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!
I can so understand your frustration in trying to get your baby just to EAT!! We went through the same thing and this past March we finally got a G-Tube for our son. What I can tell you from our experience is that I WISH we'd done it sooner!!! You are totally right, it did take away the stress of eating, and made it so that eating could be fun without stressing over quantity. As far as the care of the G-tube for us it has been really easy! The first 6 weeks after having it placed can be a little rough while everything is healing and tender, but now 4 months later it really doesn't need too much outside of the bath. Fair warning every kid will pull on their tube at one point and ouch does that hurt, but usually they do it once and leave it alone after that. My son will frequently play with the extension set during a feeding, but knows not to pull on it! Feel free to read our experience on my blog http//.grahamstowne.blogspot.com just search for g tube. And feel free to ask any us any questions! For us, Graham getting his g-tube was the best thing, he's gained nearly a pound a month since it was placed, and he has alot more energy and has made a HUGE amount of progress with his therapies. Good luck with whatever road you end up going down!
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