Bringing Sophie Home

For pdf version click here: Sophie

Sophie and Pacifier

I look as my youngest daughter balances precariously then takes several deliberate, careful steps.  Each one in defiance of physics, gravity, and grace.  She was born six weeks early, premature, a preemie.  Preemies’ bodies don’t grow like other babies, something no one bothers to tell you.  Their heads tend to grow much faster, so while her height is only in the 8th percentile, her head is in the 65th.  Sometimes, when she rolls onto her back she gets stuck, like a turtle, and must be helped over.  At her last checkup her weight percentile had actually doubled from 10th to 20th.  I’m fairly certain most of that is head.

I think back to a year ago when instead of struggling to walk, she was struggling to eat without choking and maintain her body temperature.  I remember the lights of the NICU, always blue-tinged, with rows of acrylic incubators and white, metal bassinets lined up neatly and close, a precise sense of order amidst the chaos.  And the wires.  God, the wires.  Babies festooned in wires like they were some kind of marionettes made from skin as wrinkled as tree bark.  If only there had ever been some music for them to dance to.

Instead, there were the constant sounds: the soft whoosh of machines, light pings of mechanical observation, hushed conversations, sometimes light, sometimes serious.  Inevitably a monitor would go off, followed by a rush of footsteps.  A pause.  The whisper-quick click of computer keys.  Usually a few buttons were pressed and the pattern would resume.  Occasionally another nurse or two were needed to address whatever crisis in miniature was occurring, but these also settled fairly swiftly.  A few times a doctor was called over and a baby was rushed from the room.  Every single time I thought, ‘Better someone else’s baby than mine.’  Horrible.  But even now I don’t regret it.

Babies’ birth weights were listed on the outside of whatever container they resided in.  My daughter’s was 4 lb 4oz, and by no means she was the smallest.  That honor went to a little girl who weighed just 1 lb 2 oz.  She was hidden in a separate room with a glass wall, all by herself.  Not even the peripheral presence of other humans, just isolation.  I never found out what condition required such extreme cloistration.

Sophie’s biggest problem was eating.  Almost everyday she’d start choking, at least once, and then the machines would start shrilling, screaming at everyone that her heart was skipping beats and her breathing had paused, as though her body couldn’t handle so many complicated functions at once: suck, swallow, breath, heartbeat.

The advanced medical treatment for this was to sit her upright and pound her back a bit.  Her heart and her breathing would resume their normal measures and we would begin the cycle all over again.  There was one time when I was feeding her where she just couldn’t do it.  She just couldn’t manage to get a single swallow down without choking.  She looked at me with such a small, delicate face of misery that it made me feel shattered; a helpless, defeated ache.  Like I had failed her, failed her in every possible way.  Why couldn’t my body hold on to her?  Why did it have to be such a breakable garden?

Sophie and Mom Skin to SkinEventually, she began to improve.  We brought her little outfits I ordered online, made especially for preemies.  Made to allow the wires to fit snuggly under while providing easy access.  I also bought her little headbands with flowers on them so she could look pretty, their soft, pastel colors contrasting with her dark hair.  It was the only thing I was able to do for her, other than provide her with milk.  I couldn’t take care of her any other way.

When circumstances allowed I would hold her, skin to skin, taking the burden of maintaining her temperature off of her body by offering her my own.  She was surprisingly warm, a tiny bundle of heat I wore over my heart for brief moments.  Even today her head is still remarkably warm and soft.  We all love to stroke it.  Sometimes her oldest sister thaws her chilled hands on it when she thinks I’m not looking.

Finally, she was down to a choking incident every other day or so.  By this point my husband and I had become quite proficient at sitting her up, briskly slapping her back, then continuing her feeding.  We were no longer fazed by the situation.  At some point it had stopped being terrifying and had become ordinary.  Not to the doctor in charge, however.  He was dire and dour and refused to let her go.

He held my baby hostage, intoning predictions and enumerations of all the things that could go wrong.  I wasn’t satisfied.  He spoke down to me on the phone, verging on belittling me.  He felt like a bully.  I never wanted to punch anyone in the face as much as I wanted to punch him.  I almost spat out that he was speaking to a Georgetown educated biochemist, so he could get off his goddamned high horse, but I didn’t, because I felt I shouldn’t have to.  I shouldn’t have to use the privilege of my education to bring my daughter home.  I felt my words should carry weight because they were true and my logic sound, not because he had respect for my profession.

