My daughter got her tube at eight days old and for 12 months straight was tested over and over with no positive results or answers to why she wouldn't gain weight. She was overfed to stretch her stomach and vomited almost daily. In turn, this caused a significant oral aversion. There was no medical reason to have a tube but there were no doctors locally that would support a wean in fear of weight loss.
We found the "Home-Based Feeding Tube Weaning" Facebook group when she was around six months old and found comfort knowing that there are others like her! I immediately met Olga who taught me everything I knew about tube-fed children! She supported every fact she gave me with a medical research study while also giving me the perspective of a former parent of a tube-fed child.
The biggest thing she taught me was that we were not only weaning my child from a tube but weaning ourselves from the traumatic dependence and anxiety that we had developed over the tube as well. She believes in not only helping the child but the entire family unit as well. A couple of months later, Olga introduced us to Becky who is a licensed Feeding/Speech Therapist. We gave her our story and she agreed to guide us through our wean. Having her to support us was the piece we needed for our local doctors to feel comfortable approving it.
Olga met with us almost daily over the messenger and a handful of times over Skype to discuss the progress my daughter was making and give us advice on what to do. She was also constantly checking in with our anxieties, how my other child was being affected, and just generally caring about how the family was handling things. I would often check in with Olga at the same time and it was so ironic how similar their advice was for us! They work together flawlessly and are almost always in agreement.
I could not say enough about how these two women saved my daughters' life, my marriage, and our entire quality of life for our family! They gave us confidence to advocate for our daughter and counseled our deepest fears. Our daughter has been tube-free for four months now and is gaining steadily while eating everything in sight!
Although we still have struggles like teething, Olga and Becky are still there checking in with us every couple of weeks! I could write a book at this point but I will stop now! We plan on visiting them one day so our daughter can meet them!