Day 13

I was planning on updating days 12 and 13 together, so I was very pleasantly surprised to see that Gary posted about day 12! What a great daddy and husband!!

When I got to the hospital on Wednesday Tanzi was back up to her full feeds (16mL/hr) and she seemed to be tolerating them just fine. One thing Gary failed to mention was that on Tuesday Tanzi threw up some nasty green stuff a couple times. One time I was even there when it happened. This is NOT supposed to happen....that's what the Anderson tube is for, to suck all that stuff out! It reminded me of the first couple days of Tanzi's life when she was spitting that up a lot. So, when they stopped Tanzi's feeds on Tuesday they also stopped the gastric re-feeds. So, today (Wednesday) she was back up to full feeds, but they did NOT re-start her gastric re-feeds. Since she was tolerating this just fine I thought maybe the re-feeds on top of her full feeds was just too much for her little body to take. I mentioned this to the NP and she was thinking the same thing, which is why she didn't re-start her re-feeds. We brought this up during rounds and the Dr agreed that this was probably the case. So, Tanzi will stay up to full feeds, stay OFF of the gastric re-feed, and conitnue to have a central IV for fluid replacemnet. The Dr told me that I need to have a little pep talk with Tanzi and tell her that she needs to stop pulling her tubes out and get better soon so she can go home. Believe me, we have these pep talks EVERY day, but someone (Tanzi) just won't listen! :)

It was originally thought that surgery would evaluate Tanzi on Friday and we were all hoping we could change her NJ tube to a G tube. This means the feeding tube would end in her stomach, instead of her intestine. This is a HUGE step!! So, we were starting to get our hopes up. However, in order to do this we first have to get the Anderson tube out. It wouldn't make sense to feed her into her tummy if there's a tube there sucking everything out. But Tanzi still has WAY too much stuff being sucked out of her Anderson, so this will obviously not happen on Friday....or any time too soon.

While some of this seems kind of discouraging, we are just glad Tanzi is doing as well as she is!

All our kids have kind of had the old man hair-do....they don't have hair on the top/front of their heads. It is especially noticeable on Tanzi since her hair is a little darker and what she does have just sticks up! They also had to mark the NJ to make sure it doesn't slide any more.

Here she is looking quite serious

And here she is looking very peaceful

I got to go to group therapy again today. They fed us a potato bar. It was good. There were a lot more parents there this time. And one couple wouldn't stop talking! The husband was pretty funny and they were both quite entertaining! As much as I hope their little boy gets better and goes home soon, I kind of hope they'll be there again next week...it makes things seem a bit more enjoyable!