Poop

Don't all new parents love to talk about poop? Well, I'll tell you the truth. I didn't love this poop. One nice thing about all the solid-food eating is the nice, solid poops that go along with it. Ellie has been feeling kind of yucky (join the club) and hasn't eaten much solid food today. I have been pretty cavalier about this. She doesn't seem too sick, isn't too feverish, etc. Toddlers self-regulate. She'll eat when she's hungry.

I heard her wake up and fuss after her nap earlier, but I ignored it for a few minutes while I woke up myself and got a drink (water! I swear!). She didn't sound like she was going to go back to sleep, so I went in to get her. The minute I hit the doorway, I knew I was in for a treat.

When she was a wee one, we had instances of those classic breastfed poops refusing to be constrained by the dappi (diaper cover) and oozing their way out onto her pajamas and occasionally even the sheets. Well, she's bigger now. And she moves around.

Nasty nasty nasty. Her entire outfit (including shoes!). Her hair. Her body. The toys in the crib. The sheet. The mattress pad. Then: the changing table cover and the extra cloth diapers used to help absorb things. She was one crabby little girl by the time I had her thoroughly wiped off and dressed in clean clothes. This is one glamorous job, I tell ya!

If there was a way to capture the pure essence of a moment - the sight, the smell, the need to drop everything to caringly and rapidly fix what's wrong immediately - I'd love to bottle this one up. I'd carry it around with me and spring it on the unsuspecting jerks who refer to maternity leave as a "paid vacation". And that's not even getting into the "paid" part. I'd also save a little for the thoughtless few who ask me what I do all day or suggest that I take over some major responsibility of theirs since I "don't work." I get less of that now. I guess 12 hours a week is just enough paid-work to make people feel like I'm contributing to society again.

Navel-gazing

I think I have blogger-block. I haven't known what to say for a few days. I just finished The Lovely Bones, so that's part of it. I mean, what to you say to that? Well, you go look at your sleeping child and wish a little bit that she'd wake up so that you can kiss her cheeks and hug her and tell her how much you love her, today, tomorrow, and always.

Who hasn't laid awake late at night, imagining the world if you died? The event of your death, the notification of your family, the aftermath . . . it's a self-indulgent, masochistic fantasy. I really enjoyed this activity when I was 14, though I also admit to having indulged in it much more recently. I really hope I have some notice before I die. I would certainly clean up my room. Organize my finances. Buy more life insurance.

Today was Ellie's fourth day at school. Again, she didn't cry when her daddy left her. And she had a lot of fun, I'm told. Then again, who wouldn't have fun when the day's main activity is to find raisins hidden in Cool Whip? Especially fun for a kid who doesn't often get sugar at home (her three different first birthday celebrations being noteable exceptions, along with any trip to Grandma's).

I am glad that she is in school and that it's going so well. I am glad to be back at work. I am glad not to be back full-time.

I am so very lucky right now. But you know what? Since I'm feeling all self-indulgent and tangential - I think I deserve a little luck. Monday, Ellie had another appointment with her ENT and Chicken Little, the audiologist. It's not fair that Ellie has to go to the doctor so often. It's not fair that every time things are going smoothly and I start to relax, we have a blip on the radar screen. Some people have it so much worse. But it's exhausting being on guard all the time. I mean, how do you handle knowing that your kid, while wonderfully healthy now, is at higher risk for little thinks like vision problems, hearing problems, speech problems, developmental delays, and leukemia?

So I'll take my luck right now, thankyouverymuch. I won't look this gift-horse in the mouth.

Community Support

Maybe this isn't news to anyone but me, but a really really cool thing has been happening lately. A little community is starting to develop amongst blogging mothers of children with disabilities or differing abilities, or children who don't fall totally into the realm of "typically developing" for one reason or another. These mothers are blogging and reading each other's blogs and commenting and building a really wonderful, supportive community. Recently I've felt it happening and felt included in that, and it's a wonderful feeling. Thank you.

