Saturday, April 4, 2009

Update and some pics


This is Kaden yesterday afternoon when his stats were good--Before ECMO

This is this morning after he was on ECMO

We just got done visiting Kaden in the NICU. He looks sooo good compared to when we saw his last night BEFORE the ECMO. Our little man gave us quite the scare, but we came to realize that the problem with the ECMO procedure was not Kaden's. He was doing very well until the trach tube came out/got clogged. Then his little heart just could not withstand the lack of oxygen. But, we are only looking forward and not back. He is doing really well right now, they are pleased with his levels and are actually going to try weaning his off the paralytic drug. Which means we may get to see his eyes :) The brain scan machine show normal brain activity, so I am putting that out of my mind as well. He is going to be getting an ultrasound of his head everyday now that he is on the ECMO to check for bleeds on his brain. I was actually surprised how swollen he wasn't, but his nurses say he is peeing ALOT. I do expect him to get puffy, but as for now he still looks alot like he did yesterday.

I cannot explain to everyone what it feels like to be told that your son is probably going to pass away and they need you right now. I was almost in a catatonic state--I didn't cry the whole way to the NICU--I felt God with me and knew that I could not change anything that was happening. But when we got there and he was being stabilized I just tried to take a deep breath and told God that I didn't want Kaden to suffer in any way, and if his plan was to take him than just let me hold him and let him go peacefully. So I am praying that this is God's way of telling us that Kaden is meant to be here. We are so proud of how hard he is fighting and know that he is not ready to give up, so we will not give up either.

We feel your prayers and appreciate all your support. I am usually the "blog stalker" but forgive me for being a little MIA for the next few days. We are reading your comments--we read them together out loud and try to make it thru without crying. We have come to realize that Kaden & God are in control and instead of taking it day-by-day, we take it minute-by-minute. We love you all and our prayers are still with your little ones and families. Please continue to pray for our Kaden.

20 comments:

  1. Kristi, Craig, and baby Kaden
    I have been thinking of you all day! Kaden is so precious. Isn't it amazing how we Cdh parents can pull this strength from somewhere we didn't know we had. I know that it is prayers and God that is getting us through! I am glad to hear that Kaden is stabilizing and many prayers that he continues on that path. We love you and will be anxiously awaiting your updates ( i will become the blog stalker for you! ) Much love and prayers
    Ashley, David and ^Maxton^

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  2. I am praying for your little man. My little girl is watching out for him from above and is cheering him along on this fight. You should spend every moment with him while he is on ECMO and stable. I know Jason and I did with Addison. It is nice not to have to be on edge with the monitors going off. By the way, he is so handsome and always remeber that God is with you and Kaden on this journey and God will never give you more than you can handle. I am still rooting for him to be our little miracle.

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  3. He is such a strong little guy! I just knew he would be. I am so proud of you, Kristi, for trusting God in a time that is so scary and hard. Fear can be so powerful, but you are kicking Satan in the a$$. :D

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  4. He is sooooo adorable, just as he was in his ultrasound. Remember "Kaden" means fighter and he is one tough little guy. Hang in there, don't forget to take care of yourself too.

    Praying for you!

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  5. Kaden is adorable! So glad to read that he is stable and doing better. Praying for only good days in Kaden's future! That is good news he is not getting swollen too much yet and still peeing lots!! If he can handle the stimulation and his stats don't go goofy, try reading him a story or playing some soft music for him. I am sure he would love to hear his mommy read to him. Thinking of you and sending you lots of positive energy and strength for the weeks to come.

    Hugs, Tracy - Ian's mommy

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  6. We are thinking of you! We admire your strength and faith!

    Love, The Keirseys

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  7. I LOVE Kaden's "Lucky" hat, it's very appropriate for him! We're happy to hear that he's hanging in there...what a strong little man he is!
    Wishing you a restful, uneventful evening! Hang in there Mr. Kaden, you're doing great!
    Sending our love and prayers,
    Sheryl and Tom

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  8. kristi i don't even know what to say. we had one week in the nicu and it about killed us. i can't imagine being told that our son might not make it. i'm so amazed by how strong you guys are. i know that God has a plan. continue to lean on Him. He is there EVERY step of the way! we're praying for you all. my hubby keeps asking how kaden is doing and then we immediately pray for your entire family.

