this is not the end.

Jan 18, 2009

well, i hate to have to tell you all that we got the worst news of our lives but it is true. claire’s brain development is more abnormal than we thought and we still have no answers for her future- only that a “normal” outcome looks less likely than before. her brain tissue is thin, meaning she does not have as much brain as a typical infant does; there is no pressure in the extra fluid in her ventricles, meaning her brain is not thin b/c of pressure from the fluid so a shunt will not help; and lastly her EEG showed very abnormal brain waves especially in the left side. she has been having mild seizure-like behaviors for the past couple weeks but they were not detected on the EEG, this doesn’t mean she is not having seizures though. we are starting her on an anti-seizure medicine hoping that this will help the neurons in her brain behave more normally, but it is not guaranteed to work. we are also faced with the fact that her head size may swell and she will need brain fluid to be drained if the ventricles do not stop growing or the opposite-  her thin, unhealthy brain tissue may stop growing and lead to a small head size. we pray that seizure medicine will help, her brain will mature and learn to communicate more effectively and her physical development will be completely normal.

are we devastated? yes. are we angry? yes. but are we giving up? never. claire is still the same beautiful, lovable miracle that she has always been. this new information does not change that. we will never stop fighting for her and working hard to find ways to help her reach her full potential- whatever that may be. we grieve for the dreams we have lost, but we will have to find new dreams for claire and still embrace the joy that she brings to our lives. this is the hardest thing we have ever faced, beyond any imagination and expectation but claire deserves all the love, patience, dedication and comfort that we can give her.

she is our daughter, our inspiration, our delight, our precious gift.IMG_0311

by | Categories: faith, family |

11 comments | leave a comment

  1. Allison
    January 18th, 2009 at 4:39 pm #

    Love you Nicky. I have never heard it said better. What you wrote is a true inspiration. I KNOW there are good things in the future for the Vender family!!

  2. jina
    January 18th, 2009 at 6:23 pm #

    What to say …we love you three, we are in constant prayer for you, and you have a direct line to a very powerful, very loving God. And we are just a phone call or email away.

  3. Gina
    January 18th, 2009 at 6:33 pm #

    We love you Vender Family!!! You are so right this is NOT the end. I know that God has an amazing plan for your family in all of this. Keep pressing in!

  4. Kavita
    January 18th, 2009 at 7:28 pm #

    Dear Nikky,
    I’m sorry to hear that the news has not been good since the procedure. At the same time, you are all such an inspiration as you fight onwards and continue to never give up. Little Claire is sooooooooo lucky and blessed to have you both as parents. And remember that God would not have put you all in this position if He didn’t think you were all strong enough to weather through it.
    Much love,

  5. Josie
    January 18th, 2009 at 7:36 pm #

    I’m sorry about the news, but you’re right… Claire is such a beautiful baby girl and such a gift. And she has two AMAZING parents who will fight like crazy for her.

    We will definitely be praying for the anti-seizure meds to work and for your family in general. Let us know if there is anything else you need or need prayer about.

  6. Aimee
    January 19th, 2009 at 8:44 am #

    I am sorry to hear this news. All of you will be in my prayers, especially for all the things you mentioned that you wanted to happen for Claire. She is a beutiful baby, a precious gift, and so blessed to have been born to you both.

  7. Mike Olbinski
    January 19th, 2009 at 8:52 am #

    Like everyone has said…we love you guys, we’re praying and you guys are so very strong to go through all this with a great outlook.

    Let us know if there is ANYTHING we can do.

  8. Todd Thompson
    January 19th, 2009 at 10:30 pm #

    Thanks for the update. Praying for you guys. Give Claire a big hug for us. Remember…all her days are written in God’s book (Psalm 139) and that she is God’s workmanship created in Christ Jesus for good works that He has prepared in advance that she will walk in them (Eph 2). God is already using her to bless and make a difference for Him. He is faithful.

  9. Heather Anderson
    January 20th, 2009 at 11:31 am #

    We will continue to pray for you guys. You guys are strong, Nicky what you wrote in your email you can tell God has strengthened you to be a fighter for Claire. Claire is a beautiful miracle and she will bless all. Thinking of you and prayers your way! Love, Heather, Jon, and Bailey

  10. Jason Williams
    January 20th, 2009 at 2:45 pm #

    Hey guys, my name is Jason Williams and I’m in Ryan & Alex’s small group. Just wanted you to know that my heart is aching for you guys. My wife Jessica and I have a little one of our own is the delight of our world and reading your journey only makes my heart break even more knowing how hard and frustrating these past few months have been.

    We will never be able to understand or fathom the great providence of God. Or why we must travel through such deep valleys in this life. But I am reminded of the amazing, incomprehensible sacrifice that God made possible for each one our lives by sending Jesus to the cross.

    We’re praying that you are finding your hope in that truth and in the knowledge that the same God created little Claire to be the beautiful joy that she is. And a great big God story is being told through her journey and life.

    We’ll be praying for you guys tonight at group as well as in the future…

  11. brian kruckenberg
    January 21st, 2009 at 9:09 am #

    you are SO right! What a miraculous and beautiful daughter of God you have there. Thank you for sharing your heart.

    The Krucks love the Venders!

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