I'm totally exhausted right now, but we have heard from so many supportive friends and family in the past week since I wrote about our trials with NG feeding, I wanted to post a quick update, and to say that things have settled down a lot and that we're all doing OK!
On Monday, I e-mailed the GI doctor we'd seen last week to say that we wanted to go ahead with the G tube. She wrote me back and said that she would help us with that, and that the first stage in the process was to set up an imaging study to see if Magnus could have a G tube inserted endoscopically (this would depend on the location of his stomach within his ribcage and whether any of his surgical scars would interfere with endoscopic placement of the tube). That still hasn't been scheduled, but we're hoping this will happen early next week, and are hopeful that the surgery can happen in the next couple of weeks.
We still haven't met with the GI doctors about the G tube, but based on very helpful comments other parents left on this blog, I think that Magnus can be successful with the G tube without doing a fundoscopy.
Like I said earlier, things have been pretty normal this week. The Prevacid seems to be working better on Magnus's reflux than the Zantac was, and he has been eating relatively well. Unfortunately, it's not quite enough to get him where he needs to go. It's definitely been hard to give up on the idea of a child who can meet all his caloric needs "naturally," without the use of a tube. But what really drove home the need for a tube for me was when I sat down with a growth chart and discovered that even if Magnus gains an ounce every single day, which is a lot, nearly double the rate of weight gain that a normal baby would have at this age, it will take him four months to even get on the growth chart, which would put him in the 5th percentile for weight. The realization that even this modest goal was going to be wildly ambitious for us without being able to give supplemental feedings really made it kind of obvious that this is what we need to do, even though it will require another surgery and hospital stay, and will be some extra work to maintain.
Anyway, things are OK, we're OK, and we want to just get this over with quickly, and start fattening our boy up soon.
5 months ago