Fiona: The Back Story

Fiona was born on April 28 2009 and like we've come to understand things must be done her way so she was born via emergency csection despite an easy labor. She was perfect in every way.

The next day after doctors heard a heart murmur they ordered an echo and discovered that Fiona had several congenital heart defects (CHDs). The most urgent was a critical coarctation of the aorta with a hypoplastic aortic arch. At 1 day old she was already in heart failure and was given a drug called prostaglandin to keep open part of her fetal circulation called a ductus arteriosis until surgery could be done the next morning.

She spent 2 weeks in the PICU recovering from her heart surgery and faced her share of set backs. The most serious was pulmonary hypertension, but she also had a collapsed lung and an infection in her chest tube site.

Since we came home she has faced many hurdles. She has had frequent illnesses, growth problems, allergies, severe constipation and recently aurinary issues as well. We just started GI behavioral therapy and are hoping that this will help us reach our goal of being potty trained for preschool. 

Our little girl is an absolute inspiration and we are so lucky to have her in our lives.

Fi's specific conditions:
CoA w/arch hypoplasia, PDA, PFO, BAV w/AI, AS, cardiomyopathy,  former PAH, MSPI (now just MPI), micro del on chromosome 1,  a delayed swallow reflex (at risk of aspiration), suspected Rumination Syndrome, currently on a high cal/protein/fat diet for growth problem, anterior anus, severe chronic constipation, constant yeast infections,  urinary issues (enlarged bladder and incomplete emptying, currently using UTI prevention methods), karatosis pilaris, dermatographism, allergies/asthma

Current Medications: Miralax, Senna, Singulair, Nasonex, Nystatin

Fiona's team:
Dr Evers (pediatrician)
Dr Yang (cardiologist)
Dr Yeh (cardiothoracic surgeon)
Dr Fortgang (Tulane GI)
Dr Charles (Children's GI)
Dr TC (geneticist)
Ms Laura (Nutritionist)
Dr Clendaniel (GI behavioral therapist)
Dr Roth (urologist)
did I miss someone? probably