Monday, July 28, 2014

Don't worry: I'm not sick, I'm just crazy

There are times in my life when I think I'm weak. And there are times in my life when I think I'm strong. There are times when in my life when I think I'm weak and others think I'm strong. I'm sure there are times in my life when I think I'm being strong and others think I'm being weak. Sometimes I can't tell if I'm handling things well or not.

Life's rather paradoxical that way. 

The first instance that sticks out in my mind is when I was in labour with Rachel and I was having a hard time managing my contractions. I hadn't "been checked" and everyone (from the check-in desk lady (who told me to "have a seat" and I was like, "Pretty sure I can't because there's a human head between my legs!" only I didn't really say that) to my nurses, who lazily got the triage room ready for me) was telling me to gear up to learn that I was only "at the beginning stages of labour" and should prepare emotionally to be sent home until "real labour" started. I would certainly know when that was because things were only going to get "a lot worse." First time mothers usually are sent away the first time they come into the hospital, I was told. 

When I finally "got checked" (which was only like five minutes later—I had to have Andrew help me change out of my clothes and into a gown because I was shaking so badly I couldn't manage it myself) I was at a nine and the nurse was like, "Holy cow, so...you're going to have to push in probably ten minutes."

"I thought I was just being wimpy," I cried.

"You're not a wimp!" she said encouragingly. "You're strong! You're so, so strong!"

I thought I wasn't handling labour very well at all, but then the information changed and the perception I had of myself—and that others had of me—did, too. I went from wimp to warrior, just like that.

(And Rachel was born on a triage table, just like that.)
Miriam's birth, though not quite ideal, stands out like a glowing star in my memory. I may have been strapped to a table against my will and I may not have understood more than ten words my nurses said, but I knew what my body was doing and I felt empowered because of that. 

I felt confident when I woke Andrew up and told him it was time. It was.

I felt confident when I told him he'd better fetch the doctor because it was nearly time to push. It was.

I felt confident through the whole process...in spite of being strapped to the table against my will. 

(I don't think I will ever get over that. Ever.)

Then along came Benjamin, far too early. I had no idea I was in labour; I just thought that something was wrong. I literally went into shock when they told me I was in labour. 

Literally. Went. Into. Shock. 

Have-some-warm-blankets-and-oxygen shock.

The birth was fairly easy, though his head was big (still is) and required a few hard pushes I feel like he mostly slipped out. Perhaps I only think that because I had an epidural (my first one) and couldn't feel a blessed thing. They handed him to me. We took a couple of pictures. And then they took him away. 

I got stitched up and wheeled out of the delivery room. On the way to my recovery room I got to visit Benjamin. They wouldn't let me hold him but I touched his arm. 

They brought him to my room once to say goodbye before they life-flighted him across town. 

And then I was left alone in a hospital room with a breast pump. Andrew did his best, visiting Benjamin at his hospital, visiting me in mine, and trying to get home to see the girls in between. We were all so frazzled.

When my doctor finally came in to discharge me he swore up and down that he had no idea Benjamin had been moved and if he had known that he would have come sooner (like on his lunch break or something) instead of waiting for when it was convenient for him (which happened to be after his last appointment for the day). 

I'm still not sure how that message didn't get communicated to him because I think I was begging my nurses to discharge me the entire day—and they knew my baby wasn't with me.

I think, though I'm not sure, that something inside me broke when Benjamin was taken from my arms. And possibly something broke inside of him, too. Because I think that babies and mommies need each other. 

We were in an "open-bay, multi-bed" NICU (which is rather unideal, I think). There were sick babies and premature babies everywhere you looked. We could pull the curtain when we visited—twice a day for no longer than an hour and "ideally" much shorter than that—but that didn't cut out any of the noise. I was hearing phantom alarms for weeks after coming home. 

I can only imagine how long Benjamin heard them.

It felt so good to finally get to hold my boy, though, even if visits were strictly regimented. 

Benjamin was little apnea/bradycardia boy. He had an unusual number of episodes. Not like three or four (see clinical scenario 3) but numbering in the teens, sometimes even in the twenties. And for some reason no one told me this was unusual for weeks. And I didn't know to ask about it. The video we watched in orientation said that apnea/bradycardia was perfectly normal for preemies. So, I thought it was perfectly normal.

The only time I got to hold him is when we were trying to nurse—lactation consultants, occupational therapists, and nurses were buzzing around, checking his latch, checking his stats, checking his weight. Nursing is stressful for preemies anyway—it's not an easy meal like the umbilical cord or GN tube—so is it any wonder that Benjamin got stressed out with the additional hubbub in his curtained off area of the NICU, not to mention all the hubbub in other curtained off areas of the NICU. 

After feeding time we were shooed out of the NICU—they needed that rocking chair for some other harried mother. But, looking back, I think I should have insisted on holding him, just holding him, so that both of our souls could heal. I just didn't know. I thought that they were right—that my every touch and very presence was stressing my little baby out. But now I'm not sure they were they were right. 

It is true, of course, that "noxious handling is well known to lead to harmful fluctuations" in bodily systems for the baby but "as to providing periods of rest, nothing beats K[angaroo] C[are]." 

