7.14.2009

Cried out and confused...

We went to house last night to clean and stay busy while Avery was in lab. They called and said they had found no blockage, just a narrowing. If I understand correctly, the heart surgery repair opened the flow too much and alot of blood is mixing and going to lungs. We showered and took separate cars back to hospital to have alone time. I drove around first and cried, yelled, and screamed!! I am so tired, mad and distraught. Carissa has been crying and depressed going on three days. We are tired of the wires. Tired of the experiments. Exhausted from watching Avery suffer. My role as a husband and father is to shelter my family. We just want to hold her and take off the tape and bathe her. Carissa arrived at the hospital first and was talking to Dr. Garcia. I joined them. The Dr. said they would discuss maybe going back in through her chest and putting some sort of restrictive piece on her aortic valve to slow the blood but it might make it mix more and she could die from infections, bleeding and everything else. Not an option we willing to try!! We cried by her bedside and held her hands. I wanted to feel her grasp and watch her eyes move under her eye lids so we asked them to take off paralytic. I played some songs for her through my headphones and we sat with her until a good friend of who is a respiratory therapist stopped by to check on me. We left around midnight after Carissa talked me into sleeping at the house and not the hospital. It stormed all night and I don't think we slept much. We came back this morning and talked to Dr. Budda. I honestly stand there sometimes and hear the explanations, but it is so surreal like an out of body experience. I cannot believe we have to endure this everyday! He explained the same things about the narrowing and the blood flow and that they are still not sure why she is swollen. Dr. Jaquis is trying to ween her completely off of the nitric oxide to see if that helps the blood...we don't know what the hell is going on at this point. Carissa and I don't want to give up, but we are really close to telling them to stop all of this nonsense and just leave her alone. To me, Avery is basically on a different kind of ecmo...treading water to stay alive. We are in a daze and need guidance from God at this point. Please let this all end soon.-Shane

41 comments:

  1. Olivia (CA)July 14, 2009

    Praying so hard for you all today during this difficult time. What amazing parents God gave to precious Avery. We are praying that He will give you all immense strength and courage as you battle for her life.
    Love, Olivia (CA)

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  2. I'm praying that you both receive some clarity and peace around what God desires for your family. Also the peace and comfort to accept what you're led to decide. Continue to cry out to Him and he will guide you. We have not given up on Avery.

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  3. Alejandro SalasJuly 14, 2009

    we are with you shane,

    Rest in God, leave the situation in their hands, when men can not, it's time that God takes control. God's purposes are not understandable to humans, but he has something for your family. Take your hand and not drop. Avery is not suffering, she is in God's hands.

    forward brother, we are praying from Tamaulipas, Mexico

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  4. I am praying for yall. My prayer last night was for her not to be suffering. I asked God to take all her pain. If she's suppose to be here to just take the pain for her, and if not please just take the suffering away. Im just praying for Gods will...whatever that might be. I am praying for yall as well......yall need healing just watching your baby go through this.....Your story just pulls at my heart strings. I will be having my baby boy soon and as i am ready for him to get here i'm not sure if I really am......much prayer for your whole family.....
    love candice

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  5. The Sublette'sJuly 14, 2009

    I'm so sorry you are all to this point with decisions about Avery. I pray for you all and wish Avery peace. Love to you all. Pat and Holli

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  6. Praying for strength and wisdom for the days and peace and rest for the nights. God is with you.

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  7. I'm so, so, so sorry. Words just aren't enough right now. Even tears shed on your behalf aren't enough. Praying and praying for wisdom, peace, and comfort.

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  8. AnonymousJuly 14, 2009

    Just Praying God's will be done.

    DeLynn

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  9. My heart is broken for you. No words available. Praying...

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  10. I have no advice or words of wisdoms for you but Avery and your family will continue to be in my prayers.

    God bless you all!

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  11. Continued prayers for you and sweet Avery....

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  12. Mommy_of_YaDaJuly 14, 2009

    My heart is heavy. God shed some light, please. Let it be his will. He is good. Avery continues and so I shall continue on with hope and prayer. Will be praying for your guys also.

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  13. Praying for Avery that she will let you know where to go with your decision. Praying that you will find the peace and strength to move forward and find comfort in the decisions that lie ahead. Shane and Carissa, you are amazing parents and Avery loves you for fighting by her side, you will never be giving up on your daughter. Cherish every moment you have with one another and may God help show you the way through the suffering and pain. My heart goes out to you all.

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  14. If my heart is breaking, I know yours must feel completely shattered. The uncertainty sounds unbearable. Avery has come so far! I know you will make the decisions that are best for you and your dear family. I love you guys and think about you constantly.
    Melissa

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  15. Just heartbreaking. You all must be so drained. Praying for a miracle.... from Canada.

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  16. Betsy KosterJuly 14, 2009

    I am so very sorry that Avery' s health is so fragile and you are faced with such hard questions. We have been and will continue to pray for the Lord's will in Avery's life and that He give you wisdom for the decisions that lie ahead. Much love, the Kosters

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  17. AnonymousJuly 14, 2009

    We are praying - my heart breaks for both of you. May God wrap His arms around you and fill you with His spirit. May He give you wisdom and guidance.

