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Hospital Story

January 24th, 2007 by Joyce

Monday, the day the AVM burst (and I didn’t yet feel bad) playing at our favorite park.

Then I put babies to sleep. I fell asleep with David and woke up feeling bad. I thought I had some kind of weird migraine. My head hurt and I couldn’t see well, and slept, slept, and slept. I begin to lose words. On Wednesday I tried to see a neurologist but the appointment desk made a mistake, and scheduled me for the next day, instead. Thursday morning we decided we shouldn’t wait any more. A quick CT scan showed a walnut-sized clot in my brain. In the afternoon a doctor used an angiogram with contrast dye to better plot and measure the size of the AVM. Then they sent me to ICU. That evening we consulted with our neurosurgeon and scheduled our surgery the early next day. Late at night I had two MRI images to help map the brain for the surgery, and the dots on my head helped guide the MRI images. This is what I looked like after the MRI. I am smiling in the picture, but I’m scared out of my wits.

The surgery should have taken a few hours, but it took ten hours to remove the entire malformation. Then I slept in the ICU while doctors made sure I was stable. The next morning my shunt and intubation came out, and I recovered for several days in ICU. Tuesday morning, I was sent to the regular neuro floor. I saw my incision for the first time. Wow!
The next day, Wednesday, I was sent home. I missed my babies. My babies missed me, too.




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Two. Two.

January 23rd, 2007 by Joyce

Two babies turn two today.

Bonus–I’m beginning to remember some songs today, too. Like the helicopter song, and of course, Happy Birthday.

Brain is still so addled. Some days worse than others. After realized I hadn’t slept in, oh, two weeks, we decided to try a different medicine (Keppra from Dilantin, if you cared) to see if I could feel a little better. Not sure how well it will work, but I slept last night and most of today, too. We’ll see how my body reacts after it’s been in my system for a few days. But the rest of it, well, we’ll just have to wait, wait, wait and give time to heal, heal, heal.

Tomorrow I see my general practitioner, and then Thursday Dr. Chen removes the sutures. Too bad. I’m beginning to like the Frankenstein look.

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A Week

January 19th, 2007 by Joyce

A week ago I slept in an ICU bed at St. Luke’s. It was a dreamless sleep.

But today I am at home, and this afternoon even dreamt of beaches and conches and O’Keefe.

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Some Parents

January 16th, 2007 by Joyce

Some parents a baby book. Some parents have a scrapbook. We have a blog.

And part of the purpose of this blog is to help us remember these first few years of parenthood and perhaps share some of these memories with C&D as they get old enough to understand. For example, if they ever ask “how tough is it really to raise twins”, then we’ll have some evidence to back up our answer.

And while most of this blog is about them, occasionally something important enough happens to mom or dad that is important enough that it might affect them as well. Like, for example, the last week.

Last week we learned that if you ever see all of these strange things happen to you at once, it’s probably something kind of important:
1) Big headache
2) Bigger headache
3) Kinda dizzy
4) Can’t see straight
5) Not quite sure if you can talk straight either.

Now, (1) and (2) have lots of explanations that make perfect sense. David’s bucket of balls (his aim is getting better!), Carmen’s cobbler’s bench toy, where you hit some wooden balls, and then someone’s head, with a hammer, and lots of other daily events that are of no long-term consequence. Similarly, (3) and (4) are natural results of either baby waking up at 4:00 AM and declaring “All done sleep. Upstairs. Crack eggs. Make Pancakes!” A few nights of that, and you won’t see straight, either. And after dealing with babies for two years straight, (5) doesn’t surprise anyone either.

But when all those things happen at once, and don’t get better after lots of sleep and several days where David’s balls and Carmen’s hammer are put away, then it means that there is something more serious than that. Last week, it meant that a weak blood vessel (an “AVM“) had burst in Joyce’s head. It wasn’t a big event as these things go, but it was in exactly the wrong place, affecting both language and vision.

