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.

© 2010 Janine Kovac 

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!

© 2010 Janine Kovac 

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.

© 2010 Janine Kovac 

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.

© 2010 Janine Kovac