Tales From the Pod

My Favorite Child

2012-02-11T22:49:00.000-08:00

I have a favorite child. It’s not always the same child of course. It depends on the time of day.

In the morning my favorite child is Chiara because when she wakes up, she crawls into bed with me and cuddles and makes cute snuggly sounds. She tells me what she dreamt and then she slips off to set the table for breakfast.

Getting ready for school my favorite child is Wagner because he is so enthusiastic about his clothes. His face lights up when he gets to wear a digger on his chest or a penguin or a panda. And now that he knows his colors, he even gets excited about wearing stripes.

Getting in the car my favorite child is Michael because he climbs right into his car seat. He is so anxious to get on the road, he even tries to buckle himself in. Yesterday he expressed his desire to be snapped into his seat by calling out: “Mama! I wanna be stuck!”

At naptime my favorite child is the one who isn’t awake yet.

In the car my favorite child is Chiara. If the boys are crying, she’ll tell them a story. Last week she told them about the time when Cookie Monster got a baby sister. His mama had to go into the hospital for many days and his grandma came and stayed with him because his daddy said, “I have to go stay with Mama in the hospital.” And then Cookie Monster’s sister was born and she was really tiny. The time before that she started her story with, “Today I’m going to tell you all about tornadoes and forest fires.”

At random times during the day my favorite child is Wagner, who spontaneously steps into arabesque and will always give me kisses.

At mealtime my favorite child is Michael because he’s really weird with his food and I can totally relate to that. Wagner would eat cardboard if it were served in the right color bowl (blue and not turquoise, in case you’re wondering) but Michael’s the kid who cries if you cut his banana the wrong way. He’s big into fruits and vegetables, especially cucumbers, but not too big on meat. I like the way he sits in front of his food, barely picking at it and yet still insisting that he’s not done.

At night my favorite child is the one who’s asleep. There are actually times when I have three favorite children.

More Wagner

2012-01-20T00:57:00.000-08:00

Wagner had a full-on conversation yesterday with a woman we saw in a cafe. I was trying to get my children to eat spinach pastries; they were holding out for blueberry muffins. Research shows (at least my research shows--based on a sample of 3), that children with blueberry muffins make less noise than children with spinach pastries. So you can guess how THAT turned out.

Anyway, the woman at the table next to us looked at me and my brood and said the standard "How cute!" and "Twins?" and "Is that the big sister?" before closing with, "You have your hands full, don’t you?"

It's the same rhetorical conversation I have about ten times a day.

But Wagner saw her engagement as an invitation to talk...so he went with it.

When she said, "How cute!" he pointed to his brother and said, "Mi-call!" Then he pointed to himself. “Beg-bee!” (That’s how he says, “Wagner.”)

The woman looked at me. I translated.

So she went on to her next line. “Twins?”

I nodded and Wagner finished his introductions. “Mama! Ra-ra!” he exclaimed, pointing first to me, then to Chiara.

“Is that the big sister?” the woman said, following the script.

But Wagner wasn’t done. He made some funny gestures with his hands. She’s not paying attention; she’s trying to get the cafe’s wireless to work on her laptop.

“Mutton!” he shouts at her.

She looks up, clearly startled that this toddler is yelling toward her.

“He’s telling you he had a muffin for lunch,” I explain to the woman, who smiles politely and goes back to her laptop.

Wagner’s too inexperienced to understand what her body language is telling us. She’s done with the conversation, but he’s just getting started.

He sits back in his chair and stares at her until she looks up. When she does, he lays on her the only come-on line he knows.

“EL-MO!”

The woman looks at me. “You have your hands full, don’t you?”

(Wagner's the bunny. As usual, Mikey is the guy with grin)

Wagner

2012-01-08T00:19:00.000-08:00

Wagner Lee Bryan Kovac gets his first name from Matt’s mother’s maiden name. His middle name is my father’s middle name (Lee) and “Bryan” is my maiden name.

In the hospital, Wagner often the “easy-going” one. When we got back from the hospital, he was that times ten. Most of our pictures of Michael and Wagner look like this one, with Michael playing the role of the imp and Wagner being the other guy.

Or this one:

Even when the boys were in the hospital, Mikey was the guy with the grin.

But lil’ Wagner is shaping up to be quite a character, much like his great-grandpa, Matthias Wagner.

(Matthias Wagner had all kinds of tales. One of them involved a Coke bottle and a horse. That’s all I’ll say.)

Here’s some of the peculiar things that Wagner Lee is known for these days.

He is very particular about his clothes. He prefers to wear diggers, dinosaurs, alligators, or penguins and will turn beet red when he does not get to wear the outfit of his choice. Sometimes you can actually see steam come out of his ears.

He loves to eat and often makes meal requests. “Ham?” is a favorite request. Partially because “ham” is easy to say and partially because he really likes ham. Other favorite requests are “hot dot” and “ice cream.”

He likes to dance, as captured on video here (dancing starts at about 1 minute)

And here: when the boys were much shorter:

He likes to play peek-a-boo with his penis. Yes, you read that correctly. Michael likes to sit on the potty because he is still working out the mystery of how poo gets in there. But Wagner likes to sit on the potty so he can lift his wee member over the pee guard and say, “Peek-boo!” before hiding it again. It’s hard not to encourage him with laughter. I do my best.

Nobody told me that having kids would be like this.

MERRY CHRISTMAS, DAMMIT!

2011-12-24T21:39:00.000-08:00

This is from my "other" blog. http://j9kovac.livejournal.com/28795.html

It's from last year, but I came across it again today and discovered that I rather like it. I have a theory that I was a better writer back when I didn't write as often and I must say that this post proves the point.

Begin post:

Maybe it’s just my corner of the world. We say things like “Happy Holidays” or “Season’s Greetings.” But no one will wish you a “Merry Christmas.” We just don’t talk like that in these parts. But I mean, we all know what those greetings of the season are, right? They are “Merry Christmas” and “Happy New Year.” So why can’t I just say that instead of alluding to it? It’s like calling your Uncle Benny “you know, fastidious.” The man has a life-size cut out of Barbara Streisand in his sewing room. It’s ok to call him gay. He knows.

I get that not every one celebrates Christmas but so what? I don’t celebrate Cinco de Mayo but you don’t see me yelling at drunk white people on May 5th telling them “Mexico’s Independence Day is September 16th, huero!” I let them have their fun. I let it go.

I get that there are other important religious holidays in December. Certainly, Hanukkah, which gets billed to non-Jewish kids as “but they get presents, too,” (Because it’s very troublesome to think that there are some kids who are neither on Santa’s nice list nor his naughty list.)

Ramadan is around here, too, although I know they have a different calendar system that doesn’t always match up with the rest of the December religious holidays (much in the same way that the World Series doesn’t always match up with Halloween). Ramadan used to get a lot of press back in the 20th century, back when it was a priority to be culturally sensitive to Islam. Not so much these days when the Koran is talked about as if it’s synonymous with “al Qaeda Instruction Manual.”

Then there’s Kwanza. I have no idea what Kwanza is, or who celebrates it. Judging from the Kwanza stamps at the post office, it seems to be a holiday for black people, who, as far as I know, celebrate Christmas.

Listen folks, I live in a place where election ballots are printed in six languages. (English, Spanish, Mandarin, Vietnamese, Tagalog, and Korean). We’re no strangers to different cultures celebrating different ideas. And yet, I have never met anyone who has celebrated Kwanza. Maybe it’s like the “Santa” of the holidays—we pretend it exists, but it really doesn’t. Yes, Virginia, there is a Kwanza.

But if someone wished me a Happy Kwanza, I’d be tickled. (Especially if it were celebrated with the doling out of candies—you know, like the rest of the American holidays: Valentine’s Day, Easter, Mother’s Day, Halloween, and Ch..ch..ch..christmas.) And hopefully, if I wished that person a Merry Christmas (and offered ‘em some candy), they’d smile and be tickled, too.

Because all of it—“Happy Hanukkah,” “Merry Christmas,” “Happy Kwanza Day,” “Have a Cheerful Winter,” etc—are all euphemisms for what we called in my day, Christmas spirit. A way to connect, human to human about wonderful human things like love, cheerfulness, gratitude, generosity, selflessness, bliss, and gratitude again, independent of the origin stories of virgins or lamp oil or the Kwanzanese. A way to say, “hey, the joy in me salutes the joy in you.”

Which, ironically, is how we end every yoga class.

So if I can’t say “Merry Christmas” without causing offense, I’ll just play it safe.

Namaste, everybody!

Que Sera, Sera

2011-12-13T12:55:00.000-08:00

Last night Chiara was playing in her room. She had arranged four chairs and a stool to make a little living room. Her favorite baby doll was asleep in a little makeshift bed made out of two of the chairs. The lawn chair was arranged like a Lazy-Boy.

When I peeked in, she informed me: “I’m taking care of my baby. I’m a grownup. I’m eating ice cream for dinner and watching T.V. and enjoying a glass of wine.”

I’m not sure what to make of that.

She’s four.

I wonder what she will be: this little person who thinks of grownups as people who allow themselves ice cream for dinner.

I wonder if she will ever learn how to count properly.

I wonder how her face will change and which parts of her chubby body are just chubby and which parts are baby fat.

I wonder when she will switch from being a light little fairy so full of life and curiosity to a sullen teenager or jaded adult.

I wonder when life will weather her face.

I don’t wonder if I’ll still be around to see it. I assume that I will be.

And the boys. It just occurred to me that soon they’ll be talking. Really talking. And then they’ll be five people in this house expressing ideas, invading the space in my brain that is closing in on itself like the walls of my living room. They’ll bargain and negotiate and complain and whine.

Just today Michael was asking where his pajamas bottoms were, but since he was asking by looking instead of saying, “Hey! I know I have matching pajama bottoms with rockets on them and I’d really like to wear them. And I know you hid them around here someplace,” he just wandered around the living room with his palms up, saying “eeeehhhhh-ehh?” and I could pretend that I had no idea what he was asking as I held up the pants I wanted him to wear.

Easier Than it Looks on Paper

2011-11-20T23:21:00.000-08:00

Life at our house is really loud. And messy. We have a lot of poop, snot, muffin crumbs and dust bunnies (although not in that order. We have far more dust bunnies and muffin crumbs than we do poop or snot).

What's amazing to me is that 1) noise and chaos do not drive me into a homicidal rage the way it did 5 years ago and 2) in spite of said noise and chaos, that every day things "fix themselves."

Like today. Matt has his first law school exam--a take-home that he has the weekend to take. So we sat down and blocked off times for him to nap, study, go to a review at school, go to Nutcracker rehearsal, etc. (I really have "Matt Nap" on our family Google calendar). Today we blocked off as a "Matt day," meaning that I had the kids all day. Not a big deal except that today was the first time I'd tried to take all 3 of them to Mass by myself.

Mass with the twins is...interesting. They are so loud. Not crying-loud. Laughing-loud. They play peek-a-boo with each other, they smack the pews and cackle. So then we started bringing books (our parish has a book box for kids). That actually didn't cut down on the noise much because they spend the hour looking at books, pointing at pictures and saying (loudly) "Moon!" "Star!" "Apple!" "Pumpkin!" (the boys are big into pumpkins.) Or they thrust the book in our faces and demand that we read. Last week Matt and I decided--no more books.

Flash forward to today. Raining cats and dogs. Which means it takes 35 minutes to drive to a church that's 4 minutes away. Raincoats on, boots on. Umbrellas. The boys HATE any new footwear, but somehow we got the boots on. (only to have them fall off as Michael was ascending the stairs: "Wet!" he said, pointing to his sock.) The good news is the boots really slowed the boys down, and they stayed in the pew the whole time. (Michael was afraid to move his feet at all).

In lieu of books, I brought those little magnetic pencil drawing boards. And somehow the boys even made THOSE loud. I don't know how it's possible to scratch so loudly, but the boys know. At one point Wagner got upset about something or other, and I had to leave with him. He was screaming and kicking so much that I couldn't take both boys with me, so I just left Michael there in the pew in his over-sized rainboots, scratching on his magnetic drawing board. I thought he would freak out when I left, and I kept watching through doors to sanctuary, but he was fine. I couldn't see him, but I could see the people in the pew behind us, I figured that if he started crying or walking they would look around, like, "What terrible mother has left this kid behind?" They were paying attention to the homily, which meant that whatever Michael was doing, he was quiet about it.

Chiara was in the Children's Liturgy at this point. Mass would have actually been easier had she stayed behind; she would have been able to watch Michael while I was out with Wagner, or come get me if something bad happened.

Meanwhile, Wagner had thrown himself on the floor of the foyer, kicking, crying, red-faced. I just stood there and watched him. After five minutes, he was fine. He picked himself up, dusted himself off, smiled and said, "up?" We went back in. Chiara came back from the Children's Mass and we switched out of our rain boots into our regular shoes to do the Communion procession--always a disappointment for the boys because each Sunday they hope that today's the day they get one of those little crackers instead of just a hand on the head.

It was all very manageable in a weird way.

Then we all came home, had lunch, and then everybody napped for two hours. (Including me.)

Our Daughter is Gone - Woo Hoo!

2011-10-19T14:48:00.000-07:00

Our daughter is gone for ten days. Nonna took her to Texas last Friday and will bring her back next Monday. I’m sure I’ll miss her eventually, but it’s been heaven so far. Mornings are completely without drama (unless you count the boys clinging to my legs when I drop them off at daycare—something that never happens when Chiara is there to play with them).

Bedtime for the boys is 7:15 and then Matt and I have the rest of our nights to ourselves. Last night Matt went to the daycare board meeting (during which they watch your kids AND feed them dinner) while I got sushi to go. When he and the boys got home, we put them right to bed and ate makimono by candlelight. It felt like a date night. (And then he stayed up for another four hours studying)

Meanwhile Chiara is doing puzzles and playing games and giving ballet performances. Tomorrow she will fly to Austin with my dad & stepmom to visit Jackie, Jeff, Liz, Maria, & David. Sunday she flies back to EP. Monday she flies home.

It’s true that it’s quieter (and cleaner) without the force of nature that is Chiara Noelle, just as life is always quieter and cleaner without little people around. But quieter and cleaner doesn’t mean better. After all, laughter and singing always trump quiet. It’s hard to remember what merits messes may have, though. Perhaps they are just the byproducts of playing just like krypton is a byproduct of uranium extraction.

At any rate, quiet and clean is nice and refreshing for the moment. Pretty soon “quiet and clean” will become “dull” and by that time Chiara will be on a plane back to visit us.

The Last Letter

2011-10-03T11:57:00.000-07:00

This Thursday is a NICU Partnership Council meeting. I know because they emailed the meeting agenda to me. They emailed the meeting agenda to me because I conveniently forgot to tell them that I wasn't going to be on the Partnership Council anymore. So I sat down and wrote a letter. And I cried. I cried because they have helped me so much and I cried because I cannot wait to get outta there and I cried because there are things I cannot say.

But here's what I did say. It goes in the mail today and I hope they get it by Thursday.

(If you've been following along in the blog you might like to know that I did "First Thing Monday" back in August, tell Alison, the nurse manager and friend who brought me on board, about my decision to leave. We talked for about an hour. A week later I talked to the Family Advisory Council in person. I just haven't said anything to the Partnership Council people yet.)

Dear Ann, Pam, & Jack,
(and Peggy & Alison & Nicole & Rita & Luella & Alex & Mina & everyone else who make time for Partnership Council)

About six weeks ago, an amazing thing happened. The boys--25 wkrs who will be 2 at the end of December--"caught up." Suddenly they were climbing ladders (and bookcases). They were stacking blocks and kicking balls, drawing on walls and saying ,"MINE!" They aren't "micro preemies" anymore.

I am so eager to embrace my new identity as "Just a Mom of Twins Who Climb Bookcases" and so unexpectedly relieved to shed my identity as a "Micro Preemie Mom." It's like our family grew wings. Sadly, grasping our "present" means (at least for right now) leaving the Partnership Council.

It makes me so sad to write this card, even though I know you folk understand better than anyone. I loved being a part of the council. I learned so much from all of you--your strength as a group, your collaborative spirit, your thorough problem-solving (even problem-solving how best to solve problems). You are truly integrative, inclusive, and compassionate. You bring your "nurses' hearts" to the table (even those of you who are social workers, pharmacists, and doctors!) Thank you for this last year as a member of your inspirational team.

I look forward to the day I can remember my days at the NICU without reliving them. And when I can, I hope you'll still have some empty seats at the table.

With deep regret,
and even deeper appreciation & gratitude,
janine

A Separate Peace

2011-09-18T23:37:00.001-07:00

We have started trying to take the boys to church with us on Sundays. It's a little crazy. They used to laugh maniacally and thump things. They’re a little better now but they’re still loud. And of course they want the same book at the same time, or try to sit in the same chair at the same time (we have rocking chairs in the back of the church.) It’s just chaotic.

Chiara is better for the most part, but sometimes it’s only marginally so. Today she cried (SOBBED) and begged me to go with her to the childrens' liturgy. Each week is headed by a different volunteer parent. They don't know the kids or their names. It's a mixed crowd ages 3 - 9. There are a couple of boys who are just monsters. I don't blame Chiara for not wanting to go by herself--I don't want to be there either! I couldn’t just leave her there sobbing uncontrollably but at the same time I don’t want to make a habit of literally holding her hand through a situation that’s uncomfortable, but not terrible. Besides, I wanted to hear the homily. I like this parish; I like this priest. I wanted to hear him.

I’m feeling guilty because my daughter is quietly sobbing inside the classroom. I’m feeling anxious and trying to justify leaving (it’s good to work out situations in which you are uncomfortable, right?) And I don’t know what the right thing to do is. I ended up just staying right outside the door until Chiara was comfortable enough for me to leave (which was when they started the craft). I decided that if I really wanted to hear the homily I could email Father Mark for it. I think there’s a podcast, too. I don’t need to be in such a hurry.

When I went back to the main church I saw that Father Mark wasn’t giving the homily after all. One of the parishioners was talking about how he’d come to his faith and the 26 years that he’s been sober. Interesting, yes, but I’m glad I didn’t hurry and leave Chiara before she was ready.

Then it turned out that two parish members were recently married in their home country (W Samoa) and wanted to say their vows again here at the church. So Father Mark asked all married couples to stand and renew their vows.

There we stood, Matt and I, at the back of the church—“Do you, Matt, take Janine…” amidst the boys dropping Cheerios like a trail of breadcrumbs and banging their heads and tripping on imaginary steps. I was laughing and crying at the same time.

It makes me think, this is what it must be like to take yoga in India. India is so famously crowded and loud and hot and in your face and our idea of yoga is the opposite: it’s complete silence and stillness.

I used to go to church to get a little bit of that peace and stillness and take it back with me for the week. Now that we’re bringing the boys, church is just as chaotic as the rest of our day. So I have to find peace in a different way. Like being the eye in the storm.

Today, waiting in the doorway, watching Chiara until she was so absorbed in her activities she didn’t notice me anymore, and then later, holding Matt’s hand promising to have him and hold him until death divides us, I got my brisk wind of peace.

Bye-Bye NICU

2011-08-25T00:03:00.000-07:00

In the last post I talked about how leaving the NICU Partnership Council would be unthinkable. Then I spent a week (at Squaw) thinking about the book I’m trying to write and what I want to say and WHAM-O I decided to forego my responsibilities with the NICU (Partnership Council and Family Advisor Council) without thinking twice (I bet there’s a cutesy “unthinkable” tie-in there).

The boys are nearly 20 months and for the first time in 20 months, they’re acting their age. It seems like a miracle, but that’s really just what supposed to happen. They’re supposed to catch up by two years. We still have some language delays. If he could, Michael would tell you that he has about 20 words. But since each word sounds like “bah” or “doo,” it’s hard to get an accurate count.

Those are just words—they communicate now, something they didn’t do a few months ago. They know how to get your attention (for example, Wagner is particularly good at conveying the message that he has been treated unfairly by his brother). And they “get it.” Michael will try to help unload the dishwasher and if the door is open, will stuff silverware into drawers. Wagner will try to blow his nose.

Aside from having to brush teeth every 2 ½ hours, it really is like they are “normal” kids.

I want to enjoy this. I want to be present for this time. I want to be a “normal” mom (of a preschooler and twin toddlers) as opposed to a mom of kids who need special treatment. And as much as I am grateful to the hospital for their care, I don’t want to have one foot in their world and one foot in ours. Not now. Maybe later.

In about thirty minutes I will drive down to the hospital and tell the Family Advisor Council in person. I will tell them about the twins, thank them for the year I was able to spend with staff as a member of the Partnership Council, and wish them well.

Dear God, I think I just grew wings. I think I might fly to the hospital instead of driving.

Our "Normal" (albeit half-naked) Life

Repaying a Debt

2011-08-05T01:07:00.000-07:00

I keep hoping to make it through a Partnership Council meeting without tears.

Partnership Council is a council for the NICU made up of doctors, nurses, social workers, pharmacists, nurse managers and one parent. We meet monthly to discuss how to make the NICU a better place.

The meetings are awesome. I’ve been sitting on the council for about a year now, and it’s really broadened my understanding of our healthcare system and the people who work so hard to make it so good.

At the same time, it deepens my understanding on topics I wish I could forget about. Such as, that micropreemies are in a high-risk category for pressure ulcers. Or: how many micrograms of phototherapy that can be safely given to micropreemies without also giving them brain damage. (Answer: nobody knows for sure.)

I really wish I could forget what happened to our little guys. The three months of intensive care, the heel pricks, the intubation meds, the gavage feeds, and on and on and on. I wish I could just pick up where we are now, with their favorite “blankies” and their favorite spatulas (yes, spatulas). I wish that all that remained from our NICU days were our special Weleda bathwash and our penchant for brushing teeth five times a day.

