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

  Unbelievable--you women are saints!  I pumped for Elanor for less than =
6
months.  I couldn't handle the stress of not getting enough milk, =
Elanor's
health, and caring for both her and her 2 year old sister.  Inevitably, =
when
I started pumping, Arwen would go nuts!  She got into something at the =
other
end of the house, she needed help with something, she wanted to pick up
Elanor and wanted help, and of course all of it was VERY important and
couldn't wait! =20
  We haven't had to change button size at all, because Elanor doesn't =
get
bigger around.  Both my girls are tall and thin (yeah, I have no idea =
where
they got that--not from me!).  When they grow, they get fat, and I start =
to
worry that they are eating too much, then all of a sudden, they are too
skinny and I worry that they aren't eating enough.  Then I notice that =
their
pants are 2 inches too short.  That's right, 2 inches!  Both girls grow =
a
couple of inches at a time, and at the same time!  I think they conspire
when we aren't in the room so they can get new clothes!  Anyway, =
Elanor's
button gets a tiny bit tight, then when she grows and thins out again, =
it is
fine.  Her afo's on the other hand...sigh.  We got new ones the =
beginning of
summer, and when we came back for her 2 week check they were 2 inches =
too
short.  I just noticed this morning that they were ANOTHER inch or so =
below
the back of her knees.  Of course--we just went clothes shopping last
weekend! :P

Jennifer Vanderbeek, mom to Elanor, 5 (T18); Arwen, 7; caregiver to Joe, =
26
(cerebral palsy); Eric, 20 (cerebral palsy); and wife to Andrew.


-----Original Message-----
From: tri-med-bounce@xxxxxxxxxxxxx [mailto:tri-med-bounce@xxxxxxxxxxxxx] =
On
Behalf Of Irene Smith
Sent: Thursday, October 27, 2005 11:04 AM
To: tri-med@xxxxxxxxxxxxx
Subject: [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=20
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=20
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=20
it sometimes.  I try to keep her in onesie type outfits so  she can't =
play=20
with it too much.  Her button is so well healed and quite tight.  It =
would=20
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=20
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=20
trying to feed by mouth.  She never aspirated, so eating by mouth is =
safe,=20
she just vomited a lot and got too weak to eat enough to thrive.   Once =
we=20
had the button, we still kept trying and trying to introduce foods by =
mouth=20
and evenutally just gave up.  I felt sick about it at first.  Like I was =
a=20
bad mother who wasn't trying hard enough.  However, I finally just =
realized=20
that she hates it, we hate it, and we have enough other things to work =
on=20
with her.  Resorting to 100% tube feedings actually made our life so =
much=20
less stressful and we could enjoy Caroline more.  This topic has been=20
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%=20
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=20
notice the huge changes from week to week.  Since then, she really =
hasn't=20
gained much if anything, but she is definitely  taller.  I guess the =
dr's=20
care much more about length than pounds.  If she is growing taller, she =
is=20
doing OK.

I hope that helps!!
Irene
Christina (4), Caroline (2 and partial trisomy 17p) and Kallie (born=20
6/23/05)
http://www.caringbridge.org/visit/carolinesmith

----- Original Message -----=20
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
>=20

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



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Version: 7.1.361 / Virus Database: 267.12.5/149 - Release Date: =
10/25/2005


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

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