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Kayleigh’s Story

Kayleigh was born on August 2, 2007. She was born with Hypoplastic left heart syndrome and Turners syndrome...



Kayleigh was born on August 2nd and was 3 weeks early. She was born at Saint Claires Hospital in Wausau. On kayleighs 2nd day of life we found out Kayleigh was sick and was immediatly taken to Marshfield, then to Milwaukee Childrens Hospital. There they said that Kayleigh has Congenital heart disease and it was Hypoplastic Left Heart Syndrome. We were told that her condition was very critical and she would have to go threw 3 major open heart surgeries and there was a chance that Kayleigh would not make it threw the 1st or even to the 2nd. Before her surgery we were thrown another obstacle they told us that Kayleigh had Turners syndrome, and because of this her chances of surviving have gone down.

I will update more as I can.

Love,

Missy

Latest Journal Update

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We were able to come home New years eve... the team of drs were alittle uncertain should we go should we stay .. kayleigh developed another cold while in the ICU... they called Dr. Gordon and he said the greatest thing.... trust mommys instinct and never doubt it...... Her labs were going down things were on the right direction, kayleigh was looking better... She said she wanted to go home, then it's time.. Mommy took her home.... 

 

The attending on last week was trying to figure out why Kayleigh's doing what she is doing...  is it her heart progressing , high pressures in her Glenn does she have a clot.... We had echos, ultra sounds which were ok.. Her echo should her right ventricle is enlarged and she does have stenosis of the aorta .. but it hasn't changed in months and her function is normal low... I told the team sometimes the unknown and the explaination isn't in books and in medicine... Sometimes it's in god's hands... You have to trust and believe it's going to be ok..Sometimes Drs who haven't seen us in a really long time have alittle difficulty remembering that... but that is ok... we love them all still...

 

Today we checked labs and Kayleigh is maintaing and better.. since leaving the hospital her infection levels are normal, heartfailure is down electroyletes are all normal... Despite this cold and just being tired on and off she is fighting and doing well..Im so proud of Kayleigh..

 

New years family came over to celebrate and to welcome Kayleigh home.... saying goodbye to 2012 i thanked God for the memories .. in 2012 God taught me life can be taken away in moments.... Kayleigh's fight with death in april there just are no words , talking to a furneral home, preparing for your childs homecoming , pallative care is numbness.....It's one day at a time, one moment at a time and never stop and believing in God..........

 

2013 we welcomed with open arms and there is some fear about the future... the unknown and how much time do we have... As these feelings come i make myself remember what this journey is about .. It's about the memories, moments , quality and love... Life isn't about the amount of breaths you take, it's about the moments that take your breath away.. Tomorrow isn't promised by God..

Kayleigh's wish is coming Feb 13 th in Chicago ... She will be meeting Lady Gaga... She is soo excited... She will be close to her milwaukee childrens hospital , and too her team.... 

 

Praying for a uneventful weekend... Thank you for all your thought's and prayers

 

F.R.O.G.

 

Heart hugs and kisses

 

Missy and princess Kayleigh

 

 

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Comments

1 Comment

sherry smith
By sherry smith
I haven't been on caring bridge for quite some tome. How is Kayleigh doing