Transferring from the baby's bed to mother's arms is stressful, so wouldn't it make sense to let mothers hold their babies for as long as possible after that point. If baby gets stressed out during a feeding I don't think the baby should be taken from the mother and put in its bed. I think the mother should be instructed to sit back and relax with that tiny little creature resting on her chest, putting his world together with every beat of her heart. 

We rarely did proper kangaroo care. It didn't seem encouraged, really. It was encouraged in word, but not in deed. 

When I've told people out here what happened in the NICU back there, they're rather shocked. Because shouldn't Utah know how to treat babies? Family City, USAMormons have a lot of kids

My friend out here had a baby around 33 weeks. She got a private room in order to "promote breastfeeding." As long as she was trying to breastfeed that little guy, she could stay at the hospital and hold her baby to her heart's delight. 

Andrew says it's because Utah is too much of a "baby factory," especially Utah Valley. The NICU is over crowded because there are so many babies being born there, due to the number of young married couples in the area. But that's only his theory. It's hard to prove. 

I think it's because of what insurances will pay for. If it's true that in Scandinavia they practice KC up to 22 hours a day and their preterm babies leave the hospital around three weeks earlier than American babies—shouldn't we be trying that out?

Andrew says no because this is America and mothers should be working, not holding babies. And who wants to pay to have a caregiver in the home for the other children (something I suspect the government would help out with in some Scandinavian countries)? Not American taxpayers, I can tell you that. 

But the joke is on them because, honestly, we couldn't afford to have our baby hospitalized for five weeks so we definitely turned to medicaid (we're certainly poor enough) to cover our bills—our astronomical bills. 

It was around $1000 per day just to have our baby sit in his little bed. Three weeks of that is $21,000. And that doesn't even begin to touch the cost of having a pediatrician check on him every day and all the other fees involved in having a wee one in the hospital.

I'm going to guess, though, that hiring a full-time caregiver for the kids at home would cost much less than $21,000 for three weeks, considering that's almost how much Andrew earns annually. Granted, we get paid a pittance. But, still, we have friends who have hired full-time, live-in nannies and I'm positive they aren't millionaires. They weren't paying their nannies $7000 per week, that's for sure.

Perhaps KC could be given more of a shot in the states. We'd save a lot of money and a lot of heartache that way. A lot. Seventeen episodes of apnea/bradycardia in one day is a lot (or so I'm told) but perhaps that was Benjamin's way of asking for his mommy. 

I feel so fortunate that I eventually got to walk out of the hospital with my baby. Many people don't. There were times when I wondered if I'd be one of those people—even up to the very end. Benjamin was over a month old when my mother, in an attempt to comfort gone very wrong, said, "Perhaps he's still trying to decide what home he wants."

"What do you mean?" I asked.

"Well, perhaps he's still deciding between heaven and here," my mom said delicately.

I'm quite positive I gave my mother a killer look that topped all other killer looks given over the course of history.

"He's not," I insisted selfishly. "He's staying here. I need him."

Truthfully, I had wondered that same thing every single day for five long, torturous weeks. But they were thoughts I didn't feel deserved to be put into words. By anyone.

Had he died, it would have been a tragedy. He didn't die, and that's wonderful and I'm so grateful. But it still hurts. Something still hurts.

There's a "rainbow baby" principle for parents who have experienced a loss. A rainbow baby "is the understanding that the beauty of a rainbow does not negate the ravages of the storm." A rainbow baby is a baby that comes after the loss of a baby—a miscarriage, a stillbirth, a 30 minute life. Such very tragic things. But what about a premature baby?

Is it vain of me to want those words to apply to me? 

Is it terrible that Benjamin isn't my rainbow?

Is it horrible of me to crave a rainbow?

Benjamin is my storm baby. I'm so glad that I got to take my storm baby home, but honestly, my heart still hurts over the tempest his first few weeks were (a time that he, fortunately, will never remember). Every time I look at that boy I'm overcome with love, but it's love tinted with sadness. The sadness is small, butt he sadness is there. And I hate that my body can't seem to pull itself together enough to bring a rainbow home to me. 

So I cried at church again yesterday because as if not being pregnant is bad enough my body seems to enjoying flaunting this fact in my face when I'm stuck at church for half the day (with choir practice it really does seem like half the day). My body can't tell me this when I can quietly come to terms in the privacy of my own home. Oh, no. It chooses to inform me of this only when I have to face 400 other people.

I tried to hold it together, but I failed. 

But I believe in tender mercies and, wouldn't you know, my tender mercy walked right through the restroom door. 


...even (and perhaps especially) when uttered in a bathroom stall.

Anyone could have walked through—well, hopefully only any female since it was the women's restroombut it wasn't just anyone. It was someone who I knew would understand and who was so, so sympathetic even though she's been waiting for a baby for much, much longer than I've been waiting. And somehow I managed to spit out the reason why I was sniffling in the bathroom instead of sitting with my primary class and she made me feel much better, explaining that pain and desire doesn't have to be logical. It just doesn't.

