I spent last night at the hospital with Maggie, to see for myself the distress she's been experiencing that's required sedation. I got there at half ten, with the plan being that I'd do her 11pm and 2am feeds (I've been signed off to do her tube feeds) and then the nurse would come for me if Maggie was distressed.
Turns out the nurse didn't have to come for me because I was there when she was distressed - until just gone 4am, when she finally settled (or so I thought). The first feed was fine and she slept straight away but awoke at 12.3oam crying and the next hour and a half was spent dancing, singing, bouncing, cuddling, patting and rocking - and it was relatively successful, in a edgy, precarious kind of way. She'd stop crying, have a little think about what I was doing, lead me to believe that it was working for a few minutes and then go back to crying. It was exhausting and upsetting and desperate - and sometimes, like her happy little face when I did the bicycle kicks I saw Paul do with her, thrilling and absolutely lovely.
I felt like I was proving my point - that surely cerebral irritations wouldn't always happen at the same time? That maybe sometimes what she needed, and what unfortunately the overworked nurses (Room 3 is now packed with babies and the nurse that's looking after Maggie is also looking after up to 4 other babies) couldn't always give her was more time and attention to settle her, rather than sedatives?
But then we got to 2am - poor little Maggie lying on her tummy for her feed (usually her favourite position) and crying into her cot non-stop. And this time I couldn't pick her up and jounce her around because she'd probably be sick so all I could do was pat her back and bum and sing to her and try to distract her with all her crinkly, noisy, brightly coloured toys. Nothing worked, for even a minute. And the real killer is that because she's tube fed, the food can't get down when she's crying, so then she's getting hungry, so she gets even more upset, and even less food gets down, so she gets even hungrier.
It got too much to just watch her so I carefully got her out to hold her and eventually she settled down enough that I thought it would be safe to go to bed. The next thing I knew, the nurse was knocking at my door at 5.30am saying that Maggie had been even more distressed for nearly an hour and the nurse had tried all that I had done and the doctor had reviewed her and felt that she needed the sedative in order to rest properly and ease what was probably either a fit or cerebral irritation. All that effort and we still ended up in the same place. I could've cried if I wasn't so tired and emotionally worn out.
This is how we arrived at the picture below - the sight of Maggie having another EEG was what I was unexpectedly greeted with when I went back to the hospital. I've gone back and forth and back and forth about including a picture like this here, and Paul's often edited out any photos of Maggie looking 'not normal', but it feels like we're hiding the fact that this kind of thing is what is actually happening to us, and it's what's going to be 'normal' for us when it comes to Maggie - nervewracking, heartbreaking scans and tests and examinations on our little baby girl who is very, very ill.
So ill, in fact, that when I stay over at the hospital, Maggie's not even allowed to stay in the room with me, which is just down the hall. (That's where Paul's post awhile ago about asking about Maggie coming home came from, by the way - a protective gesture because I was so upset the first time I was told this. Please do ask whatever you want to ask, about her coming home or anything.)
The EEG is to try and determine, if they can, if it's abnormal brain activity - seizures - that's making Maggie so distressed. If they see signs of increased seizures, the next discussion will be about treating Maggie with anti-convulsant drugs, which we've been trying to avoid because they'll basically just knock her out. If they don't see them, it's back to the drawing board - is it reflux? Colic? Or lower level cerebral irritations that don't warrant the drug therapy? The first two are too much to hope for so I'm pinning mine on the last one.
And Alice? She deserves a dedicated post rather than being a little postscript, so come back tomorrow (or the next day) for that.