, no."
"Well, maybe. Sorry."
And I cried again, wrecked with guilt.

We tried breastfeeding. The first time, neither of us had any idea what to do. Ronan just licked me and I sat there with the lactation consultant hovering so close I was blushing, shoving my nipple into his mouth over and over. Eventually, he figured out suckling, but it did no good. My supply was either too low or his suck was too weak because he never got anything. Plus, the attempt at breastfeeding exhausted him and left him to tired to bottlefeed, which took us farther and farther away from a release date. So we bottlefed because I was desperate to get him home, and he did better on bottle.  We did figure out breastfeeding eventually, but never enough to break away from the bottle. He would take my breast until he was six and a half months old (three months without pumping, btw--I was ready to have a divorce-your-pump party), and then my boobs just pissed him off, so we went back to just bottle.

I still feel guilty over the NICU.
I don't know how to feel like I'm not making excuses.
The nurses were so kind and understanding. I had several look me in the eyes, dead serious, and say, "No, you go home. You rest. You take care of you. Because if you don't get better, you can't be here for him, and he needs you. But he needs you WHOLE."
One nurse told us that it took a minimum of six weeks for the body to recover from a trauma like congested heart failure. "Like healing a broken bone," she said. "Of course you're exhausted and not feeling yourself. You're still healing. You rest. Don't feel guilty. And don't let anyone let you feel guilty. You are here every day. You are healing. Rest."
I loved that nurse.
I loved her even more when she let Ronan keep his feeding tube out.

Babies know they're on feeding tubes. Well, they may not understand "feeding tube" exactly, but they know they have something on their face that's irritating and something bothersome in their nose.  So, once they reach a certain point, the seemingly aimless face rubbing and arm waving becomes surprisingly meaningful.  A tiny finger catches the tube and SLURP! out it comes.  It scared the crap out of Chris the first time it happened. I was in the bathroom, and when I came back, Chris was all, "He totally ripped his feeding tube out!" I nearly panicked, but the nurses were nonplussed and simply reinserted it.

The third time it happened, the nurse left the tube out and decided to try letting Ronan do "self-led feeding"--babies break the strict three-hour rotation and are fed by bottle when they cry. It's the first step in the coming-home process.
So Ronan ripped out his tube. He took bottles. If he took the minimum amount of formula every twelve hours for three days, he would be released.

And, so, my twelve-hour days began. 8:00 AM - 8:00 PM (at least--sometimes later).  I held, changed, and fed him. I counted every ounce. The nurses supervised, but I was on my own.
When the physician came in and told me it would be four days or more, my heart fell.
"But . . . um. . . could we maybe do it in three? Because, well, then it's New Years, and insurance deductables . . . "
"Oh. Insurance. Huh. I hadn't thought of that. Hm. We'll see how he does, but we will try."

And so it came to be that December 31, 2014, Ronan was released.
It took all FLIPPIN day that last day, but we did it. We were sent home.

We were so thrilled that even Chris looks overjoyed in a photo! (That's huge folks)
I adored Ronan's elf-like homecoming outfit
And I hate all postpartum photos of myself because, doggone it, C-Section plus Pre-Eclampsia plus Baby-Weight plus Exhaustion is just all kinds of self-esteem NOPE. It's all good, though, cause I got to take our baby home!

Six weeks.
Six weeks of love, snuggles, doubt, and overwhelming guilt.
I still feel guilt.
I still second guess. I still battle with whether I did my best or if I should have done so much more. I still wonder if I did the bonding thing right. If I could have worked harder on pumping and breastfeeding.  If I could have done more.

I will never know.

But we got him home.
He had grown from 17 inches to 18.5 inches.  From 3 pounds 6 ounces to 5 pounds 15 ounces.
He was a rockstar.

And that's all that matters in the end.

In the car for the first time to ride home!!!

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