Thursday, 24 December 2009

Maggie's move

Despite the assurances of three consultants over the past three weeks (including the head of the neonatal unit) that Maggie wouldn't be moved to the children's ward until a) our consultant, Dr Roy, returned in the new year and could hand her over to the pediatric consultant properly, b) we were ready and happy and it wouldn't be rushed at all and c) well, maybe not at all if her surgery was done in the near future and there would be no reason for such upheaval...we received a phone call yesterday at 12pm telling us that this week's consultant had decided that Maggie would be moved between 3-5pm that day.

The reason for such contradictory haste? A bed had come available in the children's ward (which often happens). And there's an expected (not definite) staff shortage over the Christmas holidays. And there's an expected (not definite) influx of intensive care babies (which would have an impact on Room 3 in perhaps a week or two's time). And Maggie's needs are moving beyond what the neonatal nurses can provide (needs which, given her current distress and agitation and sedation amount to feeding her, changing her and cuddling her).

I felt completely blindsided and really, really upset - three fucking days before Christmas, which is already going to be hard enough, and they have to do this to us? We had our sad little plan of going up on Christmas morning with Alice and all going into one of the rooms to have our first little family Christmas together on our own. Sofas, chairs, tea making facilities, even a telly - we could almost pretend it was home. And we could do the same when Isaac and Louie come down. On the children's ward? Huddle round her cotbed and try to find a spare chair to squeeze into your allocated little space because there are no additional rooms.

But beyond this was the sudden change - I know where I'm at in the neonatal unit. Seventy five days there and I'm pretty much autonomous when I go up there to look after Maggie. I know the nurses that look after her, a handful of whom look after her every time they're working and I have come to trust them and I trust their care of her. And now the idea was that I meet 50 more shift nurses, who don't specialise in babies but children up to the age of 16, who don't know Maggie and her likes and dislikes and quirks. I won't have the same easy access to (contradictory) consultants who pretty much come when you call. I won't have as much space and leeway when it comes to accommodating Alice. And I never imagined leaving in this way - booted out after 75 days not to go home happy but to go downstairs to another ward, scared and frustrated.

So we kicked off - first to the staff nurse who told us the news, then to the neonatal nurse manager and then to this week's consultant. A meeting was called right away and after an emotional, desperate, two-hour conversation - with us pointing out the contradictions in this consultant's handling of our care compared to his colleagues, challenging their reasons for the move and the need for it to be so sudden - they agreed that although their preference was to move Maggie that day, they would do everything they could to keep her on the neonatal over the holiday period.

I felt so much better to have that reprieve, to know that although it would no doubt happen and quickly when it did, at least we could go ahead with our Christmas plan and I could have a little more time to get used to the idea of the move and have some more time to meet the children's ward staff and learn their practices.

Then the neonatal unit rang today at 4pm to say that due to critical staff shortages (two nurses calling in sick for the next three day period) Maggie would have to be moved before the 7.30pm shift handover, nothing else could be done for it.

And so she's moved - fucking rollercoaster again. I went downstairs ahead of her to get her cot ready with all of her things so they'd be there for her but I couldn't face actually going with her out of the unit and down the corridors, seeing her wheeled about the hospital. I went for a cry and a cup of tea while they did their handover and went back to her new place and tried to settle in with her.

The saving grace of all this today has been Maggie herself - a change in her reflux treatment yesterday had made a real change in her today. Her physiotherapist noticed it, the staff nurse noticed it - both saying she was like another baby. A relaxed, alert one that barely cried during her feeds, seemed to enjoy the physiotherapy and had a really, really lovely day and start to the evening. It eased my upset a lot to see her so...well, normal. I left her just before 11pm and she was sound asleep after another successful, pretty much stress-free feed.

Only I've just rung now to see how she's been and the nurse told me in a rather off-hand manner that she'd been unsettled since midnight and had to have sedation, only it hadn't really worked that well and I could hear her crying in the background.

Can I mention the rollercoaster again?


  1. Christ guys - hang on in there. Am thinking about you all lots. Come up & see you again after Christmas I hope? xxxxxxxxxxxxxxxxx Tara

  2. Bloody unfair and heartbreaking for you. I wish there was something we could do to help you all, but please remember that we are thinking about you constantly. I know it's hard, but at the end there it sounded like there might be some good news about Maggie's feeding.

    We'll be over to see you soon.

    All our love Sally, Rob, Ava, Maddy and Hal xxxxx

  3. Take care guys, see you soon x

  4. Wishing you all some respite from this rollercoaster so you can share some happy moments with your beautiful girls this Christmas,
    Big hugs to you both too, you are doing so well,
    Susie x

  5. Christmas will be in a little tighter quarters....just means you all have to huddle a little closer. You'll make the best of it, because that's what my sister does! I hope Dr. Roy gets on to the staff about this heartless move at a very inconvienent time.

    We were listening to the Christmas CD you all made a few years ago....reading The Night Before Christmas just before the music....makes me laugh listening to Isaac!
    Happy Christmas big Schwester.....see you soon!

    Mary and Bob