Wednesday, September 18, 2013

What Did You Expect?

You can always tell the new ones.  You know, the new parents that are coming into the NICU for the first time.

The mother is almost always holding her belly, supporting that empty space where just a few hours ago there was a baby, and the dad is either pushing her in a wheelchair or walking right behind her, usually with a protective arm out to her.  Not necessarily touching her, but an arm there as if to catch her in case she falls.

Or maybe it's the other way around.

Why do the dads always walk in the back?  Chivalrous?  All of them?  I doubt it.  Sacred silly?  Probably.  And in the name of ladies first, the men propel their wives in front as a sort of shield.

But that's ok.  We women are used to it by now, and besides, we are the ones that just labored through childbirth, whether naturally or with medical intervention.

There's a deer-in-the-headlights sort of look about these couples that find themselves in the NICU for the first time, and a nurse usually greets them in an almost too cheerful voice and points them in the direction of their baby.  Mom and dad hold back a bit and let themselves be led to the bed that holds their newest, tiniest one, and gather around and stare with a look of disbelief on their faces.

How did we get here?

I can speak authoritatively on this subject because I am on my 49th day of sitting beside Hazel Grace's isolette which gives a clear view of all of the comings and goings of the main entrance to the NICU.

I think that anyone who has not had a NICU baby before can have no idea about what goes on behind these doors.  The list of people who get beyond the front desk is a short list...only the most privileged can get beyond the lady who sits at that desk and guards our babies like an eagle guarding its nest.

No wristband?  No entrance.  It's that easy.

But the identifying letters and numbers on Jimmy's wristband have long since worn off and the band itself has come apart, but that's ok because they know us now.  The guards at the main doors to the hospital let us in at any hour with a smile and a biggie...we know you...

you belong here.

Hazel Grace's numbers continue to creep a bad way.  She's now at 27 when just last night she was at pressures of 'only' 24.  And as I talk to my mother about this, and about the different things that could be coming down the pike for our sweet baby Hazel Grace, she tells me,

'Well, if anyone can handle it, it's you.'

Ummm...thanks, I guess?

I was looking online at some information on a procedure that Hazel may need if her breathing does not improve, and a quote from one of the mothers on the video clip really caught me.

She said:

'Your standard of normal has to be determined internally versus being determined by somebody else's standards.'  

How so very true.

This is not what we expected when we found out that I was pregnant with Hazel, our fifth child.  I never dreamed that I would be sitting here, watching my baby breathe and rejoicing with every rise and fall of her tiny chest,

but this is our 'new normal'.

And accepting this 'new normal' is what gives me the courage to stride through these doors and flash my wristband with confidence.

This is my life and Hazel Grace is a part of our family, no matter where she sleeps.

So I turn and catch the eye of the new mother hesitantly stepping over the threshold of the NICU for the first time, and I give her a smile.

A smile that says, 'It's ok.  It's not what you expected, but it is what it is.'

Welcome to your 'new normal.'

And I cast about in my mind for a stronghold, a verse to hide in when my courage begins to fail, and I land upon this:

Proverbs 23:18
Surely there is a future and your hope will not be cut off.

And my eyes turn back to my sleeping, breathing baby and I let my forehead rest on the quilt that covers her bed and protects her from the overhead lights

and I whisper to my sweet baby Hazel Grace

You weren't what I expected,

but how could I wish for anything more?

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