Wednesday, September 28, 2011

Accepting Hard Answers

I heard another song on the way to the hospital this morning, sometimes it amazes me how His hand is working and how He speaks to me through the storm....

"You know me in and out and lovely are your thoughts about me.
How great is mercy. You chose me though I am unworthy.
All that is within me - cries you are holy.
Even when I'm walking through the valley of death.
Even when I'm broken and nothing is left, you lead me on... you lead me on
So I'll pour my tears in the ocean. And I'll leave my pain by the shore.
With your mighty wave you'll sweep them away, till they are no more.
"

Almost two months ago an educated guess estimated that our little girl would only survive another week. She defied the odds.

If nothing else, this proves that Finley is just as stubborn as her mother! It proves that she is the spunky, strong willed little girl that I have always dreamed of having one day. I can just imagine her in there kicking and punching and complaining about being uncomfortable. My heart smiles every time she nudges me. It's as if she is saying "Hey mom, no worries, I'm all good!"

At the same time, my heart is hurting. These past several weeks have taken an emotional toll on me. I LOOK pregnant. I FEEL pregnant. There is a baby growing inside of me. She is active and she makes it known that she is ALIVE! But with every kick comes a reminder of something that I will never have.

It's hard to wake up and face that reality every day. It's hard to go to a doctor's appointment and be told my baby isn't going to make it, then spend the next four weeks LOOKING and FEELING like a normal pregnant woman; getting the quick, not-so-subtle glances from strangers at the grocery store as I waddle around with my one year old, sitting on the couch with Daniel's hand on my belly feeling her move, waking up every two hours at night having to pee. When I go to the store and pass the little girl's section I STILL have to tell myself that I am not allowed to pick out a dress or a bow for her. Simple things, that most pregnant women take for granted (I know I did with Eli), are amplified beyond my control.

I was given some answers today. Answers that no one wants to hear, but answers that I honestly expected.
The doctors suspect that there is an underlying genetic abnormality that is causing all of her problems. There is not ONE thing wrong with her that we can fix or monitor. The main issue is that she is in heart failure, THIS is what will ultimately lead to her demise. However, there are also several small things that are abnormal; her heart is too big, her chest and abdomen are filled with fluid, she has had gradual small changes in her brain.

She can't be "fixed". But I don't think she is broken. I think that her life, even if she doesn't take a breath in this world, will be full. Full of love and purpose.


Next week I have two more appointments; one with my regular OB and one with a new MFM specialist. My OB did a bit of fishing around and found a highly recommended specialist (NOT the same one we have seen in the past!) at a different hospital to perform another level 2 ultrasound for us. We will see him next week and at this point we are leaning towards consenting to the amniocentesis.
The amniocentesis will give us a clearer picture of what is going on genetically. It will also point Daniel and I in the right direction as far as having genetic testing done on ourselves and Eli.

As always, we appreciate the love and prayers from our family, friends, acquaintances, and strangers! Finley has shown us what GOODNESS can come from this world.

3 comments:

  1. I am glad that you are getting some answers. I love you guys so much and I wish I could take some of your pain for you. I know all of us would gladly take a chunk of it for you. Instead we will all surround you with love and try to hold you up when you can't hold yourself up. Make sure you give Finley a good rub for all her JM Aunties. We love you guys!!

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  2. You are strong especially in your faith. It was God who got me through my miscarriage. It was God who held me in His heart when I cried. It was God who gave me comfort and closer. No matter what happens her, it is all part of Gods plan. Keep your faith in God as your comfort no matter the outcome. Doctors don't know what is best, but God does. He will not let you down, He will not give you an estimate, and He will not belittle you. I am praying for you!

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  3. I began following your "story" after I got bad news of my own. I know I have no words to give your heart comfort... but know that the way you're carrying yourself in the midst of this storm is graceful and uplifting in my eyes.
    I'm praying for you. Praying for your precious girl and for peace in your life.
    I don't understand why the Lord puts these trials in our lives, but I have faith that someday it will all make sense.

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