Parents whose children have struggled similarly to mine often face significant trauma triggers, and sometimes, our response to these triggers can unnecessarily stall the progress we make in weaning our children safely from feeding tubes. The minute we hear a cough or baby cry, the second there’s a gag, cough or hiccup – panic sets in. Because to a medically complex kiddo, every scenario feels like a medical emergency, even if it isn’t.
When starting a wean, there are so many questions. One of the recurring fears that I discuss with parents is: What if this doesn’t work, where do we go from here? When tackling this answer, it’s really important to back up a step and to start with another question: How do we define success and “working”?