Well, she came out a fighter and hasn't let up yet! We spent a total of 42 days in the NICU with her. She had her first Omphalocele surgery at 7 days old and has been kickin' butt ever since. She had her final muscle closure when she was 5 years old.
By the grace of God, her VSD managed to close on its own, unfortunately the ASD did not. The hole in her heart is about 11 mm across and it allows large amounts of blood shunt back and forth. At times you can see it happen as her lips will turn purple when she has too much "bad blood" floating through her. We believe it is also the cause of her being lightheaded and at times, causing her to pass out completely. (not such a good thing when you're on top of the monkey bars at school.) She is also experiencing gross enlargement on the right sideside of her heart.
She is now 9 years old and the time has come to make my little princess whole. She has been such a trooper through all of this...the surgeries and test after test after test. Never once complaining about them or blood draws, etc. She just rolls with the punches.
My daughter is the single strongest person I know. She fought like hell to make it into this world, and she's been fighting like hell to stay in it ever since. She is truly my hero and I couldn't be more proud of her. There is NOTHING I won't do to help her and give her the life she deserves. One without doctors, needles, tests and surgeries.
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