I'm not sure if in the last post whether I explained how Olivia's NG tube feeds were
to be run or not. We were to try and get her to take food (pediasure)
orally at breakfast, lunch, dinner, and 2 snacks. If she didn't drink
the pediasure by mouth, then we had to feed it through her NG tube plus
we had to do a 10 hour overnight feed.
We took her back to the CF Clinic two weeks ago (Jan. 2). She missed her weight goal just slightly so she had to stay on day feeds for at least two more weeks. We were quite disappointed at that appointment since she barely didn't
make the goal and they didn't let us drop the day feeds yet.
Weight wise on Dec. 12th when they asked us again to put in her for the NG tube her weight was 16 lbs 5 oz. On Jan. 2nd her weight was 18 lbs 4 oz. A TWO POUND GAIN!! However the goal was 8.5 kilograms, she was only at 8.27 kilograms. /sigh Height wise she gained a few tenths of an inch but it gets rounded to the nearest inch on their online notes for us which was 29 inches. They enter it in cm.
So we went back today (Jan 16). She is now at 20 lbs 2 ounces (9.12 kilograms) and 30 inches (75.5 cm or unrounded inches is 29 and 3/4). Her weight to height ratio went up to 44%. They are letting us do normal feedings during the days. YAY!!! Now hopefully she'll start eating again since she hasn't been and we've been having to push them all through the NG tube. They want her to do 17 oz of pediasure during the day. Before all this happened she was only doing about 13 oz. We are still doing night feeds and we are supposed to increase the oz. (ml) of those so I'm thinking that will keep her from being as hungry during the day as she should be. =/ Put hopefully it will go well. We have two weeks to get her in a groove with this.
On another note a good friend of mine's daughter passed away this week. It's been bothering me some because
* nobody should outlive their child
* she died at 35 and that is the around the average life of CFer right now
I think that sums everything up so far.
