Charlie Brown was a great little kid. He met his milestones, was advanced on his speech, smiled easily, slept through the night on his own at 6 weeks old, and just was a baby that made you want to be a Duggar and have 20.
=) Yes, he was injured and ended up with Autism at 2, but this isn't about that.
At about 6 years old we started to notice he wasn't eating as much. It didn't start out obvious. Instead of eating his entire half sandwich, he would leave the crusts. He would eat his carrots, tomatoes, and chips, however. Eh, kids don't like crusts, no biggie.
Then it was not eating the crusts and leaving half his carrots. He never left veggies behind. He LOVES veggies.
Then, it was eating 1/4 of a sandwich, no carrots, and only 2 small tomatoes.
You see the picture. Eventually it was walking off from complete meals, just sipping his drink a bit and eating nothing.
Eventually our son went from being in the 90th %ile to the 20th on the growth charts. His pediatrician at the time said that was totally normal. Kids move up and down on the charts. I thought it was bogus, but had no information to back that up. However, thankfully, he had a leg issue at that time and we had to see an orthopedic doctor. He was awesome. He's still our go-to guy. We were chatting about his leg, what it could be, etc and I said, "could that be why he's not gaining weight". He stopped, turned and looked at me, and said what do you mean. I told him about his growth issues. He looked me in the eye and said, "yes, a child does change on the growth chart, no more than 10% in either direction. If it's more than that, you need to have it looked at because that's not normal. This is an issue."
That was all I needed to hear. I knew my Mommy gut and my husband's Daddy gut wasn't wrong. We went to a GI and talked to them. They agreed, it wasn't OK. That started a battery of tests. We did med trials, natural remedy trials, adding tons of various foods and types of items to his diet, the list goes on. We tried for 4 years to get this child to eat enough to sustain himself. All we ended up with was missing my cousin's wedding and a child that fell off the curve.
Finally that fateful day came when we knew the GI would tell us it was time for a feeding tube. We walked in and she said it was time for a feeding tube. It make take us years to figure out why he doesn't feel hunger in a normal way, we might not ever know. But, either way, we had to make sure he was fed.
I was terrified. I knew it was what he needed, but I begged my husband to cancel the surgery the night before. I cried so much. I never wanted this for our son. He finally looked me in the eyes and said, "I feel like we have tried everything. The doctor feels like we have tried everything. BUT, if you can think of one single thing we haven't tried, I will call them myself and cancel the surgery and give whatever it is a try, no matter how crazy, off the wall, or rare what you find is". I had nothing. I knew in my deepest parts the doctor was right.
Our GI told us when she lifted his gown to begin the procedure (she did it with a surgeon in a method they used on all feeding tubes that I feel was a wonderful option), she was shocked how thin he was. She had never lifted his shirt, ever, past the belly button area to feel his stomach. She said we saved his life that day.
So, we had surgery the next day. He did really well. He had his first tube feed the next morning with Pedialyte. That went well and we started on formula.
Our GI told us when she lifted his gown to begin the procedure (she did it with a surgeon in a method they used on all feeding tubes that I feel was a wonderful option), she was shocked how thin he was. She had never lifted his shirt, ever, past the belly button area to feel his stomach. She said we saved his life that day.
In the first month he gained 10lbs. I knew we had made the right choice.
We had a long road ahead of us, and we do not tube feed the way we used to. But I will share all of that later this week.
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