Sunday, December 18, 2011

greetings from another sick bed...

Hello, it's me again - Mr. Matt. I am sick with a nasty cold, which I have been fighting all week. So today I am staying here at the Ronald McDonald House, resting, napping, drinking lots of water, taking some Day Quil, and, of course, doing the most therapeutic thing I can think of, watching football. But the most important thing I am doing today is reading your comments and getting inspiration to keep on fighting and praying for my little Anna Joy.

I did go see her this morning, and she had a quiet night. She is just resting now. Yesterday they put a "filter" on the ECMO that is basically a dialysis machine. Her kidney's are working okay, but they do have some injury simply because of all the stuff her body has been going through lately (a lot? that's an understatement...). So the doctor wanted to help Anna out and get some of the extra fluid off of her body, specifically the lungs. As of this morning when I left, she was negative fluids. That means the amount of fluids that have been given to her (through IV's, adding blood & platelets, etc) is less than the amount that she is "peeing" through the filter.

By the way, isn't my wife a beautiful writer? Her prayer post last night was amazing! She has such a tender heart that knows how to cry out to her God. Can you all see why I love her so much?

So, I'm going to move on to some more light-hearted stuff. I think we told you that Isaac came to visit yesterday, and he will be here for at least a couple of days. We went to eat lunch yesterday and the restaurant had a live three-man band there. At one point, Isaac started "singing." Really, it was nothing more than him holding out different notes, but he kept on doing it! The greatest part of it all, we were all just laughing at him! Randy, Cathy, Katie, Alissa and I just couldn't stop laughing! In fact, other patrons were enjoying him too! It was too cute. And extremely therapeutic. I couldn't help but think "that is just what my wife needed! Thank you, God, for our little boy!" And we enjoyed the food - immensely. We went to Patty's Eggnest, which apparently is a new restaurant near Northgate Mall. We've been there twice now, and highly recommend it. Oh - bring a wheelbarrow for your leftovers. HUGE servings...

Another slightly humorous (and disturbing...) event happened the other day. We were in our room, getting ready for bed. My wife was sitting at the computer, reading/crying over the comments, and asked me to bring her phone to her. I got up, walked to the table, and grabbed my water bottle and brought that to her. Uhh...what?!? Yes, I brought her my water bottle instead of her phone. I'm not sure what my subconscious mind was thinking (oaky - it wasn't!!!), but there you have it - my brain is officially fried. We had a good chuckle over that.

So, back to Anna, since I realize that she is the reason most (if not all) of you are reading this blog. Who cares about Matt & Alissa, right? Okay - I know some of you do too, so don't get all in a lather. Anyway, tomorrow may be a big day. If her lungs clear up enough they may do another trial of ECMO. It's very possible that the next trial off ECMO will be a pass/fail test. If she tolerates it well, they will keep her off and we'll move forward with getting her healed up. If she doesn't, it likely means the veins in her lungs aren't big enough, and she will not be able to sustain life on her own...

So we'll see if they want to do a trial off tomorrow or not. We should find out in morning rounds. I'll try and remember to post something after we find out what the plan for the day is. But please don't be disappointed if you don't see something too soon tomorrow, as my thoughts may be focused on the events of the day and I may forget to update you all. However, at some point we will get a note to you all.

Your prayers have been truly amazing, and they are giving Alissa and I (and the rest of our families!) hope.  We believe our God can still move. Heck! maybe He already did and we are just waiting for the doctors to confirm it!

Loves, hugs, and thanks to you all.

35 comments:

  1. Continuing the prayers, and continuing to share this on Facebook! May God grant everyone peace and healing!

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  2. I'm so glad to hear that she's negative fluids!! I hope that the dialysis filter is just what she needed. I've been constantly praying for all of you, and constantly refreshing this page. Much love to you.

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  3. Still praying constantly for your entire family, but especially for healing for Anna! Have faith that God has moved, and the doctors will confirm it tomorrow!!

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  4. I have no words or ability to understand this kind of agony, but Barry and I have been following and praying.
    Becky and Barry Swanson

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  5. Praying, hoping, wishing, and loving this family and this little girl whom I hope to meet someday. Lord, please give Anna and her family this Christmas miracle.

    Peace and love be with you tonight.

    Molly Woodruff

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  6. Our four kiddos have been praying constantly for Princess Anna Joy...from the minute they wake up to their last prayer at bedtime! No, they have never met you guys. The day Anna was born, I had just asked them to pray for a REALLY old friend of mine from church. (They asked if it was a friend from the 1900s...yep Alissa and I were playmates at Richland Nazarene.)

    My husband and I are both Children's Pastors...and had a sleepover at our church with our Elementary kiddos Friday-Saturday. Since then, our 10 year old keeps praying that Anna will get to go to sleepovers when God heals her! THANKS for letting us pray with and for you ALL!

