Friday, October 29, 2010

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 wine. 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.

© 2010 Janine Kovac

Thursday, October 28, 2010

Write Your Thank-You Notes

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.

© 2010 Janine Kovac

Monday, October 11, 2010

What a Wonderful World

 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 caf├ęs 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.

© 2010 Janine Kovac

Friday, October 8, 2010

Let Them Fall

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

Wednesday, October 6, 2010

Giving Back

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

Tuesday, October 5, 2010

The New NICU Days

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 4th 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