Major surgery and five CAT scans later (and some angiograms and MRIs for good measure), Joyce is still with us and recovering well. She has some trouble focusing her vision and sometimes trouble finding the right words, but the doctors claim that even these relatively minor impacts will eventually pass. Importantly, her wit, wisdom, memory, and personality are still intact, and she is looking forward to getting back to her babies – and this blog.

We’re still trying to make sense of this whole affair. The day that the AVM burst Joyce and her mother had a wonderful morning together with the babies. From that strange afternoon–during baby nap–to a few days later, Thursday in the ER, wondering if she would be able to talk again, to see again after this was all over. How one seemingly small thing can switch everything in your life – there must be some lesson and perspective to be learned from that, but we’re not quite ready yet to think it all through.

And the kindness and humanity of everyone around us, from the family members taking care of our babies to the nurse who sat and cried with us as we understood the situation and our options to the medical student who held Joyce’s hand as she fell asleep on the operating table, wondering if she would wake up the same person the next morning, or even at all. Thank you for the smiles, the hugs, the ice packs, laughing at Joyce’s jokes (though a little slow on the delivery), and, most importantly, the prayers on wings that remind us that people love Joyce.

–Matt

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Guest Blogger Returns

January 1st, 2007 by Joyce

Well, not for too long. Almost lunchtime, and need to go see if the avocados I bought yesterday really are ready to eat, or if the Ripe Sticker is as false as it usually is.

But C&D finished their lunch, and what a lunch it was. They split a bag of tater tots (after grabbing the last one, David noted “Potatoes all gone!”), along with some salmon and peas. But that last potato was special – David figured out that if he smooshed it the right way, it could come out looking like a choo-choo train. I can’t say that it had all that close of resemblance (it looked more like two blobs), but I’m not an expert. David’s experienced opinion was that, yes, this really was a choo-choo train, and it could chug all around the table.

Your regular blog author has been busy finishing up some old blog posts, too, but even though they haven’t been published before, they’re hidden back in the archives because they were started a few months ago. Two from September (here and here), and one from October.

–Matt

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New Year’s Day, 2007

January 1st, 2007 by Joyce

I have on my desk, in my car, in my daypack, on my dresser, even in my bathroom dozens of one-line notes on lonely scraps of paper. They are on sheets of printer paper, the backs of wrinkled receipts, and torn pages of notebooks. Dry-erase markers have colored the corners of my bathroom mirrors.

I’m trying hard to remember the way the mundane day-to-day becomes sparkling and special when C&D are in it. The morning routine is full of giggles and horsing around (“tick-oh Dah-men butt!”) and the simplest observations inspire a song or two or three. Both special events, like a trip to the zoo, and the routine, like or a visit from the trash truck (several times a week on this busy street, and C&D think we are lucky), become spectacular. The drudgery of unpacking and repacking (how to arrange a houseful of furniture, books, beds and toys into the new place?), a long list of home repairs (what’s that smell?), and keeping up with two little people who are already more clever than I leaves little time for a quiet hour in front of the computer. In fact, it’s not even much of a priority.

But here I am today, anyway. I have a long list of other things I should be doing like laundry, dishes, or lunch, but I am starting to forget those little things I wanted so much to remember, and I have already lost some of my notes. Let’s see how much I can jot down before C&D wake up and remind me of my responsibilities all over again.

Note One: Co-sleeping

Matt and I began co-sleeping because it felt like the right thing to do. For one thing, we all slept better. Matt and I found security in sleeping with our greatest treasures bundled alongside us. Our hungry babes didn’t even need to cry before Matt and I were awake and ready to change and feed them.

But oh, the snuggles. There are few things more sublime than sleeping with David, his warm little body nestled against mine. Sleeping with Carmen means an arm wrapped around a leg for a while, or a hand wedged for warmth under my belly until she rolls away, her body upside down and sideways on the furthest corner of the mattress by morning.

