Rachel's Story:

Friday, October 8, 2010

Naptime Turned Chocolate

I had an appointment this morning and by the time I got home, I was so tired, I could hardly move.  Kelly usually watches the boys on Fridays for me while I bring Des to art class, but today she offered to take her for me and bring Isaiah so I could nap while Sam was.  I shut the door behind them and waved goodbye, thinking about how good bed was going to feel and headed up the stairs.  I got to the top and the phone started ringing.  I have gotten pretty good at ignoring the phone, but I decided to go see who it was...mistake #1. 

It was the organ bank calling back.  Yesterday when I spoke to them, they gave me the rundown of how it all worked and it included the morgue.  I had told them that if I was going to donate any of Rachel's parts, she would not be allowed to go to the morgue as part of the process.  It is already an absolute in my birth plan that my daughter is at no time to be brought to the morgue and put in a freezer.  Can't handle that. So this was the call that would answer that and I couldn't not pick up.  So I did...mistake #2.

It was "good" news... they said that they would be honored to work with me in whatever way necessary.  We talked about what would be possible donations from Rachel and what wouldn't - and it looks like the main thing we're going to try for is her heart valves.  "Ok, I can handle this" I thought.  They kept referring to her donation as a "gift" which made me happy to think of the babies lives her heart valves could save.  She told me that there is a huge need for infant heart valves and that they are usually immediately used as soon as they are ready for donation.  She told me they'd need to take her whole heart "Ok, it would only go into the ground anyway" I told myself.  And then she said that I could donate her heart to research after they remove the valves..."or what, throw it away?" I wondered.  I said from the beginning of this that I didn't want my daughter to be a science experiment... She explained how big her incision would be - from her collar bone to her ribs. "ok, they can cover that and put a onesie back on her so I don't have to look at it"   She went on to tell me about the weight requirements for donation and the gestational age she must make it to  - and then started to talk about how they will accept a lower weight since part of the weight that would normally be included, will be absent.  Then she explained that if Rachel was any smaller than this required weight, her valves would be too small to work with and they'd have a hard time implanting them... and that's when I wanted to puke.  "She is so tiny, so innocent, and... so on her way to heaven that I can hardly take it.  Her heart is strong and healthy and I'm already talking about donating it for research."  As I'm having this conversation, I can feel her dancing in my womb.  I am positive that I want to do this, but it's yet another hard thing for my heart to bear.

She said "I am just so in awe of the fact that you are so together (she had no idea that I was bawling and sick to my stomach) and that you are even able to make this phone call or be thinking of helping someone else right now.  It really is a testimony to how strong you are."

At that moment, I let her in on the fact that I was sobbing and told her through my tears "It's actually a testimony to how strong God is"

I tried to go lay down after we hung up, but I couldn't stop crying.  I laid there for a while until I came to the realization that it just wasn't going to happen... so I got up and drank a cup of coffee and ate a few pieces of chocolate to get me through the afternoon.  Not a bad trade in my book - and so much quicker than a nap.

6 comments:

  1. The thought of Rachel Alice being able to create a miracle in another familys world reminds me of the crown of thorns. The thorns are so sharp and yet the flowers so delicate.

    Slow me down, LORD,
    Ease the pounding of my heart
    by the quieting of my mind.
    Steady my hurried pace with a vision of the eternal reach of time. Give me, amid the confusion of the day,the calmness of the
    everlasting hills.
    Love You, Mom

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  2. Stacy,
    My heart aches for you! I am so sorry you had such a hard day yesterday. You are so strong and such am amazing Mommy!I wish I was closer cause I really would love to just hug you and cry together. Everything you are going through, is so hard! I know cause I made all the same phone calls and felt like I was going to be sick through them all! As I read this all I could do was cry cause I can feel your pain in your words.. I am sorry. I am here for you!
    Love, Chrissy

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  3. Stacy!
    So crazy, we were told all through the pregnancy that we couldn't donate anything of Sammy's and what do you know, 1am Friday morning the nurse came in to tell us that because of his size and age he was indeed eligible to donate his heart valves. He did not have to go to the morgue, they picked him up directly from us.

    I'm glad you can get that all worked out ahead of time. I spent a ridiculous amount of time on the phone, while my family held and said good bye to Sammy, answering all the questions they had.

    I'm obviously anxious to talk about Sammy whenever possible so if you have any questions, please feel free to email me...might be different for you as you've had babies and Sammy was my first but I'd love to help in any way possible.

    **melissa
    melisslucido@gmail.com

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  4. Just found this blog. Baby Rachel is being born to a lovely family. My little girl, Talia, has anencephaly. I am 21 weeks pregnant and only found out two weeks ago, so just trying to wrap my head around this nightmare situation. It is comforting to hear from other mothers in the same situation. Here's to our beautiful babies and their precious time with us. :)

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  5. I've been thinking of you often Stacy. My heart aches for you. Katja

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  6. I stand by my original statement on this day...
    & had I known, had you could have just said something out loud...
    I lost it for you after you left!
    I now see you are the strongest Mom I've ever met!
    Lean on me, if you need.
    I'll always be there for you!!

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We so appreciate your words of encouragement!
Thank you! ♥ The Aubes