Monday, March 19, 2012

Cystic Fibrosis (CF) & Our Little Ella

It was a call I didn’t expect.

It was a call I didn’t understand.

It was a call I wish I could ignore.

It was a call that NO Mother is prepared for.

It was the call that told me Ella had tested positive for Cystic Fibrosis (CF).  I tried my best to listen while the nurse briefly explained the disease that I knew absolutely nothing about.  I wanted answers, but I didn’t want to hear what she was saying.

One minute I’m trying to process this phone call, and in the next I’m hearing the nurse relate words like “CHOC” and “tests” and “specialists” and “life expectancy” to my daughter.  Um, what?  [Insert Momentary Breakdown]

Fast forward about six weeks (a very long six weeks), and today I am happy to report that we are staying positive.   Tests have shown that Ella has genetic mutations on both CF genes, but currently shows no signs of the disease.  We have learned that Ella has one common mutation, and another not so common-- In fact, only one other person in the world has the same two mutations.  Told you, my daughter is special!

What does this mean?  Well, it means that we still have a lot of unanswered questions, BUT it also means that we are going to remain hopeful in that Ella will stay healthy.  CHOC will be monitoring her progress over the next few months, and then annually as she grows.

This has been a lot for us to process and over the last few weeks Ryan and I have stayed pretty silent.  Please know that we truly appreciate the support that we have received.  We are beyond grateful to those who have been praying and continue to pray.  So many prayers have already been answered and through all of this we are still feeling blessed.  We know that God is holding Ella's hand (actually, all of ours) to guide us through this.

Monday, March 5, 2012

Ella is Eight-Weeks

Happy 2-Month Birthday Ella Kate! [Yesterday]

I refuse to believe that Ella is already two months old-- She is already getting too big, too fast.  Sometimes I wish there was a pause button, but on the other hand, everyday brings something new and I can’t wait to see what she’ll do next.   I wake up every day knowing that she has something special to share with Mommy.

Like, the way she stretches and squints her eyes when she wakes up.

Or, the way she smiles when her eyes first open in the morning.

Like, the way she laughs when she finds herself in the mirror.

Or, the way she fusses when Daddy is tickling her feet.

Like, the way she nuzzles into my chest when she surrenders to sleep.

Or, the way she positions her hands over her eyes when she’s dreaming.

And, for the first time yesterday she, get ready for it:  Rolled Over.  All by herself.  This was definitely a “too big, too fast” moment for Mommy.  I took a moment to soak it in and it suddenly hitt me-- She’s already growing up.  Sigh.

Sigh again.

I don’t know exactly what my little lady holds for tomorrow, but I do know that I better start bracing myself for more of these moments.  Note to Self:  Remember to accept these moments, these are the moments that it’s all about.  I <3 being a Mommy!

I know, I know, a little mush-gushy, new-Mommy talk going on, but seriously-- If you woke up to Ella’s cute little face everyday you would be talking the same way.


Wouldn't You be Mushy-Gushy Over this Face?


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Ella Kate,

In two short months you have turned Mommy and Daddy’s world upside down, in the absolute best kind of way. We find ourselves getting lost in everything that is Ella, and it is a pretty great place to be.  Thank you for sharing all that is you with us.

Thank you for your smiles-- They always remind me how lucky I am.

Thank you for kisses-- Okay, maybe I steal those.

Thank you for letting Mommy and Daddy sleep (most nights)-- Seriously, thank you.

Thank you for being you-- Because you're pretty darn special!

XoXo,
Mommy & Daddy