September 19

It's been a rough couple of days. The throwing up has continued, with 4 times yesterday and twice today. And his appetite has come down even more than before. Today he only drank 15 ounces. We spoke to the dietician about trying to feed him more solid foods, like baby food or even very soft veggies. We were thinking that maybe he just is tired of drinking all his meals, and is ready for more solid stuff. Before we went into the hospital 2 months ago, he was eating very thick puréed fruits and vegetables. We were having some choking problems with more chunky things, but he did well with the purees. However, he now doesn't seem interested in solid foods either. Even his very favorite food of apples doesn't interest him.

For those who wonder why I am so hung up on his eating, this is why;  he has already begun to lose weight. He has lost about 1/2 pound in the past week or so. That doesn't sound like much, but when he was only at 17 lb, it seems a little worse. Also, we know that once he starts the chemotherapy, he will stop eating completely. At that point he will be put on IV fluids to give him all the calories and nutrients he needs. But for right now, the doctors will not do that. They want him to take as much by mouth, for as long as possible. So it is left up to Adam and me to make sure he is getting as much as he needs. He has been put on fluids several times to rehydrate him, and he has bumped up from 20 calories/oz formula to 22 calories/oz formula, but nothing has been done for the lack of nutrients. I realize that most babies go through a little phase where they don't eat much because they are teething or growing through a growth spurt, but with Cael, it has been a constant battle for almost a month to get him to eat. He will take about 1-1.5 oz before he starts to push the bottle away. We then spend the next hour trying to get him to take about 6-7 ounces total. I don't mean to say the same things over and over when it comes to his eating, but that is one of the big problems he has that I feel I have just a little control over. And I may honestly be delusional to think I have any control over that. Today kind of proves that. He is only going to eat as much as he wants, not how much I tell him.

Aside from that, he got an echo yesterday evening, and then was out on a holter monitor for 24 hours to monitor his heart. That was all because of his high heart rate. We thought we were going to see a cardiologist yesterday, but didn't. Then we thought we would see one today, but again did not. I guess one might come tomorrow about the results of the EKG, echo and holter monitor. However, they put him on fluids last night, and his heart rate, again, is doing much better. He obviously isn't getting enough fluids since this is the second time that has worked to bring his heart rate down. Just another reason I'm so worried about his eating (drinking).

We had a day like this last week, where he didn't eat much, then the next day was back to normal, so I am hopeful that tomorrow he will eat much better than today.