We've been quite down these past few days, and also quite frightened by the enormity of what's happening, so we've been taking it in turns to try and distract/cheer each other up (Paul's much better at this than I am).
But today felt better - I think because we were being more proactive and trying to get on top of things that had been niggling away at us. I arranged with the new neonatal manager for Alice to have her own cot next to Maggie so she's no longer laying on the floor in her carry cot (although she loves her carry cot - thank you to Emma for this! xx). And then there was an hour-long consultation with the speech therapist - admittedly interrupted several times by Maggie's oxygen levels dropping and then also by a rare crying jag from Alice - who has armed us, and the nurses, with exercises to do with Maggie to try and help her develop her swallow and suck reflexes. She was positive, honest, kind, patient...probably would have done Paul's head in but I liked her. And I liked that she's given me something tangible to do to help my little girl - and that she pointed out that my fears of a future of tube feeding are a bit hasty considering that Maggie is only three weeks old. There's no escaping that it's a worry that she hasn't developed these reflexes, but it's not a done deal yet and that's what we need to focus on now.
Then it was a discussion with our consultant about their course of action for Maggie - and again a reminder that it's going to take time to know what this is. A week of the oral exercises and stimulation followed by another assessment, trying to increase her feeds to two hourly and keep them there, trying to keep her more stable so she needs less oxygen support. And maybe us learning how to tube feed in case it does come to that...but we're not really up to that reality at the moment and keep shying away from it.
Alice was a part of our active action day too - in that we finally gave her her first bath. And it was very sweet - from Paul preparing everything and guiding me on how to do it (I was completely clueless) to Alice's little round face taking it all in so peacefully and enjoying floating in the warm, bubbly water. Bless.