Wednesday, February 4, 2009

One step at a time...

We will begin this post with all the positive and wonderful things we got to experience with Jacob today.

I got to change Jacob's diaper today! For many of you this may seem silly or possibly on the gross side, but it was one more thing that Jeff and I got to do with Jacob that we thought we would not get to do. One thing they have been saying about Jacob is that his kidneys are really working well...he must take after me! ;)

We read a book with him called I Love You Through and Through. It starts out by saying all the things that you love about your child, "I love your top side, your bottom side, your inside, and outside." Jeff and I took turns reading each page to Jacob. I added some things into the story, as most teachers would do. I know Jacob heard us and being able to tell him how much we love him, face to face, was so special. There's nothing like reading a story to your newborn baby!

While these two things were very special, this is not the full picture of what we are going through in the NICU. In fact, today was quite depressing for Jeff and I. Jacob's day was okay and some progress was made with his ventilator and decreasing of some medicines. However, our discussion with one of the surgeons left us feeling like there is long road ahead even before the next surgery. He indicated that the surgeons want Jacob to be off the ventilator completely, or almost completely, before they will move the liver into his abdomen. He also indicated that moving the liver wouldn't solve our problems, that Jacob's lungs would still have to overcome so much in order for him to survive.

Our hearts are heavy today. We had so much hope in the first few days after birth and leading up to the first surgery, Jacob was defying all the odds. We had wanted so much for the first surgery to work and be on the road to recovery. Instead we are in this waiting period, just seeing what progress Jacob can make. In order for us have any hope for recovery and to bring our son home, Jacob needs to work his way off the ventilator. The nurses, doctors, and surgeons don't think that this will be possible for us. If it does happen, it will be a long, slow process.

We know that with God, all things are possible, and we have come this far by the Grace of God...so please pray for our "Glorious Impossible" and that Jacob can come off the ventilator sooner than expected and with far better results than can be explained by modern medicine.

Many Blessings to you all!

25 comments:

  1. I am praying every time I think of you. Jacob's life is touching so many by this story already--how amazing is that? Praying for the best and most miraculous for your family.

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  2. I wish I were there to give both of you a loving hug! Better yet I'll offer a prayer and ask the Father to calm your fears, give you strength to do what you must and most importantly shower you with feelings of peace. Blessings to all of you.

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  3. All things are possible with our Lord!! Keep remembering that! God has a GREAT plan for your beautiful baby boy!! He will hold him through this...he'll hold You both through this! With God all things are possible!! Keep your thoughts positive and keep enjoying every moment with your son! I will continue praying for you all! God Bless!!
    ~Heather

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  4. I have never like the answer "wait". We'll be praying for you guys has you wait. We'll pray for peace patience, lots of joy and healing. We love you so much.

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  5. Jeff & Julie,

    Praying the spirit of Isaiah 40:31 for you this morning: that as you face a long road, your strength would be renewed as you hope in the Lord and that by His strength, you'd be able to walk this long road and not grow faint.

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  6. We are praying for the "Glorious Impossible" that is a "Glorified Possibility" through Christ.

    Jesus looked at them and said, "With man this is impossible, but with God all things are possible." Matthew 19:26

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  7. I know what you mean about getting to do all the little things for Jacob that other new moms and dads take for granted. Treasure them all and know that as you do all the "firsts" they won't be the "lasts". Jacob sounds like such a fighter.

    We will continue to pray fervently for little Jacob.

    One thing that we learned with Peyton is that the doctors always tell you the worse. I don't know if it is because of malpractice fears or if it's so that you can be amazed with "them" when things turn out better. Just know that God is in control and with so many prayers going up for Jacob, He is certainly hearing. Continue to trust in Him.

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  8. waiting is so hard. no one can imagine what your are experiencing. wait on the Lord. He will renew your strength. I pray He heals little Jacob.

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  9. I got your blog from someone else's blog, the day Jacob was born. Your story has brought me to tears, and to my knees. When I read a new post and the comments left by family and visitors, I can feel the Lord's spirit. It's amazing the prayers and scriptures left in these comments. I've been praying for Jacob everyday, and even talked about him in our Sunday School class and about the miracles God has already done with little Jacob. I have an 11 month old baby boy, Mason, and I can't imagine what pain and helplessness you must be feeling. My heart and prayers will continue to go out for both of you and your little shining star, Jacob.

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  10. With God all things are possible, and we will be praying for that miracle!

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  11. Julie-again, you don't know me, but I am a friend of Heather Hood's. I have a friend who works there at Vandy as some sort of liason between the hospital and families, and she's very good at it, since she went through very very similar circumstances to yours about 10 or 15 years ago, with wonderful miraculous results. She learned how to work the system and fight for her child,who is still thriving!! Please look her up if you can, her name is Jennifer Queen. I emailed her your blog address in the hopes that ya'll can hook up there sometime and get advice and encouragement. She's great! I am still praying so much for your family. It is so heart warming to hear about your cherishing each moment with your precious baby boy.

