Friday, August 14, 2009

Jimmie We Need You To Eat

Eat Jimmie eat! Eat eat eat eat. Come on little man you HAVE TO EAT!!!! The past few days have been better in that Jimmie has been taking his feedings without as much struggle. However he is taking still less. He should be around 18 to 20 ounces in a 24 hour period. He was averaging 15 which was getting him by calorie wise with the move to formula. Now though-- the past 2 days, he's only taken 12 ounces.

Rachael told me yesterday she feels like hospitalization is inevitable and she just wants to get it over with. I'm hopeful that won't happen, but Jimmie does need to turn this around! Justin is sad and worried as well.

Children's Mercy nutrition is going to see Jimmie next week, but the Neo's can't see him until Sept. 6th. Justin and Rachael are frustrated by that.

Please please please keep praying for Justin, Rachael and Jimmie. This is a really stressful time for them.

Thank you so much for all of your comments under the last post! You all have no idea how much the words of encouragement and ideas/advice lift us up.


P.S. Allison asked a question in the comments and I never know whether I should respond to questions under comments or with the blog. Is there a blog etiquette I should know about? Anyway- I answered under the comments. (-:


  1. Hi Amber,

    If/when Jimmie is hospitalized will he be there until he gets the feedings down to what they need to be or until he gets to a certain weight? Bless their hearts - we'll be praying!

    Allison Dull

  2. Hi Allison,

    Thank you so much for your support and prayers! I am VERY hopeful that it won't come to hospitalization. Justin and especially Rachael sometimes have a harder time being positive or hopeful. It is something Rachael is working on and slowly, but surely her outlook is getting better. If he did end up in the hospital it would be for extreme failure to thrive (not gaining weight or losing for a good period of time) or for dehydration. My guess is a hospital stay would be fairly short. That they would tube feed him to get him out of harms way and have OT's consult with nipple feeds and there would be testing such as a swallow study and some others. A long term plan would be worked out depending on results. Rachael could learn how to tube feed him at home if it came to that. This is just my guess. As there would be a lot of variables in that scenario.

    The good news is up to now Jimmie has been thriving despite these issues. I expect that to continue to be the case!!! Sometimes a kid can thrive on less than a doctor thinks. Every kid is different.

    Just keep praying Jimmie will thrive and that Rach and Justin can be positive and hopeful!!!

  3. Amber,

    I have no idea etiquette either! :) Thank you for the clarification - I was/am hoping it wouldn't be a long hospital stay if it comes to that, I know that would be just devestating to them. We will be praying that he will eat and chunk up. I'll be praying for Rachael as well - I know she's got to be extremely frustrated and discouraged. Thanks again, Amber - keep us updated!


  4. Praying for a BIG chow down for Jimmie...and NO MORE HOSPITAL!!! (praying for Rachael's sanity, too)
    Lots of love in CA!!!

  5. I would call CMH every morning. There are cancelations daily in their “specialized” areas. I know it is frustrating, but, it has worked for me in two different departments that I needed to get my girls into. Unfortunately, many appointments every day are “no shows”.
    In the pulmonary department, actually, I truly believe I got in, because after the third day, the nurse just figured that I was relentless.

  6. It's been a while since I've posted comments but I have been reading along.

    Have they mentioned possibly putting Jimmie back on an NG feeding tube? Sophia was on one for 2 months after she came home. She had pretty bad silent reflux and was on Zantac and Reglan for it. Her reflux was so bad it caused scarring in her airway that caused some narrowing. Might be worth going back on the NG feeds to prevent it.

    I hope Jimmie picks up on the feeds again! Still praying for you all!

    April and Sophia Kinker

  7. All of our prayers are for you Jimmie!

  8. We're still praying for all of you! God knows exactly what is wrong, and He's able to fix it. So we're praying for a complete healing. We'll also continue to pray for peace.

    "Peace I leave with you, my peace I give unto you: not as the world giveth, give I unto you. Let not your heart be troubled, neither let it be afraid." -John 14:27

    Lots of love,
    Adrian and Janelle

  9. I still pray for healing for jimmies reflux, nad peace for his parents. You can do it rach and justin.


    Chris W