I feed her, I promise!
Today was our visit with GI and nutrition. I LOVE our GI doctor and nutritionist. They are both amazing and caring. They spent 1 1/2 hours with us today going over history, daily routine, good day/bad day/normal day eating, best case, worst case, calorie increasing tips and our plan of attack in detail. During all this I was trying to occupy wrestling Burke, keep Carly happy and "shush" Cayson repeatedly which I'm sure made me look like the world's biggest basket case!! Note to self...next time DON'T bring unnecessary children!!!
Here's the gist- In October Carly weighed 12.3 kilos (27.1 lbs), March 12.5 kilos (27.3 lbs) and today 12.8 kilos (28.2 lbs). Her height to weight ratio puts her right on the border of moderate to severe malnutrition. In the next 2 months she will have a modified barium swallow study and esophagogastroduodenoscopy (upper endoscopy). Before any decisions are made we need to know for sure that her Chiari isn't causing her gagging, her gigantic tonsils aren't impeding her swallowing and that there are no "equipment" issues that could be part of the problem. She also lost half her blood volume, at least it looked like it, for a slew of blood tests checking her hormone levels, vitamin levels, CBC and whatever else he checked on that list! When we see Dr. Shub in 2 months all test results will be in and if substantial weight has been gained then we will begin preparing for the possibility of a g-tube.
We've been working hard since March to get this girl to gain weight and its very discouraging to see that she has only gained ONE pound since October. I struggle to get her to eat well on a consistent basis and now she has started gagging on many foods making it impossible for her to eat when she doesn't want to. Now I'm struggling to even get her to drink 3 of her pediasure drinks a day! Her daily caloric intake is supposed to be 1150 calories and on a given day we are lucky to get half of that down her. We are fighting an uphill battle!
On days when she refuses to eat much more than dry cereal I wish we already had the stupid feeding tube. It would make life easier and there would be no worries about her receiving nutrition. I'm open to a feeding tube, it's just scary to think about taking care of the actual tube. G-tubes take work but takes away my stress and guesswork. They have to be cleaned, vented, drained, changed, protected- you always have to have a spare near incase it get's pulled out, it is surgically placed, it can get infected and it can leak....BUT I always know that she is being properly nourished. We'll see I guess, I'm not going to push it either way. We have new drinks to try and suggestions for increasing calories and making her 3 or 4 bites really count!
