Wednesday, 25 November 2009

Big Maggie

Although she isn't yet matching Alice in size, Maggie is doing pretty well for herself in the weight gaining department - she now tips the scales at just over 7lbs and the doctors are pleased with her steady weight gain. Like her sister, a fair bit of it is going to her cheeks but she's got enough left over to add to her number of chins, bless her.

Seven pounds is still pretty small going for a six week old baby but it's pretty big going for the Neonatal Unit, which is why today one nurse tracked down a bigger cot for Maggie after mentioning it to us at the weekend, as Maggie was starting to butt against the sides of hers. And of course a bigger cot means that Alice can pop in next to Maggie when she's up at the hospital too and we can get a bit more twin time for the girls.

I was really excited about this, and looking forward to seeing the girls together and Maggie having more room. I forgot that it would be really sad to see Maggie in a big cot on her own until I went to put her in it - and burst into tears. It was too big and she was too small, she looked lost in it and so alone. Of course, it didn't help that the cot looks very institutional and not at all warm or homey nor that Maggie was also crying (and had been for the past two hours) - we were quite a pair there for a few minutes, my little girl and me. I felt bad for the nurse who had been running all over the hospital to find this elusive spare cot for us - only to have me crying over it. I apologised to her so she'd know that I appreciated her thought and effort but she completely understood and said that if I wanted to go back to the little cot I could at any time. But I think there needs to be an element of manning up here and dealing with the sadness of seeing little Maggie in there on her own.

It's been a confusing week for how Maggie's getting on - good news, bad news, unclear news. The good news is that Maggie's speech and language therapist reported definite sucking - albeit in a short burst - when she examined her on Monday. She was very pleased about this and so were we - particularly as it had been hinted that another week of no progress might mean starting to explore other, not very nice, ways of feeding than orally. We might end up there but for now it's continuing with the oral stimulation and hoping that Maggie gets more consistent with it.

Another bit of good news is that Maggie started three-hourly feeds today because she's been handling her two-hour ones very well, with little vomiting or suction. Fingers crossed she can handle these too.

(Sometimes, like now, it hits me how truly awful it is that things like sucking a little and not vomiting are cause for happiness. It's just really, really sad and horrible.)

The bad news is that although Maggie's mini-EEG at the weekend revealed no abnormal brain activity at the time, it's now pretty much accepted that she is having some form of fits or seizures. And she's also having what the consultant called 'non-specific abnormal brain activity' - not quite a seizure or fit but high amplitude waves/stuff that could very well be causing her to be so distressed so often. And it's very distressing to see her so distressed on top of everything else - the first few weeks she wasn't at all. Whenever she was awake she was alert and peaceful and taking everything in. She still has periods of being like that but they quickly descend into her being upset and agitated.

The unclear news is how often or severe these fits or seizures are - we're relying on observation to chart them so they can decide whether or not she should be medicated for them. (The medication is a heavy sedative that they would like to avoid if possible.) But because the signs of a fit or seizure in a newborn can be very subtle, it's not always easy to know what you're looking for and what you're seeing. According to one nurse's observations, Maggie basically spent all of Sunday morning having fits but then the nurse on after her didn't see any at all. The nurses are meant to grab a doctor to confirm what they see but this isn't always possible and so far only one instance has been confirmed by a doctor. And when I tracked down the consultant for some clarity he gave me the impression that actual fits/seizures are not happening nearly as often as some of the nurses are thinking - what they're witnessing is probably this 'non-specific abnormal brain activity'. Of course, he's got the benefit of knowledge and experience to be able to sift through their observations - I get to be scared and horrified by each one until I'm told otherwise.

Poor Maggie, I'm now seeing fits in every little stretch and movement she makes, and brain damage with every cry. Luckily Paul's been there to point out and remind me of the normalness of so much of what she does - crying when she's hungry, when she's tired, and just when she feels like it.

Just like Alice does. Alice is now focusing much more and it's so sweet to see her recognizing us, following us with her eyes, just gazing up and the proper smiles are starting now too, especially when she's with Paul, who is so fantastic with her. I already knew he was an amazing father, just born to it, and it's really sweet to see him with our own little girls. Alice wouldn't be so chuffed with him if she knew that he says she looks like The Thing (from the Fantastic Four) though - my references to Buddha and Yoda are much nicer!


  1. The little things to the rest of the world are great big strides to someone else. Hoorah for sucking and less vomiting!!!

    The big crib is not so you say Alice can now be popped in there to hang with her sister and I LOVE seeing those pictures!!!

    I'm waiting to see when the Forbush might come out in these girls.....the cheeks just outweigh (literally) all their other attributes....but gotta love those cheeks....thank you Paul Saxton!

    Hopefully you have a mini spread tomorrow (now today for you). We'll make pumpkin pie when I come over.....I have the filling for it, just waiting to go on the plane with me!

    We miss, love, and think of you all A LOT!

    Happy Thanksgiving from Austin, TX!

  2. Paul could be right about all the twitching and crying. Analou, though not sick obviously, cried non-stop the first 8 weeks (and still a lot afterwards). Sometimes there was no calming her down, unless we held her really tight (almost suffocating her in fact). It's not weird for really young babies (I was told most of them just don't like this world much in the beginning, after a long cosy stretch in the beautiful aquaworld of the womb).
    But I understand that you worry all the time. of course you do honey. Just have faith in the specialist who said they might nog be fits or seizures all of the time. I know it must be hard, but it sounds plausible, right?
    And hurray hurray that she's switching to 3-hour feeds and putting on weight. It's not small things, not for a new mum & dad, and definitely not if your baby is sick. We monitored Analou's poo for godsake! Is it fluid? More like tapenade? Yellow? Green? Does it smell? Anyway, you get my point ;-)
    And yes, the cot is too big but they always are! She'll be fine in it. Good girl Maggie!
    xxx Wini

  3. Well done, Maggie! Glad to hear about the sucking.