Catherine had her follow-up visit with her family doctor to check her weight last week. According to my scale (I weigh her weekly), she gained about 7 ounces since we've been home and has stayed at the same weight, 23 lb. 13 oz. for the past 3 weeks. We saw him right after we got back from Seattle and since that time, according to his scale she lost 7 oz.! So he frowned a little when he saw that, and then I told him what her weight has been doing according to my scale. Then he asked what she has been eating and he said that was terrific. He said kids at this age don't have the rapid gains in weight that we see younger kids have and really, we're just talking about ounces here so there is no need to be alarmed if the scale showed she lost a few. Then he asked how much we were tubing her and I told him 190mL at night. He said, "That's like a bag of cookies! She can do this on her own!" And I agreed, so he recommended we stop the calories via tube (she still gets water...no drinking yet) and to watch her weight and come back in a month.
I was just shocked that he saw a loss of weight and still recommended dropping the tube feed in light of how she looked and how well she is eating. Not all docs are just concerned about numbers and I think that is a rare thing.
So, here we are 3 days with no tube feeds and she is doing great. She has energy and looks good. I haven't seen a huge increase in intake, but that's ok. I am also giving her the prevacid and her multivitamin by mouth. The only thing she gets through the tube is water and miralax! Weight is still the same this morning, 23 lbs. 13 oz.
Thanks for your prayers! We continue to pray for all of you.