But from everlasting to everlasting the LORD's love is with those who fear him and his righteousness with their children's children . . . Psalm 103:17

Monday, August 27, 2012

Brief, sobering news

Seth has "significant lung disease," and if things don't turn around dramatically and soon, there is a "very real possibility" he'll come home with a tracheostomy (hole in his trachea) hooked up with a ventilator or CPAP machine, as well as a hole into his stomach to allow us to feed him. The tracheostomy will prohibit him from being able to vocalize or cry audibly, and in the doctor's experience, he could have it for possibly even a year.

The doctor said all 5 babies, not just Seth, are still at risk of dying. In her words, "None of them is out of the woods yet."

Case in point: Grace had to have her ventilator support increased rather than starting weaning from the ventilator today.

Marcie, David and Will continue to have spells of apnea, when they stop breathing  and experience drops in their heart rates.

Please continue to pray for these babies. I didn't realize until today how precarious their situation still is. The doctor really laid it out there for us. Naive optimism is gone; we realize the Lord is these babies' only hope for life on earth and for all eternity. He is greater than any challenge and sovereign over each atom of their being. Thank you for joining with us as their prayer warriors.

In His Hands, along with Seth, Grace, Will, David, Marcie, Isaac and Gavin,
Carrie

P.S. Please also pray for Isaac, who didn't have a great 1st day of school today. He is exhibiting serious insecurity and fear at night, especially. We are praying with him, reading from Scripture, staying with him while he falls asleep, and protecting him from news that might be too upsetting.

31 comments:

  1. Praying for all of you. May God give you peace and strength as you trust Him.
    We serve a big God. He has known your little ones since time began. He knows their every hour and day. We trust Him along side of you and pray for divine healing in Jesus name.

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  2. Please know that you are the first thoughts in my mind, and my prayers in the morning and my last thoughts and prayers at night. May God continue to hold these precious miracles in His arms and may He hug you both and Issac as you walk through this journey together. Our hearts are with you all. You don't know us....but know your being "prayed through" this....

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  3. Reality checks are hard, but as we meditate on the Lord and His goodness and faithfulness our spirit once again soars in His grace. May Jesus keep you focused on Him. He alone is the one who will touch each child, nurse, doctor, friend and family member. This is His show and we can Praise God for that! There is no better place for each of us, but in His hands.

    My heart is praying you continue to experience His abundant grace during this journey with Jesus. Each one of your children are so precious, what a joy.
    Psalm 40: 1-16

    I relied completely on the Lord,

    and he turned toward me

    and heard my cry for help.

    He lifted me out of the watery pit,

    out of the slimy mud.

    He placed my feet on a rock

    and gave me secure footing.

    He gave me reason to sing a new song,

    praising our God.

    May many see what God has done,

    so that they might swear allegiance to him and trust in the Lord!

    How blessed is the one who trusts in the Lord

    and does not seek help from the proud or from liars!

    O Lord, my God, you have accomplished many things;

    you have done amazing things and carried out your purposes for us.

    No one can thwart you!

    I want to declare them and talk about them,

    but they are too numerous to recount!

    -Francis

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    Replies
    1. Wow. How perfect this is for our situation! Will write it out and/or memorize it.

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  4. Praying, praying, praying for all your precious ones. The scripture Uncle Neal used for the pictures is definitely one to cling to.

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  5. I pray for the babies several times a day. Their birth has been a wonderful testimony to the sanctity of life and I pray God will heal every one of them. I read somewhere that premies who are held a lot do better than those you aren't held much or not at all. See if they let you hold Seth and Grace even with their parafernalia on. Hold all of the all you can.

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  6. Praying for you. I had twins at 24 weeks; many long months and much heartache later we brought our son home trached and on a vent. He has since gotten rid of both.... They have ongoing developmental and medical issues but they are beautiful 3 year olds both with extraordinarily large personalities who lead rich full lives. Blessings on all of you...

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  7. I heard about your story on my local Christian radio station, and ever since then, I have been praying for you and your family often. I find myself praying first thing in the morning, late at night, and continually throughout the day, as God seems to put your family on my mind a lot. I can't imagine the incredible highs and lows you must be experiencing, but just know that you have an army of prayer warriors behind you, many that you don't even know. I pray for His angels to watch over each precious little one, and to protect their fragile little bodies. I am also praying this passage over you, your husband, and sweet Isaac.

    Philippians 4:6-7
    "Do not be anxious in anything but in every situation, by prayer and petition with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus."

    Blessings.

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  8. Our God is greater.. Praying for all!