Instead, I hung up the phone and thought, trying to figure out what to do.  I rummaged through my purse, located my insurance card, and called my insurer.  I tried to get them to stop payment to the NICU by telling them continued treatment was unnecessary.  They informed me they always go with the doctor’s assessment.  I asked if there was anything I could do to challenge the doctor’s opinion.  Their answer was basically, no.  I almost succumbed to despair but I decided I wasn’t going to stop fighting for my daughter to come home.  I would never stop fighting.  I knew she was ready, and if that doctor had an ounce of real intelligence then he should know that too.

So I rifled through a pile of papers until I found the number of the hospital social worker and called her, pleading my case.  Soon enough we had an appointment with the doctor and the social worker and we all sat in a tight, badly decorated room, where my anger felt too constrained to hide.  But I had to bite it down deep inside because this man, this arrogant ass, stood between my daughter and me.  This man who was educated enough to be a doctor, but not confident enough to look at the entire situation instead of relying solely on what some machine was saying.

In science, you never rely on the results of one type of experiment.  You approach a problem from various angles, assays, and tests, and only if they all concur do you draw a definitive conclusion.  You might run a Western blot, qRT-PCR, and a FISH before you’d say you knew what was happening for certain.  Only after all that.  You’d never rely on just one of them, like this doctor was relying on the results of one machine.  Sophie never had a full episode where she either quit breathing or her heart stopped.  She never needed to be aspirated.  These episodes were brief and usually resolved in under a minute.  She was able to keep most of the milk down, able to regulate her temperature, and was gaining weight and growing.  But this doctor didn’t see all that.  He only saw a machine that periodically indicated that there might be a problem.

But I sat there while he talked Sophie in Bluedown to me once again, my nails biting into my palms, my face stretched into politeness while my mind contemplated sending him ground coffee laced with sodium dodecyl sulfate.  Drink it down and get a good whiff, asshole, I smiled at him with my eyes.  He had all the power in the situation.  There was no way I could take her home against medical advice; no way to just walk into her room and take her.  I felt the desperation that all mothers do when unwillingly separated from their children.  There is no hatred like the hatred you feel for someone who won’t let you claim your baby.  It is a hatred expressed in crimson, ash, and hard purple hues, razor sharp, and visceral, vicious.  I hated this man.  I still hate this man.

There was a sudden flurry of standing, we were all standing, and I wasn’t quire sure what was going on, and then the doctor was saying we could take her home today, if, if, we agreed to bring her home on a monitor, got monitor training, and she passed the car seat test.  Just like that.  I had won.  I had won!

Quicker than it even seemed possible everything was in motion, and our daughter was sitting impossibly small in the center of a car seat that looked like it was meant for a child three times her size.  She was hooked to her monitor, and we were to see a specialist in two weeks time to assess her condition, but we were allowed to take her home.  Before we left one of the nurses patted me on the back and whispered, “Good for you.”  She didn’t care for that doctor, either.

33 days.  Sophie was in the NICU for 33 days, at least seven of them unnecessarily.  I thought that once we were all home I would feel elated, relieved.  No more 30-minute drives to the hospital.  No more half-life for our family, where we had a baby, but we didn’t have the baby.  But I didn’t feel relieved or elated.  I felt exhausted.  Drained.

For the most part the monitor was a nuisance, but no big deal.  Except the few times it went off and catapulted us out of bed, our hearts crazy and wild, our hands shaking.  But there was never anything wrong; it was always a false alarm.  When we went in to see the specialist she plugged it in to her computer, studied the read out, and pronounced, “Everything’s fine.  She hasn’t had a single incident since she’s been home.”  I faced my husband in triumph.  “See, I told you she was fine!  I told you that doctor was wrong and didn’t know what he was talking about.”  I felt the sweet thrill of vindication.  The doctor would receive a report.  He would know I had been right all along.  My mother-wisdom was proven.  I was satisfied.

It’s been not quite a year since then.  In a few weeks it will be my oldest daughter’s birthday, the same day, coincidentally, that our youngest was finally able to come home. It’s also the day my husband asked to kiss me the first time, seven years ago.  That day of the year is a good day.