The Daily Show

I love The Daily Show with Jon Stewart. I TiVo it and watch it religiously. It has helped to keep me sane in the political climate of the last 5 years or so. But a few things are really pissing me off about The Daily Show, and I think I'll rant about them right here and right now.

1) Comedy Central. I couldn't watch The Daily Show at all without TiVo to filter out the utterly assholic misogynistic crap that comprises the bulk of Comedy Central's programming and advertising.

2)Pussy. Fuck you. Say pansy instead, or better yet, quit thinking that it's hilarious and appropriate to ridicule men by suggesting that they're effeminate.

3) Tuesday's coverage of Condelezza Rice's confirmation hearings. The "Secretary's Day" graphic was a bit beyond the pale, but when paired with the extended "Cat Fight" analysis of Rice's questioning by Sen. Barbara Boxer of California it just went over the top.

Yeah, I know the arguments:
A) But, it's funny. Feminists don't have a sense of humor. (Hah hah. Now, that is funny!)
B) Politically correct humor isn't funny. (Yeah? Or maybe you're just too stupid to get it.)

The fact of the matter is that woman-bashing jokes (and this includes jokes about men that are really woman-bashing jokes, as well as epithets like "son-of-a-bitch" and "pussy") are a cheap and easy way out, when the writers want to toss on a punchline and they're too tired to do the work to find something that's actually funny. When Stewart et al get it right, they are really really funny. And then they sometimes go for the easy laugh. Please. I prefer the fart jokes.

And the truth of the matter is that woman-bashing jokes just aren't funny when women are, you know, bashed. All the time. By men. As long as the leading cause of death for a pregnant woman is homicide, usually by her husband or boyfriend, as long as at least 1 in 4 women will be sexually assaulted in their lifetimes, usually by men they know, as long as women are endangered by men, misogynistic humor just isn't funny.

And less seriously but more related to the topic of the The Daily Show's coverage of Rice's confirmation hearing, I'm glad they pointed out that it's unusual to have a woman in this position. I'm glad they pointed out that it's unusual to have 2 powerful women in government in the same room at the same time. But I wish they'd made the point in a way that was less offensive to women everywhere. Especially while we've never had a female president or vice president, only 14% of our nationally elected officials are women, 70% of people in abject poverty are women, and so few of our major companies are headed by women.

Speaking of business, did you know that it made news that a whopping 8 of the Fortune 500 companies have female CEOs? Wheee! Less than 2%! Better yet, "as a group they outperformed the broader market by a substantial margin." This is supposed to be a good thing? I don't think so. It should not be news that women can be successful in business. It should be news that women still have to be better than men in order to get a crack at the same damn jobs.

What Separation Anxiety?

Today Paul left Ellie alone at school for the first time. We rarely leave her with anyone else, and and when we do she always cries. Lots. So Paul stuck around, and stuck around, and was really really late for work by the time he finally stood up to go.

He said, "Bye bye, Ellie."

Ellie looked up from where she was busily playing with her teacher. "Buh buh, Dada."

And that was that.

Phase 2

I did some things today that I haven't done in a long time. I set an alarm. I woke up early (read: before I wanted to, but not before the baby). I took a shower. I wore makeup, earrings, brand-spanking-new clothes, and shoes that don't just slip on (beautiful boots, in fact).

I nursed the baby, laid out an outfit for her to wear, kissed her and her daddy goodbye, and went to work. To work! To work! I went to work!

During our little re-orientation session, my new boss (and former colleague/coworker) asked me a question. He interrupted my answer to say, "This isn't an interview. You don't have to-"

"I know. But I'm just so happy to be back. I love this job. I really do."

I am so glad that I was able to stay home with Ellie for 15 months. I know how fortunate I was to be able to do that. But I really really wanted something for me, something outside the house, something to exercise my brain in the way that work did, something that I'm really good at and gives me a sense of power, something that will help me feel like I'm making some money, too. Plus, I love what I used to do. And I've got the perfect opportunity to do it.

A few months ago, my old boss called me. "You know how you said you'd like to work part time? Did you mean it?"

