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Monday, December 3, 2012

Saturday- Dec 1st / Sunday- Dec 2nd


Like you guys, I'm getting all my updates and info through Heidi. It's been three days now since I've seen Noa. I picked up the cold that the kids have... Last thing that I want to do is go spreading my virus to Noa or the NICU. I've been spending a lot of time with Ruby and Emmaus and I picked up a copy of The Hobbit to read before the movie comes out. It's been like catching up with an old friend.

So we didn't see much of a change with Noa today or yesterday. Still waiting on those kidneys to kick in. Dr's are hoping that this dialysis circuit makes it through tonight. They've been hoping to push Noa's kidneys with the circuit running for 7 days. Lately we've been running into problem with the circuits lasting for 3-4 days. She's shown, more often then not, that she doesn't like the change and her condition drops to a point that she needs intervention. (She hasn't fully "coded", where her heart has stopped and needed resuscitation, but it's still scary). These episodes tend to set Noa back a couple days... By the time she regains the ground that she's lost, it's time to change the circuit again... It's kind of a catch 22, It's care that her body needs, till her kidneys kick in, but because of her frailty, it's also setting her back. It's also not like her body is getting stronger and adjusting to each episode, they're more likely doing damage. Another scheduled circuit change for tomorrow (Monday). Pray for pee or a smooth circuit change...

One thing that Heidi and I have talked about is that we're living so much in the moment, that it's hard to have time to process even what happened the day before. We've asked the Dr's and nurses to "tell us like it is", we don't want to be surprised by anything or caught unaware. The care conference we had on Wednesday was really heavy. Right in front of us on a white board were the things that Noa's facing right now. Noa's going to have a difficult road ahead no matter what, but the scenarios are worse if her kidneys don't start functioning.

It's hard not to thick about the toll that all of these treatments are having on her... even worse, what they've already done to her. She's overcome a lot so far and proven that she's a fighter. In terms of the marathon that we are in and where I stand:
 I'm at the point in the race where doubt starts to creep in about weather I went out to fast and strong at the start, wondering if I'm going to be able to make it to the end. I start letting the overwhelming task (big picture) at hand defeat me. I've done plenty of races to know that if I keep my feet moving forward, I'll get my second wind. There's been some nights that I left the room crying because it's hard to see her that way. We still haven't heard her voice, haven't held her. It's only been recently that Heidi's had time alone with her, where the nurses left the room for privacy. I'm not going to lie, It's hard to have hope some days... To think of all she's been through, is going through now, and will go through (just to survive)... when side effect like deafness or delayed development are welcomed rather than possible organ transplant or neurological damage. If you noticed that I didn't put death in that list of side effects, it's because I don't know where it fits in. Heidi and I don't need Noa in our lives for us. We want her to have a good quality of life that is not for our selfish benefit. We can't discount all she's overcome and
the improvements we've seen in her heart and lungs. Only God knows how much more she can take.






















I hope this didn't bum anybody out. It was just my attempt to process the last few days of thinking and whats weighing heavy on my heart. It's hard to know what to share or what's too personal. I know that a lot of you are in this with us... We ask you to pray for all of us, (and even ask you to do a potty dance to encourage her kidneys). This is all stuff we need prayer and encouragement for. Please leave comments for us if you have questions, encouragements or even prayers for us.

Thanks for checking in,
JR

6 comments:

  1. Thank you JR for sharing you heart, hopes, fears and struggles. We want to hear all that you are willing, because we would love nothing more than to help hold you up through this marathon, and would love to be there with you guys, but we know our prayers can have even more effect than our presence. You are amazing parents.
    Annie

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  2. A friend in my baby group keeps me updated on Noa and gave me the link to your blog. Every night, right before I go to sleep, I say a pray for your little girl (and for your family). Your patience in seeing what God's plan for Noa and your family is astounds me. Just know that there are many people out there praying and thinking of your family.

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  3. Justin and Heidi we love you so much and I find it so helpful to read these blogs. The info we get from texts is good so we can pray and know what's at hand, but these blogs let us know how you're doing with it all, the bigger picture for Noa and how we can pray. Don't worry about bumming us out, that's not even a factor or an issue that should cross your minds. We are WITH you as much as we know how to be, and wish we could be with you in person. I find myself praying for you and I'm unable to imagine how this must feel. I am so impressed by your love for her and your reverance for God in all this, and I agree with Annie, you are amazing parents. To all three of your kids! I SO pray you get to hold Noa and hear her voice very soon. What a treasure she is.

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  4. Good afternoon Justin and Heidi, I just want you to know we are praying for you. Take heart and don't give up believing that God is good and is working all things for his glory and your good. Like you said just keep putting one foot in front of the other and the living God will give you that "second wind".

    Your sister in Christ,
    Jenelle Bolyard (Ian's wife, the t-shirt guy)

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  5. What a hard race you are running. We are crying and praying with you. Our hearts are too heavy to bear.

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  6. Hi,
    Just got caught up on the blog! I am continually amazed by how you guys are holding up through all of this. If I was bummed by your openness I would be no friend or sister in Christ. You have EVERY right to feel the way you do. You guys are an inspiration to many. When I updated our church this past Sunday, I reminded our congregation that God sent a baby named Jesus that we would be forgiven in all our sins. I then went on to say that he has now sent another baby, Noa Grace to remind us all that our strength ONLY comes from Him. This little girl, YOUR little girl, is an inspiration and daily reminder of how precious life is. My little bot prays daily for her before we eat, he often asks how she is doing and also if she will live. Kids are so direct! I remind him that all our lives are in the hands of God.
    Know that you are being held up by many people who do not even know you.
    Stay strong but most of all stay real, we love you that way.
    Thanks for the news,
    Love The Perje's

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