Monday, March 10, 2008

Day 64

Joshua's gained over a pound - he's 9lbs today. Some of that may be fluid, but I can't imagine it's all fluid.
He's having trouble eating today and there are some bleeding spots on his cele.

Dr S did respond btw. He and his associate agreed on the diagnosis we received here - that there's nothing to do that will save/fix him. They offered the same surgical option we were offered by Dr L his first week - but again with the understanding that he may not survive the surgery. Dr S and his associate suggested we find a doctor here to do the surgery, which would ean Dr L since he's the best in the country. We're not going down that roa because its not a good possibility of survival and it won't save Joshua.

Please pray for us. For Joshua. For Oceana to get better. For my emotional stability. Pray Joshua eats... he's not eating much today...
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  1. Im so sorry to hear that the doctor couldnt offer you any new hope, I pray that Joshuas cele will heal and he will start eating better as well. It breaks my heart to see that he isnt doing well lately but everytime I look at your page I am reminded of what a miracle he is... he wasnt expected to make it past birth and look at the wonderful 2 months you have had already to get to know that little man. And you are right. Although his body is broken his spirit is perfect and it is a gift:-) I never know what to say since I feel like I know you and yet we are complete strangers.I think I can just relate to you because Im a young mom too and it always amazes me how well you are handling this hard hard situation. Just remember God chose to send you Joshua because he thought you would be the perfect parents for him... and everything you do just proves God has made the right choice in you and Matt. Again. My prayers are with You , Joshua , and Oceana(dont you just hate it when they're so sick) .
    Elisha canada

  2. Susie,

    I will continue to pray for your family. Thank you for the update. I have a friend who has a 4 week old son who hasn't gained any weight at all they say her milk supply isn't good, what was the herb you were taking to help it?

  3. Wow! Joshua is getting big! Susie you are in my thoughts always! You guys are doing what's best for Joshua! Never doubt that!! You HAVE always done what's best for him!! He's will always be your miracle....Poor Oceana and well Mommy too!! I hope that you get some sleep and everyone gets better! Kiss your kiddos for me and my kids! My almost 2 year old loves to loook at your blog with me...he always smiles at the "baby" as he says! Cute :) Have a great week.

  4. Dear, dear Susie. I continue to "check on" you guys every day. Thanks for your persistence in posting. I love the pics of Joshua, Oceana ...and ofcourse you and Matt. :) I'm sending my love across the ocean to you.

  5. Praying, always praying. You never leave my thoughts and prayers. We're in this together and we are standing with you, and our church family is standing with you. Be strong and courageous little man. We love you. You are never alone.

  6. I've been reading your blogs after finding you via a few other people. I just pray that God gives you what you need at the moment you need it. I hope your baby girl feels better soon! And what is so great is that your story, your son, your faith, your family, is touching people all over the world and will for a long time, it's amazing! God Bless!

  7. Still thinking of you all and praying for everyone. Many many blessings to your family.

    Denise in VA

  8. You are all in my thoughts and prayers. I prayed for Susie and Matt to have comfort and strength, for Oceana to be well, and for Joshua to bask in the love of his family and not to suffer.

    I hope that Joshua begins to eat and that his 'cele membranes heal.

    I do have a medical question, please pardon my ignorance...If it's fluid and not brain tissue, expanding the 'cele and putting stress on it, can some of the fluid be drained off by needle tap or shunt? I realize that this would be a temporary measure, except the shunt. Would this fall into the category of heroic?

    When my grandmother came to live with me in her final weeks of life, I figured out how to feed her using a large dropper and preparing liquid meals. She frequently choked, not like you are I do, but for hours, until she could clear her throat. On the first day, I didn't know if I'd have the strength to follow her wishes and not seek medical attention, but to let her pass away naturally. The big question became, do I starve her to death or try and feed her and watch her choke to death. I prayed and talked to her and when I woke up the next morning I had my answer. God gave me the strength and the peace to know that getting medical attention was the wrong thing to do. A feeding tube wasn't going to cure her, I just had to go with what her body could tolerate. My belief in natural birth, natural living and natural death was reaffirmed during the time I cared for my grandmother. It was hard to witness, but the rewards were too great to count. BTW, I never had to decided not to feed her at all, she always had a little of something, which was a blessing since I didn't know how to make that kind of choice for her.

    The last two weeks I spent caring for my grandmother were among the best in my life. God's presence filled my home. After she died I didn't have any regrets. I didn't feel the need to tuck any little momento into her casket with her because I was able to give her all my love while she was still with me. I consider myself the luckiest member of my family that I was the one who had the privilege of her final weeks.

    I also pray that you continue to be guided, Susie, to do what is best for Joshua, no matter what it may be, and that you have the peace in your soul of knowing that you are doing the right thing so that you can take comfort in that knowledge.

  9. We are praying every day for all of you. Sending our love from Tennessee.

  10. A friend linked to your blog today, and I've spent the last few hours catching up on your family's journey. Thank you - thank you! - for sharing it all with us. I am the mom of a 3 month old and a 26 month old, and read Joshua's story with one little girl nursing, and the other running around, looking over my shoulder when she would pass by. When she saw Joshua's photos in this post, she said "Ohh, pretty baby. Sleeping baby! Shhhh, nice baby." I will check in daily, and keep your family in my prayers.

  11. We love you guys and are praying God's best for you! Also praying for healing in your house - it has gone around our house as well! Those sleepless nights start to catch up with moms! Praying for perfect rest in the Lord!

    You are all always in my heart and on my mind! We love you guys and miss you! But know you are where God wants you to be and that is all that matters!

    Love & Prayers, PAM (Roy & kids)

  12. Someone linked me to your blog tonight and I am deeply moved by your situation and by your beautiful boy. I am also inspired by your faith. I've been lax in caring for my soul and your writings have made me realize what I'm missing out on. I will pray for Joshua and your family every day.
    -Alexia in Missouri

  13. Matt and Susie,
    I am still reading your blog every day and praying for you all. We love you. I love the picture of you two on the beach holding Joshua!(It doesn't matter about your eyes being closed, we see a beautiful couple that God has blessed.) Thank you for sharing your struggles. God is using little Joshua for bigger purposes than any of us can see or understand! Love you!
    Dave and Sue and everyone else here