6.14.2009

Reality Check

No matter how hard we think Avery is fighting, it is hard to get past how sick she really is. We try and think about the road ahead and what effect it will have on our family. Will she ever be able to keep up with Kaitlyn? Will she always be weak and sick? Will she ever be able to have her own children? Will she ever even make it that far?! And then we step back and try and realize how many obstacles she has faced and pushed through. It is Sunday morning and we just had a long discussion with Dr. Ebel about her slow progress. We had a set back last night with a drop in blood pressure, so she back on norepinephrine and her pace maker. The short thoughts are that no one is quite sure what the next step is and how Avery will react from minute to minute. The long story is her heart and lungs still have to work in unison. Right now her mitral valve is leaking and mixing red and blue blood together. This not good because we have to close her chest to get her off of her ventilator, so she can breathe on her own, so she can grow and have her second heart surgery, to fix her mitral valve... its just so much! The doctor also commented on her brain activity. He said that most babies that are this complex would not have been given the same chances as little fighting Avery because there is just no reason to try, just make them comfortable until they pass. The only thing they can monitor is how much blood and oxygen will get to the brain. The weeks of sedation and medication along with the early development of playing with toys, feeding, and parental interaction that she has missed is very tough to tell the outcome. But she could always catch up. All in all Avery Mae has defied the odds, led the way, and stumped their minds. She will need alot of physical therapy and practice feeding...which we are patiently waiting to give her.-Shane

18 comments:

  1. Hi Carissa! My name is Bobbi, and I have been following your blog, like all the CDH blog stalkers out there...lol. My little girl was born 3.5 years ago with RCDH. No heart conditions associated. She did have a mild stroke and mulitple brain calicifiactions. She is about 1.5 years behind in most things, but is coming along. Please feel free to check out my blog and re-gain the hope for a great outcome! Avery has defied the odds like you have said, and I pray that you will hold her soon, and take her home....here's the link to my blog, please feel free to check it out.

    http://bobdoble.blogspot.com/

    You will find her story under April, Kristen's run with CDH. I didn't do the 'blog' thing back then, and don't have the wonderful daily posts that all of the families do now.

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  2. Those steps backwards can be so discouraging! We pray for continued steps forwards.
    God has big plans for this miracle baby.
    Don't worry about the therapy. We have two WONDERFUL therapist that have been miracle workers in Chad's life. They do amazing things!

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  3. She has come so far, hang in there!
    Praying for y'all in Tennessee.

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  4. I'm not gifted with words, but God knows my heart! Prayers coming from Lexington, SC!

    Lora

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  5. Many prayers for Avery and your family from New Orleans Louisiana.
    My son Drake was born with LCDH. He was given a 75% chance of survival. unfortunately this was not his outcome. He grew his wings 7 weeks after he was born. I guess what I am trying to say is that no matter the odds, as long as Avery is fighting, you fight for her. No matter the odds there are different outcomes.
    (((((((Hugs))))))))

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  6. AnonymousJune 14, 2009

    Shane, Carissa, and Kaitlyn,
    I find it amazing that with all that doctors know,the one thing they don't know is what God has in store for Avery. Like they said, she has surpassed what they would have ever imagined and keeps fighting and defying the odds. She is making her own path and paving her way for her own future. I am sure she will be talked about among doctors for years to come....the baby girl with CDH who defied odds and did everything against what medical textbooks say. The hardest part of waiting is having patience, that Avery is not on our time for healing but her time and God's time. We are praying that she keeps defying the odds, keeps fighting, and that the setbacks to come are minimal. We love you all so very much! Always in our thoughts and prayers! Danny, Angela, Jake and Sarah

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  7. Avery is a fighter, even in her fragile state, she is a fighter. She has overcome so much and defying the odds that she was given before birth. Praying for wisdom for the doctors that they may find the best course of treatment to go with next for Avery. Like Christy mentioned above as long as Avery is fighting, you continue to fight with her. Praying for you Carissa and Shane during this time. Cherish every moment with precious Avery.

    Thinking of you, Tracy

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  8. I can see how you guys would be so discouraged by all of the struggles that your sweet little girl has already faced, and everything that has yet to come. I hope that you find comfort in knowing that God will take care of you & your family. You will remain in my thoughts & prayers!

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  9. We will continue to pray for Avery and your family. Hang in there! God is good.

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  10. I have been following your blog and praying for your sweet girl! She is such a fighter and has overcome so much already. I cant wait to read about all that she accomplishes:)
    Prayers in NC,
    Kace

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  11. Carrissa,
    My heart is literally aching with yours tonight.
    She's a beauty. You can do this.
    Many, many prayers.
    And much love,
    Jody Landers and family

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  12. AnonymousJune 14, 2009

    Yes, she has come along way and along way to go! You can only follow her lead, she will tell you if she can't go on! Yes the medical community has advice, but each infant follows their own path! They can make amazing strides developmentally once the medical issues are resolved! She is a tough little lady and God chose with wisdom when you where blessed to have her as your daughter! All the other things will fall into place, just take a day at a time! She will keep amazing you with her strength and will to live! God has plans for this little girl, and you get to stand back and watch the miracle reveal itself! Am praying for strength and patience. Hugs Kathy Rae

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  13. I know how hard it must be to hear the doctors reports but Avery has come so far and is fighting.. Please continue to have faith and be strong. My prayers are with all of you!
    HUGS,
    Joanna(mother to Gabi LCDH)

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  14. My thoughts are with yall.

    Just wanted you to know that I have something in common with Avery. I, too, have a leaky Mitral Valve (Mitral Valve Prolapse).

    Hang in there. Ya'll are doing great.

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  15. Truth be told, I'm thinking about little Avery every bit as much as I'm thinking about my kiddos as Tony and I are away for a few days. That means I'm thinking about her a lot!!! I'm praying for all of you when I do think of her. Love to you all.

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  16. Mommy_of_YaDaJune 15, 2009

    She is a fighter and all of us love her and will continue to pray. There are alot of questions, but just let it be for right now. Focus on NOW, and how lucky you are to have her. God will lead the way.

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  17. I love you guys so much.

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  18. AnonymousJune 15, 2009

    You don't know me, but I heard about baby Avery through a co-worker and would just like to say that I've followed your blog ever since. God chooses special parents for special kids, so just know that you have all been hand picked by the hand of God and you are in good hands!!! He is in control, and no matter what comes your way, He knows exactly where you are at! He has assigned angels about all of you, and you're safe! I'm praying for God to grant you the miracle that you need! Keep your heads up! God is there! God bless you all with the strength for the journey and peace in the middle of every storm. Trusting God for a good report soon!

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