Friday, September 16, 2011

Norah Update

Norah had her second successful surgery, this time to place a g-tube (gastrostomy tube). This replaced the NG (nasogastric) tube that entered her stomach through her nose. The g-tube enters the stomach directly from the outside of her belly. I know, it sounds like it is more invasive than the NG tube, and in some ways it is. However, Norah needs her feeding tube on a temporary but somewhat long term basis due to her soft cleft palate. NG tubes can easily dislodge (sometimes into the lungs) and can increase susceptibility to nasal infection. It's also likely to become awfully annoying as the child gets older. I mean really - who wants a tube going down their nose, through their throat, and into their belly?

The surgery was successful, and she's now the bearer of a button style g-tube. The button style is great because the design allows the actual external tube to come off when not in use, then the stoma to the stomach is capped off. There was a small complication during surgery though. As the tube went in, her stomach tore a little bit, so the surgeon had to place a couple stitches. She has to go an extra day without eating to give her stomach a chance to heal. Then they'll do a barium test, where they'll push formula with dye in it so they can check the performance of the tube and stomach (via xray) to make sure the stitches did their job.  Jeff and I are going to a class for at-home care for the g-tube. Yes, it includes being able to change out the tube in an emergency or if problems arise.

We're also going to tour South Davis Community Hospital, where Norah will go until she's big enough for the home ventilator. I met some of the care team there, and they seem great so far. They said we'll be able to decorate her room, dress her in her own clothes, and even bring items from home like her swing. They try to make it as much like home as possible, and we're looking forward to that. Of course we'd rather she be home with us, but we'll do whatever it takes to make sure that it's safe for her to do so. She's up to 3.2 kilos... so only has 1.8 to go!

In other news, Norah had her third hearing test, this one more comprehensive. This test gauged brain response to sound while she slept. She does have some hearing loss, and is going to need to be fitted for hearing aids in 2-3 weeks. The hearing loss is related to spondylometaphyseal dysplasia, though Jeff doesn't have it. Of course, Jeff didn't have most of the problems she's had already, so it goes to show that these skeletal dysplasias can be tricky. No matter what, we love our sweet girl, and we'll do anything to make sure that she gets all of the care she needs... no matter the financial or emotional challenges.

PS... pictures to come of Norah and her tube- and tape-free face!
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