Testimony for "The Binder of Hope"

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.

© 2010 Janine Kovac 

And the pictures we included:

Michael

Matt & Michael

Me & Wagner

Wagner

Michael & Wagner

Michael & Wagner

Wagner & Michael

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

One small step into the blogosphere . . .

The Pod Blog

So we decided to jump on the blogwagon.  Not just because our daughter is so adorable we wanted to have a forum to tell people about it (like, “Christmas is so far away, we’ll need a plane to get there”), but because in the foreseeable future we imagine we will have a lot of different kinds of news that we imagine a lot of people would like to know and that’s a lot of phone calls.  Nine, if you just count our immediate family.  And if we just send out of few facts, and you use the Google machine on the Interweb, you’ll find out a lot of scary sounding things indeed.  Better to get it straight from us.

Here’s the short story: we’re pregnant.  Twins.  Identical.  Boys.  Due in April, but we’ll get them in February.

We’ve told enough people and been asked enough questions that we’ve realized that we might actually need a FAQ section.  So here goes.

Do twins run in either family?

No.  But that only applies to fraternal twins, anyway.  And if you think real hard about it, can only be carried down through the mother’s side.  (Quick biology refresher: fraternal == two fertilized eggs, kids are no more similar than other siblings; identical == one fertilized egg that splits, kids have the same genetic material).

Other fraternal fun facts: there are, like, TONS more twins now in the United States than just a scant 30 years ago, by like, some really high percentage that I am too lazy to look up right now.  Some fraternal twins, of course, are due to techniques like IVF and even Clomid, but for some bizarre reason, older women who have already had a baby are more likely to have fraternal twins if they conceive again in their 40s.  (That’s a nasty little trick, isn’t it?) 

So how do you get identical twins?

Nobody knows.  Identical twins are just a fluke.  Or in fancy medical language, an anomaly.  One perinatalogist actually called it a birth defect (because “it’s not supposed to happen.”  She continued: “Let’s hope this is the only birth defect.”)  This is the same one who used the words “dead baby” during our consultation.  I don’t remember the rest of the sentence because I was so shocked.  I hadn’t heard those words spoken together since my brother went through his “dead baby” joke phase in eighth grade.  Don’t worry.  We got her back.  Stuck a “kick me” post-it on the back of her scrubs. 

So nobody knows why a fertilized egg suddenly splits, although I do recall having a serious bout of hiccups in late July.  It could also be that I’m Gary’s friend.  Gary has FIVE friends who have had twins in the last two years.  (Needless to say, Gary’s wife is a leetle worried.)  Of course he told me this AFTER we told him about the twins.  Thanks, Gary.

How do you know they’re identical?

This is a question you would only ask if you’re up on your twin reading.  It’s like this: all fraternal twins have their own little sacs to grow in.  (Placentae).  And in the identical case, if they split early, they will also get their own placenta.  And nobody will know whether or not they are identical (if they are the same sex) until after they are born.  Since fraternals can look alike, too, in some cases, there’s really no way to know without a DNA test.

On the other hand, if the egg splits late, the babies will share a placenta.  And if the egg splits really late, there’s a one in 25,000 chance that the babies will share both a placenta and an amniotic sac (or as the midwives call it, the “bag of waters.”  Awesome.  It’s like the first line of a haiku, isn’t it).  Anyway, so I burped instead of buying a lottery ticket and we blew our lottery odds on two peas in a pod.

This means that our babies will have skin to skin contact in the womb.  Which is pretty cool.  It also means that I just went from the ho-hum ordinary “40 years old and merely high risk” to, as I told Aunt Rita, “DEFCON 4 High Risk” and listening to Dr. Bedside Manner and her “Dead Baby Birth Defect” speech.

But before we delve into all the scary stuff that Dr. Bedside Manner and her staff told us, (no, I will not call her Dr. BM, that is just too infantile), let’s end our first post with a little twin haiku.  This haiku is dedicated to Greg, because I know he likes haikus although I don’t know how he feels about amniotic sacs.  It’s called, “Hiccup Hiccup Oh!”

Hiccup Hiccup Oh!

One bag of waters

Not a lot of room in here

Will you be my twin?

© 2010 Janine Kovac