Sophie is my baby of ease, the one who is almost no trouble at all.  She is the one who rarely cries, and if she does it is usually brief and gentle.  She is happy to play by herself as long as someone is near.  She is not demanding the way her older sisters are.  She also doesn’t quite have their exuberance, but she is sweet.  She always smiles when she wakes up, smiles even bigger when she sees you’re there.  She can’t laugh properly; it doesn’t come from her throat in quite the right form.  It has a harsh, guttural quality.  We say it sounds like she’s pooping out her laughter.  It’s endearing and strange.  And when she’s tired she will crawl over to you and rest her enormous, warm head on your chest.

This past winter was my first with both a toddler and an infant.  It was also one of the coldest, snowiest that we’ve had as well, so the three of us have been holed up inside most days.  The monotony has created a gossamer lacuna that some days swallows me whole.  I feel worn down by the rub of monotony, all my edges smooth and free of features.  They say Spring is coming soon, but I don’t believe it.  When I was outside earlier today the breath of the world was still cold, and the sky smelled like snow.  The ground around our home is still wrapped in a white, crinkled crust; frozen-unfrozen-frozen.

Inside, the three of us, Sophie, Fiora, and me, crawl under the piano and lay on our backs.  We’ve learned that if we raise our voices into high pitches they resonate and vibrate the strings before fading away.  We do this until it is time for them to take a nap.  Fiora is first, and she unexpectedly drops off immediately instead of fighting her way into exhaustion.

Next, I tuck up Sophie in her crib, her eyes already drifting before fluttering back open, as if sleep can be held back by force of will alone.  She pulls the bottle from her mouth briefly, smiling up at me as if I’m the most amazing thing she’s ever seen and just for a second everything feels whole and new.  This is what so much of parenthood is made up of: these tiny little moments of perfection spread throughout the day; the ones we will gather and hold to us and remember when they’ve grown and left us, the shadow of their smallness still heavy in our hands.

Sophie Smiling

15 thoughts on “Bringing Sophie Home

  1. Another great essay. I’m impressed with how you handled things with that doctor.
    This essay makes me think of the stories my mom has told me about how I was a preemie. One such story is of my first power outage. I was still attached to a monitor, which of course stopped working when the power went out, and my parents were very frightened. Luckily, though, I was fine, and they had put their house down as a priority for putting power back on since they had a premature infant. For that reason, it didn’t take long for the power to come back on.
    Contrast that with the first power outage I remember, when I was two. This was a much more light- hearted occasion. My parents lit candles, and we ate ice cream in the dark because it otherwise would have melted with the freezer not working. Between candles and ice cream, I was convinced it was someone’s birthday, so I sang happy birthday. My parents sang it, too, and my dad said, “Happy birthday, everybody!” after blowing the candles out when the power came back on. It came back on while he was bathing me.
    In reference to both this essay and the previous one I read, I wanted to tell you that in addition to being a preemie and autistic, I was my parents’ miracle baby. None of the other biological children of theirs survived. My mom had two miscarriages after I was born. That’s why they decided to adopt their next child instead of trying to have another one, and ended up adopting my sister. If you want to read my essay about when we adopted her, it’s published in Connotation Press, an online literary magazine. You can find it here: http://www.connotationpress.com/creative-nonfiction/1711-lily-stejskal-creative-nonfiction

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  2. Lily, that essay was so, so beautiful. It’s a wonderful story. I love the part about you thinking the baby was being delivered in a baby truck. It makes total sense when you’re five. The ending was really sweet, too.

    And I love your two stories about the power going out. The second one was really nice and fun. Thanks for sharing all of your stories. I look forward to viewing more of your blog once the girls settle in for the night!

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    • Thank you for taking the time to read another of my ‘novels’. I appreciate it and the comment. My toddler, Fiora, is the progenitor of the piano game, since she loves to crawl under there. Awhile back I crawled under with her and was too tired to crawl back out. And thus, piano game! 🙂

      Liked by 1 person

  3. I am writing notes as I read:

    Oh! How you make me ache for the NICU babies, hearing such mechanical sounds instead of music. How appropriate music would seem to be!

    Yes, skin-to=skin was amazing with my babies. “a tiny bundle of heat I wore over my heart” – perfectly worded.