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  9. God will give you the strength you need to go thru this. He did with us and he will with your family.

    I read this many times and it gave me peace. I hope it helps you too. It's a fragment from Annie Johnson Flint's "What God Hath Promised":
    God hath not promised skies always blue, sun without rain, joy without sorrow, peace without pain. But God hath promised strength for the day, rest for the labor and light for the way." That light will be shining over Kaden night and day, look at it, breathe and pray.

    With much love,
    Joseph Carter DeJohn's "grammy"

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  10. Kristi you have been on my mind all day along with all us April mommies....we are saying prayers for baby Kaden....and tomorrow i will be adding him to our prayer list at church again... Please know we are all thinking of you and praying for your little fighter he truly is an amazing little boy and he can fight this...God bless hun and hang in there get sleep Kaden needs you to be strong for him too much love.

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  11. Craig and Kristi, you are in our prayers and we love you very much. Be strong and positive. God please bless Kaden and give him the strenght!

    All our love,

    Dave and Loren

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  12. Thank you for sharing those pictures and for taking the time to keep all of us "Kaden stalkers" updated. You are doing a great job!

    We know exactly what it feels like to get the phone call saying that your child will not survive without ECMO, and then sit in the conference room at the hospital while they list all of the possible, horrific, side effects of ECMO. We know what it feels like to put the pen down on that paper, scribble your name and pray to God that you are making the right decision to hook him up to ECMO. You are not alone and you will make the right decisions throughout this process. You will learn more than you ever wanted to know about medicine, blood, organs, xrays, head ultrasounds, o2 sats, CO2 levels....the list goes on. You will come to appreciate that machine and you will be terrified when the day comes to remove him from it and let him fight on his own. Just keep reminding yourselves that Kaden WILL be a survivor!

    Hang in there. As always, if there's anything we can do, don't hesitate to contact us.

    Many prayers,
    Kellie

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  13. We are all with you on this journey. You have our prayers. You are doing amazing and are both so strong.

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  14. I know the heartache and worry of being a brand new mom and not knowing what will happen with your delicate newborn. After my baby was born he was taken to a different hospital and I couldn't even get to him for two entire days because I could not physically travel to where he was. My husband watched over baby John for me.
    Kaden is a fighter, I can tell, and I will continue praying for his continued recovery, for continued positive brain scans, for the day when he can come off the ECMO, for the day when you can take your baby home!
    I am so glad that you have Liz there to help you out. I'll be praying for you!

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  15. That's fantastic news! So pleased to hear that Kaden stats are stable. And love the pictures, he is so cute! He is an amazing little boy and you guys are wonderful parents. We are thinking about you and praying that Kaden continues on this path and gets to surgery quickly. All the best!
    Ingrid, Alex & Alina

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  16. Kaden is a handsome little fellow and a strong one too. We are praying for Karen and for you and thinking about you all.

    Whatever we can do, we're here.

    Dawn
    http://www.cdhsupport.org

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  17. Wow, that had to be scary. I can't imagine Kristi!!! I'm so glad that you felt God walking beside you and there was a peace about the scare. He looks so good though. His coloring looks great, and I'm glad they are going to wean him from the paralytic drug that he's on. I can't wait to hear about his eyes. I know that you're scared, but Kaden also feels your strength, which is what he needs. What a trooper he is!!!

    We will not stop praying for you, Craig or Kaden.

    Blessings!
    Stephanie
    Brooke and Kamryn's mommy

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  18. We are thinking of you guys and praying hard for Kaden. Hang in there guys!

    Jen

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  19. Hi Kristi,

    Your little Kaden is so beautiful and I love all the pics!
    I could only imagine how difficult this must be but know that we are pulling for Kaden... You and your family are in my prayers! Stay stong Kristi and enjoy every minute with him. U will ne in my thoughts!

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  20. Kristi and Craig,
    Jen and I just want you to know that Kaden is in our thoughts and prayers. We greatly admire your strength, courage and faith through this difficult journey and we just want you to know how beautiful Kaden is and how lucky he is to have such incredible parents. God is watching him and will take great care of him. This, we know.
    With great love, Roel and Jen

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