Sometimes I feel bad from disconnecting from others with kids Andi's age. Then I take her to Costco, and I see a kid half her age sitting up in the shopping cart. It's hard. It's a hard that no parent should have to know, but this is our daily reality. It reminds me that being sort of distant, is a way of protecting myself from the severity of our situation. Seeing she's 0.01% on the weight chart -- it's one thing to see that on paper, or write that, it's another thing to see a kid half Andi's age twice her size. It takes the reality of the situation and makes me face it. Self involved, self-indulgent to avoid reality.... maybe, but I see it as a way of keeping my wits about me and enabling me to stay positive.
Andi's been doing really well lately. She's up to a 100 ml boluses, four times a day, then up to 34ml at night, for 10 hours. That's a lot of 33 calorie formula. In addition to that, she's taking food by mouth two to three times a day. With each feeding, she seems to be getting better. Practice makes perfect! Last week, she weighed in at 14 lbs, 7.5 oz's. A good weight gain (4.5 oz's) for two weeks! She's growing, even developing a bit of a belly. We're working on it! Haven't yet resorted to Burgerville, but we might just have to do a Tillamook Cheeseburger & chocolate shake in the Cuisinart!
Today, Andi initiated a new member into the yanked-out g-tube Hall Of Fame! Yep. Member #4 is her Grandma! Grandma was watching her today, and the dang thing got yanked out. I was on top of a hill, it felt like a mountain to Maddux and I who ran down it, but I'd settle for calling it a very steep hill. We got home despite dang stop lights, slow drivers and idiots in our path -- and popped the dang thing back in. To me, now that I've done it several times, it's no big deal. However, poor Grandma got to experience the fear. The gut retching fear of what to do, who to call, how to handle, and honestly, panic. It's panic inducing to those that haven't dealt with it, or know the specifics of how much time we have, how to handle, etc. Grandma is probably in need of a trip to the day spa, after enduring the trials of our reality. However, she did great and Andi is very sweet on her Grandma. Hopefully, Grandma is able to recover quickly.
So, we continue to work this reality, with our blinders on for safety. Perhaps it is a bit lame to the outsider looking in, but to us, it's self-protecting from an already saturated soul of worry.