Friday, April 3, 2009


We made it past Amy's birthday. We cannot get any answers from any doctors. The only thing they can tell us is that she is a fighter, it's a miracle she is alive, & they wish they could make miracles happen. Its gotten to the point now when a doctor comes into our room we can put words into their mouths. We know they are going to say there is nothing we can do but wait and see. Amy and I went on a rampage yesterday and demanded face to face meetings with any and everyone that has anything to do with Remi's care. If they could not be here in person we demanded they be paged and call us back. Some how we got it. We got every face to face and everyone returned our call. They may not have been happy with us, but we did get more answers. We were sick of getting answers third person. We also needed and need objective opinions. We are in totally uncharted territory and no one knows what to do. The people in charge of her care want to keep on doing what they have been doing for the past 7 days since surgery. We said "no" we want to come up with alternative methods. We have tried magnet therapy, dipping Remi's hand in warm water, and running the faucet. We need her kidneys to start up and start to make urine. A nephrologist will be coming in tomorrow. You may be asking yourself why he hasn't come earlier. Well he was on vacation for the last 2 weeks. When we needed a cardiologist he was on vacation. There is a theme there. We are no turning away opinions. We also want to talk to anyone that may be able to shed light on our baby girl's situation.
Well....Good Morrow


  1. Ben & Amy: I so wish that I knew someone that could give you the answers you both so desperately want. I ache for you all - so much family there to support you, and each one hurting in their own way. I hear your passion and the willingness to sacrifice "whatever it takes" to fight the good fight for Remi. Could you have ever imagined the depth of your love after just being introduced 22 days ago? I remember when I was pregnant with Evan - my dad told me "you are about to experience a kind of love you've never experienced". I thought I knew, but I didn't. In fact, that parent-child relationship was the very argument that I used to try and convince God to allow us to have a baby. I reasoned I could better understand "His" love, if He would allow us to have a child. I didn't even begin to know how profound those lessons would become after God did bless us with a son. How often I am reminded that my challenges, are a small reflection of God's challenges. Sometimes desperate for a quick fix, I'm reminded there are none. He is the answer - the only true answer. It's clear that you both know that. . .I just want to remind you because I know for myself, circumstances sometimes cloud my ability to see and focus. Psalm 139:13-16 says: For you created my inmost being; you knit me together in my mother's womb. I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well. My frame was not hidden from you when I was made in the secret place. When I was woven together in the depths of the earth, your eyes saw my unformed body. All the days ordained for me were written in your book before one of them came to be."
    We love you guys,
    Steve, Vicky and Evan Weaver

  2. Ben and Amy, We keep praying multiple times a day for Remi and you. When my mom was in the ICU a few years back I had the same responses from the doctors and staff! One nurse told me she was not going to make it more than a few days because her kidneys were shutting down. Another nurse told me something else. Doctors didnt want to tell me anything! EEEERRRR! I was so frustrated and upset! I just wanted someone to tell me what was going on and what to expect! I talked to my Aunt Dawn who is a head nurse at St. V's and she told me to DEMAND a meeting with all my moms docs. (just like you did!) Finally I got some answers. But it was like pulling teeth to get that one doc to take 15 min to talk to me! I was apalled by thier selfishness! I dont mean to sound like Im bashing the doctors, but boy... A little more effort to consult the family and patients is appreciated. Even though Tim and I have not met Remi we feel like we know her because we think of her and pray for her throughout each and every day! She is BEAUTIFUL! Lots of hugs! Tim and Amanda Rabara (Joe's Sis)

  3. I am new to your blog, but please know that you are in my thoughts and prayers. Remi is a beauty!

  4. Sent over to your blog via a Twitter link. You're in my thoughts and prayers.

  5. You are all in my thoughts and prayers daily! She is just gorgeous and so strong, like her parents!

    I ran into your mom and dad yesterday and they chatted with me for a bit. Please let me know if there is anything I can do, I am most definitely spreading the word!

    Have your dad drop me an email, I made a blog button you can post here so people can grab it and help spread the word...and love, of course!

    Brittany Gibbons

  6. Ben & Amy,
    I had been hearing a lot of prayer requests for your little girl but until I was able to see this blog I was unsure of what was going on.

    You are all in my thoughts and prayers. What strong and amazing parents you both are and what a strong little girl. I pray that you get the answers that you so desperately are looking for, and that Remy is able to fight off anything and everything she can and he a healthy and happy baby.

    It has been years since I have seen either of you but my prayers are certainley with you all right now.

    Brandy Heitkamp (Davis)

  7. Ben, sorry to hear of this. Travis told us and we are praying for your family and little bundle. God Bless! jamie Briner Hand

  8. ben and amy..we want you to know our thoughts and prayers are with you and litte remey..

    bob and kelley briner (trav's parents)