Monday, April 27, 2009

Jimmie, TKM and The March For Babies

First of all I want to remind everybody that The March For Babies walk is this Sunday, May 3rd in the Kansas City Power and Light District.

14th & Walnut Kansas City, MO 64106
Walk Distance: 1 miles
Registration Time: 8:00AM
Start Time: 10:00 AM

Thank you to those of you who have already signed up online to walk with Rachael and I. You can also just show up on Sunday morning at 8am and register to walk. We’d love to have a big group! There is a “Family Teams” tent with seating and refreshments where we will meet. It does not cost to register, but they recommend a donation of $25. Those of you who have already signed up online can just print your "sponsor form" out and I think-- sign it and bring it with you. You should have a link to your form in the first email they sent you after you signed up. If you can't find this it's no biggie and you can just fill out the form when you get there Sunday.

This is Jimmie's Team page where you can go to donate or sign up!

http://www.marchforbabies.org/teams/651716

Also a very BIG thank you to those of you who have already donated online. As a whole- there has been over $300 donated. I’m so touched by those of you that have signed up for this and are out there raising and donating money in Jimmie’s name!

We are excited to be more involved with this organization. There are actually research grants for “outside of the box” therapy for preemies and babies with birth defects. My Mom has been working on a proposal for her TKM (The Ki Method) therapy! http://www.kinginstitute.org/ We are really hoping that this knowledge my Mom has may be able to prolong pregnancy in a mother who is at risk while preparing the baby to do as well as possible after birth. We have seen God’s hands at work with this therapy. So pray for Andrea while she starts the process of trying to raise awareness and resources for the use of TKM in these situations.

On that note- The Doctors were AGAIN reiterating today how unusual and amazing Jimmie’s journey has been. They talked about how they NEVER see babies who are barely 26 weeks on the nasal cannula. Jimmie was on the vent for 5 days, CPAP for 1 day and went to the High Flow nasal cannula on his 6th day after birth. He was only 25 weeks 6 days. And I have said this before, but we know that his ACTUAL gestational age is even a few days younger than the Doctors have put him. The Doctor also said that it is very rare that a 24 weeker would go home before his due date and they are pretty optimistic about Jimmie being home before then! They really are in awe and his NICU stay is talked about in miraculous terms by the medical staff.

What 24 weekers commonly go through are numerous spells with desats and bradys, brain bleeds, PDA (heart duct surgery), NEC (necrotizing enter colitis), infection, pneumonia, pulmonary bleeds, ROP, low muscle tone, problems holding their body temperature (even when they are at the 4 pound mark) and many other problems with major organs. Jimmie has had none of these things! (well- we’ll see about the ROP on Wednesday with his eye exam)

The medical staff has repeatedly commented on how Jimmie has been so atypical! They’ve said he doesn’t know his age. They even have gone so far as to question Rachael’s dates, but have noted signs in Jimmie that confirmed his age. (his fused eyes, measurements etc…) And as I have said before there is no doubt at all- according to Rachael. And to go back even further it was a total miracle and against all odds that Rachael was able to carry him as far as she did. The Doctors (based on experience) were not very optimistic about being able to hold off his birth for very long. Dr. Ridgeway said more than once how much we were beating the odds! Mom and others experienced in TKM did sequences (touch therapy) on Rachael as soon as she went to the hospital every 8 hours at the very least. Rachael also applied TKM to herself almost constantly. And since Jimmie’s birth TKM has been applied in some way at least once a day and more often than not- multiple times a day! So as I said we have really seen God’s hands at work with this therapy. And it is the biggest thing that is different in Jimmie’s journey compared to other babies. Believe me when I say that we know prayer and the number of people that have prayed is a factor, we believe it is all interconnected. Prayer- God- guides Mom’s hands and mind as she applies TKM. Prayer guided Dr. R’s hands as he put in the Cerclage. And we know quite a few of the Doctors and Nurses in the NICU are praying people! I am so grateful to God for all of this. Glory be to God!

Jimmie doing really well. He had a bunch of labs run yesterday and everything was great news! His blood gas was wonderful, his CBC was great, his hematocrit has gone up 2 more points! Woohooo! And everyone finally got the guts to try putting the feeding tube in Jimmie’s nose (NG tube). It went well and this is going to be much better for his eating by mouth situation! The only thing that’s not so great is that he’s had a hard time gaining weight the last week or two. It is directly related to all of his hard work learning to eat, not knowing for sure how much he gets when he breast feeds and the OG tube causing problems. The Doctor really does not want him to lose any more. He is around 4 pounds 8 ounces or so. We are really hoping this new situation with his NG tube will help with this. Pray your fat prayers people!!! (-:

Sheesh- Congratulations if you made it this far! I guess this makes up for short posts and not writing one yesterday at all. Thanks Mom for filling in for me!

Love,
Amber

P.S. I have put in an ORDER for current pictures of Jimmie- our cutie!

P.S.S. Thanks for the prayers for Kenna she's still fighting a nasty cold!

6 comments:

  1. I have been following Jimmie since March when Kristy Rothert told me about him. I have often thought of Rachel and Justin and Jimmie and look forward to reading updates. I think of them because I have made the same journey they are making now. I did this 2 1/2 years ago with my twin girls who were 26 weeks 3 days and we were at Overland Park and saw the same perinatalogy group . They are in the best place they can be . My girls were 1lb 8oz and 2 lbs 1 oz. They had a lot rougher start then Jimmie and they are doing great. Rachel I want to tell you to hang in there becasue you are at the end of your time there and I thought that was the hardest part of the NICU journey because you are so close and all you want is to go home. You will very soon. I prayer for you often and wish you all the happiness that bundle of joy will bring. I always say that God must have great plans for my girls because just like Dr Ridgeway told you that you were beating the odds so did I and so did my girls just like Jimmie so I am sure God has big plans for him also . Keep the faith and keep up the great work .

    Thoughts and Prayers
    Becky Winibnger

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  2. All such great news! Praise the Lord the ng tube went in fine. What a relief! Keep on eating, Jimmie!

    Thanks for the updates Amber! The longer the better--we love all the info!

    Love you all so much,
    Adrian and Janelle

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  3. He's a little fighter!!!! So happy that he's doing well...still praying for him to come home quickly!!!!! Can't wait to see new pics of him.

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  4. I'm so glad to hear the NG tube went well! Now he can really work on feeding and growing! grow grow GROW!!!

    Good luck as you do the March of Dimes walk. We did ours on Sunday and it was a beautiful day!! Our team raised $565! I will be donating to Jimmie's page on Saturday as well! :)

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  5. Go Jimmie, go Jimmie! Jesus has been sooo awesome in this situation. Fat prayers are coming Jimmiie's way!

    Praying for all of you guys!
    -Mary Gates & Family

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  6. Prayers and more prayers...

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