Friday, February 13, 2009

Good News, Better News, GREAT News!

Good News... Kenzies poops have NEVER looked better! (She'll kill me one day for writing that but whatever)

Better News... Today was a great day! Actually the last few days have been really terrific! Kenzie is taking her bites and swallowing so much better than ever. She clears her mouth now without much effort and is starting to open around the spoon with more confidence. She very rarely needs the nuk too!

GREAT NEWS... We got our first tube cut!!!!! At current time Kenzie has been on 750 cc's of formula a day. Her rate has been 60cc per hour. That means she was getting her tube feeds for 12.5 hours a day. We have been trying to give her about 2 - 3 hours during her nap time and the rest at night while she sleeps so that we don't need a backpack or anything during wake hours. PO (per oral) Kenzie is now taking 2oz each feed and not vomiting up that much. Calorie wise it's about 100 calories a day. So today the nutritionist came in and told us that they would cut Kenzie's tube feeds 1/2hr per day or 30cc. We haven't quite understood why if shes gaining so much weight and taking in 100 calories by mouth, that they are only cutting 30 from the formula but we are so happy we don't really care much. We can find out Tuesday when the nutritionist comes back.

The Jtube has really changed our life for the better. With no vomiting and faster rate, managing tube feeds has become so much easier. My goal coming here was to have Kenzie leave here tube free during the day. Although my initial goal was to do that by having her take less formula all around and not so much at night either... at this point I dont care. If Kenzie can get cut 1 more hour while shes here in the next 3 weeks, I will be really happy!

If things continue to go as they are and Kenzie keeps finishing meals as fast as she has been, we are going to try and increase her volume from 2oz a meal to 3oz.

Sunday, I start my training. Sunday and Monday I will be in the room with kenzie while she eats to cheer her on. Tuesday I start feeding her with a therapist in the room to help. I am excited and nervous all at the same time. Jordan will get trained in 2 weeks so we both know what we're doing. Also, we got the green light to try chicken and turkey next week. This will be Kenzies first meats and we are very anxious to see how her gut will respond. The last plan they have in store for us that we know about as of now is that if I become solid in a week or so at feeding Kenzie, they will add in a 4th meal that I will do alone with Kenzie in the evening down in the feeding rooms. That means more calories and more tube cuts!

No time for pictures but I'll put some up tomorrow :-) Have a happy Valentines Day!

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