Monday, January 01, 2007

Ins and Outs

We are continuing to carefully measure everything that goes into her and comes out of her to make sure that she is in balance and isn't getting dehydrated. This weekend (why is it always on a weekend?) even though Ellie didn't show any signs of being dehydrated we noticed an increase in her ostomy output that crossed the threshold for her body size. This was a bit scary for us but a quick call to her surgeon on New Year's Eve reassured us that she was okay unless she showed us other signs of being dry like dry lips, a dry tongue, or no urine.

Let me tell you that it sure is nice to have a surgeon that calls you back on New Year's Eve.

Ellie is eating between 200 and 250 ml (about 7 ounces) per day from her pump and also through her mouth. This is right on the schedule for advancing her food that the doctors want us on (adding about 30 ml more per day each week).

She eats as a combination of bottles and through her feeding pump. Bottles are always preferred but the pump is great for the middle of the day or if we have to go somewhere when Ellie won't take a bottle. We can hook her up and by the time we get home she has had half a day's worth of food. The pump is a dangerous toy, though, and it would be very easy for us to put her on the pump all the time and forget about bottles until we try and feed her by mouth a year from now and she has a nicely functioning gut that she can't get food to.

The combination is working well and she still likes to eat by mouth. If we were racing to get her fully fed to save her liver it would be different, but with Omegaven the rules have changed and we have the luxury of letting her learn to eat slowly.

She continues to do everything that she should and keeps us entertained all day.

http://www.youtube.com/watch?v=1grT8r8xGP0



















We are still scheduled for a visit to Children's in two weeks, but may go earlier to get her blood tested if she continues to drain out her ostomy like she is. 11 miles for a blood test with the home team isn't all that bad. In fact, Children's thinks so highly of their lab that they won't let anyone else do their labs for them.

2 comments:

beth brogan said...

You know it's going to be a good day when you wake up to a new video of Giggle Girl in the morning! Thanks.

Kate said...

Let's all pause for a moment and contemplate 250 mls a day. Remember the days of 2 mls an hour? The Amazing Gut Girl gets more amazing every day.