"Absolutely!" (Never display doubt. You can always renege later.)

"This hasn't been approved yet, but it's a pretty sure thing. How's this sound: 3 mornings a week in the office. No working from home, including checking email and voice mail. No travel. Your own office. The same title and position you had before (but one subject area rather than 9). More money per hour than you were making when you left (if you break out my former salary into an hourly wage)." No benefits, of course, but that would be too good to be true.

Can you tell that she's a mom too? And that she wished she'd been able to stay at home for a while when her kids were little? And that she thinks that women should help each other out in the workplace? I do love her. So, yeah. I'm back at work. Today went great. I love it. Ask me again on Friday, when Ellie is alone at "preschool" and her daddy doesn't take the morning off work to stay with her in her classroom all morning.

Who, me?

He knows me so well.

Eyebrows

So, tonight I was trying to wax my eyebrows before bed. (You didn't know that I do that? I do. Not as often as I should, apparently.) I used to use the wax you heat up in the microwave. Then I found the stuff that you just hold over an open flame for 4 seconds then apply. I put a kleenex on the vanity to catch any drips of melted wax.

I was using a different lighter tonight, and it must have a hotter flame or something. Because I set my kleenex on fire - twice! Sheesh. I'm so tired that it took me a moment to process it. Huh. I stopped holding down the button on the lighter thingie. But there's still a flame. Pretty! Then I blew it out.

Anyway, this reminds me of the worst time I ever mucked up my eyebrows. It was two days before my sister-in-law's wedding and I was running late, as usual. I was trying to wax my eyebrows in a hurry then jump in the shower then finish packing then hurry to the airport to get to the wedding.

I didn't wait long enough for the wax to cool (this was back in the microwave days). It was still pretty hot when I slapped it onto my skin, but it's always hot and I didn't pay too much attention. I ripped off the wax, it hurt, and I cleaned up the area with tweezers. Then I took a really hot shower. Later I noticed that a scab was forming over my right eye. A big, ugly scab. I'd ripped off some skin with the hot wax. And burned the sensitive skin underneath. And compounded the whole situation by pouring really hot water over it for 10 minutes in the shower.

There was no hiding this ugly scab. When I got to Virginia, my sister-in-law and I went to have our nails done. The technicians asked me what I'd done to my face, then spent a fair amount of time snickering and making fun of me in Korean. I couldn't understand their words, but the meaning was pretty clear.

And the next day, the wedding day, the poor woman who was doing make-up for all of us in the wedding party didn't know what to do with me. "I can't cover that up," she said. She tried valiantly. And I just looked like I had a terrible growth above my right eye.

Yet I still wax my own eyebrows. I never learn.

Caveman

Sometimes, I live with a caveman. Those who know Paul in real life will not believe me. But I tell you, this guy can be moody! That's not when he regresses to a pre-verbal state, though. That only happens on two very special occasions.

First, when he's holding a sleeping baby. The baby has fallen asleep in the car and he's bringing her in. "Hi!" I say, softly. If I'm lucky, I get a slight grunt. Anything more expressive would wake the baby (the baby that has slept easily through home repairs and tornado sirens). And that includes anything that would involve moving the face, like a smile. Later, I might get a "Sorry, I didn't want to wake the baby." You gotta watch out for those 100 watt smiles. They're like alarm clocks.

Second, when he's sleepy. Oh, man, I have never been able to understand this guy and sleep. When he's sleepy, he sleeps. Once, we were at a lock-in at a YMCA, playing spades, and he fell asleep on his cards. Several times he's left a party, presumably to go to the bathroom, and I've found him much later fast asleep on the bed in our room. When he's tired, nothing keeps him awake: not will-power, not responsibilities, not lovin', nothing (and that's about all the detail I'll go into on that point, thankyouverymuch).

And when this guy is sleepy, he's hardly human. This is especially annoying or funny, depending upon how tired I am at the time, given that he's so sweet and considerate most of the rest of the time.

