We also had to increase his total calories by 60ml, which doesn't seem like much, but his tummy is very sensitive to increases in volume, so it's been a little challenging. X hasn't gained any weight in 2 months, so that is why we had to add the calories. Ugh. It's frustrating.
When he first had the feeding tube that went through his nose 2 years ago, he was eating 500 calories and getting 1200-1300 calories with the tube. Now he maybe eats 50-100 calories a day. I could cry when I think about that. I feel like we've gone backwards in oral eating. He does eat a larger variety of food now. He just takes one or two bites.
The exciting news with X is that when he had his ear infection and was on amoxicillin, he was still able to tolerate his feeds and didn't throw up. That is a miracle for him! In the past he would retch and retch and lose weight. Seeing him do so well was encouraging.
I feel like I am getting impatient with this feeding tube. I just want him to be able to get enough calories orally and be done with the tube. I am grateful that he is healthy and strong and thriving though. And that wouldn't be happening without the tube. I have a love/hate relationship with that thing.
N has a horrible cold. Like the ones you get in the middle of winter. He's needed his nebulizer (which he hasn't used in almost a year) and is miserable. Praying his ear doesn't get infected again and make the Holbein his eardrum larger. Last night was a long night. Today is filled with nebs and bolus feedings. X is very concerned about his big brother and is trying to make him feel better. It's sweet to see. Those boys do love each other (and they have moments where they can't stand each other----they are brothers).
N is napping and X and I are going to get a nap in as well. Enjoy this warm weather!
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