Prematurity Awareness Day: Remembering to Breathe


2 AM and she calls me ’cause I’m still awake

~Anna Nalick, Breathe~

I couldn’t sleep. It was time to pump again. If I did not pump, I stood to lose the precious supply of breastmilk I struggled to establish. Every three hours I hooked myself up to a yellow hospital grade Medela pump. The plastic horns were cold. Hard. Definitely not the warm natural manner in which I expected to be providing milk to my new baby girl. Never-mind she was in Atlanta about an hour away.

I sat on the couch, in the dark, hooked up to a whirring machine via tubes. 70+ miles away, my daughter was doing the same thing, hooked up to machines, whirring and straining to keep her alive.

‘Cause you can’t jump the track, we’re like cars on a cable
And life’s like an hourglass, glued to the table
No one can find the rewind button, girl.
So cradle your head in your hands
And breathe… just breathe,
Oh breathe, just breathe

~Anna Nalick, Breathe~

She was a little over 4 weeks early, my second daughter. A late-term preemie but a preemie none the less.

We had no idea she had a cleft palate. Or a recessed jaw. Or a compromised airway. Or a floppy tongue.

No idea she would be in an ambulance less than 24 hours after birth heading toward a NICU in the nearest large city.

No idea we were about to get a crash course in medically fragile infant care.

No idea of the plan to take our lives and turn everything completely upside down.

The plan was to have a baby. Go to the hospital, give birth to a healthy baby, nurse, go home.

Our plan failed. I failed. I wailed. I cleaned. I screamed. I cried. I wanted to leave her at the hospital. She was not mine. The hospital had made a mistake. They could keep her. I could not do this. I couldn’t. I just… I…. I was delusional. In shock. Processing but yet…. not.

Detached. Clinging to a series of routines. Clean, brush, wash, change, pump, meds, yell, scream, argue, repeat.

Stuck at home.

What I wouldn’t have given to have had her stay inside for a few more weeks.

To have known before we had her of the issues we would face.

But we did not.

I do not know if knowing would have changed a damn thing. I think it would have sometimes. But then I realize I cannot change what has been. Only what will be.

There’s a light at each end of this tunnel,
You shout ’cause you’re just as far in as you’ll ever be out
And these mistakes you’ve made, you’ll just make them again
If you only try turning around.

~Anna Nalick, Breathe~

The day we were to learn how to place an NG tube, I sprained my ankle as I got up from pumping on the couch. My husband freaked out along with me. Then I instructed him to bring me an ankle brace and ace bandage, bag up some ibuprofen and tylenol, and grab an ice pack. There was a grown up hospital across from Children’s. If things got worse, I would go, I promised. I never went. The nurses asked why I was limping. When I told them, they chided me. I did not care. I had limped around since arrival. 42 hours of labor wracked my body. I had the shakes, fever, signs of trauma. I kept going. I burned and re-tore. I should have slowed down. Rested. But I could not. My daughter needed me so I threw myself gleefully under the bus, a Cindy Crawford Pepsi ad smile glued to my face.

Why?

Because this is what a Mother does. Right? Right?

Everyone told us just get through the first year. The first year is the worst.

What they didn’t mention was the follow up appointments. The speech therapy. The potential for behavioral disorders. Allergies. Orthodontia. Additional surgeries. Ear Tubes. Feeding Tubes. Depression. Developmental delays. Hell.

They also did not mention the joy we would feel when our daughter, at four years old, finally blew out candles on her birthday cake all by herself. I cried.

Or the joy when she finally started talking and could TELL us in her voice instead of with her hands how much she loved us.

Or how much joy would spread across her face as she blew up a balloon after surgery #6 which created a pharyngeal flap to close off excess nasal emission of air previously preventing her from blowing up a balloon.

Or her giggles when she first blew bubbles.

Or how big we would grin as we listened to her teach her 2 year old brother talk.

How good it would feel to as she finally made progress.

How good it would feel to understand 80-95% of her speech instead of 25-50% of her speech.

How good it felt as we both recovered from depression and felt the sun’s warmth on our faces and in our hearts.

How grateful we would eventually be to God for carrying us through such a huge storm.

