I am the grandma (Nona) of an amazing little heart warrior named Lucas. He was born Christmas day 2014 & was released undiagnosed shortly after his birth. At my daughter-in-law's insistence he was readmitted and a pulse ox reading raised the red flag that got him transferred to AI DuPont Children's Hospital where we were told on New Year's Eve 2014 that it was his heart.
Lucas has Tricuspid Atresia, Transpostion of the Great Arteries, Hypoplastic Right Heart Syndrome, Interrupted Aortic Arch, SVT, VSD & Wolff Parkinson-White Syndrome. Non-cardiac he has GERD & late dumping syndrome. He has had the Norwood & Upper Glenn and should be having the Fontan sometime next year. He also has had the Nissen Fundoplication & is still on a feeding tube (bolus feeds currently). He is doing well & is the happiest little warrior!!
Looking back & learning what I have in the past 2-1/2 years, all the signs were there and were missed. I never dreamed I'd advocate for something I only learned about since his diagnosis but can't imagine doing anything else.
There wasn't one resource that covered his 7 CHDs let alone all of them, I've changed that through my Heart Smart series on my Facebook community page & on my Pinterest page which is solely dedicated to the series.
I also customized a crochet pattern my Nana taught me years ago for a baby blanket for Lucas (my profile pic is his little foot poking through the oversized stitching of the first one I made). I have since made/donated over 200 baby blankets to the CICU departments of CHOP, Johns Hopkins Children's Center & AI DuPont Children's Hospital for the little heart warriors spending the Christmas holidays there. I've also donated them to local area hospitals & pregnancy centers to help educate/advocate CHD awareness. I've run several campaigns on Pulse Ox Screening with blankets as prizes that have been very successful (170+ entries this past year via Facebook). I also donate boo-boo bunnies to Johns Hopkins Child Life Department for the older heart warriors that are treated there.
I am honored to have accepted the position of CHD Awareness Coordinator for Mended Little Hearts of the Delaware Valley. I hope I do my little heart warrior proud.