Answers...


That's all I really want!  Waiting and wondering is brutal!  Tomorrow morning at 7AM, our precious Rachel will have a heart catheter to get an "inside look" at what's going on in that little heart of hers and look for answers as to why her single ventricle is weakening.  Most importantly, though, are the answers we need, that until now, have been kept secret within that tiny little body of hers.  Pressures within her lungs and the chambers of her "half heart" will reveal if she is able to support the second surgery she so desperately needs (the Fontan), or if we need to move toward a heart transplant instead.  Most children receive the Fontan many, many years before the age of 7...  so at this point it's all record-breaking, "odds"-smashing, and statistical anomalies, so only the Lord who made that precious heart of hers knows the answers that lie within...  We're praying that He will share some of those secrets with us tomorrow, so that we can finally begin to understand what the next months... what the next years, hold for our Rachel Hope.


Rachel and I headed to Gainesville earlier today for some pre-op echoes,  EKGs, and at least a thousand consent forms.  I was asked the same question, over and over again today, by every person that laid eyes on Rachel.  "Do you have any questions?"  Ummmm.... I have nothing BUT questions!  Maybe the better question is one I should be asking each of you!... "Do you have any answers???"  I finally settled on asking Rachel's cardiologist if he had any "hunches"...  I mean, at this point, I'll take whatever I can get!  He was, as expected, reluctant to share any "hunches" he might have regarding tomorrow's outcome.  I can't say I blame him.... but geezy-wheezy!  Could you throw me a bone or something???  My own hunch is not a very optimistic one.   I can't really narrow it down to one single reason I feel that way... just an overall consensus of my thoughts in several months of mothering.  Most notably is her weight...  She was weighed the first time she walked into this hospital 5 months ago, just a few days after she arrived home from China- A whopping 37.4 pds!  And today?  37 pds!  It's hard to describe just how tiny she is.  I dress and undress Rachel several times a day and have presided over every shower and bath she's had for 5 months counting... and yet the sight of her naked body still takes my breath away!  The only description that might be close is what a child might look like, walking out of a concentration camp.  It alarms me and I have tried every possible tactic under the sun to get weight on her little bones.  The doctors tell me, however, that this problem is typical with a weakened heart like hers...  All available energy must be saved for the "pumping power" that weak ventricle needs, and there's simply nothing extra left!  I would honestly consider donating some fat cells to my precious daughter's thighs, but I'm not sure if that would be more about ME, that Rachel!!!  :-)

I've entered the medical "fog" that seems permanently lowered over Shands Hospital and I can't say I enjoyed my reintroduction to it's hallways today.  But I am grateful to be surrounded by such an incredible staff of doctors dedicated to giving Rachel HOPE!  I am keenly aware, especially around here, that every day is a gift with our precious girl and that life simply doesn't hold any guarantees for her tomorrows.  So today, I tried to do everything I could to make it a special day for Rachel and me to share...  I enjoyed every single moment of it and I'm pretty sure she did too!  She is well prepared for tomorrow (even without a translator this time!) and has chosen to walk into this scary place again with a smile on her face!  This little girl blows me away...  I still have so much to learn!

It's time I close and head to my hotel bed for a few hours of sleep with the little Princess.  I covet your prayers on her behalf tomorrow as you awaken and throughout the day, that the day's blessings will hold for us... ANSWERS!  Pray for my "mommy heart" too-  that regardless of tomorrow's answers, my response would Glorify Christ!  Thank you, sweet friends for standing in the gap for us again!


8 comments:

  1. Prayers for answers, understanding, comfort, strength, lots of smiles and love along the way. I'm still amazed at your beautiful Rachel and your family(:

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  2. Praying for your precious girl, your family, the doctors and you.

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  3. Prayers for you and Rachel. We are at this exact same place weight wise. Skin and bones is hard to look at month after month. Little hopeful butterflies flutter every time we get near a scale, then no go. Same 36 pounds at 8 1/2. I get the teeny tiny!

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  4. Praying for your sweet girl today, and for her mama's heart (Lori, may the Lord give you His perfect peace)--praying for the answers you are lookinf for concerning Rachel's precious heart.

    Lord please keep Rachel tucked safely under your wing today, guard her heart-- and bring the answers that will in turn bring the help Rachel needs! In Jesus name, Amen

    Blessings~

    Tina

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  5. I have been praying for both of you today. Praying for peace, praying for both of your hearts to be strong.
    Love,
    Jennifer

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  6. I just got off the phone with Jennifer... Praying for your precious tiny Rachel, with the most beautiful heart I have ever seen from afar!

    Hugs and prayers from MN!
    Blessings,
    Diana

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  7. "You will keep her in perfect peace,
    Whose mind is stayed on You,
    Because she trusts in You.
    Trust in the Lord forever,
    For in YAH, the Lord, is everlasting strength."
    Isaiah 26:3-4

    Praying for perfect peace that only He can give.

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  8. Lori, God has placed Rachel on my heart these last several months to pray for her each day as I also pray for my waiting TOF princess in southern China.

    Understanding the heart is still very difficult for me, but I do understand the greatness of our God. And, I know what Jeremiah 33:3 says, "Call to Me and I will answer you." I know you call Him more than you call any of your other friends.

    And, YOU know that God is able to do WAY MORE than you could EVER ask or think. So, in the times of doubt, be strengthened and rise up, knowing that there are hundreds, maybe thousands, that are praying for your family and little Rachel.

    Thank you for helping us know how to pray for her. We are agreeing with every cry of your heart, every tear shed, and every ounce of your faith, is added to ours. May you know His peace that passes all understanding. And, may Rachel's miracle come quickly in Jesus' name!

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