    I had a recent experience with a doctor holding a patient hostage. It was one of many times. When I took my husband to the Emergency Room in January, the doctor wanted to keep him for a few days. I was going to have to take a chance on insurance not covering ANY of the expenses if I took him home against medical advice. Apparently, when we entered the ER, my husband exchanged access to a diagnosis with his right to make his own decisions. I discussed with the dr. the comparison of being in a hospital room with being at home. We went down the list of pros and cons of each. I tried to admit that being home might be less than perfect in any way, but I couldn’t honestly find any way to see it that way. Eventually, I found a way through the system so the dr. could release my husband as if he was of a religious sect that prohibited certain medical interventions. (By the way, he is healing well and is REALLY glad that he came home, and you know that I feel victorious)

    To be subjected to such abuse when it is your child, and she relies on the doctor’s prescriptions for equipment, etc., is almost unbearable to read about. Bravo for you holding your tongue on your “rank”! You stood up for the everyday person like me who has the right to choose medical treatment!

    What a passionate day you have coming up! To have such significant events align on one day! Wow!

    I like your piano resonation. What a great moment.

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  4. Grace,

    Sorry it took me so long to respond: the Head Cold is still lingering but maybe it’s finally getting better? Also, therapy appointment and my older daughter needing lots of help with her homework, it piles up.

    “Yes, skin-to=skin was amazing with my babies.” You have little ones? I loved skin to skin, and Sophie was the one I got to do it the most with and it was so peaceful and sweet.

    I’m so sorry to hear that your husband was ill, so ill he needed to go to the ER. I’m glad to hear he’s on the mend, and glad that you stuck to your guns! Doctors can be amazing, but they don’t know everything, and hospitals can be less than ideal environments for recovery (especially considering the nasty bugs you can pick up in hospitals these days). It can be really intimidating to go up against doctors so good for you that you held firm!

    And thank you for appreciating that I held my tongue about my education. I know some might think I should have just thrown it out there to get what I wanted but how would that have helped any one else? Maybe, in the future this doctor will take that in consideration and be more willing to listen to all people no matter what their background is.

    Yeah, March 22nd is a great day for so many reasons now! Which reminds me I need to get cracking on pulling together some little celebration for the biggest and the smallest!

    Thanks again for taking the time to read my work as well as sharing your thoughtful comments and your own experiences. I love hearing from you!

    Maybe one day you, me, and Stephanie can throw a Bloggers’ Ball and invite all our fellow bloggers to a right-happening shindig!

    🙂

    ps why are parties/dances called shindigs? When you think about a shin dig it actually sounds quite painful . . .

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  5. I finally have some time to settle in to savor your post and respond with my full attention.

    I had little ones. They are all grown up babies now 🙂 My youngest is a store manager full time and in college full time. BUSY!!! and happy. My middle one just moved to the Boston area. He is in sales. My 2 daughters live a couple hours away from me. My oldest is a mechanical engineer. She and her husband have been building a house. They were supposed to move in when the house was completely finished, mid Dec. They chose a contractor who completed houses before the target dates. They just moved in a couple weeks ago, and workers are still finishing it.

    I hope you thoroughly enjoyed yesterday as you the celebration of all the blessings.

    My kids will tell you that when someone asks a question like, “ps why are parties/dances called shindigs?” I get to work looking it up immediately. I love getting into word derivations.

    http://dictionary.reference.com/browse/shindig
    “dance, party, lively gathering,” 1871, probably from shindy “a spree, merrymaking” (1821), perhaps from shinty, name of a Scottish game akin to hockey (1771), earlier shinny (see shinny (n.)).
    Online Etymology Dictionary, © 2010 Douglas Harper

    As long as I don’t need to know anything about hockey, I’m in for the Bloggers’ Ball shindig 🙂

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    • Ah! How did your comments get so lost in my Notification thingy (thingy = technical term, I believe!)?

      Wow! All grown up? And four of them? You must have had your hands quite, quite full. What’s the age difference between the youngest and the oldest? My two smallest are 18 months apart. They can sort of play with each other now; I’m hoping it won’t be much longer before true interaction can begin.

      Your oldest daughter being a mechanical engineer is beyond cool. I’m sorry to hear that her house still isn’t done yet. We had some experience with that when we had our basement redone several years ago. Was supposed to take two months, and it took 5 1/2.

      So, is it too soon for your oldest to be thinking kids? For you, I mean, not her. It’s really about how you feel about it. 🙂

      Thanks for looking up shindig, btw, that’s awesome! I will keep this in mind for future etymological questions.

      One day, we really will have to organize some sort of awesome blogger get-together and call it “The Blogger’s Ball Shindig”. I know Stephanie and Maggie would totally be in on that! Can we have a disco ball for our Blogger’s Ball Shindig? What do you want to bet Stephanie has one tucked away in her house somewhere?

