Monday, September 17, 2012

twenty-nine week update

I got to see my tiny girl again today.  She weighs in at 2 1/2 pounds of sweet deliciousness.  She had the hiccups, was head down, and had all her arms and legs curled into one spot in what we all know as the classic fetal position.  I think she was napping because she didn't move as much as she had before and was all curled in a little ball.  

But, once again, the doctors had no good news to deliver.  In fact, they diagnosed our little girl with two new conditions.  

Situs Inversus.  This means that Evie's internal organs are a mirror image of what a normal healthy human's would be.  Her heart is on the right side instead of the left, etc.  In the grand scheme of things this condition doesn't really cause any new problems on it's own and seems to be more of a side effect of her kidney/lung problem.  

Critical Aortic Stenosis.  This is the bad one.  It means that Evie's aorta (the large artery responsible for pumping blood out to the body) is way too narrow and will be incapable of sufficient blood flow.  So basically our time with our baby girl will be even shorter than I thought, possibly just a few minutes.  

For some reason I had my heart set on Evie living at least two hours.  I think it was because that's how long Angie Smith's daughter lived.  I assumed I would be just as fortunate.  But alas. 

I suppose I was sort of counting on that time with her even though I had no real rhyme or reason.  Just hope.  Upon realizing that probably wouldn't happen I did get my heart broken all over again.  But I felt the Lord whisper to my heart, Are you still going to accept this cup even though I've made it a little harder?  

Yes, Lord.

Good grief this isn't easy but it's my life right now.  And I am currently clinging to these two things:

I will get to snuggle my daughter.  I will get to see her face and her fingers and toes.  And I will kiss her.  Oh my will I kiss her!  Thank you Jesus for that.

The Lord is able to do exceedingly above all we ask or think (Ephesians 3:20).  He knows my pain and my heart and He loves me.  I have to believe that He has something special in store for that day.  I don't believe He will heal Evie, but I do firmly believe He will do something to bless me that day.  And I pray that I will recognize it and be able to share it with you after Evie is born.

Because Evie was all curled up and the doctors were really focused on her heart today I don't have any pictures to share; they didn't give me any.  But maybe I'll just share this piece of custom art a friend made for me.  It makes me smile - I hope it will make you smile too.




6 comments:

  1. Still praying for the comfort of the Holy Spirit to be your strength. Love and prayers to you all.

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  2. thank you so much for letting me be there today...to hear her heart beat and see her little body all snuggled up in your belly.

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  3. Love you Sarah. So sad your time will be so short. I'm glad you got to see her today. I hope they give you a picture or two next time!

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  4. "He Who Holds Us in His Hands"
    When God says no to you, it’s such a blow to you, when all your dreams unravel at the seam, When God says wait to you, and God seems late to you, it’s hard to rest within His will, it’s hard to trust and just be still, it’s hard to simply wait until it’s all made plain.

    He who holds us in His hands, has no problems only plans, He who has control of all, sees the smallest sparrow fall, He who works where no one knows, does not sleep as we suppose, but works in all things, in great and small things, for His own glory, and our best good.

    When God works silently, in ways we cannot see, and troubles multiply so that we ache inside, and God does not seem kind, When hope is hard to find, it’s hard to rest within His will, it’s hard to trust and just be still, it’s hard to simply wait until it’s all made plain.

    He who holds us in His hands, has no problems only plans, He who has control of all, sees the smallest sparrow fall, He who works where no one knows, does not sleep as we suppose, but works in all things, in great and small things, for His own glory, and our best good. For His own glory, and our best good!

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  5. Oh Sarah, my mother's heart so resonates with your when you share your journey. Your meek and quiet spirit, which in the sight of God is of great price, is such an example of what the Lord wants for me as a Christian woman, wife , mother and grandmother. May the Lord bless you and refresh you for today's journey. You are dearly loved and prayed for!
    JoAnn

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