One recent morning, Ellie woke us up early. Waaaaay too early. I woke first, stood up to slide my feet into my shoes, and - 'click.' That would be the bathroom door shutting. Guess - just guess! - what I was planning to do first thing in the morning. Right. So I sighed and sat back down on the bed and waited. And waited. Eventually, I said, "Paul?!"

"Huh? Ungh."

He'd been sleeping in there. OK, well, now I'm going in there and he's taking care of the baby, right? Nah, he's fast asleep across the whole bed when I come out of the bathroom. This later became a big fight (hey, we were tired, OK?) but we all know who was really at fault, right? I mean, where else was I headed first thing in the morning before he cut me off?

Ellie will go weeks without waking in the middle of the night. Then suddenly she'll wake at 4:00 am 4 days in a row. On days when neither of us works the next day, we share these nighttime duties. But just try to talk to him as you're trading off the baby and the rocking chair. I dare ya. "Honey, you look tired. I'll take her for a while and try to nurse her."

"." He hands over the baby and stumbles back to hog the whole bed again.

This whole post would be a lot funnier if I could bring myself to make him sound really bad, but I can't and I can't deny that he's the one who gets up first with Ellie almost every single morning so that I can get a few extra minutes of sleep, since I stay up doing this after he goes to bed. Good husband.

Life in the PICU - part 4

One of the most interesting parts of Life in the PICU is the people. (Are the people? No, is.) Doctors, nurses, technicians, patients, and the other families. Oh, the other families.

Only two "visitors" are allowed in the PICU room at a time, and that includes the parents. Most families are greater than two, and so there are always people in the waiting room outside the PICU. At some point while Paul and I were first in the room with Ellie, my mom scored us some sleeping chairs in the family waiting room, made friends with some of our neighbors, and secured a promise of better digs (in a corner alcove!) once the family "next door" headed on home.

It took me a little longer to tune in to the other parents, but eventually I became interested in them and began to learn their stories and routines. Some were sloppy, and some liked to stay up all night talking and then sleep during the day. Since we were in shared space and I am a light sleeper, I found this particularly annoying.

The family waiting room looks a lot like a large, oddly shaped waiting room (surprise! bet you were expecting a simile) full of teal chairs. The chairs fold out into "single beds" at night, and we were each provided with a sheet and a thin blanket. Lockers could be rented for security. Space everywhere was tight. The doctors and nurses asked us how far away we lived and when I explained that we lived in the metro area, they seemed surprised that we didn't go home at night. How could I check on my baby at least every hour, if not sit by her bedside all night, from 20 miles away? Perhaps I should have felt guilty about taking up unnecessary space, but I didn't. And I don't. Leaving the hospital was simply not an option, and there were no families without beds. Most of us were shift-sleeping anyway. My parents slept at our house.

One family next to us came from Kansas City. Mom and Dad were there, along with Grandma (younger than my mom for sure!), auntie, and "big" sister (who was a toddler herself). They'd been at the hospital for about 2 weeks and no one was sure exactly what was wrong with their baby's heart. Can you imagine never leaving the hospital for 2 whole weeks? Living inside a hospital makes living inside a mall look like cheerful realism. There was a room at the Ronald McDonald house, but they didn't want to be that far away. Eventually, dad had to return to work and grandma and big sister went along with him. Mom and her sister were left alone. The sister had a pair of scrubs that she wore to every meal to get the staff discount in the cafeteria. Can you imagine having no money and having to live in a hospital? Ugh. After a week, I was so sick of grilled cheese and stale salad bar, I thought I might never eat again.

A young family across the aisle were there because some surgeon (not Ellie's!) had messed up a procedure. It seemed a universal theme - when it came to matters of the heart only Dr. H. could be trusted to get it right. One man had flown in a donated corporate jet with his son - and a donor heart !! - from the west coast so that Dr. H. could perform a heart transplant.

The family in the coveted alcove next to Paul and me were visiting from northern Missouri because their teenage daughter had viral meningitis. They were all set to go home (and give us their alcove!) several times, and each time the girl had a set-back. They were still there when we left.

