Magnus had a cardiology appointment yesterday morning. I guess that was the longest (6 weeks!) he's ever gone without seeing a cardiologist!
We had been worried about this appointment, mostly because of Magnus's weight. After his Glenn surgery, his eating and weight gain dramatically improved. But all of that seemed to come to a screeching halt at the beginning of May. All of a sudden, he didn't want to eat anymore, he was fussy all the time, and his weight gain leveled off. We attributed the fussiness to teething, although he still doesn't have any teeth.
And then, two and a half weeks ago, he came down with some sort of virus. His symptoms were oddly diverse: conjunctivitis, diarrhea, and a cough, but when I took him to see the doctor, she said it was probably all caused by the same virus. He never got really sick, but his eating got even worse, and he actually started losing weight. He finished off the month of May lighter than he'd been when it started, and since he's been growing, he just looks so terrifyingly skinny.
So, we were nervous about going to see the cardiologist. Nervous, because we knew she was going to want us to put his NG tube back in, but I was also nervous that his weight loss and fussiness could be attributed to a problem with his heart. Luckily, that latter possibility was not the case, and cardiac-wise he is doing just fine. That leaves us with the eating.
What would be so terrible about putting the feeding tube back in? Well first, even when he was a tiny baby, he was a champion at pulling his tube out. Now that he's stronger and has better fine motor control, I shudder to think how often we'd have to replace that tube. Second, the tube seems to be uncomfortable for him. He would often gag on it, and he would frequently just scream the whole time we were using it to feed him. This made feeding an extremely slow process, which leads me to problem number three, which is that the tube is inconvenient. It's a bunch of extra equipment to worry about and in his case is much more time consuming than feeding by mouth. And fourth, he'd have to go around with a tube on his face! This might sound trivial, but I guess one of my coping mechanisms in all this has been to strive to live our lives as normally as possible. A baby with a tube on his face is NOT NORMAL and is visible to the world as a SICK BABY.
But really, my biggest frustration with all this is that a tube won't really do anything to fix his feeding issues, it will merely circumvent them. As things are now, Magnus typically only eats one or two ounces at a time, and then he turns his head away or pushes away the bottle. If you try to get him to eat more than that, he screams. I don't know if it's from reflux or gas, or just him feeling full, but it feels wrong to me for the solution to be to force-feed him through a tube.
But I don't have an alternative solution. We just started adding probiotics to his food on Sunday evening in the hopes that it would improve his diarrhea (which has now been ongoing for 17 days) and maybe generally improve his bowel function and appetite. He then ate fantastically on Monday morning, but dropped off during the afternoon and evening and ended up having another meh day of eating.
These feeding issues are so frustrating...all last month, I've felt like I was fighting with him all day to get him to eat, and then because he eats such small meals, he usually wakes up every 2 hours during the night. And then lately, he won't even eat at night, but we feel like we have to get up with him to at least try.
Anyway, if Magnus doesn't turn things around right away, we have to go back to the cardiologist's next Thursday and he'll be back on the tube. I'm going to keep trying with the probiotics, but I'm not terribly optimistic. One positive thing, though, was that Magnus was actually in a really good mood all day yesterday, despite the fact that we had a very long doctor's appointment that included an echocardiogram, an EKG, and a blood draw. Between the "teething" and being sick, it had been a long time since he'd had such a cheerful day, so maybe those probiotics are doing something after all.
3 weeks ago