But, no. I have a debt to pay. So twice a month I drag myself to the hospital. I offer advice on how we can educate parents about HIPAA compliance and remember why electrolytes are a twice-checked additive but human milk fortifier is not.

I’m free to walk away at any time. This is strictly volunteer work. People would understand. But that would be unthinkable. I have healthy, happy sons because of these people. I look around the table—Rita showed me how to cut a little sponge swab and put drops of breastmilk on it for the boys to suck on when they were just a few days old. Janet promised me that my boys wouldn’t go to kindgarten with “toaster heads.” Ann was part of the surgical team for Wagner’s ligation. Luella was the nurse who first made it possible for me to hold my babies (and she was just meal-breaking that day!). Monica gave us a baby CPR refresher. And John, who we did not meet until the boys were almost ready to go home, shared stories of his own twins, who are now in their 30’s. Peggy, the NICU manager, Alex, who tracks the boys’ progress at the follow up clinic, and of course, Alison. I used to think of her just as someone who was passionate about her job. Now I think of her as one of my friends.

I think that’s all worth a few tears. Don’t you?

The first time I held either boy -- thanks to Luella & Margaret

On the Road, Family Style

2011-07-20T21:19:00.000-07:00

We took a road trip on Sunday, arriving in El Paso late last night. So of course I didn’t write and now I’m finding all kinds of excuses not to.

The road trip was great—especially for blog material. For example, I discovered that my friend’s husband is my emergency contact in my cell phone. I found out because when the restaurant in Arizona found my purse, that’s who they called. That would have been a great blog post.

Then there’s the concierge that I pelted with mind bullets because he wouldn’t let Chiara use the restroom there. He insisted that we did not have a reservation, even though we called early in the day and got a confirmation number. (He was right, actually, but I’ll save that for the blog post.) In response to his refusal to let Chiara in to the bathroom, I told him, “Then my daughter is going to pee in your parking lot.”

Nothing much happened yesterday on the excruciatingly long drive from Sedona, unless you count the discovery that my tank holds at least 18.9 gallons of gas. A quick Google search today and I see that it’s actually a 21-gallon tank, so I’m glad I didn’t freak out when I saw the empty light blink on when we were in the middle of the desert. At night. With 3 small children and a (nearly) dead cell phone.*

I guess that’s about it unless you count the little tidbits one learns on a 3-day journey. Such as: you can fit two 18-month-old toddlers in the same pack-n-play for the night. And: 4-year-olds sing loud lullabyes. Don’t forget your crayons in the car in the summer desert. Rest Areas: California has beautiful sparkly ones, but 3 out of 4 are closed. Arizona has your run-of-the-mill rest stops that you can smell from the I-40 on-ramps. Not many billboards in Arizona, which is nice, especially when you are driving through Red Rock country. New Mexico has tons of billboards, which is also nice, especially when you are looking for the next gas station.

* Marian drove with us and points out that it was dusk, not the middle of the night and while my cell phone was nearly dead, hers was charged.

Speech Delays Update

2011-07-13T14:20:00.000-07:00

Here’s the update on the boys’ speech delays. They are talking up a storm!

Wagner has a few signs: “hi,” “bye,” “eat,” drink,” “more,” “want it,” and “please.” Michael has several signs, too, but has added his own interpretation to them. The signs themselves are the standard gestures for “eat,” “drink,” “more,” “help,” and “want it,” but they are used interchangeably, regardless of context, to mean, “Do that thing I want.” Which means that sometimes he uses the “eat” gesture to mean, “help” or the “more” gesture to mean, “put my shoes on and take me outside. SNAPPO!”

But he has more words than Wagner. They are:
bye (pronounced “buh”)
ball (pronounced “bah”)
up (pronounced “bup”)
banana (“bah”)
apple (“bup”)
pumpkin” (“bah”)
socks (“bah”)
jacket (“buh”)
teeth (“buh”)
blanket (“bahh!”)
Mama (pronounced “mama”)
Baby Mum-mums – the best baby treat EVER because it melts in your mouth, not in your hands (also—sigh—pronounced “mama”)
and hat (“baah” – it’s a little different with the long Danish “a”)

He also has some phrases:
• “Bah?” (followed by a smile where he bears his teeth and flutters his eyes)
Translation: May I have some of your delicious Frosted Flakes?
• “Baaaaaaa!” (accompanied with the stomping of feet and the waving of hands)
Translation: What is WRONG with you?
• “Baah!” (emphasis on the first “a”)
Translation: Kiss me again.
• “Bah?” (cocks head and smiles bravely, not as fake as his “feed me” smile but not as sincere as his “kiss me” smile)
Translation: Let’s go to the park! (this is often followed by “Baaaaaaa!” and stomping and waving)
• “Baaa-AA-aaaa!” similar to What is wrong with you? But the extra syllable changes the meaning slightly to: I hate you! You're the worst mother ever! You have ruined my life!
And finally
• “Bah!”
Will you read me this book, please?

In short, Michael has several signs that all have the same meaning and one sound that means several different things.

And of course, they talk to each other all the time. Completely unintelligible conversations that only they understand.

Happiness Nut

2011-07-11T22:47:00.000-07:00

My family thinks I am some kind of happiness nut, like I’ve joined some kind of kumbaya cult and spend my days playing a tambourine in the park. Or the subway. The family that’s in the Midwest shakes their heads. Only in California. The family in California shakes their heads. Only in Berkeley. Of course I’m defensive. This isn’t “hippy Berkeley!” This is U.C. Berkeley! This is empirical science!

Of course I look like some kind of blissed-out wingnut. Last August I started a google group called “Sharing Happiness.” The idea was to create a place where people all over the world could share things that made them happy. I forced family members to sign up (well, I didn’t really force them, I just signed them up myself.) Usually it’s just me writing about some great thing that the twins did, such as smile or burp, or some absolutely fabulous thing Matt did, like take the 5:30 a.m. shift again. I’m aware that it could look more like Janine procured an audience for herself, more like “Blaring Narcissism” rather than “Sharing Happiness.” But that’s not the intent. The intent is to share stuff that makes us happy.

I’m not the only one who posts. My mom posts frequently, as do a couple of my sister-in-laws, a cousin, and every now and again, an aunt. In the beginning there was a discussion on “bragging.” At what point did sharing what made us happy become bragging? The group decided bragging was in the eye of the beholder. If you couldn’t brag to your own family, who could you brag to? And if you couldn’t be proud of your own family or happy for them, then maybe you should work on that. (Sidenote: we also closed the group to outsiders so that it is 100% private and off the radar.) I also pitched the idea to the Greater Good Science Center and it got picked up as a community gratitude journal that posts every Friday.

“What a fabulous idea!” was the initial response.

“Why don’t you be in charge of this?” was the next response.

And with that I was given a username and password and access to the Greater Good Science Center’s website. Every Thursday evening around 11:30 p.m., I format the contributions collected throughout the week (my mother, always hoping for a better grade, can usually be counted on for two or three thankful quips) so that the post is ready for Friday morning.

I always add a gratitude signed with my first and last name as a way to take ownership of my thankfulness. I want to set an example. Many people post anonymously as “grateful mom” or “happy dad.” Sometimes I post anonymously, too. These gratitudes are the ones that I’m really thankful for, but don’t really want to take ownership of, such as: “I’m grateful that our downstairs neighbors are sound sleepers.” Or “I’m grateful that the bank didn’t return that overdrawn check.” Still other gratitudes never get posted anywhere. Such as, “I’m so happy that Wagner’s O.K. after falling down the stairs.”

The impression I give is that I’m just a little too loopy from taking care of all these small children and that I float around like a Stepford Wife or some kind of Forty-year old Pollyanna.

But the real reason I have the community gratitude journal and the sharing happiness group is because when the twins wake up at 5:30, Matt gets up and he changes their diapers and reads them books and then when Chiara wakes up an hour later, he feeds the three of the breakfast and gets them dressed and two hours after that, at the reasonable hour of 8:30, I crawl out of bed, look at my lovely, clean, fed, and dressed family and say to the man who made them so, “Wagner’s wearing the wrong socks.” And then before his head can explode, I usually add something like, “Can you work from home today? I want to go yoga.”

And then it dawns on me that if Matt’s head does explode, I will have to raise three kids by myself. And I will have lost the husband that I love so, so dearly—a wonderfully funny and caring person who makes Mary Poppins look like a cracked-out slacker.

So I thought that maybe, just maybe, if I started consciously thinking about how grateful I am—if I wrote it down and shouted it out—that I might wake up in the morning and see my beautiful, clean, dressed, and fed family and say, “How can I help?” or “Thank you, Matt. Sleeping in until 8:30 makes such a difference.”

Just Another Ambulance Ride

2011-07-03T00:21:00.000-07:00

I love buried leads. They’re so exciting to me.

SO – biggest disappointment of the day. There were two. One was a book we bought at the bookstore: The Name of This Book is Secret. Which is just a disappointment because it’s waaaaaaaaaaay over Chiara’s head. We just finished The BFG by Roald Dahl (I’d never heard of it, either) and before that we’d read James and the Giant Peach and Chiara’s really into chapter books now. Regarding the Name of This Book..let’s just say that I agree with the review from Commonsensemedia.org:

Commensensemedia.org, in an average review, criticized the similarity to Handler by saying "Apparently trying to take a leaf from Lemony Snicket's books, he gives incessant warning about how dangerous it is to read this book; this, combined with the utter lack of anything that justifies the build-up, comes across as lame at best and annoying at worst."

Chiara didn’t like the book, either. We decided to shelve it and read ABC Peas instead.

The other disappointment today was not being able to see the ending of this teeny-bop movie on the Disney channel. It’s about auditioning for Twinkletown, the musical. There’s a mean, blonde Nellie Olsen-type named “Sharpay” and a sweet underdog protagonist, Gabrielle Montez (apparently “Latina” is the new “smart brunette”). I’m pretty sure I knew what was going to happen with callbacks. Although right when the RN called us out of triage, the basketball teams was trying to convince Troy Bolton to play in the champion basketball game instead of showing up for the audition.

I wanted to go back the ER waiting room to see the end of it, but Wagner was really wailing and by the time he fell asleep, he was twenty minutes into his IV feed, so we were kinda stuck in our room until the blood tests came back. And of course, by the time the doctor cleared us for discharge, the show was over. I guess I can be grateful that I didn’t drive to Children’s Hospital; if I had, I would have missed the beginning of the show. That ambulance showed up 3 minutes after the 911call. Such efficiency.

It was a very surreal day. Five hours at the hospital because Wagner had a fever of 105 degrees and the anxiety I felt was because a) I couldn’t update Matt; there was no cell phone reception and b) I was missing the undoubtedly climatic ending of "High School Musical."

I guess this is what too much hospital life does to you.

Writing it Out

2011-06-13T11:50:00.000-07:00

I’m submitting a piece to an anthology about sharing—women helping women. How women have inspired me, listened to my ideas, encouraged me, etc.

I found out about it through litquake. I wasn’t going to do it because I didn’t think I had enough time to come up with something before the deadline. Then on deadline day, Jane Ganahl (one of the co-founders of litquake) sent out another email about it. I love this kind of stuff—it’s right up my alley with the sharing thing. I still felt stumped on what to write but the email seemed to suggest that it might be more of a soft deadline, and felt obligated to inquire about it. Jane wrote a very nice introduction to the anthology’s editor for me, and the woman agreed to let me submit two weeks after the original deadline.

Still no inspiration for a specific story.

I wanted to write about my writing partner Rachel, because I think we work really well together, giving feedback, accepting feedback, even when we’re both applying for the same grant. But we’ve only been writing partners for a couple of months, so I don’t feel like I have enough material.

Four days before Deadline II…

When I’m stumped like this, I often take it as an indication that I’m trying too hard. Trying to fit the idea-peg into the wrong sized hole. It’s corny, but I usually fall back on a “what does your heart tell you?” way to jigger the lock. (I’m pretty sure that’s not the word I want to use.)

Three days before Deadline II…

I’ve decided to write about Cathy Coggins, the infant development specialist at Alta Bates, the one who helped us with the twins’ language delays. I spend a couple of days trying to figure out how the idea will play out.

The day before…

It’s a 1700 – 3000 word limit, which used to be nothing for me back in the day, but with writing so many blog posts that max out at a 600 word limit, my condensing skills are better than my story-telling ones. I end up with a skeleton essay that kind of works but mostly makes me cringe. It sounds so fake.

The day it’s due…

We’re going to the Tuesday playgroup and Chiara and I have a little habit of going to buy coffee/milk with a straw before it starts. We get to the front of the line and that’s when I discover that I have left my wallet at home.

After the playgroup, we go back home and the babysitter comes for a five-hour shift, my writing time. A quick phone call to the bank lets me know that my wallet has been stolen and between my three credit cards, over $600 has been charged in gas and BART cards. I also have to go into the city to pick up our camera, which I left at a friend’s birthday party over the weekend. And I have to pick it up because the next day we are flying to Florida.

I spend my writing time cancelling credit cards, closing my checking account, opening a new one, driving into the city to pick up a camera, and engage in three different litquake meetings, although I did fit in some writing when I was waiting at the bank and then later between camera-pickup and database meeting.

Long story short, I do not finish the piece or submit it.

The next day we fly to visit Matt’s parents in Florida.

The day after that is Matt’s dad’s birthday.

The day after that I work on it for a bit and submit a story that doesn’t make me wince but it also feels…broken.

I figure that’s the end of it. I’m just glad that I got it off my plate and can go work on something else. I felt obligated to follow through on my commitment, didn’t want to drop the ball completely. And I’m OK with ending up in the slush pile.

Then today I got an email encouraging me to keep working on it and submit again. I get the feeling that the editor didn’t read my first draft, I think she just doesn’t want to bother with something incomplete and has a little time to wait for something better.

So now I have to go back to the broken piece and fix it.

This has been such a weird boomerang of extenuating circumstances, both on the side of interfering with the completion of the essay and the submission of it.

And now, since baby pictures are cute, a picture of Wagner having Under the Table Teatime.

Insides Out

2011-05-13T23:43:00.000-07:00

My scar still hurts sometimes. The one from the c-section. Although, to be more specific, I should say that one of my scars hurts. There are five—one for each layer that the surgeons have to cut through to reach the baby and avoid cutting through other things—such as your bladder.

I am often amazed at the nonchalance at which c-sections are sometimes viewed. Almost as a convenience because you can schedule them. Never mind the recovery time and the risk involved. Five layers of stitches!

Of course, there are many women who have no choice. For their safety—or, as in our case, for the baby’s/ies’ safety—that’s just the way it’s gotta be. And I certainly understand that. Just as in our case, the best of course of action was to keep our babies in plastic boxes for a couple of months. But just because our babies turned out “okay” (if you don’t think about the teeth part), doesn’t mean that a six-month pregnancy is the optimal way to go.

This morning one of my internal scars deep, deep inside, the one that has always bothered me the most, felt puckered and tucked. I can feel it when I run my hand along it. It’s several inches above the scar that is visible from the outside.

Matt remembers that day differently than I do, of course. Rushing to the hospital from work, arriving in time to see me wheeled into Labor & Delivery, barely having enough time to call my parents (the people taking care of Chiara that day) before the surgery began. While I was in my moments of Zen, he was trying to put on scrubs a million sizes too big. I couldn’t see what was going on, but he could. He said they put my guts right there on the table. Well, maybe not on the table, but they were outside my body, a big jumble of them. Some of my blood squirted out and landed on his shoe and for days afterwards, he’d look at it and remember seeing that side of me that he had never seen before (the inside). Much like when we went to Rome the year before and he spent the next week at work looking at his shoes, looking at the dust from the Coliseum—real Roman dust here in Mountain View!

For me it felt exactly like two pairs of hands rummaging through your insides looking for a couple of babies on the run.

My guts were touched. They saw the light of day. How weird. They were handled and juggled and (carefully?) put back. I wonder if my organs have fingerprints on them, a frontier where no person had gone before and traces left behind, like those astronaut footprints on the moon.

A Letter to Parents of Micro Preemies

2011-05-06T13:19:00.001-07:00

(This is just a rough draft of something I might say to a parent who’s about to deliver a micro-preemie)
Dear Parent,

My twin boys were born at Alta Bates at just 25 weeks’ 3 days’ gestation. Prior to that, I spent 8 days in the antepartum unit. During that time, my obstetrician asked the doctors who care for premature babies to talk to me.

My husband and I had very different attitudes about how we wanted to receive information. I wanted information on a “need to know” basis, based on what was happening with my particular babies, not what might happen to a baby similar to mine.

I don’t know what you’re going through, but I know what I went through.

If you’re a parent of a preemie, this is what I want you to know:
I want you to know that they have perfectly shaped fingernails.

I want you to know that it is possible to feel love for something that doesn’t look like a baby.

I want you to know that when they cry, it squeaks and it breaks your heart.

That sometimes they grab your finger like they know who you are.

That sometimes they look like they’re in pain.

That sometimes they look like they’ll never get better.

That sometimes they are more resilient than you can ever imagine is humanly possible.

If you’re a parent of a preemie, this is what you need to know:
You need to know that you might have to hear the same information 4 or 5 times before it sinks in.

You need to know that you might have to make work sacrifices that you didn’t think were possible.

You need to know what kind of things will help you during stressful situations.

You need to know that your mental well being can affect your physical well being and even the well being of your baby.

You need to know that sometimes more information makes you feel even worse.

You need to know that sometimes ignoring information can leave you unprepared.

You need to know that, whatever happens, this experience will change your life forever. Now that I am on the other side, I feel that I have a wisdom, a patience, a reverence for life, and intense feeling of happiness and gratitude that I never imagined were possible.

You need to know that not everyone feels this way.

Toddler Math

2011-04-26T13:08:00.000-07:00

Oops. So much for posting once a week.

My sister was here last week. On the first day she babysat, following the twins from room to room as they systematically pulled books off of shelves, clothes out of drawers, and Tupperware out of cupboards. At first she took pictures because baby messes are cute if it’s the kind of thing you see less often than Halley’s Comet. But quickly my sister discovered that in the time it took for her to straighten up one room, they had already messed up four others. And with the head start they had gotten with the impromptu photo shoot, she’d never catch up unless she strapped them down.

Of course, this is just because my sister cannot do Toddler Math.

Toddler Math is the ability to determine things like the number of snacks plus grown-up breakfasts yielded by 2/3 of a box of Cheerios. Or the ability to divine how many errands (including looking for parking) one can fit between the morning nap and the afternoon nap.*

Other kinds of Toddler Math include knowing how many wipes you need to last until Wednesday, how many times your baby will scream bloody murder before he means really means it, and knowing when to feed your kid so that his first poo happens on the babysitter’s watch.

On the day my sister babysat, she was faced with the kind of Toddler Math parents knows as Clean Up Factorization: the amount of time it takes to make a mess divided by the time it takes to clean it up. Obviously we’re shooting for a 1 or higher. Throwing a sippy cup from the highchair is a .93 whereas opening a jar of honey is a number in the billions. Some messes vary depending on the context and circumstance. For example, giving a child a bath can be any number between .12 and 28, depending on the length of the bath and your tolerance for wet spots that will eventually dry on their own. A laundry basket full of clean clothes is pretty close to 1 unless the clothes are folded. In that case, it’s like dividing by zero—the time it takes to empty it a basket of clean clothes is 2.6 seconds; the time to finish filling it up again with folded clothes can sometimes span decades. That’s why moms with kids under the age of 26 don’t bother to fold clean clothes.

* Answer: Exactly 1 errand. Unless you have twins, in which case the number errands is .3895. (Taking into consideration that the errand likely involves a minivan double load-up to start, a minivan-to-stroller double unload/load arriving at the destination with a stroller-to-minivan double unload/load to head back home, and closing with a minivan double unload, plus looking for parking on either end.) If it’s a walking errand involving one stroller double load and one stroller double unload, you can complete exactly 1 errand between the morning and afternoon naps.

Sharing as a Family

2011-03-31T14:43:00.000-07:00

Today we had our first Family Advisory Council meeting. Alta Bates, our hospital in Berkeley, practices what is known in the medical world as “Family Centered Care” (sometimes also known as Patient Centered Care). It means that rather than treating conditions and diseases, the doctors and nurses treat patients and families. In the old days, doctors learned specialty: stomachs or livers or cancers or birthin’ babies. They learned about ideal cases and exception cases and various treatments, etc. And of course, they still do. But it turns out that people get better faster when they understand what’s going on. This does not necessarily mean more information; it means better communication. And that’s what Patient Centered Care is all about.

The first item on our agenda was to get to know each other’s stories. We went around the room, giving each parent as much time as he or she needed (there are five of us). The designated speaker was usually the one holding the Kleenex box. Many of our stories started way before the birth, sometimes even before the pregnancy. We told it all. We unburdened ourselves: our guilt, our regrets, our gratitude. The frequent scares and unexpected joys. Then and now.

Then: the moment when we all thought, “Oh my God. My baby is going to die.”

Now: the profound debt of gratitude we feel toward all the other people in the room: doctors, nurses, the hospital staff that thought it was important to have a council like this to begin with.

Which reminds me, a year ago today we brought Wagner home from the hospital.

Tales from the Teeth

2011-03-25T22:49:00.000-07:00

Wagner said his first word, “hi,” (old news) and he waves when he says it. It’s really cute because he says it in a higher pitch than his normal speaking—er, uh, babbling voice, presumably because when we say “hi-i!” we also say it in a higher-than-usual voice. Michael waves at “hi,” too, but hasn’t really said anything yet. Wagner has also said “peek-a-boo” (breaking news). It came out “eek-boo.” The wheels are really starting to turn for Wagner regarding language. I think it will still be slow going, but we’re starting to get there.