It's so strange to me that for a week we sat with these people, slept with these people, cried near these people, and shared so many experiences together . . . and now I have no idea what's happened to their children. I don't even know their names.

Life in the PICU - part 3

Here is a link to some pictures of Ellie in the PICU as well as Paul's emails to friends and family throughout.

I feel compelled to explain or make excuses for some of them, but I won't. It's not pretty.

What Babyproofing?

I was reading SBFH's account of her evening and it made me laugh aloud. Here's my evening of child wrangling.

Fussy baby wants to pound on the keyboard while daddy makes dinner. I sit her on the floor - one foot away from me! - for a moment while I hook up the baby keyboard.

Ominous silence. I look down. Baby has found a flower pot and dumped it all over the carpet. She is covered in dirt and has a huge mouthful. She's busy trying to shovel more in. This is a child who won't eat fruit. No pears, but dirt is A-OK.

We get her cleaned up and sit her down so that daddy can finish dinner and I can vacuum the floor and remove the emptied flower pot.

Splash! (Doggie water dish goes up onto counter.)

Clank! Rrrrrrrr (Empty doggie food dish rolls across the kitchen floor.)

I wash her hands again and move the baby to the middle of the family room floor, amidst hundreds of appealing toys and several more appealing non-toy items like furniture to climb on and DVD cases to dismantle.

Whirrrrr. (That would be *something* going into the DVD player.)

"Oh, no, honey, don't touch the DVD player" (Mama shoots a meaningful look at daddy that clearly says 'entertainment center.')

Daddy laughs. "Weren't we going to baby proof the house like 4 weeks ago?"

Mommy glares. "Like 5 months ago."

Seriously, though. Other parents complain about this stuff. We're thrilled. I immediately called my parents to brag. Curiosity! Mobility! Strength! Problem-solving! (That flower pot had a plastic lid covering the dirt.) Typical toddler behavior! Goooooo Ellie!

The Hug Game

I was wrong. The glasses game is not the funnest game in the world; a new game has earned that title.

At 15 months, Ellie plays the usual toddler games. She throws things on the floor to watch us pick them up and she sticks her hands into our mouths to see what will happen (I bite her fingers with my lips over my teeth, which she finds hilarious).

This morning, she taught me a new game. In this game, she crouches on my lap, facing me. Then she grins and springs at me, wrapping her arms around my neck in a tight hug. After a moment she shoves off of my chest so that she's crouching on my lap once more and repeats the process.

Sure, this game lacks a certain competitive edge. If it were packaged in the store it would be more like Girl Power than, say, Wizard's Chess. Still, it's the best game I've ever played.

Like I say every month, I love this age. This is the best age yet.

Intuition

I want to say something about intuition, but I don't know what to say. I don't really believe in it. I believe that intuition is just the right brain doing its thing really well. Intuition is picking up cues and putting things together so well that we don't even understand what we're doing.

But I can't deny that I have experienced intuition that goes way beyond that. When I was a child and teenager, I could tell what people were like inside. I could tell when people were being fake and when they were honest. Friends would gush over a movie star and I wouldn't understand what the fuss was about. I could see what he was really like, and he was not handsome at all. It's possible that I just had a teenager's black-and-white world view, but I usually think it was more than that.

More seriously and more recently, there is Ellie. When I was pregnant I had those middle-of-the-night panic attacks where my body was trying to tell me that something was wrong. There was no reason to assume that Ellie wouldn't be healthy. It was a perfect, relatively easy pregnancy. The ultrasound had been fine. How did I know that all was not as it seemed?

And how did I know that the surgery would go well? I don't know. I can't analyze this. But I believe it and am grateful for it, nonetheless. I don't like surprises. I like to be prepared.

Life in the PICU - part 2

You might expect that this part would start out with, "The next 5 hours were some of the longest and hardest of my life." Not true. (And I'm going to note right here that I'm typing this from memory, not checking my notebook full of notes, so some of the details might be distorted.)

