[tri-med] Re: feeding tube question from a former list member

First of all, I want to say that I am AMAZED that Mimi is still pumping 
breastmilk for Tierney.  That is just so incredibly wonderful!  I pumped for 
Caroline for a little over a year.  I am so glad I did, but I never want to 
do it again!  I can't imagine doing it for over 2 years!

Caroline has a Mic-Key button.  It is fairly low profile, but she will rub 
it sometimes.  I try to keep her in onesie type outfits so  she can't play 
with it too much.  Her button is so well healed and quite tight.  It would 
be quite hard for her to pull it out.  When we change it, even we have a 
very hard time getting out even after the balloon is deflated.

I can understand how hard this decision is.  We really didn't have a choice 
on getting the button as she would not have survived much longer without 
one.

When we first got Caroline's button, I was emphatic that I wanted to keep 
trying to feed by mouth.  She never aspirated, so eating by mouth is safe, 
she just vomited a lot and got too weak to eat enough to thrive.   Once we 
had the button, we still kept trying and trying to introduce foods by mouth 
and evenutally just gave up.  I felt sick about it at first.  Like I was a 
bad mother who wasn't trying hard enough.  However, I finally just realized 
that she hates it, we hate it, and we have enough other things to work on 
with her.  Resorting to 100% tube feedings actually made our life so much 
less stressful and we could enjoy Caroline more.  This topic has been 
discussed on the list many times, but Caroline is happier being tube fed and 
that makes us happier as well.

Also, I wanted to say, that when we finally transitioned her onto 100% 
Pediasure at about 18 months, she gained about 4 pounds in one month and 
grew at least a few inches!  It was absolutely amazing.  You could actual 
notice the huge changes from week to week.  Since then, she really hasn't 
gained much if anything, but she is definitely  taller.  I guess the dr's 
care much more about length than pounds.  If she is growing taller, she is 
doing OK.

I hope that helps!!
Irene
Christina (4), Caroline (2 and partial trisomy 17p) and Kallie (born 
6/23/05)
http://www.caringbridge.org/visit/carolinesmith

----- Original Message ----- 
From: "Loren Warnemuende" <lorenwarn@xxxxxxxxx>
To: <tri-Med@xxxxxxxxxxxxx>
Sent: Thursday, October 27, 2005 11:41 AM
Subject: [tri-med] feeding tube question from a former list member


> Hi all!
>
> I'm sure many of you remember Mimi and her daughter Tierney (T18) who
> were on the list a year or so ago.  They had to take time off due to
> extra stresses (Mimi's son Keegan was diagnosed with leukemia).
> Anyway, I just got this email from her and thought I'd pass it on to
> you.  I'll forward any responses to the list on to Mimi.
>
> (Brief family update:  Keegan is trucking along--I believe he's in
> remission right now, but it's one of those things they have to keep
> watching.  Tierney is 2 1/2 now and just beautiful!  The rest of the
> family is well, but they were all displaced over the summer as major
> construction was going on down the street from their house, and they
> were concerned about Keegan lowered immune system.  They hope to be
> back in their home by December.)
>
> Here's the note:
>
> Begin forwarded message:
>> Date: Wed Oct 26, 2005  2:59:30 PM America/Detroit
>> Subject: feeding tube
>>
>> Hi Loren,
>>
>> Hope you, Kraig and the kids are doing well. In spite of the drought,
>> we are having a colorful Fall.
>>
>> We are doing alright here. Can NOT wait to get back in to our house.
>>
>> Tierney is doing fine but I am, at long last, going forward with a G
>> tube for her.  She is not gaining weight, in spite of the fact that I
>> spend over 4 hours a day feeding her. She loses ground when she is
>> sick--the stress of getting food in to her her is just so high. I am
>> still pumping breastmilk for her and I have lately been trying to
>> transition her on to some pediasure mixed with my breastmilk. She is
>> very resistant, and I am just not sure how long I can go on pumping
>> for 2 hours a day to meet her needs. Honestly, I am not--she is
>> gaining and losing the same ounce month after month.
>>
>> Long story short, I was hoping you or perhaps someone on the list
>> could give me the lowdown on feeding tube options so I can go in
>> educated. I have heard that the Mickey is low profile and pretty easy
>> to use. Tierney is active and opinionated enough that I think she will
>> pull at something that sticks up much.
>>
>> I have some experience with G tubes as I place them in dogs and
>> cats--but ours are designed to be temporary and somewhat cumbersome to
>> use.
>>
>> Also--what tests did Keren have to have done prior to her G tube
>> placement? I hate tests.
>>
>> Thanks a million Loren. This has been a long time coming and I am
>> anxious to make Tierney's feedings more successful and less stressful.
>>
>> Love, Mimi
>>
>
> Loren (wife to Kraig, mom to Keren Elyse, T18, 3 years old! (9/27/02),
> and Clarissa Joanne (7/17/05) )
> Southeast Michigan
> http://webpages.eng.wayne.edu/~ad6075
>
>                  Building ___ooOOoo__ Rainbows
>                       www.trisomyonline.org
>                  Families Helping Families On-line
> 

                  Building ___ooOOoo__ Rainbows
                       www.trisomyonline.org
                  Families Helping Families On-line

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