Unattractive Truths

Julie at A Little Pregnant just reviewed a new book that features (among many other stories) the details of the author's time in the NICU.  Both Julie and Ayun stole at least one of those ubiquitous blankets (on display from coast to coast on A Baby Story) from their child's respective NICUs.

(In other news, that's one more item on my never-to-be-resolved NICU regrets list.  Thanks, Julie, for bringing it to my attention.  No evocative burgundy-and-turquoise-striped flannel for me.)

To complete her review/blog tour stop, Julie asked Ayun whether she would share photos of her daughter in said blanket, because Julie posted photos of her son wrapped in one.  Halliday sent along the photos, with a note explaining that she'd sent two photos because they were so "crazy alarming" and she didn't want to scare pregnant newcomers.

Julie's reactions ranged from a defense of the beauty of her own birth experience (and, if I may be so bold as to extrapolate, the beauty of her son, in all his incarnations), to a defense of truth-telling about bad experiences.  She asked her readers, Are we careful with our unpretty truths?

I don't have the mental energy to tackle the question on a global scale, but I have posted photos from the NICU, so I can answer the question at a micro-level.

First, this was what?  My second blog post?  I could spend many paragraphs parsing it (I'm especially uncomfortable with my apparent manipulation of other blog writers' grief stories to make a rhetorical point) but I'm going to let the writing stand.  Let's just focus on the photos.

Notice that I used my children's baby photos to argue for careful treatment decisions during ART.  I used my babies' photos to demonstrate the dangers of multiple-birth pregnancy.  I used the photos to scare people.

Wow.  That strikes me as Not A Good Thing for either Julie or Ayun.  I'm neither celebrating the beauty  nor guarding against other people's fear.

I feel pretty confident that no parent wants, not ever in a million years, to see her baby in the situation you see in those photos.  All three of my babies came home with bruises on all their hands and feet from blown IVs, and small white scars on their cheeks from the tape used to hold their oxygen tubes in place.  Does anyone want to contemplate the physical pain they experienced acquiring those scars?  Why should we want to look at the photos?

But I wanted to look at the photos.  When you're pumping while your baby's in the NICU, everyone tells you to look at photos while holding blankets or clothing or tiny hats.  I spent hours gazing at those photos.  As Julie points out, these are the photos we have.  Everyone wants to document the first days and weeks of their baby's life, and these are those documents.  That was their life.

Still, they're not easy photos for some people to see.  I couldn't drive for two weeks after the babies' birth, so I had to rely on friends to take me to the hospital on days when Calder taught.  (Our NICU closed to parents from 9 to 11am during rounds  -- I was deeply amused by Halliday's recommendation that NICU parents move onto the units for the duration of their babies' stay -- so I chose to stay home until almost noon.  I second-guess that decision now, but I was exhausted, and I had been on strict bedrest for 12 weeks by the time I delivered, so I suppose there were physical limits to my endurance.)  One morning, one of my very best friends came through town to see friends and offered car service.  Of course I showed him photos of the babies as soon as I got into his car.  And there was this silence.  It's hard to say "What a beautiful baby!" about a photo of a small creature covered in wires.

It's still the best thing to say, though.  Everyone should practice, in case you ever meet someone who has a preemie: "What a beautiful baby!  Look at those fingers!  That hair!  That little nose!  What a beautiful baby!"

And my friend's reaction didn't turn me off sharing the photos.  On the contrary, I think I became even more in-your-face about it.  These are my babies.  This is our life.  Wanna make something of it?  I was hardened.  I was tough.

Until I stopped.

The babies were baptized in June, and a whole bunch of relatives came out for the event.  Wilder's godparents asked to see some of the early video footage we'd taken, and the first section was footage Calder shot during the 24 hours when I was hooked back up to magnesium sulfate and confined to my bed.  I had looked at that footage repeatedly while the babies were still in the hospital, and I had thought I was fine with it.  Look at my beautiful babies!

Only, we played the video that day before their baptism, and all of a sudden I was huddled on the couch, silently sobbing.  I had this overwhelming sense of responsibility.  Here were these precious healthy babies in front of me, and they went through all of that.  And because of me.  My choices.  My body.  My fault.  That's what the video meant to me that day.

Now I vacillate between reacting to the photos as documents of the ultimate maternal nightmare and realizing that they capture my children in the earliest stages of their continually amazing lives.  The kids have, by looking at the photos themselves, pushed me to a more matter-of-fact point of view.  The kids went through a phase before and after their third birthdays when they wanted to hear their birth story constantly, and look at all the photos over and over, and not one part of the story, not one image, ever fazed them.  I was amazed by how healing for me their acceptance was.   The kids didn't seem to notice the wires or the machines or the incubators at all.  These were just their baby photos.  These were just their truths.

We haven't looked at those particular albums in a while now, but I'll be curious to see if there are more questions or reactions now that the kids are older.  One of the citations I found during my triplet research was to an article (not available on-line) about sharing NICU photos with former preemies.  The abstract suggested that some children feel frightened or confused once they're old enough to understand what they're seeing.  I haven't seen that here -- mercifully, thankfully -- but who knows what might change as the kids grow up.

Regardless of all this semi-coherent ranting, let me close with the advice that no one ever took too many photos of their baby in the NICU.  We took a flurry of photos at the beginning but very few by the time the babies were in the step-down unit.  I'd happily trade a stack of flannel striped blankets for a few more photos of the second and third weeks of my babies' lives.  So whatever my very mixed and uncertain feelings are about the reality behind the images, I can say wholeheartedly: take those photos.  Leave disposable cameras and ask your nurses to take those photos.