We knew, because the nurses and doctors had been very thorough in educating us, that the most dangerous times were going under and coming back up. And we were still sure that Ellie wasn't going to survive the surgery. I mean, they stopped her heart! Who hands her baby over to a stranger to stop her heart? I felt like an awful mother. After all, this was "elective" heart surgery (without which she would not have lived very long, but hey, it's an insurance world).

Paul and I retired to to the surgery waiting area, where there was a private mini-room just for us. My parents and sister arrived laden with goodies and brought all of our stuff down from 7 West, so we were 5 adults and way too much stuff in a tiny space. We waited. I knew that it would take a while to get her prepped and ready, to do the "cut down" (slit her wrist to put in a line), to take her under, and to hook her up to the heart-lung machine. Finally, the nurse came in and told us that she was successfully under and they were beginning the procedure.

Immediately, a fog lifted from me. The world came back into focus. I felt alive again. I knew that my baby was going to live. I became more animated, talking to my family. I pumped, because I wasn't going to be breastfeeding anytime soon. We began to play a spirited game of Bohnanza.

Ellie's kickass Cardiologist came in a little later, to let us know that the procedure was successful and they just needed to finish up and close. I was surprised at how little time had elaspsed (under 4 hours) but I was not surprised that the surgery had gone well. I already knew that, somehow. Dr. Sharkey seemed a bit surprised to find us happily playing a game.

Thanks to my good friend Tina and Spencer's Fund, we had a wonderful lunch delivered right to the hospital. We were eating enthusiastically when the surgeon, Dr. Huddleston (referred to by some as Dr. God) came in to give us the run-down and tell us that it would be OK for us to go grab a bite to eat; Ellie would be transitioning to the 7th floor PICU and we could see her in about 45 minutes. Surgery was sucessful. Very slight mitral insuffieciency, as expected. This was later downgraded to "insignificant" - in other words, she has a very slight heart murmur. Dr. Sharkey assures me that Ellie can go out for soccer next year, no problem.

We moved all of our stuff back up to the 7th floor, still unable to find lockers in the family waiting room, and waited for the nurse to tell us that we could see our daughter. The appointed hour came and went. After about 15 minutes, I marched in the PICU and asked the woman at the desk when I could see my baby. I was getting anxious again. What was the delay?!

She called Ellie's PICU nurse, Mary, who came out and got us. As Mary walked us back to Ellie's room, she tried to prepare us for how Ellie would look. We'd been warned about this. She would have tons of tubes and wires coming out of her. She would be on a ventilator. She would be on an external pacemaker. She would be very sick. I was stunned when I saw Ellie for the first time after surgery. I didn't care about the tubes and wires and noises. She was there! She was warm and pink! Her chest was rising and falling. She was alive!!!



This is the first night, after they cleaned her up a bit more. Those are my hands. Don't the PICU cribs look like little jails? She wore a diaper for "modesty" since she was catheterized.

Now that we've gotten through preparation and surgery, the next part will be about our days in the PICU. I also want to talk about our short time back out on 7 West before we went home, and those first days at home.

Last year

The "what's the first sentence of each month for the last year" meme, from Delany via Frog:

June 2004: People keep telling me that it's "interesting" to hear my perspective on choice, given my situation.

July 2004: I don't know how to describe what it feels like to love your child.

August 2004: About 3:00 this morning, I started hearing a racket from the nursery.

September 2004: When asked if they want to have a boy or a girl, "good" people respond, "I don't care, as long as the baby is healthy."

October 2004: My first car: The fall of my senior year of college, my father acquired a car for me from a friend of his whose mother could no longer drive.

November 2004: That's it.

December 2004: The American Red Cross has figured out that if they call me on a Sunday afternoon, I'll probably be home.

Huh. Less interesting than I thought.

Question

A Tale of Two Mommys' Groups

Did my first ever mommy's group stop meeting altogether? Or do they still meet and just don't invite Ellie and me? I strongly suspect the latter.

Unfortunately, my second mommy's group is during the time I'll be going back to work.

Luckily, I've picked up a third playgroup, though it's only once a month. And it's specifically for kids with Down syndrome, so I miss out on some of the "typical" stuff.

