March 25, 2011

Update - 3/25, 12:37am




We just got a call from the NICU. Clara's oxygen stats aren't getting up where they would like to see them, so she's going to be put on ECMO in the next hour or so. Chrissy and I are discouraged, but OK. We didn't want her to need ECMO, but are very grateful that she has it as a resource to fall back on now that she does need it. We are praying that this will give her an opportunity to turn the corner and start to improve. Please pray for her to respond well and get better. Neither of us has ever felt the longing that we feel now to have her get better and come home to us. It's hard to process at times that she is in a very serious fight for her life; she looks so perfect and beautiful on the outside.


Chrissy and I are going to try to get some rest. If you're still up, please pray on our behalf. We love this girl.

-Robert

36 comments:

  1. Praying so hard for you all. Hang in there and continue to hope for and expect the miracle.

    Praying,
    Melissa Blunkall

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  2. praying right now. this is all SO fresh still for me. our little hollis went on ecmo on his 3rd day. fight little clara, fight...

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  3. Praying! I'm a CDH mommy but my little guy didn't need ECMO. You can do this little one.

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  4. aying for Clara and for you both as well. Our thoughts are with you especially tonight.

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  5. Praying for a fighting spirit for Clara and peace and rest for all 3 of you. I've witnessed a CDH baby have a full recovery and am praying and believing that your family will see God's healing hand work in a mighty way that can only be explained by HIM! Awake and interceding on your behalf. -Stacie

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  6. FIGHT, BABY GIRL!!!

    On bended knees,

    Olivia

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  7. I will be praying for Clara and the two of through out the day. My heart goes out to you all.
    Annette and Randy

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  8. Praying for baby Clara and Mom and Dad. May God's healing spirit be upon all of you.

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  9. PRAYING FOR LITTLE CLARA....LOVE TO ALL OF YOU

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  10. We are praying and haven't stopped!! Clara is such a beautiful baby! We are praying for all of you as well and know that God will give you peace and strength. We love you!

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  11. Praying right now.

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  12. Praying for Clara! My little girl, Dakota, is a CDH/ECMO survivor. She went on ECMO her second day of life. It is an amazing machine. It allowed her to rest for the rest of her fight. She is now a healthy, perfect 2 year old! HUGS!!!!!
    Jennifer
    Mom to Dakota 12-25-2008
    RCDH survivor

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  13. Praying for Clara! Like Dakota, my son Andrew is a CDH/ECMO survivor too. He was on ECMO for 13 days. It saved his life! He is a healthy almost 2 year old now. I will be thinking and praying for you all!

    Michele
    Andrew's mom 6-15-2009

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  14. Saying lots and lots of prayers for not only Clara but you Robert and Chrissy as well. Hang in there baby Girl. Our love to you guys

    ~julie
    Mom of Kiernan 8-20-08
    CDH survivor

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  15. Sending prayers for you and baby Clara! I am asking my son, CDH angel MJ, to look over Clara as she fights with all her might.

    Megan
    Mom to CDH Angel MJ
    7/25/09 - 8/29/09

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  16. First off congrats on your precious baby girl- Hang in there, things will be up and down by the minute...If i can give you any advice (I am a NICU nurse and a mom to a CDH angel Elli) try to not always focus on the "numbers" enjoy the time with your baby girl, each and every minute and know that each day will bring new and encouraging/discouraging news. If you ever need anything or have any questions I would be more than happy to chat, sometimes its nice to talk to someone who's been there....I will put a link to my blog....www.babygirlreed2be.blogspot.com, ignore that i have not updated it for 2 years, but thought it might be helpful if you are wondering about any medical things.

    cassi reed
    mom of angel elli 8/19/08- 9/8/08
    cvmann5@hotmail.com

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  17. Praying with all my might!! God bless you both and your sweet baby Clara!!
    ~*~ Nurse Kristin ~*~

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  18. Continuing to lift sweet Clara up, as well as mom & dad!
    David & Jodie Baston

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  19. Praying for your baby girl. I'm also a cdh Mother, so I know the ups and downs are so stressful. Know you are NOT alone. I'll leave you a verse that helped me through some of the hardest times.