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  12. i am a friend of laura beth and chad, and my family continues to pray fervently for jacob and you guys. we spent many days in the hospital ourselves with my nephew this fall(wittharrislupher.blogspot.com)
    and we know how much each prayer means. we will continue!

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  13. Dear Jeff and Julie,
    I put a little note in the mail to you last night before I had even read your blog today.
    When I saw the card I sent, I knew it was the one I needed to send...when you read the front, you'll know why.

    I'm praying that Jacob's lungs and liver are doing the work they need to do at this very moment so that next steps can be sooner rather than later.

    And, you're right...those "firsts" are so incredibly special. :)
    I know our stories are different, but I still remember giving Catherine a bottle for the first time in China...though it wasn't her first bottle, it was our first one as momma and baby.

    Praying the Glorious Impossible with you,
    Suzanne

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  14. Julie and Jeff,

    I will continue praying for your family; asking for God's will and that Jacob is able to come off the ventilator. Jacob has taught me to not take any of the little things for granted and this post was a reminder of that.

    Alicia

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  15. We don't know you, but we heard about Jacob through our Sunday School class prayer chain (from Hermitage Church of the Nazarene). My husband, daughter and I have been praying for Jacob and your family daily. I was reminded as I was praying for you this morning that we serve a God who really loves long odds. He is attracted to weakness. He just loves to do the impossible, to conquer the insurmountable, to flex his muscles and show his strength. We are praying that you will have the blessed privilege of standing back and seeing an awesome display of God's mighty strength in Jacob's life. We are praying for the miracle of Jacob's healing to be a powerful display of God's splendor. We join you and many others in your prayer for the “Glorious Impossible.” May God bless and strengthen you as you watch Him work out his plan for Jacob's precious life. You are in our thoughts and prayers.

    Catherine Segars

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  16. Jeff & Julie (and Jacob),
    We are continuing to pray for the glorious impossible. It is possible because God is present and makes the "impossible" possible. I know this first hand as a cancer survivor. We continue to pray for Jacob and as a nurse and witness to God's miracles I encourage you to keep searching for those health professionals that are willing to fight the odds with you! Sometimes it takes a lot more searching...Our prayers continue to be with you!
    Rob & Jessica Cook (Woodmont)

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  17. Praying that God will encourage and lift you in a way the news from the doctors understandably has not. The comment in an earlier blog about the doctors always giving the worst case scenario is very true. We are praying that Jacob surpasses all expectations, defies all odds, and that God will get all the glory. In the meantime, I know from 3 months in the NICU with our preemie, that it is hard to stay upbeat. Don't beat yourselves up about that; you will be more positive tomorrow. Hug each other and pray, and cry with a friend, and try very hard to get enough sleep. Each hour you spend with Jacob is another step down the road; you are getting closer, even if the road slopes downhill for a while tomorrow. Praying very hard for all of you.

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  18. (last blog from from Ronda Walter, Nashville; Tulip Grove Baptist Church prayer chain)

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  19. Jeff and Julie,

    I am praying tonight that your hope can be renewed. I can't imagine hearing such discouraging words from the doctors today, but God had already given Jacob the strength to defy so many odds, and I believe there are more to come. I pray that all the moments you have to share with Jacob (even changing diapers) will help renew this hope in you.

    Lots of Love--Tali

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  20. Julie and Jeff,
    You three are in our constant thoughts and prayers. We are praying for Jacob.

    Love,
    Ryan & Jeremy

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  21. Jeff and Julie,

    Our hearts are with you, and be assured you are constantly lifted into the presence of God--not only through our prayers, but by God's love for you. God knows your fears, your pain, your heavy hearts, and he will not abandon you.

    Blessings,

    John Mark and Jennifer Hicks

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  22. You have know idea who I am, but I want you to know that I am lifting up prayers for little Jacob. I got your blog link from a friend in Memphis. I recently witnessed a miracle with a family friend. This 20-year-old boy suffered major head trauma in which doctors said he would likely die during surgery. If he lived, he would not be normal. Through the power of prayer, Ryan is healthy and normal just 4 months later. God worked a true miracle. I have no doubt that God can heal your son and I pray that He does.
    Love in Christ,
    Sara

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  23. Hi Tuley Family - As others have said before, you don't know me. I learned of your family from a friend in Side By Side Bible Study. I have linked your blog on mine and posted about your little family requesting prayer. Love, prayer, and God can and will move mountains.

    With So much love!
    Lili

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