Pure Frustration

Well, after much anticipation, we thought that Daisy may have been transferred back to Frimley today, however, the Special Baby Care Unit (SCBU) has had some more admissions overnight, and therefore there isn't any space on the ward for her.
The doctors have made a few decisions and have reduced her feed (no shocks there!!) and she shouldn't be feeding through the TAT tube anymore. However, when we rang this morning, it seems that all that changed overnight, and she is having alternate feeds (one through the tube, one from the bottle).
I'm (and Liz) am getting more and more frustrated, if not annoyed with what's happening as we have no input into the care of our child. We can't discharge her from the hospital (well we could but the TAT tube requires minor surgery to remove it) and she does still need that little bit of extra care that we couldn't provide at home, but everyday something changes and there doesn't seem to be anybody who can tell us what's happening and why.
I will hopefully get some more pictures, but as Daisy hasn't really changed much and is still in a normal cot, sometimes it doesn't seem worth it.

On a different note, Lily is coming home tomorrow. Two weeks away from mummy and daddy is a long long time, and she needs to come home really. It will make things more complicated for us to visit Daisy, but Heather and Tony probably really need the rest now !!! Thanks you guys for having Lily for so long. It wasn't supposed to be like this, but you've been a really great help for us. We will sort out what we'll do with Lily whilst Daisy is still in Hospital, it shouldn't be that much hassle if we don't let it be.

More when we know more.

Ian and Liz.