And now the bad news—the boys are missing quite a bit of enamel on their top teeth. Enamel is something that forms in the third trimester of pregnancy and while the Internet estimates that 80% of preemies born this young have enamel hypoplasia (fancy tooth talk for “not enough enamel to go around”), we don’t know of anyone in our small circle of preemie friends that suffer from this condition.

It literally looks like a coat of paint is missing on their top teeth. It’s white on the sides and near the gum, but the center of the tooth is yellowish and a little mealy looking. The enamel on the sides of the teeth is a little raised. It reminds me of a halved section of garlic that has sprouted.

I noticed it last Friday (March 18) and on Monday we made an appointment with the dentist who fit us in on Tuesday (there happened to be a cancellation).

Yes, the boys have enamel hypoplasia. No, the enamel won’t grow back. Yes, their permanent teeth will be similarly affected. The most we can do is aggressively work to prevent cavities. When they are older they can get sealant, and if they get cavities before then we can get crowns, but it doesn’t make a lot of sense to apply sealant now when they have only 3 and half top teeth apiece.

The pediatric dentist showed us how to brush their teeth (with a little finger glove that has bristles) and how to floss their teeth (with a little plastic flosser called “Mr. Flossman). She told us all about xylitol, a natural sugar that kills bacteria (“Why didn’t you tell me!” you are thinking) and gives you diarrhea if you have too much (“Thanks for telling me!” you are thinking). Oh – and don’t give it to dogs.

Then she gave the boys an iodine rinse and a fluoride varnish. We go back in three months for more of the same.

We went home armed with xlylitol toothpaste gel called “Xlyitots” for twice a day brushing, xylitol drops called “Xyliteeth” for twice a day rinsing and little antibacterial tooth wipes called “Spiffies” for twice a day tooth wiping.

Next up: Brushing Your Toddler’s Teeth

Speak, Boy!

2011-03-21T22:35:00.000-07:00

Nearly a month has passed since I first noticed what the boys weren’t noticing—their names, our names, simple commands such as “Come here,” “Look!” and “No!” Since then folks have given me some great anecdotes about someone in their family (always an uncle, strangely enough) who never said a word until they were 3 or 4 or 5, at which point they spoke in complete sentences.

Perhaps if the families of these uncles had fish eye lenses installed in every nook and cranny like this guy, they’d be able to determine just what their kids were communicating, even though they weren’t using words to do it.

One of the great reliefs of our early intervention playgroup, particularly the one with the speech therapist, was that, while the boys only say unintelligible things, it doesn’t mean they only think unintelligible things. The playgroup facilitator (for lack of a better title) and the speech therapist were able to point out many efforts that the boys make to communicate—Wagner in particular. They were able to conclude this after “a dialog” with Wagner that involved patting.

Cathy, the most wonderful early intervention specialist ever (also known as the playgroup facilitator) started a game with Wags. Securing eye contact with Wagner (it’s called joint attention), she patted her leg. Wagner watched her and then he patted her leg. She nodded and smiled and said something to him and patted her leg again. He responded by smiling and patting her leg again. It sounds simplistic and non-deterministic, but this is turn-taking. These are the real building blocks of communication.

Before you and I can have a conversation, I have to know that you are listening to me. If you look me in the eye and nod (or cock your head to the side), I know you are listening. I say something and when I’m done, I pause and it’s your turn to say something. This is established in the patting game. It’s an interchange that’s easy take for granted until you see another baby how doesn’t get the game—like Michael.

When we went back the next week, Wagner remembered the patting game with Cathy and they repeated it. Michael was still uninterested in the patting game, but he had other signs of budding intelligence. He was appropriately startled by and curious about the hungry cries of the one-month old who was also in attendance. And he and Wagner engage in their own form of “conversing” with each other—joint attention and taking turns patting and squealing.

That’s why you go to the experts (good experts, not just degreed ones). They can point out this or that gesture which is actually meaningful—not just in your imagination. And once you know what to look for, you can repeat it and reinforce it.

Other things the speech therapist recommended to help with speech production. Lose the bottle, push the sippy cup. Sucking is easy (that’s why newborns can do it). Drinking from a cup is hard. It involves a more sophisticated coordination of motor patterns. Trying to get them to drink from a regular cup will help, too. Michael’s been drinking from a cup for a while (with assistance, of course). He insisted on it (more communication!!!!) ever since an ear infection made bottle sucking impossible. But for some weird reason, the sippy cup just mystifies and frustrates him. Wagner’s better with the sippy cup. We are also trying to be better with the sippy cup, since the bottle is easier for us, too. Just fill and serve and put ‘em to bed.

But bed bottles are bad for their teeth, so we’ve got to lose the bedtime bottle (or at least brush their teeth afterwards, which defeats the purpose of bottle feeding as a means of sedation). Tomorrow we go to the dentist for the first time, and we’ll get better information then. It turns out that the boys have some enamel problems—such as, it’s not forming on some of their teeth—a condition that according to the all-knowing Internet, affects 80% of preemies born at their weight and gestational age. (Younger than 28 weeks and less than 1500 grams. The boys were 25 weeks and 860 g & 720 g). Stay tuned, gentle readers!

OH MY GOODNESS! I ALMOST FORGOT!!!! WAGNER SAID “HI” TODAY! COMPLETE WITH WAVE! There I go again, burying the lead.

When Experts Speak

2011-03-15T22:37:00.000-07:00

I haven’t yet written about my current work with the hospital, but part of it involves looking pamphlets and brochures and explaining why this or that phrase will not resonate with the intended audience.

For example, my most recent work involves a flyer on breastmilk. The NICU hosts two different kinds of Moms: the Moms who envisioned nursing their newborns every two hours while a choir of angels sang in the background, and the Moms who think, “Euuuuuuuuuuewwwwwwww.” One group pumps diligently, the other group needs a little prompting.

Breastmilk is better than formula for all babies, but for healthy babies, the difference between babies who are nursed and babies who are fed formula is negligible. Repeat: negligible. You may have to read that sentence twice, because the La Leche League would have you believe that formula is poison, but formula is nutrition. But if you want a baby that healthy, strong, and smart, it’s better to be rich than to be nursed. So if you’re stressed out because you have to go back to work and pumping is making you so crazy that you’re losing hair in patches, pull out the powder instead; your baby will be no worse off because of it. Really.

If, on the other hand, your baby is a NICU baby, suck it up and pump, Mom. Your baby needs you. Breastmilk has amazing properties that modern medicine can barely identify, let alone replicate. The best it can do is to invent ways to get the milk out more efficiently in the event that your baby cannot.

Spending forty-five minutes tethered to a hospital grade pump is a real drag, especially if you have to do it eight times a day. I know. I bribed myself with candy bars to make myself wake up in the middle of the night to pump. I took a prescription drug that made me depressed, panicked, and exhausted (I sleepwalked through six weeks of last year’s winter) just to improve milk supply. It sucked. But sick babies need breastmilk and Moms are the only ones who make it. Breastmilk improves digestion and decreases risk of terrible diseases such as NEC. (Diseases to which preemies are susceptible. Healthy babies need never even know that these things exist.)

The NICU staff’s hands are tied, in a way, because the last thing they want to do is pressure a stressed-out NICU mom into pumping breastmilk for her baby and at the same time, they need that breastmilk more than anything. (They can use banked breast milk. Our boys were on breastmilk when my supply was inadequate, but it’s not the same. In fact, the constitution of a mother’s milk changes as her baby grows. The milk of a mom whose babies are twenty-five weeks’ gestation is different from her milk when her babies are twenty-eight weeks’ gestation.)

In an effort to gently get all Moms pumping, the NICU staff put together this flyer informing parents about the benefits of breastmilk.

And that’s where I come in. I look at the flyer and tell them why it doesn’t say what they think it says.

The breastmilk flyer that outlines 10 major benefits to providing breastmilk to babies ranging from decreased risks and increased benefits for the baby to decreased risks and increased benefits for the mom. (They can’t say “breastfeed” because in most cases, these babies are unable to nurse yet).

The trouble is, the flyer’s list of risks and benefits list multisyllabic medical terms that make even my eyes glaze over—and I know to what these terms refer. I can’t imagine an uneducated mom (the target audience) hanging in there past the second sentence.

The flyer makes a number of fatal assumptions, but one that stands out is that the flyer assumes that 1) mothers know that breastmilk is powerful and 2) mothers know that they are the only ones who can provide the breastmilk. To this end, one of the changes we made to the flyer is to call breastmilk “medicine.” Comparing breastmilk to medicine introduces an aspect of the liquid that these moms might not be familiar with. Now it doesn’t matter if she doesn’t know what necrotizing enterocolititis is. She understands that it’s a medical condition that can be treated through the medicine of breastmilk.

The gist of the recent breastmilk brochure is the recurring problem of education and communication. If you believed what I have to say to you, I wouldn’t have to say it. Given that you don’t believe it, then I have to say it a different way. In other words, those moms who already pump milk morning, noon, and night (along with early morning, late morning, early afternoon, late afternoon, late night and wee hours) know that the constitution of milk has special properties that can treat specific conditions. Skipping over that fact and listing just risks and benefits doesn’t the moms who may just think of milk as milk.

I know that information is only understood within contexts and that to change minds, you have to find the right context.

So I was very surprised to find myself resisting the advice of the speech therapist who told us that we must bombard our language-delayed babies with words and gestures. I looked at her, nodded at her dutifully, and decided that I know better.

Me—who has had one semester of Language Acquisition. What do I know that she doesn’t?

My Name is Nobody

2011-03-08T22:34:00.000-08:00

So just to recap, the boys are showing multiple signs of language delays, starting with the fact that they make no inferences about the world around them and ending with the fact that at 10 ½ months adjusted, they still do not know their names.

Granted, twins in general are usually slower at learning their names. This is not surprising, since identical twins are so often confused with each other. Our house is no different. Half the time Chiara calls Michael, “Wagner” and Wagner, “Michael.” The other half she calls Michael, “Isabel” and Wagner, “Jack.”

I’m no help, either. I call the boys “Sweetie,” “Buddy,” Dude,” and “Puppy-puppy.” Sometimes the boys are “Mister Michael” and “Mister Wagner” and sometimes the boys are “Mikey” and “Waggy.” For a time Matt called Michael, “Tiny Elvis” and Wagner was simply, “Spaceman.”

This lack of consistency no doubt adds to their name confusion. In fact, if Michael were to go on probabilities alone, he would assume that his Christian name is “Owbegentle,” as that is the utterance that is most frequently directed at him.

I’m starting to get concerned. I haven’t yet been able to talk to the speech therapist from our NICU Early Intervention playgroup because the boys have not been healthy enough to attend since November. They haven’t been that sick (except for this week—this week three out of four ears are infected and we have just been given a fancy 3-day second line antibiotic. Last night Mister Jack Wagner ran a 104.5 temperature). It’s just that the playgroup is all NICU grads—in other words, babies with fragile immune systems. To even think of attending when all three of us are less than 100% healthy isn’t just bad form; it’s dangerous for the other babies.

I talked to the speech therapist that is associated with our new developmental playgroup (one run by Chiara’s daycare). She’s very nice and very respected but had never met our babies before two Fridays ago. Her suggestion was to “bombard them with language” and she previewed for me a storm of sounds and “power signs” to help jumpstart our wordless tots.

And I decided that I didn’t want to take her advice.

Speech Delays Part II

2011-03-01T21:44:00.000-08:00

Context teaches babies a lot. “All gone” is consistently said at the end of a meal. “Uh-oh” after something is dropped. “Bye-bye,” “look!” and “night night” are all said in the same sorts of contexts.

Babies are also incredibly good at determining intentionality. That means they can tell the difference between when Dad looks at Baby and says, “There’s your bottle!” and when Dad looks at Baby but is really saying to Mom, “There’s your cell phone.”

In one of my favorite studies (interpreted as a harbinger of empathy), a researcher drops her pen. Sometimes she drops in a very intentional way (the control). The babies sit and stare (or continue playing with something else). Sometimes the researcher drops her pen (seemingly unintentionally—I think she says something like, “oops!”) and struggles to reach for it. Babies as young as nine months will crawl over pillows to pick up the pen and hand it to the researcher.*

* I actually tried this with Chiara. And it never worked until the one day when I wasn’t trying to do anything; I just accidently dropped the remote. Chiara was about fifteen months old and she crossed the room to hand it to me.

So babies learn language through inference, repetition, and acclimation to certain sounds, although exactly how is still anyone’s guess. The Neural Theory of Language (proposed by Jerry Feldman and George Lakoff, both of UC Berkeley) has some really cool answers to this question. But we’ll save that for another day.

Back to the boys. The boys do not understand intentionality. They do not react to mood. In other words, on the very few occasions when they have been the object of someone’s wrath (read: Chiara’s wrath), they do not react appropriately. They are not startled; they do not cry. If anything, Michael will laugh, which incites our little Type A Angel even more. Five/six months is the point when babies should react to anger with fear. Our babies really haven’t witnessed any anger other than their older sister’s temper, so it’s hard to say that they are delayed when they simply haven’t been exposed to it.

On the surface, it sounds great that our little boys have been raised in such a happy family that they have never witnessed screaming and fits of rage; and it is. I, too, am happy that we can provide such a peaceful environment for them. But it also means that our even-keeled home life gives us, the parents, few opportunities to determine just what the boys can infer from their surroundings. Reacting to anger with fear (as sad as it sounds to think of scared little babies) also means that the babies have interpreted and reacted to an emotion they have witnessed.

Partly because of their early exposure in the NICU to incessant noise, the boys do not get startled. Sudden noises do not startle them or surprise them or scare them. Again, this is a double-edged sword. On the plus side, it makes them calm little Zen babies. And it makes them generally quiet. On the minus side, it means they do not attend to an audio change to their environment. This is really freaky to see. For example, if you stand right behind them and clap your hands loudly, the twins will not turn to see what the sound is until after about five or six loud claps. (If they can see your hands, they attend immediately).

We know that they can hear; that’s not the problem. We know they can hear because we have to tiptoe around when we’ve put them down to sleep. Further proof is that they turn their heads in the direction of music when it starts to play, and my favorite, once when I had put them down for their naps and went into an adjacent room to talk to Caitlin, the boys pounded on the shared wall between the rooms when they heard our voices. Plus, they’ve had hearing tests. It’s not their ears; it’s their brains. Their brains don’t say, “Hey! What was that? See what it was!”

I suppose you could say that if you boil it down to its most crucial elements, intelligence starts with noticing things. You can’t learn about things if you do not first acknowledge their existence. In this respect, the boys are like quiet, fat, simpletons. It’s a concern, but I’m not sure yet what to do about it. Drop books on the floor behind their backs? Pick fights with Matt? Yell at them?

I guess we’ll just have to wait and see.

Speech Delays

2011-02-28T21:43:00.000-08:00

It’s official. The boys have language delays. They are nearly 14 months old (10 ½ months adjusted) and they still don’t know any words. By 10 months, Chiara had already said her first word* and was started to sign regularly.

* “Bye-bye” to a very disgruntled airline passenger. When I told the woman that my daughter had just said her first word to her, the woman brightened and oohed and ahhed and cooed at Chiara.

I don’t mean that the boys don’t say any words; I meant that the boys don’t understand any words. They don’t turn to me when someone says, “Where’s Mama?” They don’t know who “Daddy” is. When you say, “Look!” and point, they don’t look. They don’t even know their own names, a milestone that is usually reached around six months of age.

What does this all mean? It means that the boys have significant speech delays, because, of course, before you can speak you must first understand. By 15 months most babies understand just about everything that is said to them (or at least, they can intuit fairly well what is expected of them). We are way off that mark.

Even the experts don’t fully understand how we acquire language. They just know that it happens. If you’re around it, it will come. When babies are born, they can attune to every phonological sound that happens in every language. This is a little difficult to explain without a remedial lesson in phonetics, but it’s like this: different languages have different sounds. For example, Japanese has one sound that for us can be either an “l” or an “r.” Spanish has a “b-ish/v-ish” sound that is written as “b” but is neither like an English “b” or “v,” as in the word “cabeza” or “calabacitas.” (To make things more confusing, Spanish also has a “b” sound that is written as “b” that does sound like an English “b.” Confused? Just wait til I get going!

This back story is just to say that there are about 200 different consonant and vowel sounds, but you only hear 45 of them unless you are completely fluent in another language (using native consonants when speaking a foreign language is part of what makes a foreign accent). Newborns hear all 200 of them. In other words, at birth, all American babies can hear both Spanish “b’s” just as all Japanese babies can hear the difference between “l” and “r.” Then, as babies acclimate to the language around them, their brains attune the sounds of what will be their native language. Around nine months, American babies will no longer hear the difference between the [b] in “bonita” and the [b] in “calabacitas” and Japanese babies will hear “lake” and “rake” as the same word.

As babies start to tease out the sounds of their soon-to-be native language, they also start to figure out that strings of speech sounds correlate to certain meanings. Around the six-month mark, most babies figure out that there is a string of sounds that correlates to them. You know this because around six months, you can call your baby’s name and she will turn her head to look at you. It is also true that your daughter will turn her head to look at you when you call her, “Potato Head,” but the difference is not only that (hopefully) you call her by her Christian name far more often than when you call her, “Potato Head,” but your reaction is (hopefully) very different when she turns her head in response to her name and when she turns her head in response to “Potato Head.” This is how she figures out her name.

This is important because once she learns her name, she can use those sounds as a “token.” We imagine that spoken words have pauses between them in the same way that we have spaces between written words. That is a figment of your imagination. (You might have experienced this phenomenon if you have ever tried to learn a foreign language).

So how do babies do it? How do they figure out where the beginnings and endings of words are? How do they figure out that sounds are words in the first place? How do they figure out that sounds are referential and not just exclamations of joy and/or poop?

Well, for one thing, we don’t talk to our babies in the same way that one would, for example, defend his dissertation. We modify the way we speak (experts call it “Motherese”) and we modify what we say. Motherese refers to the tendency of all people, in all (studied) cultures, and all languages, (even of all ages; Chiara speaks Motherese when she talks to the boys) to speak slower, higher pitched, and more exaggeratedly when speaking to babies.

Ooh!!! Are those your toes, Michael? Michael, those are your toes! Michael, look at your toes?

You know what I’m talking about—it’s that stupid way that people talk to babies that you vow you will never do. Then you have a baby or you see a baby or you think about a baby and you open your mouth and out tumbles Motherese, as if your were a native speaker. Good thing, too, because Motherese really helps babies learn language.

Wagner after a tortellini dinner

If You Give A Preschooler A Party

2011-02-22T14:14:00.000-08:00

At the end of last week’s episode, our proud heroine was bragging about the no-frills party she was going to throw for her daughter. Let’s tune in today to see just how that party really went.

It was a dark and stormy night…

My original vision was to have the party guests bring baby clothes to donate instead than birthday presents. There’s a hair salon up the street which exclusively cuts kid’s hair and is also a drop-off point for gently used (or new) clothes for babies in their first year of life. The clothes are carefully packed in 12-inch by 12-inch boxes with an even distribution of sizes from newborn up to one year. The boxes are then labeled for gender and doled out to Bay Area maternity wards to Moms who will need them the most. (Alta Bates NICU is also a recipient). For the curious or for those buried under piles of tiny Baby Gap onesies, the organization is called Loved Twice and you can read about them at http://lovedtwice.org.

I thought the kids could help decorate the boxes with stickers and then we’d all parade to the hair salon where we would exchange the clothes for some heavy praise and helium balloons. Then we’d walk back to the house for the rest of the party.

The problem was that it would most certainly be raining cats and dogs that day. Besides, no one had any hand-me downs anymore. So we scrapped that part of the party. Instead, I made an appointment for Chiara and a friend to get their hair cut and “styled” (glitter and princess braids) early that morning and we’d drop off our boxes then (we have LOADS of baby clothes to pass on.) Good thing, too, because it was the kind of rainy day that makes you wonder why we still have to take three-minute showers. Those reservoirs must be pretty full by now.
The party itself went very smoothly, but I was surprised at my lack of foresight in some key areas. Here are ten nuggets of After-the-fact Wisdom:

1. Get a noise ordinance.
Little kids are really loud. And for every party guest, the decibel level increases by a factor of two. One more kid and we would have been louder than a 70’s Deep Purple concert. I’m surprised that our downstairs neighbors didn’t march through the door and throw all the kids out the window. If you invite more than two children, consider earplugs.

2. Sometimes four-year-olds act like little kids.
Somehow I thought I’d invite four of Chiara’s friends and it would be like having five Chiaras sitting playing quietly until dinner. But here she was, running around and screaming—just as loud and rambunctious as the rest of them.
When I came into the twins’ room and shouted, “Everybody get out of the crib, NOW!” she responded with, “We heard you tell us not to jump in the crib but we misunderstood.”

3. If you give five preschoolers a raw egg to hold, at least two will drop theirs within the first ten seconds.
We had this brilliant idea of having the kids make and decorate cupcakes. Chiara and I had a blast baking the cake we brought to daycare for snack time and I thought that cupcakes would be a nice activity during the party. So while I finished making dinner, Matt and the kids made cupcakes. Let’s just say that messes were made.

4. You can’t make kids eat green beans.
And there ain’t nothing nobody can do about it. All four guests politely turned down my green beans with a lovely, “No, thank you.” I had even sautéed them in bacon grease to make them extra appealing. Only Chiara took a healthy helping, possibly because she was afraid I’d deny her a birthday cupcake if she didn’t eat some vegetables.

