6.25.2009

Hurts My Heart

The past few days have been up and down for Avery. For the most part, she is still stable...just trying to get used to the little changes. She is back on the pacemaker because her heart rate dropped some. She is doing better now. She is still not peeing as much as the docs would like, but some of that is to be expected because they removed the medication to help her pee. Her little kidneys just need to get used to working on their own. She is really swollen and doesn't quite look herself. Hopefully she can get rid of some of the fluid soon. Her ventilator setting was increased some because she was not getting rid of CO2 as much as she should. Her meds for sedation have also been weened so that is good. She is able to move around a little more. She is now getting 2ml an hour of formula. She still seems to be tolerating that well. The nurse said she pooped twice today. We are really in that stage of one step forward and two steps back.

All of this is just so hard to watch. We just want to take it all away. We love her so much. I am feeling tired today and a little defeated.

Carissa

17 comments:

  1. Remember GOD is with Avery and you always. Our prayers continue to come your way.

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  2. AnonymousJune 25, 2009

    Hi guys, I have been following your blog for a month now, since I too had a baby with cdh. It has helped me to know that I am not alone in this journey. I say prayers for your Avery every day. Susan Caudle susansagle@hotmail.com

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  3. Praying that Avery's kidneys start working well, that her heart grows stronger each day and that you all would have peace and joy even now. Love you guys.

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  4. I have been checking in on little Avery and praying that she defeats the big bad CDH monster. Praying for her little heart to grow stronger with each beat and for lots of pee!

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  5. Praying for your strength and hers!!!

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  6. Prayers for you guys and of course for lil miss avery. We think of you often.

    Ash

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  7. AnonymousJune 25, 2009

    May God give you both strength, encouragement, and peace. Praying that Avery will regain her strength and be restored to health.

    Robin Gaspard Cosenza

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  8. I haven't read the entire story but I plan to read up on your family this weekend. I will be praying for your daughter - I can't imagine having a sick child.

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  9. I think of you and Avery often. Praying for strength for you all during this very difficult and trying time. I wish I could take your pain away. The world loves Miss Avery and the fight she is giving to be here with you.

    Much love to you, Tracy

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  10. Not a day goes by that I don't pray for Avery and think of your family. I obsessively check for updates on Avery's condition. You are strong for Avery and Kaitlyn. It is simply amazing and no matter what is thrown your way just take it one moment at a time. That's the only way to do it with CDH.

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  11. Praying for Avery and her recovery. Keep the hope and stay strong!

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  12. AnonymousJune 25, 2009

    The peeing will take time for the bladder to wake up from the meds. My bladder was paralyzed for few months after giving birth and it was due to epidural. I think about baby Avery every day and continue to pray hard for her recovery.

    much love,
    Dai

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  13. Those steps backwards are so discouraging. Praying for a large step forward very soon!

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  14. AnonymousJune 26, 2009

    I'm so thankful that the food is flowing through little Avery. I know there are too many steps backward right now, but having bowels that work is a huge step forward for a CDH baby. I'm praying that you see more steps forward in the next few days. Hang in there, we are all pulling for you.

    Heather Briggs

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  15. I check in on your little Avery several times a day!! I am praying that she will take nothing but steps forward today!! Hang in there!! God is good!! I will continue to pray for you all!!

    Sissy
    Nashville, TN

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  16. I have been following Miss Avery's story. I am praying for lots of tee tee and for her little heart to only get stronger everyday.

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  17. I just recently started to follow Avery & your Family. I know that your whole family is dealing with VERY DIFFICULT times in your lives right now...and it is easy to loose your way or wonder why this is happening. I know no one can give you an answer-but I hope it helps to remember that these moments are a part of life that teach us to treasure the happy times and appreciate the little things. Continue to keep your strength as a family and continue to Keep the Faith for Avery. Your family is in my thoughts & prayers!!!

    God Bless!!!

    Love from Arizona

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