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  9. Have no fear,
    The Lord is near:
    He holds the babies in His hands.
    Have no fear,
    The Lord is near:
    Leads Gavin & Carrie in His plans.
    The babies will sense the Great I AM
    As they did while in the womb.
    The parents will see His will be done
    As sure as Christ's empty tomb,
    As sure as Christ's empty tomb.
    So, Have no fear
    The Lord is near:
    What He decrees, He'll do
    You only need believe & receive
    All the blessings He has for you
    (And also for Isaac, too!)

    Amping up the prayers,
    Prince of Peace's Poetess

    (I also posted the poem "Little hands and little feet" at 7:04pm on 8-14-2012, in reply to the "Anybody ready for some news?" blog you posted on Thu., Aug.9, introducing the quints with pictures, on their birthday.)

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  10. oh wow. i will really be praying for all of you guys.

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  11. The same God who made the universe, Created Man, every tree and flower..who knows every hair on our heads,,and takes care of the birds in the air...Made each Baby..and with his mighty power has each Baby in his gentle loving hands....God also has Gavin, and Carrie in his heart, for he knows how a Father hurts, when watching over his Children....And who else than Mary knows the hurting of a Mothers heart....And Isaac Jesus is walking beside you with every step you take...he knows all your worries and fears, he knows everything about you... And pour forth Your Spirit,Jesus to let him feel your Grace during this time and surround him with your love and Peace..

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  12. Hi Joneses!! Boy, reality checks can be hard, but are needed to put everything in perspective. We are still praying, especially at this time for Isaac. He and you might really be helped by some professional counselling. It can be so helpful as to what you can do and say. We had some real issues with kids years ago, went to a counselor (only 2-3 times), but it was so helpful--they explained why they behaved the way they did, and gave us lots of helps. Made all the difference in the world.

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  13. My daughter was born at 28 weeks. She is 21 months old now. I remember those reality checks. Just when you think things are going good, you take steps back instead of continuing forward. I'm sure you've already been told this, but I was always reminded that the NICU is a marathon, not a sprint. "Come to me, all you who are weary and burdened, and I will give you rest." Math. 11:28 "Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God." Phillipians 4:6

    Carrie, I love the pictures that your Dad put together with the Bible verse. So fitting and so precious!

    Also praying that Isaac has a better day at school tomorrow and a has a good nights sleep.

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  14. Prayed for you all at supper tonight, and especially for sweet Seth and Isaac. Tell Isaac that Matthew and Ethan say hey and are hoping he has a better day tomorrow.
    - The Gebauer Gang

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    1. Thank you! Thanks also for the gorgeous flowers and yummy supper. :) we really, really appreciate the help and love and prayers.
      Carrie

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  15. My husband and I are currently 24 weeks along with quintuplets and recently saw your story on our local news! Our stories appear very similar as we also did only injections! You will be in our thoughts and prayers as we make this journey together! Your babies are so beautiful and we wish only the bet for them!! Jacob and Leann Alferio. Http://thealferio5.weebly.com

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    Replies
    1. The LORD bless your five; may they stay in a long time yet!

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  16. I have nothing but prayers for you all.

    But prayer, as we know, is mighty.

    Lifting you up.

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  17. My Dear Friends Gavin and Carrie. I pray for the both of you to be comforted. Little. Isaac I pray that you sweetheart will rest and know that God holds you and protects you everyday and everynight. God will not let anything harm you. He also holds your sweet brothers and sisters in his hands. I pray that in the name of Jesus these children will be healed . I believe that he hears our prayers and these babies will be healed. Love you and your sweet family. Prayers will continue.

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  18. I'm a friend of Katrina Ryder's. I'm so sorry to hear this news but I know the God we serve is amazing and all powerful. Praying for a miracle with your sweet babies.

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  19. praying. God's ability to rescue and to heal is as great a reality as the precarious state of your little ones

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  20. You and your precious babies are in my prayers - all 6 of them!

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  21. We're still praying for your family. Oh, I remember those reeeeeally long days and nights sitting by an incubator in the neonatal ICU. We were there 3 weeks with my oldest son (who is now 18 with no physical or lung issues, praise God). Please remind Isaac that our God is huge and that nothing surprises Him. All will work out according to His ultimate best, and we can trust and rest in that. {{{{Hugs to all of you}}}
    -- the Coult crew

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Gavin, Carrie, Isaac, Will, David, Marcie, Seth, & Grace Jones

Gavin, Carrie, Isaac, Will, David, Marcie, Seth, & Grace Jones

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