    We will keep praying, we will keep believing, and we will keep trusting that God knows what He is up to!!

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  7. I'm overwhelmed on your behalf. I've been reading this blog since before Miss Anna Joy was born and have covered you all in prayers. Our God is an AWESOME God and I praise Him that you (Matt) & Alissa are relying on Him for everything. It is tough when something beyond our understanding happens that God is still present & active in it all. It's amazing to witness all the God moments you've shared with us all. Thank you for being willing to let us all be part of this, I can imagine that's hard, or for me it would be. I am proof that God is still working medical miracles. In Feb. 2010, three weeks after I had my second son and a week after I turned 30, I had emergency brain surgery to remove a brain tumor & cyst from my brain stem. I suffered two grand Mal seizures & hydrocephalus that were present the fateful day an MRI confirmed our worst fears. I awoke from brain surgery unable to walk, talk, or swallow. I remained in ICU for over two weeks and in the hospital for 6 weeks. My babies were cared for by my mother & mother in law while my husband stayed by Mysore as much as he could. When I left the hospital, I had a walker, permanent feeding tube, suction machine & various medical aides & medications. Now almost two years out, I don't need a walker, I'm working at learning to run again. I'm eating, almost a year off the feeding tube. I'm driving despite my double vision. I'm living my life! Sure it's a little different than I pictured, but by Gods grace I'm here & alive, even though I shouldn't. I share that because even though sometimes the situation you are looking at seems insurmountable, it isn't for God. We don't know how it'll come together, but God will reveal it, bit by bit.

    I've heard my former NNU classmates call out to God on your behalf just as many of them did for me. My prayers remain with you an sweet Anna Joy! I look forward to upcoming pictures of her, she's a beauty!

    My motto - keep pushing! God is BIG enough!

    Blessings!

    My blog about what I've been through is
    www.bussjessica.blogspot.com

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  8. I so appreciate the daily updates - helps to focus my prayers throughout the day and the night! Thank you for taking the time to keep us all updated. Currently I am praying for you and Alissa - that the Lord would wrap you in His arms and continue to hold/carry you as you trust in Him. For the medical team, I am praying for wisdom and supernatural guidance -- that they would think outside the box if needed. And for your precious Anna Joy - that she would feel your love in a powerful way, and that she will continue to rest, heal and continue to be a fighter. :)

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  9. I am praying for your sweet baby and family. I went to NN"C" for my freshman year and was in Alissa's freshman class. I currently reside in Beaverton, OR. I just have to share this as I think it is absolutely a God thing and can't help but wonder if the family mentioned in the post below is your family. My niece's boyfriend just finished his last Chemo this week and has been staying at the same Ronald McDonald House as you, I believe. He is just 17 years old fighting Hodgkin's Lymphoma and is from Port Angeles, WA. This is his facebook post earlier this week:

    John Petroff (this is his name)

    "I just met a man whos family might be staying overe here for a while and his daughter was born with heart and lung problems. this family is riding on faith and waiting for a miracle. survival chances are slip but i ask evey one of you to pray for this family. the father dispite all this is staying strong in his faith and praying for a miracle. i ask that you all pray for this family. do it right now as you read, do it before you go to bed it doesnt matter when just do it. God works miracles and this family really needs one right now. thank you all"

    Have you met him? Is this you he is talking about? What a wonderful close family of God we have. He is an amazing young man, also strong in faith. I think it is fantastic that in his hardest days, he is seeking prayers for others such as yourself. Please let me know if this is more than a coincidence and nothing less than God's hand in this all. God bless you all!
    Sincerely,
    Jana Brumbaugh Apple

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  10. Praise God for the details, negative fluids and rest for your beautiful angel. Still calling out for Jehovah Rapha's healing touch and mighty works. Praise God for your precious Isaac who brings you such joy and laughter in such a difficult time. The world is praying for you all and your Anna. He's already moving mightily in so many lives. I'm so hopeful for you today. Blessed be the name of the Lord.

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  11. Your Faith is palpable. Prayers continuing. Much love to you all.

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  12. We also have been passing around bugs amongst our family. Still remembering you frequently in prayer; Cate has been reminding us to pray for "baby Anna Joy" during our prayer times with her. From the mouths of babes...

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  13. Praise God for His Blessings. So thankful for your healing time with Isaac. God knew you ALL needed that! Glad you can laugh about mistaking a water bottle for Alissa's phone. It is amazing that you guys can function at all under the circumstances. I Praise God for sustaining you ALL through this valley. Constantly praying for healing and strength for ALL of you. (also Constantly checking for updates....)I'm afraid you have created a tremendous amount of blog checking junkies. At least this is a God approved addiction : ) Love and Hugs to you all.