    Proverbs 2:6
    For the LORD gives wisdom, and from his mouth come knowledge and understanding.

    God Bless,
    Robin Gaspard Cosenza

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  18. AnonymousJuly 14, 2009

    I pray that God will put His healing hands around you and little Avery.

    Jodi in WA.

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  19. Hey guys, praying for peace and comfort and understanding and most of all clarity on the situation.

    Ashley

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  20. From the mommy of another heart baby, our prayers are with you. Praying so hard for peace and comfort and wisdom for you all. God bless!

    Nancy

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  21. praying for all your hearts. for courage and peace and direction and wisdom above all. And that you never feel alone, no matter what roads lay ahead. Cling to each other and cling to our savior. We are walking with you still.

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  22. My thoughts and prayers are with you.. my heart breaks for the suffering your family is enduring. Trust in your decisions, Avery knows how lucky she is to have you. Have faith..
    Joanna

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  23. AnonymousJuly 14, 2009

    My heart also breaks for you. I think of you often and pray for you.
    Tammy from Ohio

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  24. AnonymousJuly 14, 2009

    I echo what one person said that God's will be done. It does not make it any easier for both of you. I have learned that the last 6 months. I am praying for you and Avery and for peace for all of your family.

    Betty Lou

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  25. Praying that God's will be done. Praying for you guys!

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  26. AnonymousJuly 14, 2009

    ...Just know that whatever decisions you'll make, it will be the right one.

    Continue praying for Avery and your family.

    Dai

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  27. I think about ya'll and pray for you everyday! I am praying for peace that passes understanding.

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  28. AnonymousJuly 14, 2009

    I am sure you both are in a personal Hell I couldn't begin to understand, but I do know it's okay to be angry. It's okay to scream. Some times you have to. I hope peace will come to you and Avery soon, in one way or another.
    Rachael

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  29. Praying for miracles and for unexplainable peace for your family...........

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  30. My heart is just so sad for y'all. My prayers for are peace, understanding, patience and God's comfort! I can only begin to imagine your pain and suffering. Please know that God stands by your side, with His hand on your shoulders. I just wish there was something more we could do to take the pain and heartache away. Thoughts and prayers are with you always!

    Love, Stephanie

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  31. I wish I had the words to lift you up from where you are but I don't. Please know that I am praying that God shows you what path to take. Praying for peace of mind and heart!

    -Lora

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  32. AnonymousJuly 14, 2009

    I wish I new what to say in this hard time. You are always in our thoughts and prayers. What loving parents you both are.
    Peace of Christ be with you always.

    Love, Krysha, and Justin Jamis

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  33. AnonymousJuly 14, 2009

    Hi Shane and Carissa,
    I pray that God gives you a sign...some sign that lets you know what is right for Avery and what is right for you. Her life has had such meaning. She has been such a blessing to so many people. She has touched lives, reconnected friends, and made us all better parents!!!! I hope she can be a source of joy for you soon, instead of heartache. I pray God reveals it all soon. Love, Peyton Graham Mayeaux - Shreveport

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  34. Oh my sweets...such heartache - there aren't any words, just know that there are so many invisible hands holding yours and many, many, many voices lifted to God in prayer on your behalf for your precious Avery.

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  35. You have been and always will be in my prayers.

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  36. AnonymousJuly 14, 2009

    We continue to pray for you and Avery. God will guide you in the decisions you make. Look to him for guidance.

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  37. AnonymousJuly 14, 2009

    As a mother, I can't even begin to imagine what you are going through. I follow your blog and hope you know that the faith you show in God during this trying ordeal is inspirational. I only wish there was a way you could feel more of the peace so many of us are sending your way. There just aren't words to express the how sorry I am that you are having to watch Baby Avery strugle and that you, as a family, have had to strugle with not knowing what will happen next. My heart goes out to you and I pray that God will soon give you the peace you seek. God bless Baby Avery.

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  38. AnonymousJuly 14, 2009

    As I have stated so many times in the past, my heart and my prayers and thoughts are with Avery and all your family always. It would be great if all our words could be consoling, but they are not. That peace can only come from God. May He shower healing blessings upon all of you at this time. Goldie McGarrah

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  39. AnonymousJuly 14, 2009

    When I see Avery I am reminded of the pain and suffering Christ went through..When I see Avery I see Christ's Image- a beautiful soul put on this earth to show us how fragile life is.

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  40. AnonymousJuly 15, 2009

    I cant begin to imagine your pain and the desire to bring peace to your little baby and family. You are in our thoughts and prayers. May God's peace and comfort get you through this most difficult time.

    Cinnamon Jahn

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  41. AnonymousJuly 15, 2009

    Praying for your family at this hard time. May God wrap his arms around you all and Avery at this difficult time.

    Jenny Rogers
    CDH mommy

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