Better to wrestle with how you feel about them afterward than not to have them at all.

Comments

[Kris]

I totally agree - take the photos and try to heal later. After my twins were born at 32 weeks when I saw a preemie on TV, I would get sick to my stomach. That took a long time to get over.

I loved the part in Julie's post where the nurse told Ayun that the NICU is all about broken dreams -- no matter what the outcome and it's true. It's so difficult to heal yourself when you come home and are caring for newborn(s). But, reading posts like this help me to realize I'm not alone in my broken dreams. Thanks.

[Suz]

I wish we had more pictures. We just took a few and I wish we had more. Although we do have a few NICU pictures, I feel much more conflicted about the picture we have of the three eight-celled embryos we had - only one of which grew into our twins. The truth of our IVF (our two IVF's) is one that I know how to live with. I'm not sure, however, when/if I want to share that truth with the boys.

[SheilaC]

Please forgive my copying of some of my comment on Julie's blog, as it applies here too.

Re: sharing the story of our triplets' difficult start in life...
I volunteer as a contact for newly expectant twin or triplet parents, in our local and national groups for multiple birth families. I am cautious with sharing our own experience, because it was frightening having complications, and having triplets born at 30 weeks. Our story has a happy ending now that our kids are 6 and healthy, but there were so many times that we were terrified for our babies, and for my own health.

For those pregnant moms, initially I recommend good books and websites, and tell how to join local and national support groups. I don't tell them exactly what happened in my own pregnancy unless or until they ask more questions. But I make sure they have access to accurate medical information about the risks of multiple pregnancy, and warning signs of preterm labour or other complications. And I have tried to offer support to a few moms who have suffered losses.

Re: sharing baby photos...
At the time, we emailed our baby photos to many friends and family members, but these days they mostly stay in the albums. This past year our kids did a kindergarten project about themselves, including bringing in a baby picture. I let them choose pictures of when they were home from hospital, and of their first smiles at 4 1/2 months, when they looked chubby and cute and happy. More suitable for a roomful of 5 year olds, I thought, but I felt a little sad at "censoring" our story.

Our kids sometimes look at the very first scrawny red-faced wired-up NICU pictures, while I tell them about what was happening to them. But they like the cute happy baby pictures better, and no wonder.

I've never yet shown them the very first picture of 3 fragmented 6 or 7 cell blastocysts in a petri dish before the IVF transfer. I guess maybe some day we might, but not until they are old enough to understand the biology, and maybe to handle the emotional ramifications. I still find it disturbing to look at, though I'm not sure why. Would you want to see a picture of yourself like that? So fragile and vulnerable and scarcely human. I know they will want to ask which one of those pink blobs is which kid, and of course I have no answer!

We took loads of NICU pictures, and I would write down the babies' weights and any special milestones for each day. I'm so glad to still have those little notes in their photo albums. And I wish we had even more! Those days I thought I could never forget have indeed faded in my memory. The photos bring back a lot of details and emotions, but not everything. Sigh...

[Sara]

As the mom of a 6 year old who showed up at 26 weeks - there is a lot I could say probably. For me, it is also about how perfect Toby is and was - no one expects to give birth at 26 weeks, nor do they expect to have to deal with a child who at 6 cannot walk without a walker etc. - but really? He is utterly wonderful and perfect and I would not change an iota of who he is. Sure, I wish some things could be easier for him - but that is not any different than I wish for his older sister too - who does not have a disability, but who still has challenges to face in her life.

And mostly for me and my partner, the experience really helped us re-set our priorities and we appreciate the important stuff a little more. I am alive, our son is and thriving, lives are better.

We took some pictures, not enough, and stole more than one blanket :)

[Sara]

Actually, "stole" is not the right word for us acquiring NICU blankets - the nurses kept giving them to us.

[Ally]

My boss has a 16-year-old daughter who was three pounds when she was born. Not a preemie, induced a little early due to low amniotic fluid, but no one really knows why she was so tiny, except that her dad weighed barely 5 lbs. when he was born.

Anyway, I'll never forget my boss telling me how she fought to get a birth picture taken of her daughter. That they didn't take birth photos of babies in the NICU and how that outraged her. And how proud she was of that photo, and then one day she looked at her baby a few months later and realized just how tiny and helpless and not like a healthy newborn she looked.

She was still proud of the photo, but I think it was a reaction like the one you described. Realizing what her daughter had been through, when at the time she was only focused on each day, just getting through and believing that everything was going to be ok.

[susoz]

I have some photos of me with my baby in the rooming-in room, where we spent two nights before bringing him home after a month in NICU. It's the photos of myself which give me a shock to look at, rather than the ones of him. The trauma is written all over my face in a way which triggers physical memories.
There are a couple of the baby which make me very sad - one where his abdomen is very distended (he looks so ugly) - that night they did emergency x-rays and stoped his ng intake as his bowel wasn't coping. When we took the photos we were oblivious to that, which is I guess why those photos make me sad.
I remember the first time our next-door neighbour saw him, a week or two after he came home. He leaned into the car to look at him, there was a long pause and he said, very unconvincingly, "Cute!" I almost laughed, as he so clearly was not cute! But he's made up for it since.