137 days of Motherhood

A non-chronological exploration and debrief 

written Sunday, January 27th, 2013

I should be eating breakfast right now, according to my "schedule."  However, if I don't force myself to sit and write sometime, now that the dust has cleared (except the dust that resides on the TV cabinet), it won't happen until the kids head to college...or whatever post-high school endeavors they decide to pursue.  Hey!  I'm a free spirit.

There's so much I have wanted to share over the past 4 1/2 months, nearly 20 weeks or 137 days of motherhood.  Can you believe I've been a mom for more than 1/3 of a year?!  As I know I'm not the only new mom to a baby who spent time in the NICU let alone to one who was born with CDH, my hope is that I can bring encouragement, comfort and joy to someone as well as keep family and friends in the know. 

wonder

So many inner monologues have been swirling around in my head as I try to make sense of everything being a mother and a parent means, of all we've been through to get to this 137th day and how our lives are forever changed in more ways than I'm sure I realize even in this moment.

To begin, being a mother and a parent is freaking insane and awesome.  Evelyn or Evi, as her cousins call her (pronounced eh-vee), is such an amazing, determined kid. Besides the fact that she is a CDH survivor, she constantly smiles and rarely cries...and OK, I'll confess...she has slept through the night since about 9 weeks!!  She loves to laugh, play, watch others play, explore, move and "talk" to us.  She is growing and learning new things each day.  Last night, she was in her Butterfly Cradle 'n Swing with one of her puppy stuffed animals and kept intentionally kicking it until it would fall on the floor.  We'd put the stuffed animal back in the swing with her over and over and she kept kicking it on the floor.  It was hilarious!

I've been trying to process all we went through in those 38 days in the NICU.  Was that really us sitting in the hospital days on end?  Did Evelyn really have CDH?  Could we have lost her?  Of course, the realistic answer to all of those questions is yes.  In the first weeks of finally being home, besides being more exhausted physically and emotionally than I have ever been in my life, I think I was angry and in denial more than anything.  Don't get me wrong, I was grateful, I AM incredibly grateful.  But I was angry.  I was traumatized.  Heck, having an emergency C-section is traumatic enough, but being in the NICU for an extended amount of time is so much worse.  

Evelyn in her first 24hours

Evelyn on her 137th day

If you've ever had a child in the ICU you know that it wears on your soul in such a significant way.  Even if you know that your own child has escaped death and is on the road to recovery death looms all around you.  Within a week's time we witnessed two different families having to say goodbye to their babies (and these are just the ones we knew about).  Additionally, we witnessed what it was like when there is a code in the NICU.  Thank God it was a false alarm, but there are no words to describe how your heart jumps into your throat and you instinctually begin to pray when suddenly you hear nurses across the room, including your's, yelling and running, "Code!" "There's a code!" "Where is it?!"  "It's in bed 28!" 

Click here  to read an article from the New York Times on having post-traumatic stress after a long stay in the NICU.  If this is you, please don't walk through this alone. 

There are many support groups out there.  Get connected!  Heck, you can even email me!

It was probably a couple months before I let myself think too hard about our time in the hospital besides the fact I was learning how to care for a newborn, a newborn that was a little more fragile.  Of course, on that she keeps proving us wrong!  I'll never forget how hard it was in my delirium the first few days calculating how much formula to add into the breast milk (to help with weight gain) and how much milk to defrost.  Oh, how I stood staring blurry-eyed at the recipe posted on my fridge and furiously tried to calculate numbers on sticky note in hopes of making a quick go-to guide.  I'm pretty sure I stood there for a good 30 minutes trying to do what is about 3rd grade-level math.  Fortunately, as time went by, and as all my other mom friends out there promised me, it got easier.  If you're a new mom, it WILL get easier.

Back to the present!  There will be more on the hard stuff later.

On a spiritual note, I'm also beginning to see her in a way I think God must see us sometimes.  I'm holding Evi and she's crying, but I know as parent that everything is okay  and there's no reason for her to be upset.  I can't count how many times I've been upset at God over what ends up being alright in the end or not worth getting my undies in a bunch.  Even though I know in my head how He is right here with me and I have nothing to be worried about, I don't get it and continue to fuss and fight, argue and worry, doubt and fear.  What does worry and fear accomplish anyway?  "It's okay, babygirl, mama and daddy are right here."  I'm quite grateful God's patience level is a lot higher than mine.

I will leave you for now with this video of Evelyn in her swing kicking her puppy.  Sorry if the swing makes you a little dizzy.