Alas.

Overheard

As said by a teenage girl to her pack of friends, walking into the mall a couple of weeks ago, about Ellie, carried by her daddy on the way out of the mall:

Oh, look, that baby's retarded!

Weekend

Sarahlynn's weekend in a mini-meme

Last time you exercised: this afternoon
Last time you er, uh, you know: last night
Last time you wrote creatively: 5 minutes ago
Last time you did something useful: this afternoon, playing with Ellie (we're working on stacking and nesting and putting in and she's got the hang of it now)

Woo hoo! Even though the Christmas decorations are all concentrated/exploded in the front room, I think I can call this a productive weekend after all.

Resolutions

I don't make New Year's Resolutions. I know that they work for some people (my in-laws quit smoking 3 years ago after lifetimes with the habit) but for me they feel trite and ineffective.

Nonetheless, this year I made a few resolutions. They aren't New Year's Resolutions, I tell myself, but are rather Resolutions to Get My Life In Order Before I Go Back To Work or Beat Myself Up Over Getting Older and Not Having My Life Be the Way I Hoped it Would Be. Catchy, no?

1) Go to bed at a reasonable time, most of the time
2) Exercise more
3) Write lots

I especially like the way they're not "SMART" goals. Nary a measurable one in the bunch!

Well, the first was out. It's a holiday, for heaven's sake. Belongs in December with the rest of 'em. On the second I didn't do too badly. I exercised. And while I didn't "really" write, I blogged and decided to count that to make my stats look better. Nothing like getting off to a good start. On the third I exercised and blogged again.

Today, well, yesterday, I was crabby and exhausted from the lack of sleep. So tonight I forwent exercise and writing and fell into bed at 8:30. Of course I woke up at 12:30 after a reasonable amount of sleep (better than I've done all week!) and am still up, reading blogs and eating spray cheese out of the can. Alas. Tomorrow (today) will indubitably suck. Isn't it always the rainy, sleepy days when the baby won't nap? Feels like it.

Looking over at the Recent Posts, it occurs to me that recently this blog has become very . . . er, mama blog. Not that there's anything really wrong with that. It's just that the political entries and essay-diatribes tend to take more time, thought, and energy than I can summon on fewer than four hours of sleep.

Before I go off to hang out with my faithful buddies Strunk and White in the hopes that they will soothe me to sleep, let's look again at the last line in the previous paragraph and smile about getting "fewer" hours of sleep rather than "less". Who needs to get all riled up about politics and the willfully ignorant when there are so many grammatical errors begging for attention? I'm sure that this post itself offers a veritable cornucopia of such errors for those inclined to point them out.

Da da?

Ellie is at that stage where everyone is da da. I left the room to get something from the nursery. "Da da?"

The contractor came up from the basement and went out to get something from his car. "Da da?" (uh oh)

Well, everything but bubbles. Bubbles are "buh buh," of course. I'm sure I'll be a cool as bubbles someday.

Life in the PICU - part I

The Pediatric Intensive Care Unit at St. Louis Children's Hospital is a surreal experience. In fact, children's hospitals in general are very strange. You walk into this brightly lit, colorfully decorated place, and you might feel cheerful. You might feel like you're at Disneyland. Then you look away from the really cool electric train circling the glass overpass and you see the kids. Everywhere the kids. Really really sick kids. This ain't Disneyland.

It's nearly a year since we moved into the 7th floor family waiting room at St. Louis Children's hospital for a week, so the experience has been on my mind lately and will probably show up here from time to time. You see, around this time last year I was certain that my almost 3-month-old baby was going to die. At 2 months, she'd been diagnosed with "failure to thrive" despite being on 3 kinds of medicines to help her little heart (digoxin for the heart; aldactizide as a diurectic; and captopril, oh ye of the stinking poo, to relax the vessels out in the body and make the circulatory process easier).

The pediatric cardiologist said, "It's time."

And I had a breakdown, of course. I am not the type to have public breakdowns.

