Josephine Zulema Castillo is our beautiful, silly, sassy, 15 month old with Full Trisomy 18. She was born on December 24, 2014, at 41+3 weeks, and tiny, at 4 lb. 1 oz., but she came out screaming! She latched right away, and did great on room air, but because of her very large VSD, her health began declining on her third day in the NICU.
Doctors advised us to take her home on hospice, and with a prescription for morphine so that she’d be comfortable as she passed. We decided against comfort only care and advocated for her to receive full medical intervention, with the help of other parents that we met through social media. She spent a lot of time in the hospital last year, and has had several surgeries to help manage her eating and breathing and with heart, but she has surprised doctors with how well she does every time.
On April 8, 2016 she will have surgery to remove a PA band and close her VSD and ASDs. If all goes well, she will have a perfectly functioning heart. As she grows, her breathing will improve, and eventually she won’t need her trach anymore. She eats mainly by G-tube, but is learning to eat by mouth. She started nursing when she was 10 months old.
She is an incredibly happy, social baby, and adores her siblings. She smiles, laughs, loves to babble, snuggle, and play with her toys. She is pure light and love, and she inspires us to cherish one another and to make the most of every day.