Oct
13
2008
Monday October 13, 1:30 PM
I feel bad that I have not continued to update the blog on a daily basis but there is not a lot of progress similar to what we experienced in the hospital. I also underestimated the number of people who are looking for updates so I apologize for being such a lame poster.
Lilee is doing well we did get some good news this morning I thought I would share: We can stop the Lasix and the portagen. So all that milk that Afton has been pumping and freezing can begin to be used! And even better yet at least one of the feedings a day can be directly from the source (if ya know what I mean). All the other feedings have to be done with the bottle so we can measure the amount of intake. We have an appointment on Wednesday with our Cardiologist to determine if we will be able to stay off the Portagen but we are hopeful.
She still is not much of an eater. We are beginning to wonder if Lilee has just figured out the system and realizes she only has to make an attempt to eat and after this short attempt the rest goes in the feeding tube. I can just imagine her little mind thinking "only a few more minutes of this work and then I'm home free". I'm sure at some point we will make an attempt to remove the tube and see how her feeding improves. My guess is that it will improve dramatically, wouldn't yours if you were starving:)
So the improvement is small but the feelings of excitement are not so small. Any improvement is better than none and Lilee really is doing well.