2 AM and I’m still awake, writing a song
If I get it all down on paper, it’s no longer inside of me,
Threatening the life it belongs to
And I feel like I’m naked in front of the crowd
Cause these words are my diary, screaming out loud
And I know that you’ll use them, however you want to

~Anna Nalick, Breathe~

When I became pregnant with her brother, I began to blog here. Not so much for others at first, but for me. I needed the support. I needed to vent. I needed to know I was not alone. Writing became a solace for me.

I know I am not alone.

You are not alone.

We are together.

There are thousands of us scattered across the world, just as scared as the next one. But we are not alone. We are not alone.

But you can’t jump the track, we’re like cars on a cable,
And life’s like an hourglass, glued to the table
No one can find the rewind button now
Sing it if you understand.
and breathe, just breathe
woah breathe, just breathe,
Oh breathe, just breathe,
Oh breathe, just breathe.

~Anna Nalick, Breathe~

Today I breathe. In. Out. Just as before.

But everything around me, in me,  has changed.

I have changed. For the better, I think.

Today I am stronger. I am braver. I am not stuck in that moment. I move forward. Not because I have to but because I want to do so. Because I choose to do so.

I am far from perfect. Far from June Cleaver.

I am me. Unapologetically me and unapologetically me as a mom. I do not worry about what I am doing right or wrong according to others. I don’t worry about what she says or she says or she says. What she says does not matter. All that matters is if my daughter has laughed with me today. Has she felt loved? Has she been hugged? Is she warm? Clothed? Fed?

Our house is a wreck. My kids watch TV. My kids eat junk food occasionally. I do too. We are imperfectly perfectly us.

And for that?

I am grateful.

So I breathe. I exhale. I move forward as an empowered unapologetically me.

The day I gave birth to my daughter four and a half weeks early was the same day I gave birth to a stronger me.

It just took me nearly five years to really figure that part out.

(This post is part of the March of Dimes Blogger’s Unite to Fight for Preemies event. You can learn more about Prematurity Awareness at the March of Dimes website.)

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7 thoughts on “Prematurity Awareness Day: Remembering to Breathe

  1. What a beautiful post. As a preemie myself born 8 weeks early, I say thank you to all the moms of preemies who are speaking out to support one another. It’s easy to feel isolated, and this post, this blog, is such a lantern in the night, I think. I wish there had been something like this those 32 years ago when my mom was trying to figure things out.

    Thanks for your words and your work with mamas!

  2. Thank you for sharing. I’m reminded of my brother, born 5 weeks early; my sister, born 7 weeks early and struggling with cerebral palsy ever since; and my son, born 1 trimester too early. It’s a tough road, but it does make us stronger and puts things in perspective.

  3. What a beautiful, beautiful post. Just over three years ago, my closest friend had a baby born… a few weeks early… with cleft palate and PRS. I know the road she and her husband have walked has not been easy, and they had an easier road than many. Your post reminded me of *her* experience of prematurity… and the friend I have currently in the NICU with her preemie… and so many other moms (including my own) who have been there. I am so glad there are blogs and FB and ways for people to come together more around fighting for preemies now. Your post reminds me that we do not need to forget about their moms in the process… and that is too easy to do.

  4. What a beautiful post. Thank you so much for reaching deep within to share the good the bad the up the down and everything in between. It is Moms like you that will help make a difference for babies everywhere. On behalf of the March of Dimes, thank you for participating in bloggers unite today. We fight for preemies everywhere – because they shouldn’t have to.

  5. Beautiful telling of a story so familiar to me. You are brave. And strong. I also feel that our preemie experience has done that for me. I’m not perfect, but I’m a better me than I would have been.

    There is a story that is told among preemie moms that you have to mourn the baby you lost (the one you expected) before you can celebrate the baby you have. I think that is so true.

    Today my 24-week twins share a their birthday with Prematurity Awareness Day — November 17. I felt that was such an amazing coincidence, that I created a new website of the journal I kept during their five-month NICU stay. It’s called Mike&Ollie: 24-weekers Who Beat the Odds.

    My best wishes for continued good health to you and your family, from one TV-watching, junk-food eating mom to another. Here’s to us!

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