Eli was born a healthy 8 pounds 9 ounces. He had trouble gaining weight from the very beginning. His main problem was he would randomly projectile vomit. The vomiting went from once a week to after every feed. His pediatrician ordered an ultrasound and an upper GI. Both tests came back normal. They said it looked like he just had reflux and he would grow out of it. At 6 months he was still vomiting pretty frequently, but there was a new symptom. When we introduced solid food he could not swallow it. This is called dysphagia. It just means difficulty swallowing. His pediatrician sent him for food therapy. After a few months he still wasn't progressing. Finally we switched pediatricians and got a referral to a GI specialist. The GI doctor is the one who discovered he has NF1. If it wasn't for her I'm not sure where Eli would be right now. She listened and didn't think I was some crazy mom who had Munchhausen After a few months under her care we had to finally make the decision to put him on a feeding tube. On October 18, 2011 he had his first NG tube placed at Children's medical center in Dallas. We spent 3 days in the hospital so I could learn to care for him with the feeding tube. I had to learn to place the NG tube, which was terrifying. Shoving a tube down your kids nose is something that just isn't natural, but I did it for him.
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| Eli after getting his first NG tube 10/18/2011 |
Eli had the NG tube for 6 months. It was a long 6 months. The NG tube did its job, but it was a pain in the butt. We had to change it once a week. It leaked all the time. It has this little Y port where you connect the feeding pump adapter. It would come apart all the time and soak everything. We were so happy when he was finally approved to get the G tube. On April 18th, 2012 Eli had surgery to have his trach and G tube placed. I was under the impression he would go straight to what is called a G button, but instead he came out with something called a bard feeding tube. They wanted it to stay in for 6 weeks to form a good stoma.
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| This is the bard feeding tube the day he had it switched to a g button |
The bard feeding tube was worse than the NG tube. This thing would get caught on everything, which really hurt Eli. We had a hard time keeping it from being irritated and infected. We were over the moon when he had his G button placed on June 5th, 2012.
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| Right after his G button was placed |
The button has been amazing compared to the NG and bard. It doesn't get pulled and it doesn't leak. He has really improved since getting the button. It's easy to clean and easy to feed him with it. Eli was about 15 pounds at 14 months when he got his NG tube. Now he is 2 1/2 and 23 pounds. He's still small, but he has put on a lot of weight and doesn't look so sickly any more.
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| Eli eating |
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The things we need to feed Eli. His formula, feeding tube extension, 60ml syringe and 10 ml syringe
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| We add style to Eli's button with the help of Patchwork Peddler G tube pads |
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| I love this Logo from feedingtubeawareness.com |