5. Make sure you feed everybody.
If there were one thing we would have done differently, it would have been to only invite one child to the party. If there were two things we would have done differently, it would have been to have the twins’ babysitter come to take care of the boys during the party because I’m sure she would’ve remembered to feed them. We thought they were screaming because they wanted to be like the other party-goers. Turns out they were just really, really hungry.

6. Cupcakes are hard to frost.
Who knew? While five kids consumed approximately four green beans and sixteen pounds of macaroni and cheese, two dozen pink and chocolate cupcakes cooled. Then while Matt fed the twins, the kids and I decorated the cupcakes. We had three different colors of frosting: white, pink, and chocolate, and a shaker with six different kinds of sprinkles. The trouble is, the frosting has to be spread with the slightest touch. If you bear down too hard, the cake comes off with the frosting. This was frustrating for some of the kids. One went through four cupcake tops before I caught on to what was going on. In the end, I frosted while the kids waited patiently for their turn for the shaker. This is actually very sweet.

“F,” one would ask, “Can I have the sprinkles when you are done?”

They kept careful tabs on who was next in line for sprinkles, cordially passing the shaker around the table like little Stepford children.

7. Excited children pee a lot. Sometimes all over the sofa.
Actually, it wasn’t the sofa. It was the upholstered bench of the breakfast nook. Chiara, the kid who only needs to pee three times during daylight hours (balanced by seventeen times between the hours of 8pm and 10pm) had an accident of Hoover Dam proportions. She was hysterical over the accident. Absolutely inconsolable.

“I’ve never seen so much pee in my whole life!” she sobbed.

Neither had I. While Matt gave Chiara an impromptu bath, I cleaned up the mess while the other kids played “daycare,” putting one of the kids behind the safety gate and telling her not to cry and that her parents would come back for her soon. Luckily, when the twins heard the bathwater being run, they saddled up to the tub to cheer Chiara on (they really did!), leaving me to clean without having to worry about where they were or who else might be trying to pick them up.

8. Sometimes, just sometimes, you can tell five kids to put on their pajamas and put their day clothes in their backpacks and they will do it.
It’s true.

We also were able to get each kid to bring his plate and placemat to the kitchen and even got them to help Chiara clean up her room! The only trouble was that they had no way of knowing what went where. But all in all they did a great job. I almost had them help me clean out the pantry as well.

9. If you decide to show a 24-minute cartoon, make sure it’s actually only 24 minutes, and not the one Backyardigans episode that is really a ninety-one-minute movie.
Yeah. Our bad on this one. Three Backyardigans disks from Netflix and we open the director’s cut of “Robot Repairman.”

10. If you forget to bring out the party hats, for God’s sake don’t bring it up when you are kissing your child goodnight.
‘Nuff said.

Overall, everyone had a blast. This little video captures a bit of the magic.

Nostalgic Happiness

2011-02-18T15:41:00.000-08:00

I just finished sorting the last of the clothes that the boys have outgrown. I have: one big bag for a mom at daycare (we are trading baby boy clothes for girly dresses for 4yo) and two wine boxes (boxes for a case of wine) of baby boys clothes for the Loved Twice organization. (They send moms-in-need home from the hospital with a case-sized box full of clothes sized newborn to 12 months. Alta Bates is one of the hospitals for whom they collect donations). Anyway, I'm doing it today because their drop off site is a salon that cuts kid's hair and tomorrow morning Chiara and a friend are going to get their hair done in the most princess way possible.

What a journey going through the hand-me-downs!

The clothes on top were easy--it's the stuff they've most recently outgrown. But getting to the bottom of the box was like traveling through time.

Of course there was a fourth pile--the Hawaiian outfits that we busted out (literally) for Cousin-O-Rama. The fanciest socks EVER from the Abnees. Cathy Johanni's matching World Peas outfits, the 4th of July outfits my mom got. Matching sleepers from one of our nurses. All the while the clothes are getting tinier and tinier until we get to the shirts that the boys wore in their last month at the hospital. Shirts that would barely fit Chiara's dolls.

And then, at the very bottom of the box, two notes from Cousin Jack (6 yo now), one for each twin, with pictures of a baby in a stroller and someone pushing the stroller.

TO MICHAEL
MICHAEL WE LOVE YOU BEFORE YOU WERE BORN

TO WAGNER
WAGNER WE LOVE YOU BEFORE YOU WERE BORN

I never thought of it that way, but Jack's right.

Super Mom

2011-02-15T22:41:00.000-08:00

Every once in a while, I have a moment that makes me feel like Super Mom. Like the time I simultaneously nursed twins, supervised a preschooler’s art project and, with the help of a Hello Kitty radio, followed the Giants as they clinched the World Series. Somewhere in between the fifth and seventh innings I cooked dinner, too. True story.

Well, folks, I’ve done it again. My Super Mom moment of 2011: I am throwing a birthday party for my soon-to-be four year old. And I have laid down the law. No presents. No piñatas. No princess party entertainers. No goodie bags.

Next Saturday four moms from preschool are going to drop off four preschoolers. Here in our modest apartment we will don party hats and eat pasta and green beans. We will sing “Happy Birthday” (and eat cake—I’m not a total Party Tyrant). And then we will watch T.V. That’s the party. And I think the kids will love it.

I know what you’re thinking. You’re thinking, “How does throwing the lamest party of all time make you Super Mom?”

It doesn’t. What makes me Super Mom is my decision to stand up to party peer pressure. I refuse to throw a birthday party that requires roughly the same amount of stress and planning as my wedding reception did. Don’t get me wrong. Parties are great. I love parties. But they’re not about the size of the venue or the length of the guest list or pile of presents. They’re about sharing and friendship. That’s why we are only inviting the kids we know really well.

At first I was terrified that some afternoon at preschool a mob of angry Moms would corner me and demand that their child be invited to my daughter’s party. How dare I exclude them! How dare I deviate from party protocol!

But then I realized that none of us wants to be part of the birthday party insanity. None of us wants to be pressured into throwing a party with thirty screaming kids cracked out on sugar, just as none of us wants to be pressured into picking out presents such as developmentally appropriate Melissa & Doug macramé kits when it’s our kid’s turn to be a guest in the rented Bouncy House. We are all looking for a way to jump off the birthday bandwagon.

When I informed Chiara what I’d planned she said, "Well, I have some things that I would like to have at my birthday party."

Like what?

"I would like to have my friends play in my bedroom."

Done!

"And can I put my candles on the cake?"

Of course!

"And can I have chocolate cake and pink frosting?"

Yes. Yes, of course you can.

And that’s why I am Super Mom. Because I can give my kid everything she wants for her birthday.

A Year After Surgery

2011-01-21T19:01:00.000-08:00

Last year today the boys had surgery. It was a fifteen minute “procedure” that involved an incision running along the perimeter of the shoulder blade, gentle push to get the lungs out of the way, and a little metal clamp to solve the whole issue of “an open valve to the heart that should be closed.”

The surgeon and anesthesiologist (who came from Children’s Hospital of Oakland so we didn’t have to take an ambulance transport to them) were about an hour late. I spent that hour with my hands on Michael, giving him “compassionate touch.” Or as I like to think of it, a micro-preemie hug.

I had meant to spend equal time with each twin, but Wagner’s veins kept collapsing. By the time they had a decent open line, we felt he’d been through so much; it was better to let him rest before his surgery.

Michael was always the one who was more agitated during their time in the NICU, so maybe it worked out for the best that I spent more time praying over him than I did over Wagner.

The surgeon performed three surgeries that day, back-to-back-to-back; two in Room 2 and one in Room 3. Matt talked to the mom of the baby in Room 3. She was very young. Had twin girls. I had meant to talk to her, ask her how she was doing. But I didn’t do it that day and before I knew it, her twins were well enough to go home.

Michael went first. When he was done, he was all laid out on the base of his isolette bed, also the cutting table. It was the first time I saw him on a bed, not a in a box.

The nurse asked me, “Would you like to give him a kiss?”

Really? Give him a kiss? What about the germs?

It took a while to find a stool high enough to climb on so that I come down to kiss him from above. I gave him a kiss on the belly. You’d think that my arms would have ached because, up to that point, I still hadn’t been able to hold him, (and still wouldn’t for another week.) But they didn’t. The kiss was enough. A sweet kiss with a golden timbre, a warm rush through my body. Another bonding moment with my baby.

Tub TIme!

2011-01-14T12:26:00.000-08:00

Here are some cute pictures from Tub Time; the boys' first bath in the tub together.

Raging Success: The Michael & Wagner Kovac Christmas Gift Drive

2011-01-06T14:59:00.000-08:00

‘Twas the week before Christmas and all through the house … were boxes from Bed, Bath & Beyond. There was bubble wrap and packing slips and wrapping paper and handmade cards with messages such as, “Marry Chirstmas [sic]” from kids in Ohio—all evidence that a lot of people had donated to the Michael and Wagner Kovac Christmas Gift Drive--over $1500 in gift cards and blankets and socks like these from BB&B, all Christmas presents for cancer patients at the Moffitt Center in Tampa, Florida, with some gift baskets for the doctors and nurses who care for them.

My niece (with help from her parents and siblings) wrapped forty-nine socks-and-blankets tote bag combos. Armed with $200 in gift cards and $50 in coupons, she made three trips to BB&B to pick out treats and sweets for the staff on 5th Floor North Side of Moffitt. The final gift card balance was $1.67.

It took nine people to carry all the bags and baskets to the 5th Floor North Side. The Michael and Wagner Kovac Christmas Gift Drive was among other gift drives that handed out presents to cancer patients on the morning of Christmas Eve, but the only one that also brought thank-you gifts for medical staff and caregivers.

In addition to fuzzy socks and cozy blankets and honey roasted peanuts, each gift came with a letter explaining why people from as far away as San Francisco and Italy thought that cancer patients should have fuzzy socks, cozy blankets, and honey roasted peanuts. Be sure to check it out here.

My sister-in-law (who—and I have this on good authority—has an entire wing in Heaven dedicated to her) wears many hats: wise and thoughtful person, wife, mother, chauffeur, Chex-mix Chef Extraordinaire and now, slide-show documentarian. She put together this youtube video so you can get a taste of how the gift drive turned out. Check this out, too. It’s really cool and it thanks all our donors at the end.

I am proud to be her sister-in-law and grateful for all her hard work. I am proud of my awesome niece and grateful for her shrewd eye for bargains and excellent math skills and wiliness to follow-through on the vision. I am proud that so many wonderful friends and family members donated to our cause and I am grateful for their contributions. You guys rock! Especially Jimmy Valdes and Heather Larrick who between the two of them, accounted for nearly half of all the tote bags purchased. I am also grateful to my friend and fellow micro-preemie Mom, Kat whose own gift drive (the Loki Sky's Holiday Gift Drive for Alta Bates NICU) gave me the idea in the first place.

I know December is a crazy month for everyone. Many of you emailed me to say that you supported our cause and wanted to contribute. It’s not too late. Yes, there’s always next year, but you can also give back in a comment here to my sister-in-law CJ and my niece GJ thanking them for making it happen. Without them, this gift drive would have been nothing more than a blog post.

Tote bags with blankets and socks from Bed, Bath & Beyond

(They're now $3 cheaper than they were in Dec.

Should we stock up for next year?)

UPS was busy

all the little touches

just a sampling

with the gifts for staff

all the loot

The Letter

2011-01-06T14:46:00.000-08:00

Here’s the letter that went with the handmade card by kids in Ohio that came with the package that was bought by loving and generous friends and family members who offered some of their reasons for giving.

My name is Janine Kovac. I live in Oakland, California. Last year I spent Christmas and New Year’s in the hospital. I was pregnant with twin boys who were due in April but were born in December instead. The boys spent the next three months in the hospital and my husband and I spent those three months at their bedside.

We had the support of so many of our friends and family, not to mention the support of the wonderful doctors and nurses at our hospital. They saw us through our journey.

Now it is our turn to give back.

Together with one of our nieces, we started “The Michael and Wagner Kovac Christmas Gift Drive,” named after my sons and inaugurated in honor of their grandfather, who is a patient here at Moffitt. Our drive benefits the 5th Floor, North side: patients, families of patients, and doctors and nurses on the 5th Floor. We raised over $1500 from friends and family all over the country: Minnesota, Texas, San Francisco, Chicago, Columbus, Albuquerque, even Italy!

We give because we know what it’s like to be in the hospital during the holidays and we know that even the smallest gesture of goodwill can make a difference.

Here are some of the reasons our friends and family chose to give:

We gave because everyone deserves some holiday cheer!!
Marian Kramer & Eric Sampson
(Marian raised $4000 this summer for the Leukemia and Lymphoma Society through Team in Training)

There is so little in life we can control, we can contribute by giving
All the best,
Mims Mathers

We gave because
...everyone deserves fuzzy socks at Christmas!
...my dad is a cancer survivor! So is my aunt! So is my mother-in-law!
-San Francisco mom!

We gave because we are grateful to our community and want to extend it across the country.
In the hopes of bringing you some warmth and smiles,
Daughter of a two-time breast cancer survivor and parents of a brand new baby boy

1) I'm a breast cancer survivor
2) I believe in the power of praying and sharing
and last but not least
3) "It's not the strongest or the smartest of the species that survives, but the ones who can best adapt to change." (Charles Darwin)
Love and Hugs, Aunt Norma

We gave because we know that God doesn't always get us out of something happening in our lives, but He always takes us through everything so that we will always have Hope. Then we can be there for someone else who needs to know he/she will be able to face tomorrow.
Sister of a breast cancer survivor, stomach cancer survivor, and liver cancer survivor.

We gave because we know from experience what it feels like to spend time in the hospital.
Because we know all too well that it is even a little bit more challenging when it is the Holiday Season.
And because we know how "random" acts of friendliness from strangers during these difficult times really cheered us up.
Kathalijn, Jesse and Loki Reynolds

We wanted to donate to support our granddaughter Gen and also for the recovery of our daughter-in-law’s father, a Moffitt patient.
Norma and Wally, Ohio

We gave because…
… because our son, Matt, ran in a Moffitt race last year and had a great time
… because my favorite aunt’s a 2x cancer survivor
… because my niece is a cancer survivor too (but I can't say 'favorite' because her sisters would know!)
… because little things mean so much at Christmas
… because this year, we can afford to give, and in past years we couldn't (yea!)
Someone from the Columbus, Ohio Family

I did it!! This is such a wonderful thing to do!!!!!
Jan, 2 time lymphoma survivor

… because I love my father-in-law
… because my friend’s a cancer survivor—had chemo & surgery and is still just as healthy, strong, and fiery ten years later
… because I wanted to support my niece
… because cancer runs in my family
… because I spent Christmas in the hospital last year
Janine Kovac, Oakland

From our hearts and minds to your toes and feet!
Merry Christmas

Happy Birthday, Boys!

2010-12-30T00:11:00.000-08:00

The boys turned 1 today. Our only plans were to go to the hospital and say hello to the staff. We’re regulars at the NICU—I’m around at least once a month for committee meetings, so the doctors and nurses always get the latest news on the twins. It just seemed right to make a victory tour.

In 2009, 7800 babies were born at Alta Bates. You think that they wouldn’t remember us down on the Labor & Delivery floor. You’d be wrong. I think it was the combination of mono-amniotic/mono-chorionic twins plus the births at 25 weeks plus almost-New-Years-Eve. Everyone remembered us. Some even by name.

Our first stop was the nurses in the antepartum ward. The nurses don’t remember me so well (not even as the person who brought chocolate chip cookies on Christmas Eve for the night shift) but they all remembered Matt. Maybe because he spent every night in Antepartum 12 with me. I think he even had his own shelf in the ward’s refrigerator, filling it up with pepper crusted beef and fresh Straus Family milk from Whole Foods—the desperate culinary requests from a pregnant wife.

The first person we saw was the doctor who’d given the boys their Apgar scores. She knew us well. She was the doctor who decided that the boys would have the ligation surgery three weeks after they were born and the doctor who helped us pick a pediatrician. Next we saw my favorite nurse, Mariann, whose grandson is the same adjusted age as the boys.

Everyone said the same thing: “I was just thinking of you today!”

I had called ahead to see if the doctor who delivered the twins was working today. She was. (Actually, there were nine doctors there in the room when the twins were born. Three for each of the boys and three for me.) This doctor was the one who called the shots and wrote up the report.

She was floored to see what the twins looked like a year later. And so happy! You would have thought that I had just given her a check from Publisher’s Clearing House.

“You just made my year,” she told us, more than once. She couldn’t stop smiling.

“We never see this. We know that most of them do pretty well when they go up there [on the 4th floor], but we never know…” she trailed off.

Every once in awhile I do a good deed (like those Christmas Eve cookies—which Matt baked, not me), but the simple act of showing the attending obstetrician that her handiwork resulted in two miracles with stellar health—twins born three months ahead of schedule, one with the umbilical cord wrapped twice around his neck, the other with a knot in his—feels like the best gift I have ever given. Who would have thought.

I’m glad she knows. I’m glad she knows that miracles happen and that she was at the starting line.

Wagner and Michael in their matching Penn State onesies from Cousin Lawrence

Memories of Last Year: Sneaking Suspicions

2010-12-21T01:51:00.001-08:00

Last year this time Matt and Chiara were in Tampa. I was at home addressing Christmas cards and watching back-to-back episodes of “Celebrity Rehab.” I was 24 weeks pregnant. I had just finished writing and posting “Survivor Mom,” my most-read blog post in the whole blog,* blithely anticipating the chaos that would ensue following the twins’ arrival.

*I get about a hit a day on this post. Judging by my stats info, it’s getting emailed around. 2nd and 3rd place go to the two posts following “Survivor Mom.” Worth mentioning is that in 4th place, very close behind, is the post on the “Michael & Wagner Kovac Christmas Gift Drive.”

Before they made the trip I called my doctor to make sure it would be OK for my husband to be so far away from me. The nurse laughed to reassure me.

“Don’t worry. You are not going to go into labor at 24 weeks. I mean, never say never, but the chances are so small that I can say it’s just not going to happen.”

She reminded me that my high-risk condition: monoamniotic/monochorionic twins had nothing to do with early labor. The only reason the boys would be born between 28 and 34 weeks—in other words, premature—would be to prevent cord entanglement. But I had absolutely no factors that put me at risk for early labor.

“If anything,” the nurse continued. “You’ll get more rest with your husband and two-year-old away.”
I did get more rest. I went to two holiday parties. I read some books. I started to sort through the six trash bags of baby clothes that folks from the ballet studio had given us.

I was sooooo tired. And sooooo huge. I was starting to feel the babies move, starting recognize one movement as the Red Baby and another as the Blue Baby. And I kept pushing away the thought that I was feeling very much the way I had felt in the weeks leading up to Chiara’s birth. But that was impossible. It had to be my imagination. After all, I was only five and a half months pregnant.

Michael and Wagner Kovac Christmas Gift Drive

2010-12-13T15:20:00.001-08:00

Little did I know it, but a year ago today I was about two weeks away from having very premature baby boys. I spent Christmas and New Years in the hospital and the boys were born the night before New Year’s Eve.

I’m grateful that Matt was able to stay with me in the hospital every night. I’m grateful that my brother and his girlfriend could stay with Chiara to make this happen. I’m grateful to the family and friends who visited, sent presents, made phone calls, and kept us in their prayers. I’m grateful that I got such fabulous care. And I’m grateful that as the twins approach their first birthday, that they are thriving.

Now it’s time for me to give back.

My niece and I have started a gift drive similar to the Loki Sky and Friends Gift Drive. Loki Sky and Friends gives gifts to new parents who will spend the holidays in the NICU. Our gift drive will benefit chemo patients at Grandpa’s hospital in Florida.

Here’s what we have planned:

For the patients: great tote bags from Bed, Bath & Beyond. Socks and a snuggly blanket—while supplies last!

For the families of patients and for the doctors and nurses who have provided such great care: A “Tower of Treats,” an assortment of goodies, probably from Target.

All that plus hand made cards from the kids in my niece’s neighborhood.

Wanna be a part of it? You can. Here’s how:

We’ve set up a registry at Bed, Bath & Beyond: http://www.bedbathandbeyond.com/regGiftRegistry.asp?wrn=-2092630138&

We’re “Michael & Wagner Kovac Christmas Gift Drive.” The tote bags will be mailed to Grandpa & Grandma. You can also send gift cards (BB&B or Target) to their address. Email me if you need the address.

It’s the best kind of Christmas giving! Fast, easy, inexpensive, and fits the need. We'd be so honored and grateful if you helped us help others.

Take care and take naps,

the East Bay Kovacs

Ten Bucks

2010-11-30T23:37:00.000-08:00

Now that December is here, it’s impossible for me to think about the holidays without remembering what we went through this year. Last year this time going into labor was the furthest thing from my mind. After all, I wasn’t due until April. But life is funny that way. Four days before Christmas I was admitted to the antepartum unit of our neighborhood hospital and stayed there until the twins were born nine days later—at 25 weeks’ 3 days’ gestation.

Talk about your life-changing experiences. How can you thank someone adequately for saving the lives of your children? And how can you help other Moms who haven’t been through the worst of it?

I don’t know either, but I’m trying to find out. I have become the parent liaison for our hospital’s Partnership Council and our hospital’s Family Advisory Council. From time to time I talk to parents in the NICU or moms in antepartum. Just to do what I can to help.

