[tri-med] Re: Need reassurance

Hi Julie!  I have been silent recently but I live in Overland Park, Kansas 
and my Michelle Rose was born 1 1/2 years ago with full T18 and a large VSD. 
She was in NICU for 3 weeks at Overland Park Regional Hospital and then we 
brought her home.  She was NG tube fed and grew to 10 pounds.   We struggled 
over whether to do heart surgery and we were just starting to proceed when 
Michelle got sick with an infection and ended in KU Med Center.  Her 
cardiologist was a wonderful doctor from KU that explained everything to us 
as many times as we needed him to.  Unfortunately, her lungs already had 
hardened and her heart gave out when she was 6 months and 26 days.

We worked with Carousel (a pediatric hospice) in the area that was 
wonderful.  They work with any child that has only a 50% of death with their 
illness so they are set up to help the child survive.  I really believed 
that Michelle would live and be part of the 10% that survive a year.  I look 
back and am so glad we had those months with Michelle.  She got to know her 
brothers and sisters (she would smile so big when she heard them) and we 
took her everywhere.  No one knows what the future will hold for ANY of our 
children so all we can do is love them and make the best decision we can at 
that particular moment with the knowledge we have at that time.  Even if all 
the odds are against us, we still fight for our children because we love 
them (and God loves them).

I am so sorry that you have to fight for Emma and I know how hard these 
decisions are.  I spent so many nights crying to God to give me the answers 
on what to do.  But as long as everything is done in love, how can it be 
wrong?

What hospital is she in?  Children's Mercy?  If you need the name of 
Michelle's cardiologist, let me know.  Emma and you and your family will be 
in my prayers and thoughts.

Ann mom to Sarah (12), Beth (10), Mark (7), Brian (5)
& beloved Michelle T18 (4/1/03-10/26/03) wife to Joel
Overland Park, Kansas   USA

"I know God will not give me anything I can't handle. I just wish that He
didn't trust me so much."
Mother Teresa



I
----- Original Message ----- 
From: "Julie Johnson" <jules519@xxxxxxxxxxx>
To: <tri-med@xxxxxxxxxxxxx>
Sent: Monday, December 20, 2004 3:47 PM
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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