Dave and I found out while I was pregnant that Kylie would have a cleft lip/palate and there was a possible heart defect. My OBGYN sent me to a high risk OBGYN a couple of counties over. That obgyn looked at Kylie’s ultrasounds and sent us to Shands Hospital in Gainesville Fl, which is 260 miles away. Once we were there, the OBGYN advised us we should get induced and deliver Kylie there. Thank goodness they did.
Once Kylie made her appearance in the world she was intubated multiple times and went to the NICU. She ended up intubated 12 times in the first 14 days of her life. Due to this she developed a grade 4 subglottic stenosis which required a tracheostomy. We found out while in the NICU her PDA did not close, she had profound hearing loss, colobomas in her eyes, and a laundry list of other diagnoses. Kylie spent 156 days in the NICU/PICU and came home with a trach and G-tube, also ventilator dependant.
Almost one year later we have all adjusted back at home and Kylie is making amazing progress! She is only on the ventilator at night, has hearing aids, has started taking bites of baby food, has almost caught up on milestones, and made it through the multitude of surgeries like a champ. We visit Shands once a month due to all of her doctors being at that hospital. We are now preparing to get her airway reconstructed. Kylie is such a light in our life and we are amazed at her everyday! She has taught us so much about ourselves and has made us grow as individuals, a family, and as a couple!
While a CHARGE syndrome diagnosis is scary and may seem like the end of the world, these kids are so resilient and so strong! They will make it through this. These kids will teach you so much about yourself and are truly a blessing!
