Update 12: February 3, 2007

Our Life Off the Road

In a couple of weeks, we will have been in Florida for a full three months. That’s too long to stay in one place; especially one without mountains! Yes, the weather is nice and it’s been great to stay in an actual house for awhile, but we’re anxious to see more National Parks. We’ve decided that since Zane is stable and (at the moment) has no issues that require medical care, we’ll get back on the road during the third week of February. Having Zane along for the rest of the trip will be challenging, but since we have to get from Florida to our endpoint of Colorado (or possibly Oregon) somehow, we figure we might as well finish off our trip. After all, Zane was there for the first eight months of it; he might as well see the rest of the country if he can. If we determine that Zane isn’t doing well with traveling, we’ll simply end the trip and head west to settle down.

Zane came home from the NICU on January 8th. He came home with no monitors or supplemental oxygen, because he no longer needed them. He adapted well to being at home, and has done surprisingly well. He continues to take most of his feedings through a tube (currently at 50cc every three hours). However, at least four times a day he will take part of a bottle. During the times that we try to bottle-feed him, he’ll generally take around 20cc by bottle before wearing himself out; then we’ll tube the rest. He has taken more on occasion, and one time Susan even got him to take 35cc by bottle. At his last appointment on January 31st, he measured 18-1/4 inches long, and was up to 4 pounds, 12 ounces. He started showing some mild seizure activity the other day. That wasn’t unexpected, since most Trisomy 18 babies and many other developmentally delayed children experience them. After talking to his doctor and neurologist, we’ve decided not to start medications at this time. That’s probably the only thing that’s concerned us recently; otherwise he’s progressing well. He started cooing in the past week, he likes to suck on his fingers, and he has become very vocal in his dislike of things like getting a bath. Overall he seems happy, and he is proving that those awful mortality statistics don’t always apply to everyone

Justin is doing great, too. He’s proven himself to be a great big brother, and has learned that when mommy and daddy are busy with Zane, he can entertain himself quite well without our help. Before Zane was born, we went to the beach a couple of times, and took Justin in the pool and to the park more often. We aren’t able to do those things as much now, but Justin seems to have adjusted well enough. Any kid who’s resilient enough to stay in 60 different campsites over an eight-month period can probably handle the minor changes in his routine with no problems. Besides, with us going back on the road soon, Justin will be back to spending more time outdoors and away from the TV.

Susan and I are also doing well, although we’re tired most of the time. About 15 minutes before each of Zane’s feedings, we’ll do things like change a diaper and start warming up some formula; things you would expect to do with any baby. We’ll also check the placement of his feeding tube. We do this by uncapping the end of the tube, putting an empty syringe on it, and forcing air through the tube into his stomach. We listen with a stethoscope to make sure we can hear the air moving through. Then we extract the air, and then pull back on the syringe to see if he has any residuals from his last feeding. The amount of residuals tells us how well he’s tolerating the current volume of his feedings. (The tube, by the way, gets replaced every three days). After checking tube placement, we’ll bottle feed and/or tube feed him, then give him about 30 minutes in an upright position to make sure none of it comes back up, which can cause aspiration. The process takes about 45 minutes, every three hours. Sometimes it doesn’t seem like much time passes between the end of one round of care and the beginning of the next round. We no longer do his care and feedings as a team; rather, we each take two feedings in a row, then gets two feedings off. I take the 3:00 and 6:00 feedings, am and pm; Susan takes the others. It works out pretty well, although we still find that naps are in order to keep us functioning properly. The cards, phone calls, emails, and prayers have all helped, too.

Look for another update a couple of weeks after we get back on the road.

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