So, what's with the tube?

If you've seen the new pictures but haven't been clued in to the details, you're probably wondering what the deal is with the tube in Gwen's nose.

It's a feeding tube because Gwen is unable to generate enough suction to eat enough formula from a bottle, which also meant that breastfeeding was out of the question too. So, when it's feeding time, we do feed her with a special bottle, but she's only able to take 1/2 ounce or so orally, so the other 3 are gravity-fed through that tube.

In case you want the tube/feeding details - currently daytime feedings are every 3 hours, and the two nighttime feedings are 6 and 4 hours apart, more or less. Initially, we had to change the tube every few days - sometimes a medical-type did it, sometimes daddy did it. For a while, we had a special one-month tube, but Gwen managed to yank it out, and we couldn't get a replacement for it. No big deal, since this Thursday is the big tube event.

On July 10th, Gwen is having a gastric feeding tube installed. This is a surgical procedure requiring full anesthesia, so she'll have to stay overnight for observation and recovery. While she's out, she'll also have an MRI done to see if there's a neurological cause. She'll also have a small piece of muscle removed so a biopsy can be performed.

Now you're probably asking, "so, what's the problem"? Well, we don't know. Gwen has hypotonia, which simply means she has low muscle tone. So far they've eliminated some of the most common and most nasty potential causes, so testing continues. We may end up with a diagnosis, which will result in targeted treatment, but it is also quite possible that there will never be a diagnosis. Low muscle tone may just simply be a temporary condition that will go away, and that'll be that. In addition to the MRI and biopsy, there are some blood tests pending, and she'll also get an EMG test sometime to check the responses of her nerves.

So, really nothing to be overly worried or concerned about. After all, Gwen's growing, packing on weight and getting stronger every day. For now, that's aided by a feeding tube. Based on some of those smiling pictures we posted yesterday, Gwen's no worse for wear.