[tri-med] Re: Need reassurance

First of all, my prayers and thoughts are with you! It is often said on this
list that you have to follow your heart and that no one can tell you what to
do, but I would like to add that if you believe in your daughter to fight
the fight, then you are doing the right thing. We didn't go through
everything you are going through with Matthew, but we had the early ups and
downs that put you through the emotional roller coaster you must be on. Hang
in there, take each minute at a time and cling close to those who support
you and can give you a hug when you need it!

Ruth, wife to Rudy, mom to Brendon (19), Scott (16), Joshua (13), Matthew
Rudy
(Full T18, born 09/13/01, and Rudy Matthew (born 08/13/04)
http://members.cox.net/t18mom

Lord as I face each new day, grant me power, perseverance, patience and
peace.

> -----Original Message-----
> From: tri-med-bounce@xxxxxxxxxxxxx
> [mailto:tri-med-bounce@xxxxxxxxxxxxx]On Behalf Of Julie Johnson
> Sent: Monday, December 20, 2004 1:47 PM
> To: tri-med@xxxxxxxxxxxxx
> Subject: [tri-med] Need reassurance
>
>
> Hi everyone,
>
> My name is Julie, and I have been lurking for several months.  My husband
> Scott and I have a four-month old daughter named Emma Grace.  She is full
> T18.  Some background on Emma--
>
> She was born August 5, about 5 weeks early.  She weighed 2 pounds
> 14 oz.  We
> knew that Emma had a heart defect (we thought tetralogy of
> fallot, but now
> the main concern is really just a large VSD) but decided not to have an
> amnio to find out about genetic anomolies, so we found out about the T18
> about 4 days after she was born.  After 10.5 weeks in the NICU in
> Topeka, KS
> (where we live), she was able to come home.  In the NICU, she was
> on a vent
> for just a couple of days, then on CPAP for several weeks, before
> "graduating" to high flow nasal canulas at room air. She needed the
> pressure, not necessarily the extra O2.  Emma went home on an air
> compressor
> bled with O2 to mimic the high flow canulas.  After 6 weeks at home, Emma
> ended back in the hospital.  Unfortunately, neither of Topeka's hospitals
> have a pediatric floor that can support Emma, so she's about an
> hour away in
> Kansas City.  She was admitted with severe respiratory distress,
> and because
> of a swollen airway, was not able to be intubated.  She received a trach
> almost three weeks ago, and is still on the ventilator.  They eventually
> diagnosed Emma with bronchopulmunary displasia and said her lungs
> have had
> chronic changes, though they don't know from what.  Aspiration is
> thought to
> be the culprit.  The cuff on her trach should prevent secretions from her
> mouth from getting into her lungs, and last Thursday she had a
> g-tube placed
> and a fundo done to prevent reflux (though there is no evidence of reflux
> being a problem).  She was having abdominal surgery to correct a
> mal-rotation of her instestines (which she didn't end up actually
> having) so
> we had the g-tube and fundo done.  We are letting Emma heal from the
> surgeries and hopefully decide that she wants to come off the vent.  They
> are trying to wean her, but she seems to have trouble getting rid of her
> CO2.  They are starting her on steroids today and giving her albuterol
> treatments, essentially treating her as an asthmatic.  Her heart
> defect does
> not appear to be a problem at this time, or at least that's what
> they keep
> telling us.  Her growth has been good.  She weighs a little over
> 9 pounds.
> Emma looks like a chubby, healthy baby--it's so hard to believe
> she has so
> many problems on the inside.
>
> We have been struggling with the hospital--we don't like it there
> but don't
> have many options.  It seems like every time we turn around someone is
> trying to talk to us about pallative care for Emma. One doctor refers to
> kids like Emma as "these characters."  T18 is always in the forefront of
> their minds--I think they wrote her off the minute they found out
> about her
> diagnosis.
>
> My husband and I aren't ready to give up on Emma--she is a
> fighter and has
> surprised us many times.  I guess I just need some reassurance
> from people
> who have been there, done that--stood their ground with hospitals and
> doctors--that we are doing the right thing.  We don't want our
> daughter to
> suffer needlessly, but we also think she could surprise them all
> (though I'm
> not sure they really care).  Some days, mostly when I'm
> exhasuted, I think
> we are just prolonging the inevitable, but other days, I feel in
> my gut and
> my heart that she is strong enough to come off the vent and go
> home and be
> happy.  But then I worry about what is going to happen next to
> put her back
> in the hospital.
>
> Thanks for reading my ramblings.  I have gotten a lot of information and
> support from your postings.  You and your kids are wonderful.
>
> Happy Holidays!
>
> Julie, wife to Scott and mom to Emma Grace, born 8/5/04
> Topeka, KS
>
>
>                   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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