|Our beautiful daughter Kay-Lyn was born February 19, 2013. We didn’t have a prenatal diagnosis of Down Syndrome, so when the Doctor apologetically broke the news to us we struggled to see what all the fuss was about. I’ll save the story of an awful hospital staff and 2 day standoff in ICU for another day. Along with a diagnosis we found out she had a heart defect, Ventricular Septal Defect, Atrioventricular Septal Defect and Cleft Mitral Valve.
Soon enough we were home and it should have been a time to relax and bond, but there were just SO MANY APPOINTMENTS! Prenatal checkups, lab work, cardiology visits and tears, lots and lots of tears. We knew she was going to need heart surgery in some form, we just didn’t know how soon. When she was 4 months old we found that out. She needed open heart surgery as soon as possible. We decided we weren’t comfortable with the hospital choices where we were currently living and made the decision to move back to Colorado. Being at a higher elevation we knew she would need oxygen and we tried to prepare ourselves for life with tubes. We thought that after her heart surgery she would get healthier and stronger and would eventually come off of oxygen. We moved in June, her heart surgery was in July and in September I attempted to go back to work. We found out the hard way Kay-Lyn is not compatible with day care and we couldn’t afford to have a nanny. She was sick for 6 solid months! Three battles with pneumonia, 10 courses of antibiotics and another surgery resulted. This time it was removing her tonsils and adenoids in hopes her oxygen levels would be better when she slept. She had sleep apnea and her oxygen levels would fall really low when she was in a deep sleep, which rarely happened because she would stop breathing. Things were looking up after the second surgery but we still couldn’t kick the bottle. With each cold or cough she got we were back on it, sometimes for months.
As she got stronger and bigger she was moving around a lot more in her sleep. She was all over the place and even though we had a very nice monitor on her, there were times I actually fell asleep. Some mornings I would wake up and find her oxygen completely off, other mornings she would be completely tangled and almost strangling herself. My idea was born. Why aren’t there pajamas for kids who wear oxygen? I started my journey of prototyping, filing for a patent, sourcing the best quality and prices for materials, and making something we desperately needed. It wasn’t always pretty or functional, but we’ve got a pretty solid product now and I feel it’s the perfect time to share it.
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