Wednesday, August 10, 2011

Easier Said Than Done

We just left the hospital where we sat in on morning rounds and talked to the doctors. We have some time before they finish up rounds and we can go back and see Caden, so we slipped away to grab some breakfast and process.

The good news is that Caden is back in a sinus (normal) heart rhythm, thank you all so much for praying for that specifically. His blood pressure is a little low, but the doctors said that is probably the result of the sedative they had to give him because he was moving around too much. They want him to move around a little because it will help with drainage, but the doctor said "he's an active little guy" and was moving too much so they had to give him the sedative. His swelling went back up, probably because he was in JET rhythm for so long and didn't tolerate it well. So they have put him on diuretics to help him get rid of the fluid in his tissue so they can close his chest (so pray that he will pee so that the swelling goes down and they can close up his chest). They weaned his ventilator a little bit more today, he's breathing on his own quite a bit now. Today is mostly a day for him to rest and recover from being in JET rhythm for so long. We need everything to stabilize, and blood pressure to go up.

He also had an echo again this morning and they said the mitral valve is a little leaky and in surgery they noticed abnormal tissue around the mitral valve. That's another thing that time will have to tell what needs to be done. It could fix itself or it could need further intervention. We felt a little blindsided by this one because we thought the mitral valve was completely normal, and I just want my poor little man to have something go right for him. It's so hard when it feels like it's one thing after another after another for him. We just need y'all to pray for his heart that God would heal it, especially the mitral valve and left ventricle.

This journey feels like we take one step forward and one step back and it's been difficult for us to be excited about any gains because we're so concerned about the losses. Looking ahead all I can see right now is a long dark road, and it's terrifying. I know the only way to get through is to step forward and walk THROUGH the darkness and remember that God says that "even the darkness will not be dark to you; the night will shine like the day, for darkness is as light to you" (psalm 139). But that's a little easier said than done.

There's something called "floundering" where you hunt flounder at night using a lantern and a spear, and you wade through knee deep water in the darkness. The lantern produces enough light for you to see about three feet in front of you and to the bottom of the water. When you look too far ahead, all you can see is darkness and you lose track of where you are, and you certainly wont catch any flounder. But when you stay focused and keep looking just at the three feet ahead of you, you dont notice the darkness (Adam said someone emailed or messaged this to us, but we can't find it anywhere now - so thank you if you're the one who sent it to us!) This is such a picture of where we are right now.

Please continue to pray for us, we're both feeling a little numb and everything seems surreal. It's like trying to live two lives, one at home with Jayci and one at the hospital with Caden. And it's emotionally and physically exhausting, and we're about cried out right now. So pray for strength and for the Lord to continue to carry us through it step by step, because that is the only way we're making it.

And pray for Caden, for rest and recovery. And for miracles. We are so thankful for the miracles we have already seen in and through Caden. He is an amazing testimony to the Lord's goodness and I am amazed at the way he has touched the lives of more people in his week of life than I have in 26 years.

The board of our non-profit put together a letter with ways y'all can help and support us, I think they will post it on here later today. We cannot thank you enough for the way we can feel you holding us up and cheering us on.

We made Caden a CD to play by his bed, and last night accidentally put it on repeat of track one - it took it playing about 4 times before we realized what was going on and fixed it. But I told Adam this morning I was glad that it got stuck on that song because the words were "you are safe in the arms of the Father." That has been playing through my head ever since - our sweet baby truly is safe in the arms of our Father. And as much as I wish that he was in our arms, I am glad I know the One who is holding Him, and I'm glad that He is holding Adam and I too.

God is good.

17 comments:

  1. I came across your blog via twitter and I just wanted to let you know I will be praying for your sweet Caden! I know God is holding all of you close right now! Prayers for strength, peace and healing come your way!
    Chele, KS

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  2. This made me cry for you and Adam because this period of Life you're going through is, unfortunately, all about floundering.

    I remember not even being able to comprehend a time when Iris would be healthy or not in the hospital, and as a serious planner of Things--this was a struggle for me.

