Wait, what? We’ve been at this for almost 2 months?!
Our biggest triumph is that while Brenna’s weight dipped way down, she never hit her maximum weight loss number…and verrrrry slowly, we began to see her scale numbers rise! We then got to the point last week where we got the exciting news that we could cut back her tube feeds even more! Now, she is getting a very small tube feed in the morning, a cup of water in her tube in the afternoon (just to ensure she doesn’t get dehydrated, because her skin makes it easy for dehydration), and a full tube feed at night after dinner.
It has been a huge learning curve – even though oral feeding is obviously the natural course of action, it was not Brenna’s normal, and so we’ve been having to figure out a new normal for her again. But every time I get to order her nuggets at McDonald’s or fill a bowl of crackers for her while on a play date, instead of packing up the feeding tube and syringe if we have to leave the house during feeding time, I revel in that new normal.
I am so proud of my new big eater!