SORRY!

Sorry again for the lack of blogging! We have had a pretty busy week!

Wednesday they started Fiona on "bolus" feeds, meaning that instead of doing it continuous for 24 hrs a day, they do it in a certain amount of time. Most babies take about 1/2 an hour to drink their bottle and eat about every 3 hours. There is no way that they could go right from continuous to 1/2 an hour because her little belly wouldn't be able to hold that much, so they gradually decrease the time it takes to give her the milk. She is getting 18 cc/hr (which they increased from 17 to give her more calories), so if she was eating every 3 hrs she would be getting 54 cc. They decided to start out giving it to her over 2 hrs. They do her feedings at 3,6,9, and 12. So they would feed her from 3-5 then give her an hour break, then feed her from 6-8 and give an hour break, etc. She did good with the first one, but then threw up twice during the second time so they had to go back to doing it continuous. She was on continuous all of Thursday and then back to bolus at 2 1/2 hrs on Friday. She did good with the 2 1/2 hrs, so Saturday they went down to 2 hrs, and today down to 1 1/2 hrs (with the goal being 1/2 an hr). So she is getting 54 cc at a feeding, which is a little less than 2 oz. I know it's kind of confusing!

Wednesday they also starting trying to give her a bottle!! The first time that the Occupational Therapist came up Fiona sucked a little out of the bottle but then just spit it back out. The secong time that day she actually got about 1 cc down! Thurday and Friday she wanted nothing to do with the bottle. On Friday she did suck about 2 cc out of the bottle, but then just left it sit in her mouth and wouldn't swallow it so we had to suction it back out! She does pretty good with the sucking, it's the swallowing that she doesn't quite get yet! It might be a long process.

On Thursday they put her on the home ventilator. Pretty much the same thing she was on, it's just the one we will be bringing home with us and not as expensive as the one in the hospital haha! Apparently the one in the hospital costs about $50,000 and the one we are bringing home costs $10,000. Still a pretty expensive piece of equipment to have in your house! They had to do a little adjusting a few times just to get her at the right settings because even though it is doing the same thing, it can be a little different. They told us not to be surprised if she didn't like it and they had to put her back on the hospital one and try again, but she did really well with it and is still on it!

We are going to have so much equipment in our house! Not only will we have the ventilator (and another one for back up and transport), but we will also have an oxygen machine, oxygen tanks (for transport), and a suction machine. And we will also have extras of all the tubing and all of her trach supplies. Zues (our dog) is probably going to hate us when we come home!

This was her second attempt with the bottle. Part of the problem is that she is always sleeping when OT comes to work with her!