 Paula Endres-Roepcke
I am a newlywed mother of four
healthy children and one born
with LCDH. At 20 weeks of pregnancy my
son, Jacqsuen was diagnosed. I was told
his intestines and liver were in his chest and his heart had been
pushed to the
right side of chest. At 20 weeks my son
was given 50% chance to survive. At 35
weeks I was informed his stomach was in his chest and his survival rate
was
decreased to less than 10%. Jacqsuen was
born on February 15, 2008 and was placed on ECMO at 2 days old.
He spent 28 days on ECMO and then had repair
surgery and Gore –Tex patch placement. At 6 weeks he had g tube
placement surgery and stayed in
the NICU until
3 months old. He came home with oxygen,
monitors and a mic key button.
He has been diagnosed with
severe acid reflux, constipation,
chronic asthma, chronic bronchitis, pulmonary hypertension and
bronchial
dysplasia. The past four years he has
had illnesses requiring hospital stays but no other
surgeries.
He had his Mic-Key button removed at 4
years
old and is still learning to eat and takes most of his nutrients by
bottle. Although Jacqsuen spends most of
his time indoors he doesn’t complain. The biggest challenge
right now is keeping weight on him.
I am an unemployed paralegal
but I have an online
bakery. My bakery is called A Different
Kind of Bakery because I make sugar free and lactose free
goodies.
I have two children lactose intolerant and
Jacqsuen is not allowed a diet high in sugar or cholesterol.
I am new to CHERUBS but I
look forward to being the state rep
for Iowa and getting to know the families in my state. I hope to
be able to help and support them as
much as I have from everyone at CHERUBS.
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