      🙂

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  6. 3 kids: girl, boy, girl. 3 years apart. I don’t know how anyone has them any closer together. It took almost that long for me to be ready for another one. And then, the sister of a friend had quadruplets!

    Both of my daughters agree that their brother will have all of my grandchildren. We discovered that he’s really great with kids when he was in high school and taught swimming lessons to new swimmers. They assigned him the kids who were the most afraid. I am not ready for him to have any kids, but I look forward to being a grandmother. The only problem is that I think that a grandmother has to be old. It seems like my friends all got old when they became grandmothers.

    When I think of the word shindig, I am stuck with the image that you provoked of people doing the lindy, and kicking each other’s shins. I’ll show up in shin guards.

    Disco ball? Stephanie just told me that she has it hanging over her dining room table. I think it makes her table look more full of homemade-look-alike food. Hello? Stephanie? Click. I think she hung up on me. 😉

    Thanks for your friendship. I’ll keep checking my Notification thingy to make sure I don’t miss any of your comments 🙂 I see that you put up 3 new posts. I’ll stop back when I can stay a while.

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    • 3 years apart . . . this proves you are every bit as intelligent as I thought. This makes perfect sense! Wait until one is pretty much out of diapers and then another baby. Why didn’t I think of that? I tried to have the last two as close together as possible. I don’t know what I was thinking.

      As for quadruplets, just no. That’s never ok.

      That’s really sweet that your son is so good with kids. That’s what attracted me to my husband. How playful and gentle he was with my oldest (without being TOO much of a pushover).

      I completely disagree that grandmothers are “old”, at least, I don’t plan on being an “old” grandmother. I plan on being way hipper than my kids so that my grandkids think I’m awesome. And I just proved that by using the word “hipper”, a word last used in the seventies to indicate something was awesome. [sigh]

      I had a good laugh at your shin guards image. Because nothing says Good Times like wearing shin guards at shindig while doing the linty! (No, WordPress, I actually mean LINDY!).

      “makes her table look more full of homemade-look-alike food” Grace, that is TOO much! Serious case of the giggles now.

      I always love it when you stop by and I plan to do more poking about your blog. I think I may have missed a post or two, and we can’t have that!

      🙂

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  7. When our kids were toddlers, a friend of mine (who deliberately had her 2 as close together as possible) got so burned out, she had a developmental specialist come in to support her as she struggled to keep up with her younger one, while she stretched to keep connected with her older one.

    Even with my kids 3 years apart, I n e e d e d to have several hours each week for myself. alone. in quiet. to breathe.

    In my experience, the most intelligent women have the hardest time feeling confident as mothers. In my experience, women’s intelligence also seems to correlate with choosing men who are absent fathers. Not always the case; just a tendency. May be a modifying factor?

    In the 70s, my social circle called everything “neat” that might be referred to as “hip” or “awesome”. You are neat, my hip, most loyal follower.

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    • Burnt out sounds about right!

      Yes, confidence was hard to come by with my first daughter, but then maybe I had too much for the second. She has worn me down and out like nothing I’ve seen, and my first daughter was hard, really hard. She had some fairly significant developmental issues for several years and would throw autistic rages… but her 2 yr old sister puts her to shame. Lil’ Fifi can scream for hours. She is one of the most intense children I’ve ever seen. But she’s also so funny and so smart, she’s both a pleasure and a struggle.

      My husband is a wonderful father, very good with the kids… but, you know, cleaning, being home on time, those things, not so much. [sigh]

      Your hipness and neatness continue to astound and amaze! Finding your blog has been a highlight and a pleasure for me. 🙂

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      • I think that the hardest thing for me was deciding when to respond to my kids’ cries, and when to leave them be. I was afraid of spoiling them, but I cherished every moment with them to the extent that I got burnt out and wasn’t available when they really needed me, or so it seemed at the time. Sometimes I ran to attend to them because I missed them so much, and sometimes I reluctantly responded because I was so worn out. Difficult balance.

        If I had to choose, I would take a partner who is good with my kids over a partner who cleans and is home on time. Kids are so much more important. I can put the other stuff on the back burner. However, having a partner who is supportive of me is the absolute top criteria on my list. My husband taught me how much I value that.

        I have three posts to put up in the next few days, and then I will catch up with new ones that my friends put up. I’ll catch up with your new ones then 🙂

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