Unfortunately, she has lost about 4 lbs since her last clinic appointment, which is a big no-no. So, she's back on extra tube feeds for a while...probably a few months until she recovers from this next surgery.
We knew she would be off and on with tube feeds, but I would lie if I didn't say it is disheartening to hear she isn't getting enough when we work SO hard to get her to eat! And she is working so hard too!! She's made great progress with drinking her milk from a straw (yay independence!!!) and increasing her volume of food. So it's frustrating for everyone when we have to add a tube feed.
Then again, I'm thankful it's as easy as a tube feed!! This is exactly why we put the tube back in. Instead of constantly freaking out over weight, I can just pour 6 oz in and move on. She can still eat and we can all still marvel at the new-found enjoyment she has of eating!
In other, related news, her next VEPTR surgery is August 4th. She's being admitted on the 2nd to get a picc line put in. She asked me the other day when these surgeries would be over. It broke my heart to tell her she will most likely have them for 9-10 more years. She is such a tough, brave, joyful little girl.