Because we co-sleep, Matt and I also know exactly how it is that our babes wake up and fall asleep. Carmen lately likes to fall asleep slowly scratching and pinching my ankles with her fingernails. She tugs off any covers, pulls down my socks, and let her fingers start to work. The effect is something like standing in my sneakers on a bed of fire ants, just as the ants start to bite. I grit my teeth and just let her get it over with because come eight-thirty, nothing is more important that getting that baby asleep. Fortunately, she doesn’t do that every night. Some nights she rolls and kicks up her legs while reciting the events of the day or the text of a favorite book. Other nights, she sings. A few nights ago, lying next to her and pretending hard to sleep, I heard “Oh Christmat tree, oh chrismat tree, how pretty are da brashes. Oh Christmat tree, oh Christmat tree, how pretty are da brashes.” I lay still, but I wanted to clap and ask her to sing again. My baby singing! The next morning, Carmen woke up talking about things only she understood. She was smiling.

David likes to fall asleep in Matt’s arms, reading, or sometimes just staring at a book. Especially the tractor book. Does he dream of combines and hay balers at night? As if the world and everything in it is too hard to forget, when David can’t doze in front of a book he asks to be rocked. And rocked. Sometimes his body shudders, and his hand grips Matt’s shirt harder. You don’t want to put him down too soon. He’ll scream in frustration and throw himself on the floor and you’ll have to settle him down all over again. So to be extra sure David is sleeping, Matt rocks a little more. When Carmen did this months ago I whiled the time away by watching junk television, giggling at bad jokes and clucking at the commercials that weren’t closed-captioned. Matt, on the other hand, wears a headlamp and reads magazines like Wired, National Geographic, Newsweek, Texas Monthly, Texas Observer. When he runs out of magazines he reads books, one-handed and slouched with David in his arms. In the dark almost-morning, David sits up, blinks, and announces, “All done sleep. David and Daddy go uhp-stairs. Crack eggs.” And with breakfast already on his mind, he is ready to start the day.

Note Two: Mother Jukebox

It’s no accident that Carmen likes to sing. For months I’ve been feeling like a human jukebox, subject to song requests at dinner, in the car, in the bathroom, and maybe especially in public. The sight of an emergency vehicle or even the off-duty police officer at Whole Foods brings up a request for the Signing Time police officer song. The arc of the streetlight, and the rainbow song is dialed up. In the morning when we all wake up I have to sing, of course, the good morning Song. And then later the lunch song. And then the dinner song. And before bed we always sing the sleep song. After singing the same songs over and over again I realized it was time to unplug the jukebox. “YOU sing,” I told C&D one day. They smiled and shook their heads no, and asked to hear their song again. Then one day C&D decided they could sing along, but only sometimes. They still preferred to act as my audience of two.

Recently C&D finally decided to try singing solo. Sometimes they break out in song on their own, other times they need a little encouragement. Car trips and other occasions for singing go something like this:

Carmen: “Choo-choo train. Mommy, sing.”

Me: “How about babies sing?”

Carmen: “Choo, choo, choo-choo, woo, woo, woo-woo. Now Dadee turn.”

David: “Mommy sing.”

Me: “Uh, let’s hear David sing.”

David: “Choo, choo, choo-choo, woo, woo, woo-woo. Mommy turn.”

Me: “Why don’t you sing some more?”

Carmen: “Daddy turn.”

Me: “Ohhhhh, that’s okay, Mommy will sing. What do you want me to sing?”

or:

Carmen: “Pah-lee ‘fficer, fire-fiyer, doctor, nurse, help me hurt, help me when huurrrrrrrt.”

Repeat. A lot. I mean, seriously, at least a dozen times. Sometimes Carmen will hand it over to David, and then David will sing a few rounds and tell Carmen it’s her turn again.

I like all the singing, especially when I’m not the one doing it. I love their little voices, and their off-key improvisations when they can’t remember all the words. And I love the way the repeat the parts they do know over and over, as if hearing just that part is as good as hearing the whole song. It’s like we’re becoming a regular Partridge Family. Without the weird clothes. And we don’t sound so good. And they’re less of us. And did I say we don’t sound so good?

