Thursday, March 22, 2007

New feeding and old friends

Kara and Sophie came over today for a goodbye party for the Delvins as they get ready to move south. Liz, Hank and Ryder are all moving to Tennessee to become good old organic farmers. There are some pictures of the party mixed into this post. Below is Liz and her boy Ryder.
It has been two weeks since our last visit to Children's and since we got to see Ellie's new bowels. We have been changing our approach to her feeding now that her bowels are the normal size. When we first got home she would be on the pump over night a rate of 3cc and hour and during the day we would give her 2 bottles in the morning, put her on the pump for the middle of the day and then give her 2 bottles at night. Our main goal at that time was just to get her bowels working. Dr. Jennings wanted us to really work the bottles to get a "cephalic phase response". That is when the tongue tastes food it starts salivation in the mouth, then the stomach starts emptying and motility increases in the small intestine all in preparation for food. His theory was that through practice we could wake up the digestive system and get it all working better as a whole. Below is Ellie and her new best friend Sophie.
Now we still give her bottles but we don't have to worry about her intestines moving the milk we just do it so that she will remember what eating is like. It has taken us 2 weeks but we managed to get Ellie on the pump for 24 hours a day running at 20cc/hr with a daily total around 500. We did not increase the over all amount that she gets everyday but, she did gain the all the weight that she should have for the time period. That means that by spreading the food out more evenly through the day she was able to absorb more out of her food. That also means that the big 3-4 ounce bottles that we were giving her were just overwhelming her intestines and flowing right out the ostomy before she could absorb anything from the milk.So, for now we are going to stay were we are for food and not increase again, but we are going to start partially plugging her ostomy more often and for longer periods of time. Plugging the ostomy, you might ask how one would be able to do such a thing? Well we use a G-tube. We needed something that was small, thin and soft and a MICKY Button G-tube fits perfectly. We are not hoping to pug it completely just make it a bit harder for fluid to go out the ostomy so more will go down into her colon. When the fluid goes down into her colon her body will be able to reabsorb some of the liquid out of it and there fore increase her overall hydration. The small bowel also has to work a bit harder to push the food down instead of out so this is our way of doing bowel strength training.

We are not completely positive that this will work but, it is worth a try. We have a feeling that the G-tube in her ostomy may actually act as a stint and keep the ostomy open and making it easier for food to go out the ostomy. And this is not what we want. But, hey... this is all trial and error so, we just keep on trying new things.
It was great to be able to spend some time with our friends before they left and also fun to see our kids together. We will all miss Liz and her family, but now have reason to go to Tennessee. And Ellie now has a new boyfriend and this one I know will be grow up to be a real southern gentleman. Other good news.. Early intervention came to visit last week to evaluate Ellie for home physical therapy, and..... she got turned down! They said she was at age and even advanced for a 11 month old. Way to go Ellie!

3 comments:

k8land said...

Great news (and looks like a great visit). Keep it up, team Ellie!

Alicia said...

Great to see all of you (Sophie, Kara, Liz) in these pictures! Hope everyone is doing well. Good luck with your move Liz and your son is adorable. I'd love to hear from everyone. My email is aliciamayers@gmail.com.

Sophie said...

I feel famous now that I made the blog! It was a ton of fun to have the girls back together again. Ellie truly is my new best friend.