From time to time my husband still bakes cookies for the NICU nurses, even though the boys got out of the hospital seven months ago. On Thanksgiving he cooked a whole turkey along with gravy, potatoes, and asparagus, and for dessert, fresh pineapple. We brought it to the NICU and Matt carved the turkey for the nurses who were working that day. Just as a small way to say thank you.

I’m not the only one looking for a way to give back. In October of 2008, little Loki Sky was born at 24 weeks’ gestation and weighing 1 pound, 5 ounces. He spent his first Christmas in the NICU. In fact, he spent his first four months of life in the NICU. After he went home, his mother Kat became very involved with parent/hospital relations at our Alta Bates NICU (the role that I now have since Kat and Loki and Dad moved back to the Netherlands in August).

Kat knows what it’s like to spend the holidays in the hospital, so last year she started the Loki Sky and Friends Holiday Gift Drive. She raised over $1500 and put together gift baskets for families who were in the NICU over Christmas. (We just missed this party by a week as the boys were born on Dec 30th). You can read all about it here. And if you’d like to give, she’d love to have your donation. Kat is very organized. The site even takes PayPal!

Moms on hospital bed rest are scared, depressed, bored, and uncomfortable. And if they’re in there over Christmas, even when they try to make the best of it, they’re probably still scared, depressed, bored, and uncomfortable. I know; I’ve been there. If you’re a nurse working on Christmas, yes, you get the holiday pay, but it’s still a drag to work on Christmas.

This is why my twelve-year-old niece and I are starting our own gift drive. She and I won’t be together for Christmas; the twins can’t travel during flu season because of their delicate immune systems. It’s a bit tricky, but my niece and I have selected a hospital in Tampa (she will be spending Christmas with her family and my in-laws there in Florida).

My niece has complete creative control. She’ll buy presents for either: Moms on bed rest during Christmas or nurses working on Christmas day. Our gift drive doesn’t have a name (yet) and right now my niece only has one donor (me), so our budget is significantly less than $1500.

Today, just a month before their first birthday, the twins are happy and healthy and chubby. I know you’ve been following on the blog tracking our progress; you’ve shared the ups and felt the downs. Vicariously, our joys have been your joys; our victories have been your victories. Now let your thanks be part of our thanks. If you’d like to help us give back to the nurses who work during the holidays or help us give to the Moms who will have to spend Christmas in the hospital away from their families, we’d love to have your contributions. After all, you’ve supported us this far. Why stop now?

Drop me a line and I’ll tell you how.

Thanks for reading,
janine

Secrets of the Twin Mom

2010-11-21T00:32:00.001-08:00

Here’s a secret: I was so afraid that I wouldn’t be able to take care of twins that I actually dreaded the day they would be well enough to come home from the hospital. Terrified to the point of tears. But here’s another secret: twins are awesome. Nothing against the rest of you out there, but if you don’t have twins, you are missing out. And being a twin mom is just about the funnest thing I have ever done (next to performing in Piazza Barberini for Italian television or dancing at McKelligon canyon, but that’s a blog post for another day).

First of all, the bar is set really, really low for twin moms. Wearing two matching shoes? Ate breakfast before 2 p.m.? Bathed yourself and all three kids this week? You are an overachiever!

And twin moms who also have a preschooler are on the short list for sainthood. It’s awesome—because it’s much easier than it looks.

Actually, that’s misleading. It’s not that having twin babies and a three-year-old is so easy, it’s that motherhood—parenthood—is SO hard. On a transition scale, going from no kids to one kid is like going from zero to seventy. Going from one kid to three, however, is not as big a leap as people would think. It’s like a seventy-five.

But because everyone who has kids has at least one kid, (duh!) moms are expected to do all kinds of crazy things. They wake up for every feeding. They drop off and pick up their kids from daycare. They buy baby clothes and wash baby clothes and read bedtime stories. They rock their babies and sing them to sleep. They have jobs. And they do it all themselves.*

* OK OK OK! I KNOW there are Dads out there who step it up—who do dishes and fold clothes and make dinner and drop off at daycare and rock their babies and sing them to sleep. But they also have jobs. Two parents who work in tandem is a better deal than the responsibilities of the single parent, but it’s nothing compared to the help and support that is shown to twin moms (and dads).

It’s like Stone Soup. Maybe it’s just my selective Mommy Memory, but we are getting so much help, that having three kids is easier than when we had just Chiara.

For one, back then I was working thirty hours a week, going to school fulltime, and commuting back and forth to school. Matt was working 40+ hours a week and commuting 80 miles a day. Granted, that’s a lot, but it’s nothing out of the ordinary. What’s out of the ordinary is that now I am not working and Matt is working from home more so that he can be around for the morning shift and be here when Chiara gets home from daycare. What’s out of the ordinary is that my mom came and stayed with us for five months out of the last ten. So I never had to get up to do every feeding. On Wednesdays one of the moms at daycare picks up Chiara and brings her home. So we don’t have to do every drop off and pick up. On Saturdays, Matt takes the whole brood to Nutcracker rehearsal and one of the moms babysits. For free.

Speaking of free, aside from diapers and formula, to date we have purchased: one teether, one ball toy, six baby spoons, (thank you, IKEA) and two high chair trays. Everything else was given to us. Six bags of boys clothes, ages newborn to one year. Blankets, bibs, Stokke Tripp Trap high chairs (two), a crib, two carseats, two different double strollers, a Moby wrap, a second Ergo. Baby hats, crib sheets, bottles, you name it. Free stuff is awesome, absolutely. Also awesome is never having to take inventory of what we need and figure out how to get it. That’s a lot of saved time.

People open doors for the twin mom with a stroller. When was the last time someone did that for a single stroller? Neighbors we barely knew dropped off food because they knew we had twins. On my first flight with the boys, the pilot deplaned and carried on Wagner’s carseat himself. We were actually able to get special passes from TSA so that my family could escort us to the gate. Crazy – take one baby on a plane and you get a dirty look. Take on two and people buy you a drink because they think you could use it.

So we’ve gotten more help. We’ve gotten more free stuff. We’re cut more slack. All this helps us be more organized and efficient with our time. Which gives us more energy to give back to others. It’s crazy. We’ve actually hosted more playdates (read: babysat someone else’s kid) and sleepovers in the last six months than we have in the three years before that. (We have three babysit/playdates next week alone). And since we’re twin parents, we get even more credit!

As Matt likes to joke, “Set expectations low. Exceed expectations.” Well, let me tell you, expectations are set pretty low for the twin mom. The punch line is, because expectations are so low, people help you out. You exceed expectations, impress everybody, and actually have the time and energy to help them out. Amazing, this non-zero sum stuff.

Next up: why taking care of twin boys is easier than taking care of one Chiara, OR Dancing in Piazza Barberini.

Fan Appreciation Day

2010-11-17T23:44:00.000-08:00

It’s Nutcracker time. I danced my last Nutcracker in 1996, but my husband Matt is still performing. This is his sixteenth year dancing the Sugarplum Fairy cavalier for Pacific Ballet in Mountain View. He has known some of the ballet students since they were soldiers in the Battle Scene.

Every Saturday from September to December, my husband coaches the girls he will dance with. As an extra bonus for me, he takes our children with him. Our daughter Chiara has been attending Nutcracker rehearsals since she was seven months old. She loves it.

By the time she was a year and ten months, she was able to sit through two-hour dress rehearsals without incident. So I thought nothing of taking her to an actual performance to see Daddy dance.

As soon as she saw him jeté onstage at the beginning of the second act she yelled out, “Dadd-deeeeeeeeeeee!!!!!!!!!” Not in a “bravo” kind of voice, but with the voice you use to warn someone that they’re about to be hit by a bus. All the dancers onstage smiled a little wider. One of the candy canes suppressed a giggle.

When Matt exited into the wings, Chiara burst into tears.

“Where Daddy? Where Daddy?”

Poor thing. She must have thought that he fell off the face of the earth.

I explained: first there’s the Spanish variation, then Arabian, Chinese, Russian, Merlitons, Mother Ginger, Waltz of the Flowers, and then Daddy dances again.

After the last flower waltzed away, the lights lowered and the soft music of the Sugarplum Fairy pas de deux began to twinkle.

“Dadd-deeeeeeeeeeee!!!!!!!!!” Chiara yelled when she saw her father escort the Sugarplum onto the stage.

“Shhhhhh. . .” from the row behind us. It was the ushers. To us.

In my day, the ushers knew their place. They wouldn’t have dared to shush the guest artist’s entourage. In my day, the ushers could separate the insiders who don’t even need backstage passes from the bottom-feeders, the ticket-holding public. But we aren’t in Berlin anymore. And Matt is a great cavalier, but he isn’t much of a diva. He has actually purchased tickets for us. A ticket means that we enter from the front instead of the back. It means we are nobodies, Chiara and I, because no one knows that we are related to the star. That is, until she yelled it out for all to hear:

“Da-dddddddeeeeeee!!!!”

An usher hissed at us again.

Maybe he had a point. She was kind of loud.

I scooped my daughter up into my arms hastily exited the theatre. Wiggling with that toddler ninja move that makes them both slippery and brick-like, Chiara broke free and ran to the doors leading back into the theatre.

“Da-dddddddeeeeeee!!!!” She pounded her tiny fists on the door, doing her best Brando from Streetcar.

She was even more hysterical there in the foyer, so we went back in. Even in the dark I could feel the ushers’ steel glares. Would we be asked to leave? It is a kid’s ballet, after all.

Chiara stopped sobbing, but she continued to call out from time to time. On stage my husband gracefully promenaded his lovely partner. He was beaming. He’s dancing for his little girl. Why should we leave?

Every time Chiara called for him, Matt and the Sugarplum smiled a little broader, sharing this inside joke with everyone else in the theatre who had seen our daughter every Saturday sitting at the front of the rehearsal studio next to the mirrors, eating her morning snack and watching her Daddy dance.

Chiara is a fixture at these weekly rehearsals in Mountain View, but the real fixture is my husband. If you are a parent of a kid in this show, you know him. He entertained your daughter backstage when she was an angel in the prologue. He taught her how to do finger turns and supported lifts during pas de deux class. And if your kid is a boy, my husband taught him fart jokes. If you are remotely involved with your child’s pre-professional ballet career, you adore my husband. And you probably know Chiara as well.

So if a little girl crying for her daddy is ruining the show for you, maybe you should lighten up.

Which is more or less what I told those ushers.

A NICU Visit

2010-11-06T23:29:00.000-07:00

Today we had our six month follow up appointment with the NICU. Technically the boys are six months and two-thirds (adjusted) and they are right on track. They are transferring objects from one hand to another. Their fine motor skills (scoop and hold) are just what we should expect from 6 2/3 month olds. They can sit unassisted and rock back and forth on all fours. They are very social, almost too social to be able to do some of the testing (they paid attention to the doctor doing the testing instead of the test they were supposed to do).

Their one “fail” was that they don’t attend well to ambient noise. That means that if there’s a sudden noise, the boys don’t turn to see what it was. This isn’t uncommon in preemies, as they are used to tuning out noises that they don’t think are important. It’s something we’ve got to “work on.” (When we got home, Matt dropped a book behind the boys. They didn’t flinch. Then Michael burst into tears and cried for ten minutes. So I guess that’s good?)

OH - and Michael is CRAWLING. He's getting to be quite the fidgeter, too. I think I might have to look for a changing table with a five-point harness. Wagner just sits there, content to just play with whatever's in front of him. He'll sit there for an hour, while Michael (literally) crawls circles around him.

Here are some of the latest pics.

Wagner

Michael (& Matt & Chiara)

Wagner (& Chiara)

Michael

A Teachable Moment

2010-11-04T22:36:00.000-07:00

I’m walking the streets around our neighborhood looking for a woman and her dog. I want to reassure her that the scare she had the other day resulted in some invaluable life lessons for my daughter.

Chiara and I were walking with the boys in the bulky double stroller (the double snap-n-go; it’s like pushing a small fleet of shopping carts) and we came upon our neighbor and her dog. I don’t know where she lives, but I see her walking her dog all the time, a little black and white pixie dog. I usually see them on their evening walk when I’m putting out the garbage bins. The dog has this fancy collar that emits a blue light. Very handy in the dark.

We stop and talk and I point out the fancy collar to Chiara. We discuss its uses.

“When it’s nighttime, the collar shines a light and then his mama can see where her dog is.” (I might have called it a “doggy.”)

The owner and I make jokes about the day the twins will be running around and I might need a similar kind of collar for them. We smile and nod see-you-later. My entourage and I turn to left; the owner and her dog keep walking straight ahead.

Halfway down the block, Chiara gets mad about something or other. It doesn’t matter what; something that’s fueled by her empty stomach, in spite of the almonds we brought along to stave off the tantrums. She stomps her foot and takes off running.

Takes off running.

I am 100% sure that she is going to wait for me at the corner. She turns the corner, still running.

Oh no, you didn’t.

I know that even if I could leave the boys and run after her, that would be a mistake. I have to call her bluff and wait for her to come back to me. She’s on the short side of the block right now, the width, not the length. There are no driveways on this part of the block, so I can let her run and still know that she is safe.

I wheel the twins to the corner and stop with my hands on my hips. She is still stomping away. When she sees that I am following her, she turns to me, shakes her fists in the air (this was actually kind of funny) and turns and runs again.

I am 75% sure that she is going to wait for me at the next corner. I am wrong.

Why, you little . . .

Now she is running down the length of the block. I’m hoping to follow as closely as possible without being seen. She stops from time to time to look for me. Then I make a tactical error—I inch forward just enough so that when she turns around, she sees me. She shakes her fists at me some more and takes off running again. Now my heart drops.

Oh my God.

I am 50% certain that she will not try to cross the street by herself, which is to say that I have no idea what she’s going to do next.

The streets in our neighborhood (and this street in particular) are very narrow with speed bumps every 30 feet. We are close to the BART station (subway). It’s the hour before dinner. In other words, this is the time when commuters are walking home from BART, walking to Market Hall, walking their dogs, their strollers. Little people are crossing the street to their ballet class. Big people are trying to fit in a run before dinner. Pedestrians are legion at this hour and the cars creep by to let the walkers have the run of the road. This is probably the safest time of day for a runaway preschooler. I just don’t know where my preschooler is going run.

When I was eight weeks pregnant with Chiara, I thought we were going to lose the baby. I had cramps; there was bleeding. Matt and I were headed on an overseas trip and we stayed up all night worrying about what might happen.

So this is parenthood, I remember thinking. Worrying about another human, knowing that there’s only so much you can do. Trying to find faith and hope in what you can’t control. I’d better get used to this feeling, I thought, because this is my new life.

And so here I am again, worrying about another human, knowing that there’s only so much I can do. I am watching my daughter challenge my authority; she is flaunting her independence in the big wide world of a single city block. From my vantage point, both literally and metaphorically, I can see the world beyond, the other blocks, other possibilities, other dangers. This is my new life: dancing the balance between keeping my daughter safe and close and letting her run free even if it means she falls.

Before Chiara gets to the end of the block, a neighbor I do not know sees her, tries to stop her and ask her where her mommy is. Chiara backs away from the stranger. I’m relieved because it slows her down so I can catch up. Chiara turns the corner AGAIN, but this time the neighbor is keeping an eye on her to make sure she doesn’t run into the street.

The neighbor and I talk. She assumes that Chiara is acting out because of the twins. Chiara is walking very slowly now, watching me, pacing on the sidewalk in front of the corner house. The neighbor and I are on the side of the corner house. We are separated from just enough bushes for Chiara to feel like she’s far away and for me to feel like she’s close.

And then it happens. The woman and her dog are coming back from their walk. The little dog has scampered ahead, very fast. And into the street. A car comes. The woman screams. There are a handful of witnesses in various stages of walking, running, commuting, and chasing children. We all freeze. For a moment I think that Chiara, at the tender age of three, is going to see something that I myself, have never seen.

I try to anticipate what she will see. Will the dog be thrown into the street? Will there be blood?

The car slams on its brakes and the little dog scuttles to safety. The woman runs after her dog. Chiara runs back to me. As fast as she can.

“Mama, Mama! I was so scared!”

Good.

Me, too. I tell her. We talk about what happened to the dog who ran away from his Mama. We talk about fear and trust and how next time that Mama will probably put a leash on her dog. It transitions nicely into a discussion of how I was a scared Mama, too. What I might do next time.

Matt joins us a few minutes later, an opportunity to retell the story.

It is suggested that maybe Chiara shouldn’t be allowed to spend the night at her friend’s house tomorrow night. What if she runs away from her friend’s Mama? How do we know she will stay close so the Mama knows she’s safe?

Nooooooooooooooo! Chiara begs us. She points out that she did not try to cross the street by herself.

We decide to give her a second chance: we will walk to the market and back and Chiara will show us how she can stay close.

“I will walk right behind you the whole time!” she promises.

You'd better.

That’s what supposed to happen. You watch your kids; you teach your kids; you give them the tools to stay safe; you hope they use them. And then you let life happen. I can’t shelter her; I can’t keep her on a leash. I can only prepare her, support her, and dance the balance.

As she pouted and pitter-pattered around the block, several ideas had crossed my mind—from yelling at her to running after her to giving her the beating of a lifetime. I had to keep reminding myself: I know my neighborhood. It’s safe. I know my kid. She’s not going to do anything dangerous. Running after her is not the way to teach her to stay close. Rationally, letting her run was the right thing to do. And yet, it felt like a gamble. An irresponsible gamble on my part.

Today Chiara and I talked about the event. She calls it, “When I got lost.” She said she dreamt about it last night—she’d run away from me, run toward me, run away from me, toward me. Over and over. How’s that for metaphorical?

I’m so happy with how everything unfolded. Chiara tested the waters, misbehaved and in the end, redeemed herself. And best of all, she saw firsthand the real reason you stay close to your Mama—because it’s safe. (On second thought, best of all is probably the fact that the doggy made it safely across the street).

I’m so happy, too. Because I don’t know what I would have done if she had tried to cross the street. I don’t know what I would have done if I had gambled and lost.

A Prayer for M & M

2010-11-01T22:59:00.000-07:00

A Prayer for M & M

I know they must wake up each morning with their questions
I pray that their questions become their quest
That the quest opens their eyes to new possibilities and new assurances

I pray that from this comes new encouragement and strengthened resolve

I pray that they bask in the love that is sent from all over,
from our hearts and minds through our keyboards and cell phones

This is what we share together
This is what we own
This is what we give to others

And in turn, this love feeds back into the quest—for each of us

Like sunshine
Or a dancing tree

Prompting us to connect
Inspiring us to nourish our souls
Encouraging us to have faith in our faith
Embracing the whole enchilada

And again, feeding back into the cycle of loving and living and learning

Amen

Stevie the Wonder Preemie

2010-10-29T16:39:00.001-07:00

Stevie the Wonder Preemie

Maybe it’s because by the time I came on the scene Stevie Wonder was singing dopey duets with Paul McCartney. I just couldn’t take him seriously. (My dad and I used to sing, “I just called . . . to say . . . you smell bad.” We thought we were so clever). Stevie Wonder was like fingernails on the chalkboard. I hated Stevie Wonder. What was all the fuss about?*

* Except for “Superstition.” That was always a pretty rockin’ song.

But all that changed in January.

Stevie Wonder was a preemie. And my boys owe their sight, in part, to Stevie’s blindness.

It’s a condition called ROP—Retinopathy of Prematurity. It happens because oxygen, like everything in excess, is a poison. In the early days of keeping preemies alive, they were given higher levels of oxygen in their incubators, the rationale being that more is better. Room air typically is only about 21% O2. These preemies were getting 70% or even 100%. The long story involves stuff about vascularization. The short story is that preemie’s eyes aren’t fully developed and too much O2 blows out their blood vessels, resulting in blindness.

These days, oxygen levels are very closely regulated and at-risk preemies are checked regularly for signs of ROP. There’s more stuff about stages and regular checkups (the twins had three such checkups in their first three months) and if necessary, there are interventions—the most invasive of which is eye surgery.

Bottom line is, everything we know about growing healthy preemies is learned from the mistakes of preemies past. In the field of neonatology the guinea pigs are the preemies themselves. Each generation stands on the shoulders of the previous ones. When Little Stevie Wonder was in his little greenhouse, the goal was to keep ‘em alive and keep ‘em breathing; his blindness was a small price to pay for life itself.

As soon as I found out that Stevie Wonder was a preemie, my attitude toward his music changed. I think of Stevie’s mom, biting her lip and praying for her tiny son who is fighting for his breath. I want to hug her.

“You can’t imagine how great things are going to get,” I want to tell her. “Your son is going to do amazing things. He will inspire generations of musicians. People will drink his music like honey. His contribution to music will pale in comparison to his contribution to science. He will help advance the field of neonatology simply by his existence.”

Thanks, Stevie. Thanks, Mrs. Wonder. You guys rock.

Write Your Thank-You Notes

2010-10-28T11:49:00.000-07:00

I’m writing something for the new NICU website and I’m stuck, so I thought I’d use this forum to muse.

The purpose of the new NICU website is to have loads of resources for parents. I have been very vocal in support of a “How to Take Care of Yourself” section, and it’s now one of eight main sections on the site. Since it was my suggestion, it falls to me to write a rough draft of what I think should be on it.

It’s an interesting exercise in offering tips without preaching. I’d like to tell parents that it’s very important to thank every nurse they see, everyday, but of course, I can’t. Or if I can, it must be said verrrrry diplomatically.

I was going to spend this post talking about the illusion folks have about causality. I call it Domino Causation: one event causes another to happen. This false illusion leads to the false assumption that big actions make big results and therefore big actions are more worthwhile. Big actions are like islands. They carry no momentum. Little actions are ripples. I want to call them “seedlings of tidal waves” (how’s that for mixing metaphors).

