Sunday, May 4, 2008

Button Button (Here's Nathan's Button)

Nathan's first tubtime. He LOVES the water!

This is a Mic Key Button. It has a balloon inside of his skin holding it in place.

We have to keep it bandaged so if it leaks it won't burn his skin.

Since Janice, Sheena & Heidi have never seen what Nathan's button looks like I wanted to post a few pictures for them. The button has a cover across it that covers the port that the extension tube set connects to. During the day we bolus feed him (meaning we attach a large syringe to the connecting tube set and let the milk drain through over a half an hour or so using gravity). At night he is connected to a machine that pumps milk from a bag at a little over an ounce an hour. This goes on for 12 hours at night. At night he is fed about 14 ounces of milk and during the day he gets about 7-8. He has such a little tummy because of the Nissen and can only tolerate between 2 - 2 1/2 ounces of milk in his belly at a time. We are working on trying to up his feeding amount during the day and lessening the amount of food he gets at night. Right now because he is fed at night, he sleeps from about 9:00 p.m. to around 9:00 a.m. (I'm so spoiled. Now if only Ellie did that too!)

Up until 2 weeks ago we really didn't have any problems with the button. Now granulation tissue (which is the body's way of trying to close the hole on the foreign object) is forming. As the button is still relatively new I still can't put the steroids on the wound site to keep it from forming. Hopefully in a couple of days the doctor will prescribe some cream for Nathan's button. We don't know for sure how long Nathan will keep this. He has to be able to get all of his nutrition by mouth, which until after he has his surgeries we won't even know for sure.


Sheena said...

Glad I read that last paragraph because my first question was going to be how long do you have to do that. My other question is it going to get harder to do that when he gets more mobile? I'm glad you posted pictures of him, I can't wait to see him in August!

Jake & Stephanie Ellinger said...

It is going to be more difficult to feed him when he gets older. We'll have to cross that bridge when we get there. He'll be taking a big set back in strength for a while after he has his heart surgery. It will take him 6-8 weeks to be back to his normal "before" self. My guess is that he will lag a couple of months behind other babies his age in learning to roll, crawl, etc.

Janice & Don said...

So I just had this discussion with Ginger about Jacob (the little boy with the button next door). She said that the best way to keep it clean was to use a mild hand soap and q-tip to wash around it each time he is fed. Do you want her number so you can ask her how exactly to do it?