A Letter to Parents of Micro Preemies

(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.

Ten Bucks

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

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 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.

© 2010 Janine Kovac