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  14. Do you ever get the sense that people just "stalk" your page waiting eagerly for your next update? If you do get that sense, you are right! Thank you thank you for the updates. Sorry you're not feeling well, Matt, and glad that you took part of today to rest. Thinking about Isaac made me smile and I'm so glad he brought some much needed laughter to you all. Prayers here are ongoing for Anna Joy, and each of you who are in this with her. I have been encouraged by all the support for you guys from all over - friends, relatives, friends of friends, strangers - it's truly amazing. The support from my friends who are praying for you has been humbling and such "gift" to me as well. You're probably getting tired of me telling you how much I love you all, but you're just constantly on my heart and mind and it seems it can't be said enough. Even though there is an empathic physical and spiritual response going on here in LA, I remain hopeful and praying with you for another miracle! Can't stop singing "Healer", and that's alright with me. :-) Much love (again).

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  15. I am still here... and still praying.

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  16. Thank you for the update! I look for it several times a day. Still saying many, many prayers for your precious Anna Joy. Praying for more miracles for your family. Keep fighting!!!!!

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  17. Matt and Alissa, you have been amazing and God is so proud of you two...I know His heart is bursting with pride when He sees your faith...

    My heart is also praying for your Christmas Miracle...To God Be the Glory!

    I am coming to Seattle on Wednesday to see a surgeon at the UW. Would it be possible to stop by Childrens and pray with you two?

    I know you don't know me, but I know Randy and Cathy Freeby. God gave me a miracle baby at the age of 41 against all odds after Breast Cancer. My water broke at 26 1/2 wks but she was not born until week 30. She is our Miracle. She is now 9 years old.

    I know that tomorrow will be a day of unknowns... But I will be watching your posts... and praying, and waiting with you! In Christ's Love, Tammie Rutledge

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  18. I have been in non-stop prayer today for Anna and Alissa. Not trying to leave you out, but as a mom..I get her prayers. 8 years ago our 6 month old son died of heart failure. So as I read Alissa's plea last night my heart just broke and I have just been praying that she wouldn't ever know this pain. I found some scriptures of healing that I have just been praying over Anna (from Texas). Maybe I'm wrong (which has happened many times), but I fully believe that God is going to perform a miracle on that baby girl of yours. Praying that this feeling is from the Lord and not something that I feel because we all want it so bad for your family. I won't stop praying for your family!

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  19. Our Church declared life and prayed over sweet little Anna today before we started worship.

    Our first song's words were:

    "Won't you wrap your arms around me and hold me tight cuz i wanna be loved by you for the rest of my life

    Embrace me father bury me in your chest
    tell me it's all ok cuz i'm with you"

    Felt like we were singing over you guys.
    Blessings on you all. Good will win. God is good and He will prevail.
    Blessings on you.
    Church of the undignified.

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  20. Your faith is to be admired. You have many people here in Ohio praying hard for your family.

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  21. Well Matt, if it makes you feel any better, I have given a water bottle or the like when asked for a phone on just an average day, so you are MORE than excused for what you did! Several people at my church, who don't know you, specifically asked about you guys today and said that they are both praying for you and so moved by the two of you and your faith.

    When I think of the great testimony of faith that you all are giving, it made me think of this scripture:

    Colossians 4:2-6
    "Devote yourselves to prayer, being watchful and thankful. And pray for us, too, that God may open a door for our message, so that we may proclaim the mystery of Christ, for which I am in chains. Pray that I may proclaim it clearly, as I should. Be wise in the way you act toward outsiders; make the most of every opportunity. Let your conversation be always full of grace, seasoned with salt, so that you may know how to answer everyone."

    You all are proclaimly clearly the love of God. And the conversation is so vulnerable and real, that I think even those who don't share our faith in God, will see something that they desire and want for themselves.

    Carrie Hays

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  22. Thank you so much for the update. I was getting nervous ,worrying that "no news" might mean Bad news. Still will keep your family in prayer. We are all patiently waiting for a miracle - a Christmas miracle perhaps. Also,praying for Gods' blessings on all of you & a peaceful heart. You are not alone. "Don't let this throw you. You trust God,don't you? Trust me." (John 14:1 Message Bible Teanslation)

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  23. I found your blog today and spent 2 hours reading and crying hysterically over every entry of your blog. I am in constant prayer for baby Anna Joy and for you and your family as well. My heart breaks for what you have to go through and can only pray that it will bring you great blessings and joy in the end. God bless you! I will continue to follow and, of course, pray!

    Psalm 33:20-22 We wait in hope for the LORD; he is our help and our shield. In him our hearts rejoice, for we trust in his holy name. May your unfailing love be with us, LORD,
    even as we put our hope in you.

