Monday, November 29, 2010

I'll take 6 pounds for 4 valves, Alex

Over the last few months, I have spent multiple hours on the phone with the organ bank getting a plan in place for donating Rachel's heart valves...  I finished the "medical social" interview last week and the "consent form" phone call a few days ago.  As we went through that form verbally, they didn't know it, but I started heart felt like it was being cut out too...

There were 12 or more questions, but about 6-7 into them, these are the ones that got me...

"I understand that there is no guarantee that all tissues recovered will be medically suitable for transplant and/or research and that those tissues that cannot be used will not be returned but will be properly disposed of according to medical regulations"   - "yes" I said...  deep breath...

" I understand that the New England Organ Bank will make every reasonable effort to minimize any visual change to the body and any delay in the funeral arrangements"  - "yes" I heard myself say and that's when I lost it.  Some things are too much for a Mama's heart - taking out my baby's heart and thinking about what kind of "visual changes" that will bring is one of them.

"I understand that all charges associated with the medical care provided to the patient as well as funeral expenses remain the patient's responsibility"  "oh, I wasn't aware of that" I said, "never mind, I'm not interested" I continued and they got quiet...  "just kidding" I laughed.  I had to lighten it up for myself :o)  I was told once that I hide my feelings behind humor... and they said it like that was a bad thing!  Works for me.  Laughter is the best medicine some times.  I won't tell you how I responded to some of the medical social questions...  I will say they were laughing.  She actually thanked me for the laughs at the end of that call. 

Man, this has been a tough part of this journey.  I pray that Rachel will be big enough and that the recovery will go smoothly so that there will be other babies who live because of her. 

I just got a call from them again, checking in to make sure I'm still scheduled for Friday...  I asked what the plan was if Rachel lives long enough to come home with us.  She said "well, that's a good question, we hadn't thought of that" - I had thought of it, but kept telling myself it wouldn't be necessary...  well, it just might be.  This girl is a strong cookie...  so, let's think about it!

OK, so since I started writing this, they just called me back again.  Apparently the requirements for weight have changed.  Rachel will need to weigh 6 pounds on Friday in order to donate her heart valves.  (They may consider it if she's really close)  On Wednesday she weighed approx. 4 lbs 7 oz.   I told her that I was going to send out a prayer request and that I am sure that Rachel could weigh 6 lbs come Friday... Please join me in prayer for this...what a testimony that would be to God's power!  I think they have pretty much written it off as not possible... with God, all things are possible!

PS - If my title makes you wonder if I'm on something... no, I'm not,  just "hiding behind humor" as usual - however dry it may be...


  1. I've been following your blog for several weeks now and just wanted to say how amazing you and your family are. My thoughts and prayers are with you daily. God Bless.

  2. Thank you! What a delightful family! Sweet Rachel's a very strong & special spirit. :o)It's my belief that children, such as Rachel, are protected from all the evil & ugliness in this world so that they can one day serve the Lord in a fabulous fashion beyond our comprehension!:o) Sounds like a blast, don't ya think? ;o) Do you realize, donor or not, Rachel has already touched over 40 THOUSAND people who have followed your blog? Countless Facebook posts. She IS already here, if not in body, absolutely in spirit! What a FABULOUS daughter you have and her Momma is pretty darn amazing too. ;o)

  3. Come on Rachel! You can hit 6 lbs! Makes me think of gambling... Mama needs a new pair of shoes! Or, in this case... baby needs new heart valves! As always, your bravery astounds me...

  4. I'm hoping for a beautiful day this Friday; I'm hoping for amazing news on your blog afterwards; I'm hoping for many photos of baby Rachel here - photos of the Aube family holding her precious Rachel - who will be breathing and alive.
    I'm hoping Rachel's vault will grow spider webs all over it because it won't be needed for a long while.

    I'm hoping for all the fantastic things God can make, as I have seen miracles happen and dreams come true!
    You'll all be in my prayers this Friday.

    Love from Redwood City, California

  5. Praying for 6 lbs!!! Love and prayers sent your way today!

  6. Dear stacy!
    Just know, that I think of you, pray for you every day. I remember the Day I Found your blog months ago... It was such a relief to me, there is no german blog where someone would Share our situation. So i finally felt something like company on my journey by sharing rachels Life. Thank you a Lot for that!
    Now you are already so close to the Big day and you are going to experience what we are waiting for, and what we Fear so much at the Same time. Unbelievable. I will follow you soon.
    I am so convinced that you will Be carried through the painful moments by gods love and grace! I hope for all your hopes to become true and i am looking forward to getting to know that beautiful Little girl That leaves her mark all over the World, but more importantly (for me!) my very personal life.
    Far from you in Kilometers but close in thoughts and prayers, i'll stay connected.
    Lots of Love and blessings,

  7. I was just recently directed to your blog, and my emotions are now all over the place - I can only begin to imagine how emcotional things are for you right now. I've lost a baby also. Hannah Jane was 6 weeks old, and had a congenital heart defect that was undiagnosed... had it been diagnosed, she could have had surgery to correct it. We had no clue that she was sick, or that she would be leaving us... and I have often looked back during my pregnancy and only wish I had known to cherish those moments a little more - every little bump, kick, rollover, etc. It's been 11 years now, and my life has definitely not been the same since then. She taught me SO much in her short little lifespan, and has definitely made me a better mother (we now have five beautiful healthy children!). I have often thought about how our lives could be, would be different if only she had lived... but then I can't help but think, how different of a person I would be now. I would give almost anything to have her back, but at the same time, I truly believe that everything happens for a reason. It's hard concept to grasp when you are at the worst of times, and my heart totally breaks for you because I know the long journey you will have ahead of you. God Bless you and your entire family!

  8. Praying for 6 pounds and for Rachel's Birthday. We love you guy's and will continue to pray for you always.

  9. Praying for a blessed birthday for Rachel. Her story has touched me deeply. I know that God brings blessings during trials. I only hope to have the courage to face trials as you have and seek the blessings that are all around. I have three healthy grandchildren Isaiah 4, Alannah 3 and Laila 3 months. I cherish them and are greatful that they are healthy and Rachels story has made me realize to be truly thankful even during temper tantrums. I work at a crisis pregnancy center and we are all praying for your family and that God's peace and will be done. Wish all our abortion minded clients would read your blog and understand that the life they carry is a special gift from God and that every life is important. Rachel has touched thousands and has yet to take her 1st breath. God be with your family


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