Fingerplay ranks highly around here, too. After watching me do it a few times, David likes to practice the “Here is the church, here is the steeple” fingerplay during idle moments. He knows all the words, but can’t figure out how to interlock his fingers (yet). This week Matt’s parents arrived from California for a quick visit. Matt’s mother tried to sing “Head and Shoulders” with C&D but neither knew it, so she moved on to something else. But they were listening. That night as Carmen settled herself to sleep, I watched her sing “head to toes, head to toes, head to toes” and gesture in the semi-dark. The next night, she tried again, this time singing “Head and sh-shrs, knees and toes, knees and toes, head and sh-shrs knees and toes, knees and toes,” then she paused for a second, trying to remember the rest. “Eyes, ears, nose, knees, toes!”

Note Three: Sensical

What is your favorite of the senses? When C&D were small enough to be cradled with one arm, I remember holding them close, their downy heads against my cheek, and savoring their new-baby scent. I had never known anything like it, pleasing and visceral and almost delicious. I wanted to always remember it.

Now, with their singing and chatting, I am taken by what I hear. What sweeter sounds than their first songs, observations, and honest conversations?

Note Four: Snake is to . . .

As we learn new words, we learn to identify things that remind of us those words. This is how we practice our grasp of a language. For instance, several weeks ago I squiggled a squirt of ketchup on David’s plate. “’nake!” he said, and laughed. Yeah, that looked like a snake. Then a couple of weeks later, David looked at the product of Carmen’s efforts in the baby potty. “Nake!” he observed again.

Note Five: Coming up for Air (or Not)

  • Carmen likes to feel in charge. “No bite!” she commands, with her finger waggling, ducks at the park, dogs on the street, random cats, and anything else that might have a mouth.
  • C&D attended a music class at Parker Elementary. I think we were the only students who hadn’t taken a class before. While the other children obediently marched in a rhythmic marching circle, C&D stood in the middle of the crowd and watched. The week Carmen learned how to hop, she hopped in, around, and through the neat circle of seated cross-legged children. When, after a few visit David finally felt comfortable, he walked over to the bucket drums and began distributing then while our teacher let the class to “Pussycat, Pussycat.” Our next song necessarily involved the drums.
  • We like games. One of our favorite recently? Lie down on the bed, the floor, the stairs. Say, “I asleep!” Don’t close your eyes of course, because you don’t want to miss anything. Then, sit up. For emphasis open your wide-open eyes even wider, and cry “I ‘wake!” Then go back to pretending sleep. And awake. and sleep. And awake.
  • One day in September, Carmen decided she didn’t need to sleep despite hours of nursing, rocking, and shushing. This is from the transcript of the chat between my mother and I the night after:

    [22:05] We were watching Andy Griffith at 3:30 in teh morning

    [22:07] I asked her, Carmen, do your teeth hurt? “Teets hurt.” Are you sick? (signs sick) “Sick.” “Head hurt.” Your head hurts? “Head. Potty.” Carmen has to go potty? Noooooo. Carmen hungry? “Bread.” Carmen, let’s sleep. “puh-waaay.” No, no, play Carmen, sleep. “Rock chair.” (And she signs rock . . . like stone . . . and chair)

    [22:08] Then Matt said when he got her, he asked her, Carmen, do your teeth hurt? “Teet hurt.” Does your leg hurt? “Leg hurt.” Does your nose hurt? “Nose hurt.”

    [22:08] And he figured, you know, 2 out of 3 of those HAS to be wrong.

  • C&D love pomegranates (called Pom-a-minutes). I’m glad, but also a little sad. Isn’t there anything I can keep in the kitchen that they won’t find and eat first?
  • What are the terrible twos for David? When he throws his food? Asks to be carried, rocked, and held tight like my more important treasure? And what about Carmen? Are terrible twos when Carmen tries to put on my underwear? Did it start when she learned to jump on the bed and land with legs folded and ankles tucked? Or maybe when she learned how to somersault on the bed? What about the time when I thought she was sleeping, but found her partially under the bed, arms outstretched to catch the hiding cat? All of these things she shouldn’t have been doing, but Matt and I were too astounded to stop her.

Entry started 1 Jan, 2007; finished and edited 16 October, 2007. Better late than never.

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