Welcome Friends!
Kayli W.
Illinois
Birth Date - April 21, 2009

Main Diagnosis - Trisomy 18

Quilt Deadline:6/1/2013
THEME: Hearts and Jesus/God squares  (color Purple)

Biography

Kayli was born with Full Trisomy 18.  We were told she is
"incompatible with life" and that we should terminate the pregnancy.  With the
uphill battle, came medical rejection, family alienation, slow codes, futility
law, and many fights to get Kayli what every baby deserves...treatments. 

When she was 4 months old, she underwent open heart surgery, to fix her
ASD/VSD/PDA/double right outlet.  8 hours later, in the PICU room, Kayli came
out of sedation and decided she didn't like that they closed her holes.  She
fought the pacemaker, and refused all medical help.  She passed away.  32
minutes later...she came back to life!  Everyone in the room undeniably
witnessed a miracle! She came back home to live with us after only 3 weeks in
the hospital. 

Her first year continued to have challenges with the medical professionals.  She
was denied antibiotics from a hospital when she knowingly had Endocarditis
(heart infection) and Sepsis (entire body, blood infection).  She outlived their
stubborness, and treated her after surviving 7 weeks of infection...without
antibiotics! 

At 7 months, she sustained life altering damages, when a home care nurse gave
her something she was anaphylactically allergic too.  Because of her Trisomy 18
diagnosis, she again, was denied life saving treatments.  It took us 3 weeks
while her throat was closed to find an ENT to even evaluate/look at her!  She
now has a permanent trach placed in her airway. 

At 8 months old, we decided to give Kayli a Gtube.  Our philosophy was that
before Kayli's death (and rebirth), she could not stand to have anything on her
face.  She went in for the Gtube surgery.  The surgeon perforated her bowel. 
The resident caught the mistake, and Kayli was then opened up to repair the
mistake.  Kayli continued to be toxically ill.  The surgeon refused to get our
much desired GI consult.  We found out why, 3 weeks later.  The surgeon
admittedly placed the Gtube in Kayli's colon instead of her stomach.  An
inconceivable, and uncommon mistake.  The surgeon told us she need not explain
to us why she did what she did, to our daughter. 

Kayli has had 3 other corrective GI surgeries to fix a fistula, close the colon,
remove a Meckel's Divirticulum, and close an abdominal sized hernia as a result
of the original surgeon's doings. 

Kayli is now thriving in life, relearning reflexes.  She knows of our love, can
tell apart each of her nurses (even gives them an initiation on their first day
of work), knows pain, and can communicate with us in her own way.  Kayli's
spirit is much stronger than her body, and we support her in life, every way
possible!

Kayli's smile and spunky demeanor makes us laugh.  Her heart and soul have
touched many lives, and she is an inspirational girl for many!
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