Wednesday, December 14, 2011

good evening! or is it...?

We were having dinner with one of my brothers, his wife, and Alissa's sister, Katie. In her wisdom, Katie pointed out that we (Alissa and I) were being too positive in our posts. Okay - she worded it much kinder than that, but that was the message.

Yes, we are doing our best to stay positive, and live in the hope that our good Lord has promised to us. Yes, our hope is bigger than anything the doctors can say to us. And yes, we are going to believe in that hope until we have nothing left to believe in.

That being said - we are not out of the woods. Not even close. Actually, we just entered the woods, and still can see the fields behind us through the trees cuz we are still really close to the border. And the doctors tell us the woods will be thick, full of wolves, valleys and high hills, with lots of pricker bushes & poison ivy.

For example, Anna was taken off the ECMO for three minutes earlier today for a trial run to see how she would do. The doctors didn't think she would go very long, and she didn't. They did find some useful information though, that will help them chart their path. For example, the shunt they put in is having some sort of problem. Since the shunt is hardly being used while the ECMO is on, it doesn't have much blood flow. And since it's a foreign object in the body, the blood can easily coagulate there. So there is a possibility that it needs some work too. They will take Anna into the cath lab tomorrow to do some more diagnostic work.

See? We're still woods, and the path is not clear at all - at all!

As a stark reminder, just the other day one of the doctors commented that she is, after all, still on full life support. And she is still in the ICU - which, as we all should know, stands for Intensive Care Unit. And people in ICU need lots and lots of help if they are going to get out alive.

So let me say this: please know that we are still hopeful. But please don't think we are without hope, or that we are just being naively hopeful. We know the odds are still against us. But we also know that our God is not a God of odds. That's why our posts seem full of positive reinforcement.

But - we are still human. We still cry. We still get drained. We still have moments of doubt. Sometimes that doubt hits so strong that we have to get hit upside the head in order for it to be dislodged. Actually, sometimes putting our head on someone else's shoulder and receiving a word of encouragement is much better and more effective than getting hit upside the head. So if you see us, and you have the choice of one over the other, we would like to opt for the shoulder-to-cry-on technique.

Tomorrow is a new day, and it will bring a new challenge. We'll have to sign another consent, and watch our baby Anna be wheeled into another room for another procedure. We hope to get more answers for the riddles that plague little Anna. We hope the doctors can find enough information that will set them and us on the right path, knowing full well that the path may disappear even as we walk it and we'll have to find another one.

Okay, I've overused the simile thing. It's over and done, and hopefully you guys all get the point. And it's time for me to go fold some laundry, and then curl up with my cute little wife and cry ourselves to sleep.

Love you all. Thank you for joining us as we try to get to go over the hills and through the woods to gran...whoops. I went back to the woods thing. Sorry.

15 comments:

  1. Praying for sweet baby Anna Joy. Thanks so much for sharing her story. I look forward to your updates. I will be praying for all of you every step of your way through the woods and out into the open field. God Bless you and your family.

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  2. Thanks for the realness. And the wit. It is good to know Anna's status, so we can pray specifically... Same goes with how you guys are doing. I pray right now for good sleep for you two, and continue to pray HEALING over Anna. For no clotting, for wisdom for the doctors, and just... Healing. Love you guys.

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  3. Matt & Alissa, I'm so thankful that since you have to be in the woods, you know that you are not alone! God is with you, of course, and many of us "out here" are as with you as someone who is not in your shoes can be. Anna Joy is blessed to have you as parents. And we are blessed to be loving you all and praying with and for you! Thank you for the updates. Much love to you all.

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  4. Thank you for being real, transparent, vulnerable in your posts- both of you. I have been blessed reading your praises to God. Knowing that you are in this situation illuminates those praises. They are a sacrifice to God. I will continue praying and recognizing the miracle that each day for Anna is. Praying for you both for strength and God's love to surround you. Writing in love and declaring God's amazing love and promises over your family. Psalm 136 is a great read because every proclamation about God is followed by a promise "His love endures forever" I get that in every life situation "His love endures forever" and so many times I just go, "Why, Lord?" Sometimes I can't even ask, "Why?" because words are unreachable. I have never experienced the kind of pain you are both experiencing right now. I do not know how you feel, but I think you need to hear that His love endures forever and His love endures in the room with you where you are and His love endures in the room where Anna will be tomorrow, and His love endures in your tears, and His love endures through your hours of fitful sleep and anxious pacing.
    His love endures forever. My prayer is that you will continue to feel His embrace throughout this trial. I know I don't know either of you personally, but I hope you won't mind me sharing what I feel God put on my heart to say tonight. Kathy K

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  5. My hope is built on nothing less
    Than Jesus’ blood and righteousness.
    I dare not trust the sweetest frame,
    But wholly trust in Jesus’ Name.

    When darkness seems to hide His lovely face,
    I rest on His unchanging grace.
    In every high and stormy gale,
    My anchor holds within the veil.