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  24. Praying for your whole family. My nephew has HPLH, he is 14 years old. He is doing amazing. I pray you will be able share that with someone some day too (about your little girl). May God richly bless you!
    ' I know the plans I have for you they are of good . Not of evil.' God

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  25. http://www.youtube.com/watch?v=Y4DgESWtCus

    yes, God will make a way....!!!!!!!!!

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  26. Praying for your sweet family...not sure if you remember me, but I went to SA with you-Amber Fields (Stutzman now :-) ) We are praying for you guys and know that God will lead you through this!!! You have a beautiful family! amber

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  27. “For my thoughts are not your thoughts, neither are your ways my ways,” declares the Lord.
    “As the heavens are higher than the earth, so are my ways higher than your ways and my thoughts than your thoughts.
    As the rain and the snow come down from heaven,
    and do not return to it without watering the earth and making it bud and flourish, so that it yields seed for the sower and bread for the eater, so is my word that goes out from my mouth: It will not return to me empty, but will accomplish what I desire and achieve the purpose for which I sent it.
    You will go out in joy and be led forth in peace; the mountains and hills will burst into song before you, and all the trees of the field
    will clap their hands.
    Isaiah 55:8-9

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  28. I started reading your story today and am praying for your family. Our twin sons were born at UW in June. One of our sons passed away while his brother spent 4 months in the NICU fighting for his life. I know how hard it is to be away from home and the added stress of having a critically ill baby. I'm sorry that you and your family have to go through this. Praying for the strength that only God can give you and for your sweet little girl. When people asked us how we were strong enough to keep going all we could tell them was that it was only because of the Lord, carrying us when we didn't have the strength.

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  29. A nurse friend directed me to your blog. Our little girl has HLHS too and is seven years old now. It seems like a lifetime ago since we were in the thick of surgeries and hospital stays. Your daughter is so beautiful. I will pray for you and for her. When our little baby girl was in the hospital I knew people were praying for us because I could "feel" the prayers sustaining us. I hope that you feel the prayers of others as well. We learn so much from these little heart babies. Their struggles bring us to our knees in prayer and closer to our Father in Heaven. I know that He is aware of you and your family and loves you all so much. Take good care of yourselves during all of this....eat, sleep, leave the hospital for a walk or to the store.

    I wish you a Merry Christmas while you keep watch over your own little miracle.

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  30. I felt compelled to write you because your story was shared on facebook by a friend of mine who has a mutual friendship with you.
    Let me first say that your little girl is so beautiful!
    I felt compelled to write you because I was touched by your daughter’s story. I was born 28 years ago with a very rare heart condition. It’s so rare that I have never met nor heard of another case like mine. Like you both, my parents were told that I would not live through birth and if I did it wouldn’t be long after that before the Lord would take me. During that time the open heart surgery I needed was rare and dangerous. So the doctors waited. They waited until I was 4 years old and my body and heart couldn’t take it anymore. That was when I had my first open heart surgery. From there I would grow to have 3 more surgeries. My last one was performed to put a pacemaker in when I was 20 years old. At the end of 2012 I will undergo surgery again to have that pacemaker replaced and updated.
    I wanted to tell you this to show you that anything is possible. My heart care was done as Seattle children’s Hospital as well. They had an amazing team then and now! I have beat all the odds and have gone on to be the 2011 embassador for The American Heart Association of portland Oregon. I also recently gave birth to my first child in August.
    I'm telling you this because I was told and my parents were told I would never live long enough to be a normal child, or get married, or have my own children. Well I have done all that and more.
    I give the glory to God and Christ Jesus. Through him all things are possible.
    I hope this in some way gives you comfort. To know that the impossible is possible.
    I find myself praying for Annna daily, many times in the day.
    I constantly share Annas story with other, seeking prayer knowing that it takes a village to raise a child. Well this village is behind your family and Anna. We pray that the healing hands of the spirt touch down on Anna and on you and your family.
    May God walk this path with you carrying you the whole way.
    Thank you for sharing Annas story. No matter the out come this little girl has touched so many lives.
    Sincerly
    Jennifer Jones.

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  31. Just want to throw another thought of Love and prayers into this posting pot :) I don't know you personally but found your story on Facebook and have been believing with you and staying updated daily. Somone once said to me that God's delay is not his denial and so I am believing with you that He will continue to answer these many prayers. Your daughter is beautiful, and I know God is treasuring her and holding her in His arms every minute of this journey, and I pray you both feel His arms holding you as well. Much Love, Sarah

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  32. Praying praying praying for great wisdom on the doctors parts tomorrow as to timing, and for Miss Anna the rockstar!!!

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