I still ended up having Andrew find a substitute for me because I couldn't manage to stop crying altogether. He drove me home and put me to bed and then went back to church for choir practice.

And now everyone thinks I have a stomach bug because Andrew told people I "wasn't feeling well."

"Silly mental health stigma," he said. "I couldn't just say I took you home because you were sad because that wouldn't make sense to people. I had to say you weren't feeling well."

Ah, 'tis true.  

"Soul-ache doesn't worry folks near as much as stomach-ache."
—Miss Cornelia, Anne's House of Dreams (L.M. Montgomery)

I realize that church is typically the place to be for soul-ache healing, but sometimes—like when you can't stop crying and everyone you see asks "What's wrong?" (which is the most terrible question to ask someone trying to regain their composure)—privacy does wonders, too. 

Privacy, and a long, uninterrupted nap in a quiet house.

I'd love to not have our NICU experience gnaw at my heart and mind. Still. After two years. Because, come on. But, it's there. The pain is there. And I haven't succeeded in chasing it away. I don't know if that's because I'm weak or if it's because I'm strong but am battling something stronger.

I've had more than one friend experience more loss in trying for a rainbow and I'm quite positive that's not a storm I'd like to navigate through, but a rainbow would be lovely.

10 comments:

  1. Sending you lots of love and hugs from across the country.

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  2. My heart aches for you as I read this and I think you are a remarkable strong woman. I can't imagine how hard those NICU weeks were on you and your family. I am so glad you got to bring your sweet boy home, but happy endings don't make the hard parts of our life any less hard or painful. I know the feeling about falling apart at church, I did it several times our first year in Durham. I am glad you were met with kindness and understanding.

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  3. Ha! Now I'm the one crying uncontrollably. Thanks for that. ;-)

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  4. Hugs! May God give you a little rainbow soon.

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  5. Right before we got pregnant with Michael, I had a miscarriage. We had been trying for about six months, which isn't really a long time, but considering how scarily easy it was to get pregnant with the girls, it seemed like forever. Then, just as I was finally so excited to be actually and finally pregnant, I suddenly was not. I remember starting to bleed, going to the ER and getting a blood test, and seeing the look on the doctors face as he came in. I knew there was nothing to be done. I was full of such conflicting emotions. I felt so selfish for being upset that it had taken so long to get pregnant since I had friends who had been trying for years to have baby number two, and here I had two beautiful girls. I felt hideous for grieving since I had another friend who had lost multiple babies over the years, sometimes as late as 16 weeks along, while I had barely known I was pregnant. I felt like I had no right to any of my feelings, and yet I still ached with loss. Luckily I have an amazing friend who took me aside and told me that I have a right to feel sad and depressed. She told me that comparing my loss and trials to anyone else isn't fair or right because that would be trying to take away from the experience I was having. I needed to embrace the trial so I could learn, not shunt it away as an "unworthy trial" by comparing it to someone else. So I grieved. And it hurt. And it helped. Now I look back at the experience and I'm so grateful, not because I hurt less, but because I now have some compassion to share with others. I still grieve about that little miscarriage in some ways. But I am thankful that I didn't tuck the feelings away. I have no idea the pain and sorrow you went through and are still going through with Benjamen's birth, but I know it will heal, in time. At least enough for you to be able live, but never so much that you can't one day give comfort to someone else who desperately needs it. Hang in there.

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  6. You're not crazy, you're just a mom and we wear our hearts on the outside of our bodies. So many times when I was in Kenya I thought if I hadn't lost the pregnancy I'd be at home all alone with four kids and a brand new baby...which is nuts, but I still missed the baby. Dr j says he's done and I often think how crazy my life is and how nice it would be to get sleep and never have to fly overseas with a two year old again or potty train and u could go back to school. I think maybe it is time to move to a new place and time in life but the ache is there. The sadness. Sorry your going through this :(

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  7. Perhaps some sort of rainbow will come. But more important than the rainbow is the assurance that Christ suffered for all pain, for all loneliness, and for all fears. He understands. He provided you comfort. Life is a never ending storm but through the atonement we can all find peace amidst the storm. I am so grateful for the tender mercy of the right person being at the right place at the right time. Your storm will continue to rage, but there will always be a beacon sent to you to rediscover that peace which surpasses all understanding.

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  8. I'm 37 weeks pregnant and just starting to feel really nervous about everything (ie: the birth, my health, baby's health, etc.) Reading your post helped me realize that I'm extra anxious this time around because of a miscarriage I had last September. I want this to be my rainbow baby, but I'm terrified of something going wrong.
    Before we had a gazillion kids, we actually went through a few years of infertility. I'm sorry that you're going through something similar. After my miscarriage I had similar feelings of despair and loss every month that I didn't get pregnant again.

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  9. So sorry, Nancy. I hope you get your rainbow soon.

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  10. Yes. I am this far behind on your blog. :) but I just had to say how much I love this post. Grief is such a strange thing, and the more I get to know it, the more I realize that there are no rules. It comes when it comes and it leaves when it leaves and we just have to cope with it for as long as it stays... So grieve on! And I hope that little rainbow comes soon for you.

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