Thought I’d better add a post just so you all know everything is okay. Well at least it seems to be generally okay.
Rose is tolerating her feeds pretty well though when they tried to move her from 1 to 2 hourly feeds a couple of days ago she didn’t tolerate the change so she’s back on 1 hourly feeds and tolerating well. It’s better if she does tolerate the 2 hourly feeds as it’s another step towards oral feeding.
She had a blood transfusion yesterday as she was anaemic and the iron supplements they started her on this week weren’t doing the trick. So she’s much pinker today.
The speech pathologist (Caitlin) came today and showed me how to stimulate Rose’s suck reflex with my finger and approved the practise of dummy dipping… giving Rose a taste of EBM on a dummy when she’s being fed through her gastro tube so she associates the taste of EBM with her tummy filling. We can only do this when she’s alert and awake of course but she’s written it into Rose’s notes so nurses are more likely to do this now when I’m not there to ask. We touched on the voice issue as Rose’s sounds have not increased in volume but seems it’s impossible to tell what’s going on there without the LBO which is loosely scheduled for first few weeks in May. Don’t think there’s any huge rush for the LBO. Just information that can be used much later in her therapy or to assess the need for operations. For now she really just needs to grow and eat and breathe and get stronger. Weigh in tonight. I’ll update her Weight Chart tomorrow.
She seems a bit more unsettled generally – it’s horrible arriving to a silently crying baby and wondering how long they’ve been like that. I think it may be the CPAP mask making her uncomfortable.. she seems to be trying to wriggle out from under it. She’s found her hand though – a matter of time before she discovers her thumb I predict. Finally I may get the thumb sucker I always deserved! Or it could be that when she is fed the food hitting her empty tummy makes her uncomfortable. I feel this could be improved if the milk was warmed… sometimes it’s only just defrosted… but perhaps this is just one of those little things Rose and I have to put up with given the circumstances.
Good day today as we had Jen and she’s very skillful at handling Rose and placing her CPAP plus she has a bond with Rose and I find that so reassuring. The day before was a nightmare with inexperienced nurse. I know they have to learn… I do… I even support them learning on Rose in theory but physically sometimes it’s all I can do not to ask them to leave her alone.
Good night (and thanks for your books, messages, comments, delicious dinner and soul nurturing visit today (San)) – your support means so much to us xo