    Having a child in the hospital forces you to live hour-by-hour and that is incredibly emotionally exhausting. And caring for a toddler in the midst of it is almost surreal. I know.

    Know that the news of them being able to close his chest is awesome; an incredible step forward. Weaning the vent is also great news as his breathing on his own. Wrap these good things like a blanket around your soul and mind. Use them as a buffer against the doubts as to what the future may hold.

    We are praying for you.

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  3. That is great news that he is breathing on his own. I pray that his valve and ventricle are divinely healed. Praying his swelling goes down and that his swelling goes down. Continue to trust in the lord for your strength.

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  4. when I pray for y'all I keep getting a picture of Caden nestled in God's big, strong hand. He is holding your little guy!!! Caden is never alone...and neither are you guys!!

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  5. We are pregnant with our first child, a sweet baby boy, and it breaks my heart to read about sweet little Caden! Loved the flounder story that you shared today :) Please know that my family is praying for Caden and the rest of the Stanley family from Bixby, Oklahoma.

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  6. Becca, I had to drop something off for Charlie at work today and was real close to Egleston, but I wasn't sure if you were up for visitors. I find it ironic that my heart, along with the hearts of so many others, are aching for you and Adam as we cry out for healing for Caden. The community of believers is strong and deep, and we are fighting and praying for your family. All our love.

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  7. I just came across your blog via Twitter as well and wanted to let you know that I am praying hard and specifically for Caden and the rest of your family. Although I don't have any children, I do have a nephew that was born with a congenital birth defect and can relate to how hard it is to not be able to just bring the whole family home while the little one suffers. That being said, I have faith that he'll heal and look forward to happy updates coming soon! :)

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  8. Praying in Chicago. Trust that God has that baby right in the palm of His hand... rocking him gently thru the night, protecting his spirit from the physical challenges and preserving his joy.

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  9. Praising God for bringing him out of JET and praying for his swelling! I totally understand what you mean about floundering. We certainly felt that way with Brayden. Thank you for letting us know specific ways that we can pray!

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  10. Praying for your family and for little Caden. I know that God is watching over all of you.

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  11. Praying for miracles, healing, strength and comfort for you all. We serve a Mighty God!
    Love and Hugs,
    The Russell Family

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  12. I have been "floundering" before with what God was doing with our children and our life. Please know you are in my prayers and my heart!

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  13. Carla and I, (Townsend) are praying so very hard for your little Caden. Specifically,we are thankful that his heart rhythm is normal now, and that although he had to have a sedative, its because he is such a fiesty little guy! We are also praying specifically that his mitral valve will just correct itself with time and that Caden starts 'peeing' up a storm so that they can close up that little chest. You are two amazing parents, and this little one and your daughter are so very fortunate that God picked you to be their parents. Love and prayers to you all.

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  14. Becca - my heart is breaking for you and your family, but it is also warming by reading your sweet words and hearing of your strong faith. I am praying for Caden and your family and hanging on every word and update.

    Much love, Laura Stechmesser (Luke's mom)

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  15. continuing to pray. for Caden's complete healing yes.

    but also for you, Becca and Adam.

    that you get the rest you need, both physically and spiritually during this time. that God takes the few hours you are getting and makes it as refreshing as a dozen.

    that you continue to hold fast to God and each other.

    grace, peace, and love to all of you!

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  16. I'm praying for you and your family. May God keep you in perfect peace as you fix your minds on Him (Isaiah 26:3)

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  17. Adam and Rebecca, I have been praying for you both, Jaci and for your little baby Caden. I went to high school with you both (Dana Hrabosky)and wanted to let you know that I have been following your blogs from Jill Daughter's facebook page and it breaks my heart to hear what is going on in your life. I know from personal experience that God is our ulitmate healer. I was diagnosed with stage four kidney cancer last fall, had my left kidney removed and on treatment for my right kidney now. I can tell you that now more than ever I know that God is with his loved ones, hears our cries, and still performs miracles today! I can not imagine what you are going through, but know that you are in God's hands and that he will give you all strength, peace, comfort, healing, and bless you beyond belief. I am praying for you guys and little Caden. If you need anything just ask. Blessings, Dana

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