Piper is now 13 months old, but was born with Hypoplastic Left Heart Syndrome. As when we talked about some of the other little ones born with this ~ the left side of her heart is not functional (well when she was born it wasn't) and the ultimate fix for this is a heart transplant.
Piper received her second chance at life when she was 4 months old ~ she received her perfect heart.
During her short life so far, Piper has had multiple heart caths done, 2 open heart surgeries, her transplant and a feeding tube placed. She is on anti-rejection medication (so her body doesn't reject the heart), which is a life-long medication.
She has developmental delays and due to the prolonged intubation, she has feeding problems (hence the feeding tube) and a chronic lung disease. She will have heart caths in the future (an annual check) and have her g-tube closed (feeding tube) and a strabismus surgery (eye muscles) here very soon.
I wanted to quote this from her mother, because it is something I remember hearing from a dear friend of mine who's little girl has a congenital heart defect as well...just hits home.
Almost everyday prior to transplant was terrifying because she was doing so poorly, we didn't think she would make it to transplant. And every time we handed her over to the thoracic surgeon was terrifying, not knowing if we would get our baby back. The most exciting was first seeing her PINK after her transplant. Even with all the tubes, lines and wires, you could see her bright pink lips from the doorway to her room. Also, Christmas 2012 was her first Christmas home and it was wonderful to finally have a holiday with our whole family.
Piper also receives her care and treatments at Ann and Robert H. Lurie Children's Hospital in Chicago, Illinois.
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