“She is the sweetest, sassiest little girl, and she’s so beautiful.”
Josephine Castillo, Trisomy 18, 12/24/2014, Seattle, WA
We found out about Josie’s T18 at 22 weeks by amniocentisis. Her markers were choriod plexus cysts, missing csp, large vsd, and small size. We were devastated, of course, and doctors didn’t want us to get any false hope about her surviving. At 7 months pregnant I was in a car accident and started having contractions. I thought I’d lose her then, but they were stopped with meds and she held tight! She was very wild and kicked a lot most of the pregnancy. She arrived on Christmas Eve, 10 days late, tiny, at 4lb 1oz, but screaming. I got to hold her for about 30 minutes before she went to NICU. She was in NICU and went home two weeks later on hospice and with a “whiff” of oxygen to keep her sats up, and an NG tube.
Two weeks after being home she went into respiratory distress when the pressures in her lungs dropped and her VSD caused her to overcirculate. She went to Seattle Children’s for 4 days where they put her on a small dose of lasix. She was home for about 6 weeks after that, when she got rhino virus and ended up back at Seattle Children’s. From then on, it was one illness after another. She has been five months in the hospital and she’s had surgeries for pyloric stenosis, Gtube, Tracheotomy, and Pulmonary Artery Band. She’s also battled two rhinovirus, four tracheitis, three UTIs, and a kidney infection. We never imagined her having to go through so much. Our plan all along was to let her show us how far she would go. She fought through every illness and never gave up. She had good days and bad days, but she never stopped being interested in life, or interacting with her family and her nurses, and she surprised doctors by beating every illness.
Ultimately, she ended up on the trach and vent because her heart condition made her heart so large that her lungs became crowded and couldn’t function properly. She worked so hard to breathe, and wasn’t growing well, and that made her very susceptible to illnesses. We were intimidated by it at first, but with the trach she is now growing like crazy, and she’s much happier and more comfortable. Her development is really taking off now. We love the trach! She’s on the vent 24/7 right now too, but the vent is portable and we can take her pretty much anywhere with it. We will be discharged from the hospital once we are fully trained on the trach and vent, and after that doctors will talk about weaning her off the vent.
Josie has had a very tough start at life, but she is so resilient. She is such a fighter, and she inspires her family and all who know her. She is the sweetest, sassiest little girl, and she’s so beautiful. She looks like a little doll, and everyone who meets her instantly falls in love with her. We are excited to go home with her so that we can take her on walks around our neighborhood, and spend time with her as a family. We look forward to helping her with her development by working on oral feeding, neck and core strength. At some point in the future, could be months, or even years, her PA band will become too tight and she will need her VSD repaired. She will also hopefully grow out of needing a vent and then trach. These are our hopes for her, but of course Josie will write her own story. One thing this journey has taught us is to live more in the moment, appreciate each day, and trust more in God.