Going back to the gratitude attitude. On the third day of our NICU stay, total strangers were telling me how great my Aunt Rita was. Now I knew this already, but I didn’t know how they knew it, too. It turns out that Aunt Rita (everyone needs an Aunt Rita, by the way) had sent the nurses a huge edible fruit arrangement and note thanking them for the care they were providing to her nephews.*

*It was gone within about a half an hour. Except for the kale. Apparently even healthcare providers won’t eat kale. Even in Berkeley.

I was floored. “You can do that?” I thought, “Send nurses thank-yous? But isn’t this just their job?”**

**Something else you can do that Aunt Rita taught us: send a birth announcement to the President. I did this and got a hand-addressed card from the White House

This little gesture changed the tone of our stay at the NICU. For one, it meant that everyone knew us right away. They knew of us—25 week old twins aren’t really the norm in the NICU, and Rita’s gift helped match our faces to the twins’ isolettes. It also gave the nurses (right or wrong) a first impression of us: we were the kind of family that was happy and grateful and appreciative. Which meant that we had to act happy and grateful and appreciative. There were times when I wanted to be snippy and dismissive, and truthfully, the nurses expect the parents to be snippy and dismissive. But since the nurses all knew us and smiled at us and called us by name and expected us to treat them like humans, it made me be a nicer person. It’s hard to be a bitch to someone who’s unguarded and smiling at you. So then they were nicer to us, which made us that much more grateful and appreciative that such nice people were giving our boys such expert care. After all, it was their work that kept our boys alive. And that made us happy.

(I think we were also extra nice because Rita’s gift became a reflection of us, even though we didn’t give it and so by that token, we wanted our behavior to be a reflection of her, since the nurses would never meet her).

Being happy helped us relax while we there. Because the nurses felt compelled to thank us for Rita’s Thank You, we learned their names and faces and backstories. Knowing all the nurses by name helped us acclimate faster. Being happy made us seem more approachable. Nurses were more inclined to introduce us to new, scared families because we seemed happy, we were approachable, and the nurses knew who we were. Meeting other families helped put our minds at ease in small ways, gave us new NICU friends and contacts. Which made us more relaxed, more approachable, more inclined to introduce ourselves to new families, all of which made us more grateful to the nurses.

Rita’s gift also setting a giving precedent; we had to keep thanking the NICU staff. We gave them fudge (well, to be fair, Matt’s dad bought the fudge; we just handed it out). We wrote notes. Matt baked batches and batches of chocolate chip cookies. After the twins went home we sent birth announcements to each of our main nurses (ten of them) and attending doctor and respiratory therapist and lactation consultant and social worker.

I’m confident that we would have gotten the same great care regardless of our gratitude attitude, but it was our attitude that helped us make NICU life a rewarding experience.

What a Wonderful World

2010-10-11T20:06:00.001-07:00

And I Think to Myself, What a Wonderful World

I see trees of green, red roses too
I see them bloom for me and you
And I think to myself what a wonderful world.

I’ve heard Louis Armstrong’s “What a Wonderful World” a million times. But there are three occasions that stand out in my memory.

The first was in Venice. It was September 25, 1994. I was living in Rovigo at the time and we took the train there. We had forgotten to change the clocks to standard time from daylight savings; we didn’t even realize until we got to the train station. I had never been to Venice before. This is pre EU—another world, another time. Hardly anyone had a cell phone. No one had an email address. Pre-EU meant that all the merchants were Italian, if not Venetian. (I went back a couple of years ago and was supremely disappointed. It was like a dirty Disneyland. All of the vendors were immigrants from somewhere else. Venice was just another rung in the their labor ladder)

As you probably know, there are no cars in Venice. It is a labyrinth of canals and bridges and alleys. In winter when the fog sets in, it’s like trying to navigate through a fairytale. This trip I watched movers lift a piano through a window from a boat in a tiny vein of water. Around another corner we saw workers laying high fiber optic cables. In Venice.

I didn’t know where we were headed; we couldn’t even see the water from our path. But my friend knew. All of a sudden I turned the corner and there it was: Piazza San Marco. I lost my breath. My senses were inundated simultaneously with the ancient and the contemporary: in the distance, the Byzantine water architecture of San Marco. In my ear, a tuxedoed jazz quartet played Louis Armstrong’s “What a Wonderful World.” Shops and cafés lined the shores of a sea of pigeons. It was so unexpectedly beautiful that I actually cried.

This single scene was like a montage through the centuries. This was the Venice of Marco Polo, of Casanova, of Othello’s sweet Desdemona. And yes, of Louis Armstrong.

I see skies of blue and clouds of white
The bright blessed day, the dark sacred night
And I think to myself what a wonderful world.

Flash forward to November 16, 2002, St Paul, MN. My brother is getting married. As all wedding are, the reception is a perfect reflection of the bride and groom. We’re at the Landmark Center, the old courthouse building with impossibly high ceilings, almost as high as the young couple’s aspirations. The lights are dimmed and the tables are sprinkled with purples and oranges and chile peppers.

The couple is baby-faced and fresh out of law school. Their first jobs—clerking for the State Supreme court and the Federal district court—might be the pinnacle of success for other mortals, but for them is merely a good start.

They take their first dance as husband and wife, sweeping over the ballroom floor as Louis Armstrong croaks. They are beaming and dreaming and thinking to themselves, “What a wonderful world.”

The colors of the rainbow so pretty in the sky
Are also on the faces of people going by
I see friends shaking hands saying how do you do
They're really saying I love you.

On January 5, 2010, I walked into the hospital lobby and heard it again. It must have been a Wednesday because that’s when the harpist comes and plays for the patients. It must have been that Wednesday because I was discharged on Monday and the boys weren’t back up to their birth weights yet.

Have you ever really listened to harp music? It’s like listening to water sing. The instrument itself is so heavy, so burdensome, like a murder weapon. Its notes resonate sometimes like thick gold mud, other times like dewy droplets on a spider’s web. Harp music carries you. It cradles you.

I remember the opening of Waltz of the Flowers with Mr. Gibson conducting and Mrs. Gibson playing the harp. The opening is all harp music. The harpist takes her time and chooses her tempos and the twelve of us must all listen very carefully. We must obey her timing. It’s the best part of the dance: glowing, full of life. You haven’t made any mistakes yet. You are a flower’s life reincarnated. The harpist carries you to the beginning of the dance and leaves you to dance your six-minute flower’s life.

At some other point in time, I would have loved to have sat and listened, really listened, to these golden notes, to the volunteer harpist playing “What a Wonderful World” in the hospital lobby. I would have teared up with two-dimensional sentimentalism. Happy to be happy. Grateful for her musical offering.

I feel so strongly about how classical music transforms our lives. I am so sad when people rush by, hardly taking note of how the heavy harp has drenched the air with music.

It truly is a wonderful world, even on this, the first Wednesday morning of the twins’ lives. I can appreciate that. I am up and about. After nearly two weeks in bed and a c-section just a week ago and I am already climbing flights of stairs. But today, if I stay to listen, I will lose it. I will explode into hysterics and they will have to peel parts of my flesh off the ceiling.

This would have been a good time to let harp music cradle me. I could use a hug. I bite my lip so hard, so hard, so hard. I am locking all my tears in my jaw. Trying not to cry is like putting on a sweater made out of pins and needles.

I hear babies crying, I watch them grow
They'll learn much more than I'll never know
And I think to myself what a wonderful world
Yes I think to myself what a wonderful world.

All I can do is run to the elevator. I bang on the ‘up’ button and try to escape as quickly as possible.

Let Them Fall

2010-10-08T14:11:00.000-07:00

Today I am happy because I let my kid fall. Both boys are rolling, but Wagner’s the one for whom rolling has become a mode of transportation. Toy out of reach? He knows he can roll toward it. Brother’s foot smacking him in the face? He knows he can roll away from it. Tired of being on the blanket on the floor? He knows he can roll off of it onto greener pastures. He reminds me of that meatball that rolls out the front door.

But sometimes it isn’t greener on the other side of the blanket. Sometimes it’s hardwood. The first time he rolled, at breakneck baby speed, off the blanket (toward a particularly angular object, to boot), my foot jutted out to cushion the blow. But the next time he rolled off the blanket, I just watched. And, as one would expect, he smacked his head on the floor and cried very hard.*

* I actually did not expect this. Chiara was (is) famous for smacking her noggin loud and proud and not noticing. So I thought that was just something my offspring can do: hit their heads and not notice. I was wrong.

But then an amazing thing happened. He learned how to protect himself. He doesn’t do it when he’s rolling on the bed or on the blanket, but when he’s rolling on the hardwood floor, Wagner rolls at normal speed onto his side, stops himself precariously balanced on his baby fat, and then rolls veeeeeeeeeeeeereeeeeeey slowly—he even squeezes his eyes shut—onto his back so that he doesn’t hit his head. Not bad for not quite six months (adjusted, of course, chronologically he’s nine months).

It’s amazing to watch. Even better, it’s intentional. This morning I watched Wagner roll to the left from back to tummy and then back to the right from back to his tummy over and over and over for about fifteen minutes. Each time he stopped himself just before his head was going to bang on the floor and eased himself down. And then he giggled hysterically.

The urge to protect our children is primal (and that’s good) but sometimes we take it too far and in preventing them for getting hurt, we actually keep them from learning.

And we keep ourselves from learning, too. Today my child taught me that he knows a little something about cause and effect and intentional action. He demonstrated that he knows he can control his destiny. Today—rolling! Tomorrow—Harvard!**

I can’t wait to let him fall again tomorrow.

** I’m still a little chaffed about this so I will remind everyone that one of the first doctors we saw when we found out we were pregnant with mono-mono twins insinuated that preemies born before twenty-seven weeks would likely be retarded. Twenty-seven weeks was, in her estimation, the cut-off point to expect that the preemie might be smart enough to get into Harvard. (Leaving no lee-way between genius and irretrievably stupid) Our boys were born at twenty-five weeks, which puts them in the “wool-cap-delivering-for-the-florist” category”*** I know I’m supposed to be in this gratitude phase, but I still have it out for this doctor.

*** name the movie. I’ll give you hints if you want them

Giving Back

2010-10-06T15:17:00.001-07:00

Giving Back

A long time ago, just a few days before my eighteenth birthday, I had a really bad day. A terrible day. The kind of day that makes you take a break from dancing and makes others suggest therapy for you. The kind of day you still think about twenty years later.

Some tough months followed that bad day, filled with nightmares and stiff upper lips and when nobody was looking, I screamed at little spiders. The only advice to which I was amenable was that from my guardian angel; she was the only person who could make me feel better. That guardian angel was me at some impossibly old age—like thirty. The old me would comfort the distressed me with fantastic stories of how good things were going to get one day. Just you wait and see.

The years passed and the screams faded until one day I thought about the distressed me and decided to pay her a visit. I could see her so clearly, surrounded by eggshells and much shorter than she thought she was. I told her how great things were going to get: how beautiful Iceland was and how tall she’d feel.

In the years that followed, I’d go back from time to time and “pay the bank,” as it were. Italy, San Francisco, a beautiful wedding by the bay. There were lots of good things to look forward to. Then one day it seemed like the little girl was now the Iceland girl and didn’t need me anymore.

And then yesterday, my jaw dropped and my shoulders sank and I wept.

Not for the teenager—she’s fine now. I wept for the mother of three and her stiff upper lip. I wept for all the things that didn’t happen but could have. Autumn 2010 is weeping for Winter 2010.

January, February, March. I couldn’t cry then. There was too much to do. If I had let myself think for a second about the odds, it would have crippled me.

Ninety-two days of dodging bullets.

Yesterday the nurses and I were discussing one of the bitter moms.

“She’s grieving for her pregnancy,” one of them observes and we all nod, as if pregnancy is a living thing that is separate from Mom and Baby.

The funny thing is, she had a pregnancy. And she had a healthy (albeit tiny and premature) little girl. Everything is fine now. Her pregnancy did what it was supposed to do. But her grief is real. All grief is real.

Who am I grieving for? My boys are so healthy, so chubby. They are off the charts—literally. We don’t even think of them as six-months (their adjusted age). They are actually doing things that nine-month-olds do—their actual age.

It’s like I put my composure on lay-away with one of those “take it home today—pay later” plans that they have for mattresses. I took home heap-big composure and now yesterday was my first sadness installment.

I can visit all the islands of “What If.” I can take on all the fear and worry and hysteria from those ninety-two days because I know how the story ends. And since it’s a happy one, I can flatten the dimensions of time and space and lend today’s optimism, confidence, and composure to that short little mom in the NICU, the Me of early 2010, ‘cause she could sure use it. And I’m her only hope.

© 2010 Janine Kovac

The New NICU Days

2010-10-05T17:12:00.001-07:00

I’m a little shell-shocked right now. I’ve just come from the NICU, from a meeting of the “Partnership Council,” a non-descript name for a group of medical staff and the occasional parent (me) that makes decisions on all NICU matters aside from specific medical decisions and union issues. It’s a big deal. They’re even getting a badge for me.

I hardly recognize the inside of the hospital’s front entry. I know that I’m in the right place only because I know the front desk security guard. There are walls where there used to be open space and huge shiny bronze-y colored pillars where there used to be walls. They are remodeling. It’ll take another two years.

Looking at the huge pillars, a cynical “so that’s where my two million dollars went”* comes and goes through my brain before I can stop it.

* that was the total hospital bill for both boys, but that’s not what the insurance paid. Their negotiated share was less than 10%. I still can’t believe that there’s an actual debate about reforming health insurance. But that’s a post for another day.

Is it right for a hospital to look so flashy?

That’s another thought to squash. After decades of mistrusting hospitals and doubting doctors, eschewing them for yoga and leafy vegetables, I am on the other side now. My boys owe their lives to this hospital, these doctors, and the miracles of expensive western medicine. I am one of them, now. Out of solidarity and loyalty, I must love these pillars.

I greet the rest of the security guards by name. The 4^th floor guard, the NICU guard, the one in the elevator coming back from her break.

Today the council is discussing the new discharge pamphlet (which happens to feature a picture of the twins—our twins—on the cover). We discuss the wording, what changes need to be made to the Mandarin and Spanish versions, who still needs to sign-off (I’ve already given my seal of approval), when they’ll go to the printer’s.

At the meeting I know everyone except one nurse. They all know me.

Then we discuss the new NICU website that is in the process of being revamped. I am in charge of taking notes for the group. The photos of moms and babies on the new site are actual former patients. I know all of them. They all know me.

We discuss possibilities, menu navigations, submenu items, the ordering of such items. For instance, we all agree that “Birth Defects” shouldn’t be the first item under “About Your Premature Infant.”

Then we get to the section of the site that discusses medical conditions: RDS, ROP, PDA, NEC, PHV, all acronyms with which I am already familiar. The acronyms are misleading. They look so benign when reduced to three letters, but they are anything but. RDS is a dangerous respiratory virus (the boys will get 12 immunizations apiece over the next two years to protect them against this virus). ROP refers to the arteries of the eyes that get blown out from too much oxygen (this is why Stevie Wonder, another NICU grad, is blind, btw). PDA is the heart valve surgery that both boys underwent. NEC refers to the condition of an underdeveloped digestive system. Last week a woman stopped me in the street to tell me about her twins (now twelve years old) who were born at 30 weeks. The girl was fine ,but her boy had NEC.

I feel my heart in my throat. I am remembering.

Now I know why so many intelligent, grateful, generous NICU moms refuse to be a part of the partnership council.

At one point I give my opinion: “We need the ‘what to expect’ section to reflect some of the things that parents can actually do while they’re in the nursery,” I gesture toward the website projected on the wall. “All the things I did when I was here, every day for so many days—none of that is reflected in what we’ve seen so far.”

I see nodding. A note is made. I get “volun-told.”* I am now in charge of this section of the site.

* new term coined by one of the nurse’s teenagers. It means volunteering for something that you are told to do.

We get to the statistics. For 23 weeks. 24 weeks. 25 weeks. 40% of babies born at 25 weeks have notable cognitive delays and physical disabilities that are detectable at age nineteen. For now we will use the national statistics although Alta Bates’ numbers are better than the national average.

I am choking on my heart. I don’t feel like one of them anymore. I feel like a mom suddenly realizing that if this were Vegas, she would have walked away from the tables rather than play.

After the meeting I go to the NICU to “make my rounds.” I’m looking for one mom in particular. (“Tread lightly,” I am advised.) The last time I talked to this mother she hung up on me. She’s in her son’s room. I know her nurse; the nurse knows me.

The mom has just finished pumping. She vaguely remembers talking to me. Details about my kids round out my profile. She remembers everything about them. The three-year old, the twenty-five week twins. She’s very “with-it” today. Makeup, nice clothes, strong voice. Her baby’s going to be fine, she says.

She’s right. Her baby looked great, over five pounds I resist the urge to evaluate him by his numbers on the monitor.

I congratulate her.

“He looks so peaceful,” I offer. I don’t know why, but I want to cry for her.

She thinks I should talk to the mom in Room 14. That mom has a baby like mine. It sounds like a dismissal. We don’t shake hands (unspoken NICU rules) but I do squeeze her arm when I leave.

I don’t go to Room 14. Not today.

© 2010 Janine Kovac

Testimony for "The Binder of Hope"

2010-09-23T23:11:00.000-07:00

At our NICU, we have a "Binder of Hope." This is collection of testimonies from various NICU parents. It's meant to give new NICU parents an idea of what NICU life is like.

This is our contribution:

My mono-chorionic/mono-amniotic twins were born on December 30, 2009 at just twenty-five weeks, three days’ gestation. Michael George weighed in at 1 lb, 12 ounces and his younger brother, Wagner Lee, weighed 1 lb, 9 ounces. Both were just over a foot long—the size of kittens, not babies. They were in the NICU for three months. Now they are eight months old, (or five months adjusted) and weigh over seventeen pounds. They are in the ninety-fifth percentile for babies born at their gestational age.

On New Year’s Eve, still tethered to my IV, I shuffled into the NICU for the first time. The front desk was a collage of Christmas cards, all photos of Preemies Past at different ages. Some were toddlers, some were first-graders, some were twelve-year-olds. All were NICU grads. That’s when it hit me—the NICU nursery is a place where babies go to get well. After that they go home where they learn to do baby things like crawl and toddle and learn to do kid things like become ballerinas and boy scouts.

Being a NICU parent is like parenting on steroids. Parents “on the outside” can live their entire parenting careers deluding themselves that they have some semblance of control over their children. NICU parents know better; they are reminded daily that there is no control to be had. Children go and grow at their own rate. The most we can do as parents is guide their progress. We can’t control when our children crawl or read or get married. All we can do is facilitate crawling or reading or fostering healthy relationships and the worst we can do is hamper progress. By the same token, there is no control to be had as to when a baby will be ready to go from SiPAP to CPAP, when he will tolerate his feeds or be stable enough to go home. The most I could do as a mom was visit, change diapers, hold the twins, tell them I love them, and pump, pump, pump. Oh, and make sure that I was fed and rested so that I could come back the next day to do it all over again.

Every day for three months, I visited my sons in the NICU. I’d change their diapers and take their temperature and move the pulse-ox sensor from ankle to wrist and back again. I pumped every three hours (or tried to). When the twins were stable enough, I held them skin-to-skin. I told my boys about the sister who was waiting at home, the daddy who was at work and would visit them later tonight, the grandma who was cooking our meals, and about the doctors and nurses who were taking care of them every second that they were in the nursery.

I didn’t realize until much later—after the twins were home doing normal baby things like nursing and cooing and grabbing earrings—how much parenting I did in the early days, and what all those diaper changes taught me about my babies. I knew which cries were grumpy cries and which ones were hungry cries. I knew how to soothe them (I still use compassionate touch techniques on them when they are fussy). I knew them as individual people, tiny heroes who had been through more in the first ninety days of life than I had in forty years and who taught me that patience is a skill to practice, not a thing to have or lose.

This year our Christmas card will join the deluge of holiday cards at the front desk: a family portrait of me, dad, the sister, the grandma, and the twins who are so chubby, that strangers at the supermarket call them “bruisers.” Hopefully our story will be a testament to what teamwork between families, doctors, nurses, lactation consultants, social workers, respiratory therapists, physical therapists, occupational therapists, x-ray technicians, pharmacists, and admin staff can accomplish, a call to hope for the next generation of moms and dads and grandparents who tiptoe into the nursery to visit their own beautiful tiny heroes.

And the pictures we included:

Michael

Matt & Michael

Me & Wagner

Wagner

Michael & Wagner

Wagner & Michael

Think Small

2010-09-09T22:53:00.001-07:00

Think Small

WOW! What a great time we had in Fresno, Santa Monica, St Paul, COR, Chicago, and back home.

Lots of news and I promise to post more regularly. (I started a second blog, too, a blog-off with my cousin—well, Matt’s cousin—100 posts in 100 days, as a way to get to read more of his stuff and to write more of my own).

Boys are doing great, rolling over, stuffing toys into their mouths. Chiara is just a little grown-up all of a sudden and has started calling me, “Mother,” instead of “Mama.” Tonight at the dinner table she offered to babysit the boys if Matt and I needed some “alone time together.” Matt—working like crazy and fitting in sleep here and there.

Me? Well, I’m busy. Not just with the twins, but writing about the twins. This summer I’ve been trying to put these blog posts into a book. What the book has that the blog doesn’t are the “secrets” that Matt and I used to “hope and cope” during the short pregnancy and the NICU months. Much of the secrets were found in borrowed from positive psychology research, some were divined through cognitive linguistic analysis, which is so much more fun than it sounds. It’s sort of a “David Eggers meets Gödel Escher Bach.” Well, not really. I don’t know what I’m calling it yet, but now I’m working on the book proposal and I’m hoping that posting for all to see that I’m working on the book proposal will help me to continue working on the book proposal.