    "Come to me, all you who are weary and burdened, and I will give you rest." -Matthew 11:28

    http://avaslifewithcdh.blogspot.com

    ~Terri and Ava Helmick

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  20. Praying for all of you! Praying for endurance for the two of you as you manage the ups and downs that are going to happen minute to minute, and day to day. Praying for Clara that the ECMO will allow her body to rest and get stronger so that she continues to fight. Praying for all those who are taking care of her, that God would guide their decisions and plans for Clara and that through their hands He would touch her. Know that you are all being lifted up!

    Ashley Gauthier
    (former Crestridge staffer)

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  21. A kind follower of the blog for my son Ramsey, a CDH survivor, wrote him this poem:

    Our Father who shines so bright
    please give little Clara the strength to fight.
    Make her lungs grow big and strong
    and get her number where they belong.
    Keep your angels by her side
    and guide the surgeons hand with pride.
    In her mommy's arms she'll soon be,
    So God's little miracle we all soon will see.

    Lisa
    rootingforramsey.blogspot.com

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  22. Praying for baby Clara and your entire family. I also added your blog to a list on my blog of CDH fighters to get more prayers sent your way! Thinking of you all.....

    Janna Caravia
    Due w/cdh baby boy 4/26/11

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  23. ECMO saved Abel's life. Abel was put on ECMO 12 hours after birth and just like Dakota, he is a survivor:-) I've learned to have a healthy fear of ECMO but without it we wouldn't have Abel today. We are sending lots of prayers, thoughts and chants your way and I know MJ is looking out for Clara as well:-))
    Mama to Abel Kane
    Born October 22, 2010
    CDH Survivor

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  24. We are praying here in Gainesville, Georgia ! I'm passing the word along. Love to you both and I pray you get some rest. On Bended Knee's, Karen (Natalie , Travis and Wesley's Mom)

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  25. Prayers going up for you all from Canton, GA!!! And also passing the word along....Lord hear our prayer!

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  26. Prayers to you from Thailand.
    You have hope, good care, and a ton of support from the Granite Capital.

    Howard J. Hunt

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  27. God, our strength and shield! Praying for sweet little Clara. Bless you both.

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  28. I will be praying for you and baby Clara. As a mommy and a NICU nurse I see both sides and know that my God can do anything!!

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  29. I'm praying for baby Clara and your entire family.

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  30. Luke 18:1 tells us we should always pray and not give up.

    2 Corinthians 4:16 tells us we should remember that we are being renewed inwardly day by day.

    Galatians 6:9 tells us that we should focus on the harvest that will come if we do not give up.

    Ephesians 3:12-13 tells us that we should find comfort in the amazing ability we have to approach God with freedom and confidence.

    2 Thessalonians 3:13 tells us that we should just keep doing what is right.

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  31. Prayers for Clara,for the doctors and nurses caring for her,and for her parents. Prayers are powerful, miracles do happen. God be with all of you.
    Grandma Razza,
    Ramsey CDH survivor
    http://rootingforramsey.blogspot.com/

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  32. I'm a friend of Heather Hayes & she passed on your info to me.... my 4 year old is a RCDH survivor.... he was put on ECMO his second day of life and was on it for 6 days, then had his repair surgery at 9 days old. There are so many ups & downs with CDH as you know already- & we will be praying for God's peace on you both & sweet Clara!

    Sarah
    lifeaftercdh.blogspot.com

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  33. I am praying for Clara. My daughter was born w/ CDH & did not have to go on ECMO but it was still a very long & hard road, she is now 11 years old. Miracles do happen! God bless!

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  34. Thanks to all of you who have taken time to respond...especially all you CDH veterans. Your support means the world to us.

    Clara's grandmother

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  35. Drove by Brenners two times the day after Clara was born. I shared her story with my 14 year old son who was in the car with me. Although we have not been to a church in years, we both said a prayer for her and even my big brave 14 year old got a little choked up! Many prayers and good thoughts for you all.

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  36. Father in the name of Jesus, I come before You asking You to heal Clare. It is written that the prayer of faith will save the sick, and the LORD Will raise her up. And Her body is the temple of the Holy Spirit and she along with many desire her to be in Good health. The Lord is MY Sheapard I shell NOT want! In Jesus name Aman!
    God Bless you all, in constent prayer!~ Lena

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