The following family story was written and shared by Whitney Baugh:
“Justin and I were high school sweethearts who married young after dating for several years. I gave birth to our first child, Bryson, in 2008. In 2011, we welcomed a daughter, Bella. In 2013, Brynlee made her appearance and took us by complete surprise when our "healthy baby girl" wasn't healthy at all. She was diagnosed with Pierre Robin Sequence which involves a cleft palate, small recessed lower jaw, and an airway obstruction due to her posterior tongue positioning. All of this worked together to create a storm of breathing a feeding issues which resulted in her undergoing a tracheotomy and g-tube placement at 9 days old.
We found ourselves with a 5 year old, 3 year old, and a newborn trach/ tubie baby! We brought her home at 20 days old and worked to find our new normal. Our family became closer than ever and that first year was the hardest year of my life. On top of the trach and feeding tube, Brynlee also developed severe reflux which resulted in malnourishment and failure to thrive. Once we got her on the right track, my dad was diagnosed with lung cancer and passed away 4.5 months later at age 52. The journey was hard- it was filled with exhaustion (we never had nursing), tears, and many prayers, but the journey was well worth it. You really do eventually find normal, fall into routines, and care for the trach like it's nothing different. We took her out to church, out to eat, shopping, etc. and made life as typical as possible for both Brynlee and our older children.
Brynlee removed her trach in January of this year and we didn't notice until her stoma had partly closed. She was capped during the day in preparation of a sleep study- turns out, she decided to skip that altogether! After a night of monitoring in the hospital, she was released trach free. She is a healthy, thriving 1 year old and we know that she has big things in her future!”
Link to the full post “Dear New Trach Mommy”