Back in May I wrote a sort of mini-proposal and sent it to a fancy New York literary agent who expressed a hint of interest at my cover letter and then rejected the project. I got the agent’s name from my professor and thesis advisor, who liked some of my sample chapters. He liked them so much that he gave me the name of a second literary agent, this time somebody local: Andy Ross. Mr. Ross has a website with a section on how he’d like to see your book proposal. In fact, he suggests following the advice of fellow Bay Area literary agent, Michael Larsen who wrote the book—get this—How to Write a Book Proposal.

So I got the book. And I was surprised. It’s quite helpful. You see, if you want to buy something: a work of art or a pair of pants, you can know whether or not you want the item just by looking. But a book—to read a book is to know whether or not you want to have read this book. And nobody has time for that. So the book proposal is a shorthand way to show what your book is about without actually having to read it.

Reading this book proposal book has brought something else to my attention: the reason you write a [non-fiction] book is to inform others. I’m really not writing this book for myself. That was the blog. I’m writing the book for everyone out there who has had something bad happen to them. I want them to know that surviving a trauma is easier than it looks. And since I’m writing this book for other people, I want my message to be as clear as possible. And I want as many people as possible to know that this resource (my book) is out there. Writing this book proposal (or rather, reading about writing this book proposal) is helping me clarify my message.

It’s a little bit daunting. I was hoping I could just write a manuscript and then say, “Hey, look at this book I wrote.” But apparently that’s not how it works. So I decided to “think small.” Bit by bit. Piece by piece. Small things add up. I’ve been trying to write two hours a day since the twins came home and now I’ve got about 200 pages. Think small.

Next up: Chapter One -- My Subject Hook

Three Months Old

2010-07-14T00:44:00.000-07:00

The boys are now three months old adjusted* (today, July 11^th). They are HUGE. Weighing in at 13 pounds 6 ounces, Michael is seven times his birth weight. Wagner weighs 13 pounds, or eight times his birth weight. They are both 24 inches, or twice as long as they were the day they were born (six and a half months ago). They are doing great. And we’re still doing a lot of work to make sure it stays that way.

We see the pediatrician once a month (she took the babies off of preemie formula and gave us the green light to travel—C-O-R here we come!), a county nurse makes monthly home visits (she thinks that Michael is babbling on a six month level**) and every Tuesday we have an Infant Development playgroup organized by the NICU (which the twins have slept through 6 out of 8 weeks).

One week there’s the physical therapist. Another week there’s a speech therapist. Week 3 is mediated by specialist who helps organize play and I can’t remember what happens in Week 4 because I had to take Chiara to her first ballet class. (She enjoys it, but she’s much more excited about the “Princess Ballet Workshop” that starts tomorrow because the dancers learn tap. And they get snacks).

Then the cycle starts again: physical therapy, speech therapy, play therapy and mystery therapy. The twins will go for a full year. It’s really a way to facilitate their development and catch the snags before they turn into delays.

I know what you’re thinking, speech therapy for an infant? At this age, speech therapy consists of listening for “social sounds” in their noises and looking at their breathing patterns. The boys are doing just great—Michael is a little conversationalist—but if they weren’t, we’d get some clues from how they breathe and then do some exercises to help them breathe better.

Our big thing to work on now is grabbing toys, but the twins don’t really care about that. They are far more interested in faces, particularly Mama’s, Daddy’s and Chiara’s. They are transfixed by Chiara’s face.

And why shouldn’t they be?

She shows them her princess collection. (Inspired by Cousin Maria’s princess collection. Also inspired by Cousin Maria—sleeping in underwear instead of pull-ups and sleeping without a shirt on.)

She shows them photographs. (“This is me with my Mommy and Daddy.”)

She reads them books and makes up stories. (“This is the story of when Pooh Bear died.”)***

She gives them advice. (“Don’t worry. You aren’t going to die for a really long time.”)

She helps with baths. She picks out their clothes. She puts IKEA bowls on their heads.

For awhile every time one of the twins would cry, she’d come running, “Mama! Mama! They’re starving! My brudders are starving!”

Another time we had them in their respective rockers and every time one would make a noise, Chiara would get up from her chair at the table and pull the electronic dangly toy that sings “If You’re Happy and You Know It” in Chinese tones. Each time she’d run to the rocker, pull the toy and run back to her chair just in time to hear the other twin whimper. After running back and forth several times, she finally exclaimed, “I’m doing all the work around here!”

And she LOVES to help with the diaper change. It gives her an excuse to check out all the bits and pieces that she doesn’t have in her own underpants ([giggle] “It looks like a chicken!”)

But the best was the other day—both boys were LYING (that one’s for you, Mom!) on our bed. It was right before the late afternoon nap and they hadn’t quite settled in yet, so they were making those non-committal cries that make you think, “Should I pick them up or what?”

Chiara climbed onto the bed and sat between them. She put a hand on the chest of each baby.

“It’s O.K. You’re O.K.” she said in a soothing voice, “I’m right here.”

It’s good to be a parent.

There’s other good stuff—my mom was here for two and a half months, pulling truly heroic shifts, back when there were six night feedings between midnight and 6 a.m. My sister, Jackie has been here the last month, playing taxi and reading books, changing diapers and washing chickens.

And now my stepmom is here helping us hold down the fort. The night shift has gotten markedly easier (now the 6 feedings span between 6 p.m. and 6 a.m.) This week a million cousins and grandparents are coming in for next Saturday’s baptism (well, five grandparents, two aunts, two uncles, and three cousins).

We’ll check in sometime after our whirlwind tour ’10: Fresno, Santa Monica, El Paso, Austin, St Paul, Chicago, and COUSIN-O-RAMA!

*adjusted

** She’s wrong. She has mistaken Michael’s babbling (“ah-goo”) for multisyllabic babbling, but real multisyllabic babbling has two characteristics. 1) Anyone can babble in vowels, so they don’t count. It has to be two different consonants, like ba-da or doo-ba. 2) Developmentally, it has to happen after reduplicated babbling, like ma-ma, ba-ba, da-da, you get the idea. If it happens before then, it’s just an accident; it’s not a milestone.

*** In case you’re wondering, in this story—a Chiara Original, as far as I know—Christopher Robin finds Pooh Bear drowned in a pool of water.

Until next time, enjoy these pictures!

Some Pics

2010-05-05T20:32:00.000-07:00

OK - no time to write, just the deets:

BOYS: ten pounds apiece
CHIARA: this link says it all: http://www.youtube.com/watch?v=TftbzckFqys
MATT: is pulling heroic shifts at work and home
NONNA: (my mom) nothing would be possible without her
ME: small bout of mastitis. Nothing major. Just gives me an excuse to grouchy. Like I needed one.
Oh, and in case you're wondering, yes it is possible to nurse twins and read a book at the same time, but you need to get the book ready BEFORE you pick up the babies.

And now for cute baby pics! (Wagner is always in blue; Michael never is)

And They Never Blogged Again . . .

2010-04-11T16:39:00.000-07:00

And They Never Blogged Again . . .

The whole family is together and has been since last Friday (April 2)! Everyone’s been doing great. The boys (for the most part) eat every four hours and then sleep for another three and a half. At last count, they were both around seven and a half pounds and eighteen inches, all in time for their due date, which is today, (April 11th).

Thanks to everyone who supported us along the way. It was a long journey, sometimes scary, but ultimately it was an empowering experience. Sharing our story through this blog was a new step for us. Our first instinct was to keep our troubles to ourselves and not bother anyone with the details. But in the end, sharing our hopes, fears, and triumphs through blogging became an incredibly therapeutic outlet. Thanks to everyone for your feedback over the last few months. You let us know through your emails, calls, comments, texts, visits, and prayers that we weren't going through this alone.

Love to you all,

the Kovac Clan

The Last Nap

2010-03-31T12:01:00.001-07:00

The Last Nap

This whole time I feel like I’ve had a sountrack running in the back of my mind. Back when it was time to take out Michael and Wagner’s breathing tubes it was “Celebration” by Kool & the Gang. Only I sang, “Ex-tubation time! C’mon! It’s an ex-tubation!”

Now I keep singing “Last Dance” by Donna Summer. Only it’s “Last Nap.”

Folks, Wagner came home yesterday (Tuesday). And Michael will likely follow on Friday.

It feels so weird. Alta Bates, NICU nursery was like a full time job for me these last three months. In fact, when I would go home at the end of the day I would joke to the nurses that I was clocking out. But comparing it to a job is really selling the Alta Bates NICU short. It’s an amazing place, more like a home than a job. It’s hard to believe that it’s time to say good-bye.

So in these last few days, I’m trying to soak up every detail, every beeping monitor, every miniature doctor’s implement. I’ve been reflecting on our last three months here, tallying up the memories and replaying them like one of those montages for the final episode of a sitcom. You can think of it as a montage to “The Last Dance.”

. . . My first walk into the NICU, slow and shuffling, still tethered to an IV, passing the front desk with all the Christmas cards from Preemies Past, kids now a year old, four years old, twelve years old.

. . . Our locker in the family room, number 25

. . . Watching our week-old sons suck breast milk from a swab

. . . The purple or peach vinyl bedside rocking chairs

. . . Hearing through the walls, the uncontrollable sobs of a distressed mother

. . . The cinnamon air freshener in the bathroom in the family lounge

. . . Wagner pulling his tubes out

. . . Assembling plastic parts, pumping, washing, sterilizing. Wanting to skip it, but knowing it’s the only thing I can do for the boys right now

. . . Matt sleeping with his cell phone in his pajamas in case the NICU called

. . . Keisha, the security guard downstairs, Simi and Jackie, the security guards on the 4^th floor, Brett, Sonia, & Allison, the security at the NICU desk

. . . Looking out the window at UC Berkeley clock tower

. . . Cracking jokes with the nurses

. . . The day the IV lines came out

. . . The first time either one of them latched on

. . . The doctors patiently explaining the cloudy spots on the x-rays

. . . The countless hours my mother logged at her grandsons’ bedside in the six weeks she stayed with us

. . . Michael pulling his oxygen mask off

. . . Giving the boys kisses on their stomachs as they lay on the isolette tables after surgery

. . . Looking through the halls for a pumping machine

. . . The teddy bear in the tile floor right outside the NICU and the LED-lit constellations in the ceiling panels

. . . The quilted isolette blankets with their three panels

. . . Wagner with little black googles to protect him from the phototherapy lights

. . . Hearing the night nurse call Michael, “Big stuff.”

. . . The heart-shaped temperature sensor

. . . The “turkey bags” the boys were in for the first eleven hours

. . . The little green stickers to label freshly pumped breast milk

. . . Kangaroo care with the boys, me in with one twin, Matt with the other, the two of us on opposite sides of the room, peering at each other through the hospital equipment

. . . The serene silence of the night shift

. . . Getting to know the nurses and learning about their families

. . . The smiles of the nurses after they got their thank-you fudge, thank-you cookies and Rita’s fruit arrangement

. . . Watching the physical therapist work with the boys on the physio ball

. . . Wagner’s “three o’clock special”: the enormous multi-diaper poop that always seemed to turn up at the nurses’ shift change

. . . The room assignment board w/ names on teddy bear magnets

. . . Dr. Kao, helping us pick a pediatrician, “Not him. He’s too old.”

. . . Nurse after nurse telling us that Michael had “chewed them out”

. . . The scrapbook pages that the night shift made

. . . Valet parking at the hospital garage

. . . The first time we heard Wagner cry (it was after their tubes came out. Their throats were sore. We had heard Michael cry—a lot!—but not Wagner. When Wags did, Matt, our nurse, Jo Ann, and I all jerked our heads up. He cried!)

. . . Understanding the boys’ conditions well enough to “give report” to the attending doctor

. . . Our blue parent bracelets

. . . Our photo shoot for Alta Bates (the NICU needed some new stock photos of moms and babies and they asked us to pose for some)

. . . All the times I pinched myself to keep from crying

. . . All the times I took their temperature and changed their diapers through the isolette doors and it seemed perfectly normal

. . . Listening to their little goat noises (the boys make little goat noises in their sleep)

. . . The endless beeping of the monitors in the early days

. . . Nurse after nurse whispering to us in the final days, “They don’t look like preemies.”

. . . The pictures Chiara drew specifically for her brothers’ bedside

. . . Winding my way up the parking garage

. . . Their little toaster heads and Janet the nurse telling me, “Don’t worry. We’ll fix it. They won’t go to kindergarten with toaster heads.”

. . . The misty eyes of the parents (us), doctors, and nurses at Wagner’s final discharge.

. . . The little graduation hat the night nurses made, along with the certificate of completion:

This is to certify that Wagner Kovac

On this most special day of March 30, 2010

Does hereby graduate from the NICU having successfully overcome,

With courage and determination, the obstacles that arose.

Now, if you’ll excuse us, Matt and I are going to take that last nap before Michael gets home.

Home Stretch

2010-03-27T00:33:00.000-07:00

Home Stretch

We are truly in the home stretch. We moved to Nursery 3 (where the big five pounders are). Both boys have been off oxygen for over a week and are getting all their feeds by breast or bottle. Earlier this week we moved to “ad-lib” feedings, which is not, you may be disappointed to read, a improvised concoction of whatever the nurses find in the fridge. Instead it means that the babies eat when the babies say so. Which are all indications that the twins are doing great and will be home soon.

But the best barometer of how you are doing in the NICU is the reaction you get from the folks who work there. At first all we got were solemn, thoughtful nods followed by the occasional gentle touch on the forearm (you know things are serious when a nurse intentionally commits an action that forces her to wash her hands again). After the ligation, we knew things had taken a turn for the better because even though to us, the twins looked and acted exactly the same, the nurses and doctors were all smiles. Even nurses we hadn’t met were greeting us by name and smiling. Until then, I didn’t know that people who worked in the NICU had smiles.

Well, if they were smiling before, you can’t imagine what they’re doing now. Every day is like walking into a sea of adoring fans chanting your name, “KOVAC! KOVAC! KOVAC!” Any day now I expect to ride into Room 22 on the shoulders of nurses, social workers, lactation consultants, respiratory therapists, physical therapists and LVNs.* Seriously, it’s all hugs and high fives here in Nursery 3. (And then we all wash our hands again, of course.)

* LVNs are special nurses who only work in Nursery 3. And once you get there, you can get your own LVN. But I don’t know who they are or what they do because we weren’t in Nursery 3 long enough to find out.

I am also getting quizzed by the nurses at every turn. Just walking to the fridge to get fresh milk I have to field three or four trivia questions:

How many breaths to chest pumps for infant CPR?

2 to 30!

What vitamins are you going home on?

Poly-vi-sol!

What do you do when the pharmacy changes the dose of your iron supplement?

Check the concentration!

And of course, endless corrected gestational age questions.

When your baby sits up at seven months, how old is he really?

How old, in both corrected and biological months do you expect your baby to be when he walks?

In August, how old will your baby really be?

Answers: 4 months, 1 year, 15 months, 5 months

Corrected gestational age is basically just counting from when they should have been born instead of when they were born. This is especially important because they were born so early. In fact, even though they are almost 3 months old now, we are still counting in gestational weeks. (They will be 38 weeks this Sunday). It’s easy to look at them now and think of them as newborn babies and not as three month olds, but months from now, it will be hard not to compare their progress with other December babies. The nurse hurl their corrected age questions because they want us to remember that the twins are actually April babies.**

**I have been trying to work in this joke about writing an overloaded correctedAge() method for the date class in Java that would take as parameters birthdate, duedate, and a datearg and return the corrected gestational age. But outside of Pete, I don’t know if there’s anyone else out there who would get such a joke.

Careful observation also tells you how long other parents have been here and how close they are to discharge . The faster the gait, the closer the date.

On one end of the spectrum is the slow shuffle of newest moms still in their hospital gowns, still tethered to their IV drips. They waddle around in an anguished daze still dealing with their own recovery.

There are the angry, impatient walks of the parents of the term babies—parents who never imagined that they’d end up here and act as if just being here is an impediment to parenthood rather than another stepping stone in the road.

Then there are the slow, steady, stoic paces of the long term parents. Parents like us, who knew that they might end up here. Knew that it would be a long haul. Parents like Sam, whose twins were split up weeks ago because the girl was healthy enough to go home but his boy was not. A month ago Sam stood upright and made jokes; now he slouches around in a sleep-deprived haze with unshaven face and smudged-up eyeglasses.

Parents like Elle, who had her little boy at 26 weeks—a week after the twins were born. (Which means that we have the same corrected gestational age). She’s going back to work Monday because little Thomas will be here another two months. You know Elle has a long way to go. Her slow stride tells you so. Elle’s a fixture here. Spends every moment trying to stay there: in the moment. Tries not to think ahead, tries to block out what could happen to her boy. She even tries not to think of a day when her son will be healthy. It’s just too far away. Too much of a tease.

We are on the other side of the spectrum. I have taken to wearing this huge shawl since we’ve been in the NICU (great for discreet pumping) and these days, I walk so quickly down the halls of the nursery, my shawl flies behind me like a cape, like Super NICU Mom! Able to switch pulse-ox sensors with a single flick of the wrist! Able to Kangaroo Care in a moment’s notice! Able to dodge flying poo! I skate so quickly through the NICU halls that sometimes I feel as if I’m moving to dodge the potential setbacks that could keep us here longer.

We are in the final countdown. Literally. Hearing screening tests. Done. Carseat tests. Done.*** Discharge class (for parents) Done. CPR class. (Baby! Baby! Can you hear me?) Done. Pediatrician’s appointment. Made. Final eye exam. Tomorrow.

***The carseat test has to be done on all preemies under a certain weight to make sure they can still breathe on the incline of the seat. Here’s how it’s done: they feed the baby, stick him in a carseat and monitor him for ninety minutes. To pass you must breathe for the full ninety minutes.

Now it’s up to the twins. In order to be cleared for discharge (that just doesn’t sound right, does it?), they need to have five consecutive days without apneas, bradys or major desats. (apnea = stop breathing, “brady” or bradycardia = severely low heart rate, “desat” or desaturation is measure of quality of breath). Wagner had a brady early Wednesday morning, which puts us at Tuesday at the earliest.

It feels like the week before school’s out. And then the fun really begins, right?

Oh – Wagner just hit six pounds and Michael’s not for behind at five pounds & thirteen ounces. They’re almost 4 times their original birth weight!

Celebrate and Give Thanks

2010-03-22T23:57:00.000-07:00

Celebrate and Give Thanks

On December 30, 2009, my little boys landed on the planet with pre-existing conditions. They have been in the hospital the last eighty-two days and racked up a combined sub-total of two million dollars in hospital bills—lemme say that again—a sub-total of two million dollars. And that’s just for the first forty-five days. They’ll come home in a week or so—lemme say that again, too—a week or so.

But we’re not out of the woods yet. And won’t be, even after the boys get discharged. There will be monthly assessments and physical therapy appointments. It is expected that the boys won’t sit up until they are about seven months old, crawl at a year, and maybe not even speak until the age of three. For the next two years we will have to get monthly shots for RSV (a respiratory virus) from November to April. We will be tracked closely for the next two years, and intermittently for the two years after that.

That’s a lot of doctors’ bills.

Luckily, we’re covered. Matt has excellent health insurance through his work. Of course, we are still getting calls from healthcare providers because Aetna isn’t paying its negotiated share and we still get loads of bills everyday and I’m still confused by all the fine print. And up until today, I still worried. Worried that we would suddenly get dropped. Worried that Matt might get laid off and we wouldn’t be able to afford the $3000 monthly COBRA coverage. Worried that Matt might become chained to his job just because of the health benefits. Worried that the benefits package could disappear.

But tonight, on the eve of tomorrow’s historic event, I am relieved. Now I know that for the rest of their lives, no one will deny my little boys healthcare coverage just because God brought them into the world a little early. Now I know that no matter what happens with Matt’s job or our fickle insurance company, we will not go bankrupt just because we choose to keep our family healthy. It’s a huge relief.

However, I’m not just relieved, I’m flooded with gratitude. For years Matt and I have been the uber-healthy ones, paying into a system month after month, year after year and never drawing on it. We were the ones that the insurance companies cherry-pick and love to cover: the young folks who never need to see a doctor.

Of course the twins changed all that. Now we will never pay into the system what we get out of it. And the only reason their security—their health—will even be possible will be because of you. All of you. Every person in our family, every person reading this blog, heck—every person in this country. Our twins can be covered no matter what because now their risk can be balanced by your health. Oh, I am grateful. So grateful. Thank you. All of you.

My sons are alive because of the wonderful healthcare they received. They will continue to be able to get care and coverage because of the new legislation that will pass. And while we, the Kovacs, might never pay enough into the system with hard dollars, there are other ways we can repay our debt. My sons have their entire lives in front of them. You can be sure that we will raise them so they know that they owe you. Maybe they will be scientists who discover cures. Maybe they will be doctors who help heal the sick. Maybe they will be judges who will fight for justice. Maybe they will be artists who inspire others. Maybe they will be loving husbands and fathers who will raise scientists, doctors, judges, or artists.

Whatever vocation they will follow, know that they will do it with compassion and empathy. They will know that we are stronger as a whole than we are as individuals. They will teach others that the strong always help the weak. They will be generous in spirit and always, always, grateful.

It’s a good day. A good day indeed. And thanks again, everybody.

