Thursday, February 12, 2015

Day 12 - Mary-Kate Martens

This baby of mine isn't a lullaby and kiddie tunes kind of girl.  She's more of an "Uptown Funk" chick.  She is ALL  about that bass and loves her some T. Swift. So it came as no surprise that I found her rocking out to Kelly Clarkson'snew jam with her older sister one day.  And as I sit here in the wee hours of the morning watching her as she approaches her third post-surgery day, I wonder what's going on in that little bitty sedated head that occasionally rears itself in protest.  This constant beeping must be driving her mad. I'm bordering on loony myself and will be more than ready to put a different "heartbeat song" on repeat when this is all over. 

But, really, I'm grateful for that monotonous tone.  This experience so far has been anything but monotonous.  We walked through the doors in our true family fashion, just a smidge unfashionably late, at an unmerciful hour Monday morning.  Time flew by as my husband and I fought over holding our girl and taking photos.  The next thing I knew she being carried in protest through the doors of the OR, leaving me with a look of betrayal that about yanked my own heart out of my chest.

(just before surgery Monday morning)

Then, as we settled into our space and the routine of surgical updates every hour or so,  we were  suddenly summoned to the phone in the waiting room.  The OR nurse informed us that Mary-Kate was having excessive bleeding due to the difficulty accessing her heart.  We found out later that precautions not taken during her previous surgery in China resulted in the left atrium attaching itself to the backside of her sternum.  Which meant a lot of bleeding and a possible need to postpone surgery for a day or two.  Thanks to our rockstar surgeon's skill and all the prayers going up on her behalf, the surgery continued.

We were so excited to finally see our baby girl almost a full twelve hours after letting her go.  She was PINK.  Her fingers and toes were just the most beautiful healthy pink, and she had such a healthy glow all over.  Her oxygen saturation rate was at 100 percent for the first time ever.  I was exhausted but ecstatic to see her, even though she was still sedated and intubated, of course. 

Our girl seemed to be doing wonderfully, and it wasn't long till I drifted off to the sound of the heart monitor beeping steadily.  I'd been cautioned that ToF (Tetralogy of Fallot) babies tend to start having issues a few hours after surgery, but by morning, the attending doctor was ready to extubate.  It wasn't long before she started struggling, and inside of a short three hours, Mary-Kate was put on high flow oxygen, then bipap, and finally back on the ventilator.  Her little body just wasn't used to its newly repaired anatomy.  Her heart rate shot up, her oxygen level dipped into the 70s and 80s and her blood pressure dropped.  And my learning curve took a sharp left. 

Here in the CVICU, the monotonous beeping has been mixed with a rhythmic chaos over the last couple of days.  I've gained some skill at reading the numbers on the screens and deciphering doctor speak.  I've probably driven my nurses crazy with questions, although they'd never admit it.   I've watched as they've balanced calcium levels and bleeding and electrolytes and carbon dioxide levels and fever and swelling and kidney function, along with about a dozen other factors.  It's a lot to take in at first.  And it's a crazy little dance these amazingly gifted people do, all set to the beat of my daughter's heart. 

All the while, her heart beats in harmony with an entirely different song.  The one that connects her heart to mine and ours to His.   I can't explain how I have this sense of calm about her getting through this.  I'm concerned about her and have that worry that a mom always has about her child.  But even when the tears come and the fears flood my mind, they're accompanied by a peace that I don't really even understand myself.  For years, my heart ached with an emptiness I've yet to be able to put to words. Even when I didn't know her, I felt this deep need to get to her.  And when I got to her, I began to realize that the hurt in her heart was way more than physical and that it was exactly why we needed each other.

No matter how hard I fought on my own to get her here faster, this was the time God had set aside for her to fight this battle of healing. If you happened to read my story of how we knew this was our girl, it won't surprise you to know that our God left me a very fitting message in my "Jesus Calling" devotion on the day of her surgery.  "Trust Me  and don't be afraid, for I am your Strength and your Song."  These hardships we endure?  They're His most favored gifts because that's where we find Him. 

(taken just a week ago on her second birthday)

So despite the fact that I'm still watching this sweet baby struggle to find her heart's new rhythm, I know she's going to be just fine.  Before it's over, she'll turn this beat around and have all her nurses rocking out to a different tune, munching on her beloved M&Ms while she does it.  This place might not ever be the same.  In fact, I pray it's not.  In the meantime, I'm more than happy to listen to the beeping of her monitor sing its little song, reminding me He's fighting on her behalf.  Her heart is His, after all. 

I will trust and not be afraid.  The Lord, The Lord, is my strength and my song.  Isaiah 12:2


Andrea O. said...

What a precious child! I look forward to seeing her in next year's blog, home and glowing with happiness!

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