We pulled together a rush Baptism for Sunday, December 28th. Family and friends gathered, and I stayed up all night just holding my precious little girl. On Monday, January 5th I was to return to work. My 12 weeks of family medical leave were exhausted. Instead, Paul, Ellie, and I went to work over the weekend and cleaned out my beautiful, bright office.

On Monday night, Paul and I placed Ellie's precious hand on an inkpad and stamped her hand- and footprints into her baby book. We held her arm still as she screamed and we made a plaster cast of her tiny hand in Paul's. We packed.

The date we were supposed to go into the hospital was pushed back by a day because of a surgical emergency requiring Ellie's heart surgeon, Dr. God. I like to think that a lucky child was getting a brand new heart, but even that is a tragedy in its own way. Baby hearts don't grow on trees, you know. We dropped Lizzi pug off with friends on Tuesday night, very late.



Wednesday morning, we took a picture of Ellie sleeping in her car seat, packed up the car, and moved on in to Children's. Admissions went swimmingly, and we proceeded down to Radiology. Tired, weak little Ellie lay very still for her chest x-rays. We moved along to The Heart Station. Sweet Ellie cooperated for her echocardiogram (her 5th ever, the 3rd since she'd been born). Then a very professional nurse took us into a tiny room and explained the whole process to us in excruciating detail. We took pages and pages of notes.

We moved upstairs to 7 West, where all the heart kids go. Paul carted in our piles and piles of stuff from the car. We made ourselves at home and fretted about Ellie's nurse, a guy with braces and acne who looked like he might be in high school. Ellie was hooked up to several electrodes on her chest, sides, and abdomen to monitor her heart. She had a pulse oximeter strapped to her toe. She had to give a sterile urine sample. We were balls of stress. The day passed slowly, and the doctors came to visit.

The cardiologist stopped by and I asked her, "Are we doing the right thing" in my choked up voice.

"You are," she replied. She will be a whole new baby after this. You won't believe it." I felt better.

The surgeon came by in the evening. He was very reassuring and told us that children who have the operation this young do even better over the long run than those who have it later. (Though of course it's far more technically difficult and fraught with challenges at this age, he didn't mention that. But we knew.) He said that only about 1% of patients will need a permanent pacemaker after the surgery. "Wow!" I said. "That high!"

He looked at me like I didn't understand. He started to explain that it's actually a very small risk. I looked right back at him. "I am a healthy 29-year old woman with a child with Down syndrome and a serious heart defect. It has given me a different perspective on statistics."

"Fair enough," he said with a nod.

My parents and sister came and visited for a while, but I asked them to leave eventually. That night and early the next morning were for Paul and Ellie and me, alone together.

A very nice nurse's aide named Grace came in throughout the night. One time when she came in, I was sitting on the window seat, holding Ellie and sobbing silently. "Shh, it's going to be all right," she said. I felt bad to keep crying. Later she came back to help me bathe Ellie for the surgery. I was up all night, holding Ellie in my arms.

At 7:00 on Thursday morning, January 8th, a nurse came in and said, "It's time." We walked, carrying Ellie to the elevator and downstairs to the surgery area. After several minutes of standing there holding her and watching the Wiggles bop around on one of the ubiquitous TVs, the Anesthesiology Fellow came and took Ellie from my arms. I kissed Ellie's large, firm, precious cheeks and handed her over. The young doctor, who looked like an exotic gypsy from one of my childhood books, walked away through the double doors, carrying Ellie off to stop her heart and lungs.

Heaven

Spaghetti and a bath. Does life get any better than this?

A New Spring

I walked outside without a jacket yesterday just after an afternoon rain shower. The air felt warm and fresh. A lovely breeze ruffled my hair. I breathed deeply and smelled the fresh earth and the delightful scent of a cleansing rain. I saw buds on the trees and tiny shoots of green pushing up through last year's beds of cedar bark mulch.

Happy New Year!

Of course, on January 1st, it's supposed to be in the upper 20's with a sheet of ice covering everything, turning the entire metro area into an beautifully silent ice castle.