    On Christ the solid Rock I stand,
    All other ground is sinking sand;
    All other ground is sinking sand.

    His oath, His covenant, His blood,
    Support me in the whelming flood.
    When all around my soul gives way,
    He then is all my Hope and Stay.

    On Christ the solid Rock I stand,
    All other ground is sinking sand;
    All other ground is sinking sand.

    When He shall come with trumpet sound,
    Oh may I then in Him be found.
    Dressed in His righteousness alone,
    Faultless to stand before the throne.

    On Christ the solid Rock I stand,
    All other ground is sinking sand;
    All other ground is sinking sand.
    On Christ the solid Rock I stand,
    All other ground is sinking sand;
    All other ground is sinking sand.

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  6. Praying for you both. Give Alissa my love! You both are in my prayers everyday! I look on this blog at least 10 times a day! I wish I could be there to provide a shoulder to cry on for a while.

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  7. Praying for you all. Asking Jesus for complete healing for your beloved daughter Anna.

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  8. This is why you should stay hopeful, not just because she is your child and you love her..but even the Lord tells us to rejoice in hope, be patient and continue in prayer.
    Romans 12:12 "Rejoicing in hope; patient in tribulation; continuing instant in prayer;"

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  9. Thank you for the update....it is so good to have specific things to pray for.....God is good. Any feeling you are having is OK (and probably normal for such circumstances)....love you, praying for you....keep those specific prayer requests coming. It is a blessing to see you loving Anna Joy just the way she is..... : )

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  10. "Faith is confidence in what we hope for, and evidence of what we cannot see." Hebrews 11:1(NIV) It's good to come back to reality and remember how serious things really are, because it reminds us all that it is only the hand of the Loving Father (through doctors, and fellows, and nurses, and through lots of family TLC) that healing comes. But it's also good to remember that faith does not make sense, is not visible evidence. And still, faith is more than "willing" someone well. KEEP THE FAITH, whether through jokes, or tears, the shoulder of a friend, or the silent plea for the Presence of the Lord. HE IS WITH YOU!

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  11. I think your strength and positive attitude in the situation you are in is inspiring!!! You are amazing people to not be a puddle on the floor right now. It inspires me to be a better person every day!!! I thank you so much for sharing continually with everyone! Keep your positive attitude no matter what. And know that we are all still praying for all of you and your sweet baby girl!!! I will be using my birthday wish today that Anna gets stronger each day and you all continue to feels Gods hands on you and her and that you are all looking at the woods as a distant memory of the journey to bringing Anna home very soon!!!

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  12. You are in wonderful hands at Children's. We found ourselves in a similar predicament 5 1/2 years ago with our son. We spent a month and 1/2 at Children's when he was born. He is living with his heart defect and will one day have surgery to correct it. The doctors were great and the nurses are your best friends! Lean on them when you need to, they will be there for you. If you ever have Ramah or Vicki, they are both THE BEST! Our son's cardiologist is Dr. Lewin and he is great, but they all are! The best advice I can pass along from our experience is take care of yourselves (esp. healing Mama), get as much rest as possible and never be afraid to ask for help. I am thinking about all of you and sending good thoughts and prayers your direction.

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  13. Just got to say I believe fully that it is your positiveness that has gotten Anna where she is now. You have fully embraced God in this, as you should. I believe that babies can feel (even if they are asleep) the attitudes of those around them. She can feel how much you love her. Of course you get drained look at what you are going through but what is great about you two is that you refuse to let it get the best of you and you let God do his amazing work. Stay as positive as you can as long as you can. Our prayers are with you.

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  14. Stay in the moment as that is all we are assured of. Stay positive as attitudes everything!

    The longer I live, the more I realize the impact of attitude on life.

    Attitude, to me, is more important than facts. It is more important than the past, than education, than money, than circumstances, than failures, than successes, than what other people think or say or do. It is more important than appearance, giftedness or skill. It will make or break a company... a church... a home.

    The remarkable thing is we have a choice every day regarding the attitude we will embrace for that day. We cannot change our past... we cannot change the fact that people will act in a certain way. We cannot change the inevitable. The only thing we can do is play on the one string we have, and that is our attitude... I am convinced that life is 10% what happens to me and 90% how I react to it.

    And so it is with you... we are in charge of our attitudes.

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  15. Hi Alissa. My name is Jesse and I found your blog through Rachelle Downie. My son, Luke, was born four (almost five!) years ago in Tacoma, WA and has had two open heart surgeries at Seattle Children's. He has double inlet left ventricle, which is in the same single ventricle family as Anna. He is four years post-Glenn and will have the Fontan in the next couple of years. I have been checking in on sweet, beautiful Anna and praying for her. I so know how hard it is to see your child need such significant care and medical attention. If you ever need anything (we are in Puyallup) or just need a listening ear, please don't hesitate to email or comment on our blog. God's many blessings to you!!!

    Heart hugs,
    Jesse
    http://smithfamilyjourney.blogspot.com

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