Eden Lucie

December 19, 2009 edensmommy

This is the love of my life…my heart..my world.

Eden was born 3 weeks early in January of 2005. With in hours I knew something was very wrong. She was not eating right and she kept having this blue tinge to her face. Everyone told me I was just being paranoid and drugged out of my mind. Ok so all the above was proably true but I KNEW something was up. The next morning, the Dr’s came in and with in seconds of examing her, rushed her away from me saying something about immediate testing, something wrong with her heart. We ended up staying longer than past the normal 4 days for a C section baby. We were told by the head of cardiology to take her to Miami Childrens. We did and I was literally a wreck. Every dream I had about being a first time mommy, was just going down the drain and I could barely hang on. All I could think about was auto pilot of putting one foot in front of the other and getting through it. Miami Childrens said there was NOTHING wrong with her??!! But the head of Cardiology for all of Florida said there was..so what the heck?? This began a very long road of Dr’s contradicting each other and driving me to my breaking point. Being told 4 times in her 4 years of life that she was going to die. Watching her choke and cough and stop breathing in front of me. Years YEARS of mysterious fevers of over 102 or higher. Ear infections that have cost her most of her hearing that would not resolve on the heaviest of antibiotics and weeks in the hospital. And those very drugs doing such damage on her already frail immune system unleashing something so horrible it took 3 Children’s hospitals to even get a remote CLUE what the heck was going on. I have lived in this hellish bubble of being afraid to act and being afraid not to act. Worrying if the supposed “answers” or miracle Drugs were going to cause more harm than good. Wondering if this Dr really has a handle on what is going on or just telling me something because they’d rather say something than admitt they simply don’t know!!?? Eden has undergone Occupational therapy, speech therapy, behavioural therapy, more specialists than I can personally keep track of..literally lol.

Right now, she’ll be 5 in 3 weeks. She is on daily medications and breathing treatments, a food diet that I must alternate every day to 48 hours or risk severe reactions varying from hives to full blown asthma attacks. She contines to be monitored by Pediatric Cardiology, Vandy Speech and hearing for her hearing loss and delayed speech, behavioural therapists, speech therapists and Vandy Immunology.

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