A New Frontier: The Open Crib

2010-03-06T16:53:00.000-08:00

A New Frontier: The Open Crib

The twins are doing great. Really, really, really great. So great that they are in the same crib together! No more plastic box!

They are gaining weight steadily – both above 4 pounds, now. And both are “tolerating their feeds very, very well” which is fancy talk to say that the food doesn’t come back the way it went down but goes out the way Nature Intended. The “very, very well” part refers to their “output.” They are pooping prodigies. Prolific. Powerful. Projectile. (yes, projectile.) If pooping were a martial art, my sons would be black belts. They are Poop Ninjas.

The twins had their eye exams, too. No ROP!!!!!!! In case you don’t have your Preemie Manual handy, ROP is another one of those preemie acronyms that, when spelled out, still gives you no clue to what it actually stands for. Then a nurse explains it to you, linking words like “retina” and “blood vessel” with words like “blow out” and “surgery.” That’s really all you need to know. Sometimes (rarely, but it does happen) preemies need laser eye surgery, particularly if their early oxygen needs were too great. We dodged the bullet; their eyes are fine. That’s all you need to know.

The twins can maintain their body temperature (with the help of hats & blankets rather than with the help of heated & humidified plastic boxes) so as of Monday night, both boys are together again in an open crib!

Aside from having to remember that you ALWAYS have to breathe, the twins have one major hurdle left before going home: learning how to eat. Basically, they have to suck, swallow AND breathe. It’s a skill that 25 weekers have a problem with. The later the babies are born, the easier it is for them to learn this coordination. Term babies learn it pretty much at birth. It will take our boys about a month to do this correctly and consistently. They’ll get some bottle practice, too. And then the nasal feeding tubes come out!

Other cuteness in Open Crib Land – the boys wear little clothes now. They are becoming more active and smile regularly. I refuse to believe its “just gas,” because lemme tell you, they’ve had gas for two months now. And no smiles. And now, they are bundled up next to each other and guess what – they smile.

Favorite thing to say: (to one twin) “Look! It’s the most beautiful baby in the world!” to which the nurses inevitably gasp and mention the brother. “It’s O.K.” I reply. “The other one looks exactly the same.”

And now for some pics. The singles are of Michael, back when they were separated. In the doubles, Michael is on the left (house left, not stage left) and Wagner is on the right. Now accepting cute captions.

A Night at the Ballet

2010-02-23T00:13:00.000-08:00

* * * Twins are doing really great. Mike the Cow, not so much * * *

A Night at the Ballet

“How is your daughter handling this?” I am often asked.

Great, I say. I reply that she’s at the perfect age, old enough that we can explain [some] things to her, but not old enough to be worried. For all she knows, it’s perfectly normal to have a baby and leave him at the hospital. And for all we know, it’s perfectly normal for all her dolls to be sick and need medical attention. This morning she was lining them up for vaccines.

“And how did she do with you in the hospital for so long?” (I was in Ante-partum for eight days before the twins were born and in post-partum for five).

She did great. Just great. Don’t all three year olds scream, “DON’T LEAVE ME, MAMA!!!” when their mommies go take a shower?

But just in case, I thought we’d have a little mother-daughter time. We went to see the ballet, Coppelia last Friday night.

“It’s like a night adventure, Mama!” “Adventures” are what we do on non-daycare days. Some people run errands. We have “adventures.”

Coppelia is a full-length ballet from the late 19^th century. Like Giselle, it’s one of those “My man done me wrong” ballets. You know, boy and girl are engaged. Boy falls for someone else. Girl gets upset. In Giselle, the other woman is a rich aristocrat. Girl goes crazy and dies. Boy is wracked with guilt and tormented for all eternity by a herd of undead jilted ladies. I’m not kidding. In Coppelia, the other woman is a doll. So Girl triumphs, Boy feels dumb that he fell for a doll. They get married and she probably holds it over his head for the rest of his natural born life.

Coppelia does have an additional creep factor—Dr. Coppelius, the eccentric old maker of life size dolls, has been studying magic in hopes that he can bring his doll, Coppelia, to life. When Boy (“Franz”) sneaks into the toy factory to make overtures to this hot doll, Dr. C gets him drunk and tries to steal his life essence for his doll. “Swanhilda,” the Girl (again, not kidding) is dressed in the doll’s clothing (oh! What would 19^th century comedy be without the ol’ dress up in someone else’s clothes bit), and pretends to come to life. Franz sobers up and Swanhilda says, “Ha! I tricked both y’all!” To which Franz says, “Oh, you! I guess we might as well get married, then,” all in ballet pantomime, of course. Then Dr. C. crumples to the floor, broken hearted.

I thought it would be a good ballet to see because I thought I could explain the story to Chiara. (Turns out I was wrong; it’s harder than you think. “See, the girl pretends to be a doll who pretends not to be a doll anymore.”)

She loved it anyway.

And now we get to the part of the story that makes it blog worthy. Apologies for sounding trite, but I learned something on Friday night. Not only is the whole greater than the sum of its parts, but you get to cherry pick your parts and that makes it even better.

For example, this was not a convenient show to see. There was one show only: Friday night at 8 p.m. in Marin County, 45 to 60 minutes away when there’s traffic. On a Friday night before a three-day weekend, there’s traffic. It was raining to boot. I knew beforehand that the quality of the dancing would not match the price of the tickets. Lastly, I have a lot of negative memories associated with performing Coppelia.

In the end, none of these details mattered. Chiara and I shared a magical night at the ballet in a way I would have never anticipated. Here are details that made it memorable.

Chiara insisted on wearing her “fancy dress” (blue velvet with a layer of tulle underneath), her hair in a bun, and sequined Mary Jane’s (thanks to Cousin Maria). Chiara was by far the smallest audience member and several people commented on her get-up.

“Are you a dancer?” she was asked over and over.

“Sometimes,” she would shyly answer.

I had gotten seats on the far edge of house right, in case we needed to beat a hasty retreat. In the row in front of us sat a white haired couple. Judging from her cane and his agility, I think it was a son accompanying his elderly mother to the ballet. It was hard to say who was more excited, his mother or my daughter.

“We aren’t going to have a sing-along, now, are we?” he preemptively reprimanded her. She didn’t answer, hands clasped at her chest, watching the curtain in anxious anticipation.

The lights dimmed and the overture played over the loudspeakers. The old woman’s head bobbled in time with the music and her hand involuntarily waved to and fro as if she was conducting an imaginary orchestra.

The score to Coppelia was composed by Leo Deliebes specifically for ballet. If this woman knows the music, chances are she danced this ballet. How beautifully poetic it is. Here we are, three generations of dancers. Past, present and future. Will I one day be like this old woman, escorted by Chiara to a B-list production, with nothing to hint at my past life but knowledge of the music?

The performance was pretty much what I expected it to be: the occasional dancer out of line, a sickled foot here and there but what I will remember is Chiara, sinking into my lap, leaning against me, occasionally whispering, What happens next?

I had planned to leave after the second act (the third act is the wedding—always a bore), but Chiara wouldn’t let me. “NO! We have to stay for the next act!” (How did she know there was another act?). She bargained with me: “Let’s stay for one more dance.”

So we did. We stayed for the opening of the third act—the pas de trois—the part I danced in Iceland. And this is what makes life so extraordinary. I haven’t heard this music in seventeen years. But as I listened to it, I felt a surge of joy. “Wow.” I thought. “I must have really enjoyed dancing this.”

It may sound silly, but this was a surprise to me. Unlike other parts of the ballet that evoked memories of the choreography or the political back story that unfolded behind the scenes (literally!), the music to the pas de trois just brought back blissful feelings of pure joy, one of those moments where you feel that to live life is to soar above it. And now I was simultaneously remembering, experiencing and sharing that feeling with my daughter.

We stayed for one more dance, the doll dance (the Russians had taken liberty with the story) after which Chiara whispered, “Now we can go.”

Happy Birthday

2010-02-17T20:21:00.000-08:00

Happy Birthday

*** The twins are doing great. ***

Today is Chiara’s birthday. Saturday is her party. She has been to two birthday parties this year and has specific ideas about what her party should have. For one, it should have balloons and party hats and a piñata. And the piñata should be cow-shaped.

I have no idea where she got this, (since neither of the previous piñatas were cows), but she was very firm. Had to be a cow. As luck would have it, they do make cow piñatas and we found one at the second store we went to.

Chiara loves her cow. It’s almost as big as she is, but that didn’t stop her from dragging it from room to room as soon as we got home. She introduced it to her other—much smaller—farm animals. She read it a story. She named it Mike. Mike the Cow.

Uh-oh. What was going to happen on Saturday Mike the Cow gets strung up by the ears and has her udder bashed in with a baseball bat by nine screaming three year olds?

“Honey, do you know what will happen to Mike the Cow at your party?”

Chiara knit her eyebrows, made a frowny face and a stabbing motion.

“WE’RE GONNA HIT, HIT, HIT MIKE THE COW!” she exclaimed. And then she turned to Mike the Cow and starting reading Harold and Purple Crayon to it/him/her.

Well. At least she’s clear on the concept.

My God, It's Full of Stars

2010-02-14T00:27:00.000-08:00

My God, It’s Full of Stars

Today when I got to the NICU and checked on Michael, he had his mouth open (as he often does), his eyes open (as he has started to do right before feedings) and his hands on his cheeks. Although he looked like something between Macaulay Culkin and Edvard Munch’s Scream, I like to think he was looking up at his isolette in with the same awe of Dave in 2001.

After all, he and his brother have something no other preemie in the NICU has had before (besides blond hair): a nasal cannula with a ventilator.

[Preemies don’t have blond hair. They just don’t. Even those who end up blond later don’t have blond hair. So it’s really weird that ours do. Esp. since one of us has brown hair and one of us has black hair.]

A nasal cannula is just fancy hospital talk for “tubes up your nose.” But these tubes are different. Not only do they deliver oxygen, but the ventilator means that they give pressure, too. This is good because if the twins stop breathing, as they are wont to do from time to time, the ventilator gives ‘em some extra breaths.

It’s the first time they’ve combined the nose tubes and the ventilator for a preemie at this hospital. Apparently the technology was conceived at USC’s L.A. Children’s Hospital (O.K., Louise, you win this round), but for us, it’s new. The nurses are all very impressed with it.

The twins like it, too. It means that they can touch their faces, as Michael has discovered, and tug on them without disconnecting terribly important breathing implements, such as the old nasal prongs (which scrunched up their faces) and the breathing mask (which covered their mouths and nose), both of which have to be secured with elastics (which leave indentations on their starting-to-get-chubby cheeks) and little do-rags (which leave their heads just the slightest bit smaller than if they didn’t have the hats). Prior to nasal cannula insertion, the boys would, from time to time, pull their prongs out and their masks off, which is Not Good. (Note: they CAN breathe on their own, just not for extended periods of time—say, longer than twenty minutes—and their lungs don’t always inflate fully).

The new get-up is also much quieter than the old get-up, which is nice because our boys do not like noise AT ALL.

The new get-up also means that in addition to “kangaroo care” (where we hold the boys on our chests bare skin to bare skin), they can start “recreational breastfeeding.”

Now don’t laugh, but when I first saw “recreational breastfeeding” at week 31 on our “Care Chart” under “Parental Awareness,” I worried that it might mean something between the parents rather than something for the babies. And I didn’t want to ask about it because I didn’t want my fears confirmed. Hey! I asked you not to laugh.

Turns out it just means that babies nurse without really feeding, as the whole “suck, swallow AND breathe” thing involves a lot of coordination. For the babies, anyway. So the recreational breastfeeding is like an intermediate step.

And they are so ready for it. Last night, Wagner was in “kangaroo care” and starting to root, inching his way toward the nipple, licking his lips, so intent on his goal that he didn’t even notice the hairy chest. How was he supposed to know that recreational breastfeeding doesn’t work on Dads?

Oh – and we’re now at week 32 with both boys over 3 pounds. Yippee! All of this means progress. Which is probably why Michael had his hands on his face; not just because he can, but because he can’t believe we’ve come so far in just six weeks.

Wagner's Up and Down Day

2010-02-06T22:38:00.000-08:00

Wagner’s Up and Down Day

* * * The twins are fine, so fine that I am now writing a post about how fantastic their latest lung x-rays are. But this is not that post. * * *

Note: this title was taken from the book Big Brown Bear’s Up and Down Day , which is a GREAT children’s book that everyone should read. But what happens to Bear is nothing like what happens to Wagner in this post.

* * * * *

“So, Wagner had a bad night.”

Look at the chart. Cluster of red circles: at 17:30, 23:45, 01:20, 02:40, and again this morning at 10:45.

“Mostly if he de-sats, it’s in the 60’s, but these episodes were apneaic.”

Apneaic. Not breathing.

Look at the monitor. Everything’s fine. Heart rate in the 160’s, breathing in the 50-70 range, Oxygen – saturation rate in the low 90’s.

“Everything’s fine now. His numbers are good.”

Look at the respirator. Breaths per minute: still 20. Oxygen percentage: 25, almost 21%, like the air we breathe. PEEPs, PAPs, PIPs, all good.

“We have new doctor’s orders. Limit holding to once a day, no more than an hour.”

Is that the problem? (Of course, nobody was holding him at night around his cluster of episodes.)

“No. We want you to hold them, but if they’re having problems . . . “ she trails off. “Sometimes it’s . . . we just have to see how they handle it.”

Michael’s fine. Same kind of monitor. Same kind of respirator. Same kind of numbers. Different night. I take his temperature. I give him his pacifier. I change his diaper, put it on the tray so it can be weighed. I change the oxygen sensor from his foot to his wrist.

Hey! The PICC line is out! (That’s good news. Really good news.)

“Yes, they took it out last night. The boys are up on their feedings, down on the TPN. They don’t need their IV’s anymore.”

So maybe that’s why Wagner had a bad night?

“Could be.”

As I adjust Michael’s pacifier again, I hear it first from Wagner’s monitor, then see it on Michael’s. The high-pitched alarm of a de-sat beeps from the front monitor. Wagner’s readings pop up on Michael’s monitor. 48.

48. Wagner has dropped from a “safe stage” somewhere between 80 and 97, triggered the alarm and in two seconds (literally two seconds), he’s now at 48. In all of their daily de-sats, I’ve never seen it drop so low so quickly. The room is dark. The nurse has stepped out. I’m alone with the twins.

In another second, a nurse rushes in. I’m still changing Michael’s bed. Because I’m at Michael’s isolette, she thinks the problem is with Michael. I nod toward Wagner to indicate that the problem is with him. Before she can ask I tell her, “He’s at 48.”

Our primary nurse comes in. Calm. Too calm?

I finish with Michael.

More flashing numbers: 43. 38. 33.

“He’s at 9,” says the first nurse. “Breaths. He’s at 9 breaths. 25. He’s back to 25.”

“Give him some more oxygen. I upped his oxygen but give him some more.”

“Come on, Wagner. Breathe, honey, you’ve got to breathe.”

“Tap him on his back.”

38. 44. 55. 56. 57.

“Give him a little more oxygen.”

55.

“Breathe, honey. Come, on.”

Oh, please, breathe. Please breathe.

67. 73. 78. 85.

The monitor stops flashing.

The nurses discuss whether the episode was apnea or not. His heart rate only dropped to 119. Technically, an apneaic episode would have had a heart rate of 90s or lower. But given the cluster of apneas last night, we’ll count it as an apnea.

The monitor beeps again.

97. 98. 99. 100.

We smile. He’s fine. The nurse lowers his oxygen again.

That was the day nurse.

“I think we should do some tests. There could be an infection from taking the PICC line out. All it takes is one little germ.”

The doctor agrees, shrugging, “Sure. You never know.”

Take a blood gas. The results come back great.

Snap an x-ray. The lungs look cloudy, but nothing too different from yesterday’s x-ray.

The next step is to take some blood, some for tests, some for a culture. The artery spasms. Another nurse is called in to try. Another spasm. They try another limb with a tourniquet this time.

Matt and I watch Wagner’s arm, strangely listless. It doesn’t even react to the needle prick. Too cautious to pace, we stand there, arms crossed, brows furrowed, lips tense.

Finally, they find an artery. The blood goes from Wagner’s ankle to a thin tube to a strip of paper. The results come back picture perfect. No infection.

And the listless arm?

“Sucrose. A drop of sucrose on the tongue for infants acts like a pain killer.”

That was the afternoon nurse.

Finally at the end of the day, Wagner’s saturation rate is high and his oxygen percentage rate is low. (Both very good.)

We still have to wait for the results of the blood culture, but it looks like we’ll never know what caused this cluster of apneas.

“Sometimes that’s just what preemies do.”

That was the night nurse.

A day later, remembering, recording. Like a balloon letting out air, I finally cry. Little, simple, relieved tears. I’m OK. It’s just what parents of preemies do.

Michael and Oregano

2010-01-30T12:22:00.000-08:00

Michael and Oregano

* * * The twins are fine * * *

When Chiara went back to school after the Christmas break, she was SOOOOO ready for Show-and-Tell. One of the nurses in the NICU had made her a little care package: a hospital band that reads “Big Sister,” a preemie diaper, a preemie shirt, a preemie pacifier and stickers of the boys’ footprints and she was ready to show them off.

“I have twoooo brudders!” she announced to her teachers. “Mi-call anda Wag-ah-nah.”

The teachers were puzzled. “Michael,” they understood. But what was that second name? Oregano?

“No! Ah Wag-ah-nah.”

It really sounded like “Oregano.” A name like that, paired with the name “Michael” was an unlikely combination, the teachers thought, but they didn’t want to pass judgment. After all, we do live in Berkeley, where half the parents get their names from The Silmarillion and the other half pretend that’s completely normal.

As open minded as the teachers are, they were quite relieved to hear that Baby B’s name was “Wagner,” Matt’s mother’s maiden name, and not some pizza topping. (When Matt’s five-year old niece heard that one of the twins was named “Wagner” she gasped and exclaimed to her mother, “They named him after your computer password!”)

The twins’ full names are Michael George Ordonez Kovac and Wagner Lee Bryan Kovac. “Michael George” is Matt’s dad. “George” is also my stepdad’s given name, the father of my stepmom, Matt’s middle name, and Matt’s grandfather’s name. “Ordonez” is my mother’s maiden name. “Lee” is my dad’s middle name and “Bryan” is my maiden name. Which means that we have completely exhausted our pool of family names. If we have a fourth kid, we just might have to turn to the genealogy of Gimli. So if you get a birth announcement four years from now for “Dothlorian Kovac,” don’t laugh and don’t judge.

* * * * *

Mikey & Wagner are a month old today (Saturday, Jan 30) but their age is still counted in gestational weeks. Right now we are at the end of week 29. I think of it as T minus 11. So it’s funny for me to see that they have little personalities and peculiarities, since, under “normal” circumstances, they’d still be in the womb with nearly three more months to cook.

For your amusement, some Michael and Ore . . . uh, Wagner fun facts:

Michael was born at 1 pound, 12 ounces. He is about two and a half pounds or about a kilo and some change. Or, for those of you doing the conversion in methamphetamine, about $70,000 street value. In other words, if Michael were all meth instead of all baby, he wouldn’t even come close to paying his hospital bills.

Wagner was a little scrappier, born at 1 pound, 9 ounces. Now he is hovering right around two and a half pounds, depending on if he gets weighed before or after the diaper change.

Michael has an outie belly button; Wagner has an innie.

Sometimes I look at them and think, “Wow. They look just like Kovacs.”

Today they both had the hiccups AT THE SAME TIME.

Michael likes to suck his thumb and when the nurse delivers “oral care” (a swab with a few drops of breast milk to clean out the mouth), he always opens his eyes. They both like to suck on the swab. (Michael and Wagner, not Michael and the nurse).

Wagner is often found with a hand down his diaper.

Both boys prefer to be on their bellies. They get turned every few hours and their heads get turned, too—to prevent what the nurses call “Toaster Head .”

Michael will often hold on to a finger or thumb when you “hold” him (compassionate touch holding).

Wagner will often put his arm over your hand.

Now that they have a new breathing system (nose pressure—SiPap for you NICU know-hows—rather than tubes down the throat) we can hear them cry a little bit. They sound like that penguin from Toy Story who swallows his squeaker.

Yesterday Wagner had tears when he cried. Actual tears.

They have strawberry blond hair. And, sadly, a little bit of Toaster Head.

Both LOVE to be held and both hate diaper changes.

They are funny little guys. The nurses like to tuck the babies’ arms and legs in when they are on their backs (the babies, not the nurses). Then they (the nurses, not the babies) stuff little blankets to make sure they stay that way (the babies, not the nurses). One day—and just this one day, as far as I know—the nurses would tuck the twins’ arms and legs in and two seconds later BOTH kids would have their arms and legs draped over their blanket bumpers like little old men in inner tubes, sunning themselves in their little isolettes. The nurses would tuck the limbs back in and within seconds, both kids would be stretched out again.

The day nurses always say, “Wagner’s so fidgety. Michael’s the calm one.”

The night nurses say, “Michael’s a feisty one! Not like his brother.”

Sometimes I look at them and think, “Wow. They look just like Dr. Zaius.”

On Monday I got to hold Wagner and Matt got to hold Michael for the first time. Really hold them—skin to skin on our chests—not just one hand on the head and the other on the feet. It’s a dramatic endeavor: the babies still have tubes and wires and IVs and it takes two nurses to take each baby out of his isolette. But it’s so good for the babies. And the parents. True, I did cry on my son’s head. But it was amazing. We held them for over an hour. (Michael cried when they put him back). It was like being parents.

Sleep tight, my little Toaster Head monkeys (the babies, not you blog readers).