Monday, 19 July 2010

...And the optic nerve too

I just wanted to add a little bit to Paul's post about the great news about Maggie's vision...and why it really is really great news.

Months ago, when Maggie was still in the hospital, the early eye examinations revealed that although the structure of her eye was fine - that she could probably technically see - the optic nerve connecting her eye to her brain was pale. This can happen in cases of prematurity, but it also occurs in cases of brain damage - and given that Maggie wasn't yet fixing or following on any objects, including us, we were kind of warned that the latter could be the case. And what would that mean? That the worst case scenario was that Maggie would 'see' things but she wouldn't understand what they were, she wouldn't remember them, she wouldn't be able to make any sense of them. So there really wouldn't be much point of seeing anyway. And it used to break my heart time and time again in the hospital to think that she was looking at me, seeing me, only to move my head out of her line of sight and she would just continue looking in the exact way. Would I have a little baby that didn't know from just looking at me that I was her mum?

Needless to say, I've been worried about those optic nerves and what they meant for a long time. At the appointment last week the consultant said that he wasn't even going to put Maggie through the eye drops and tests because he felt confident just seeing her look around the room at all the different people and all their different movements and their tester toys that she knew what she was seeing, that she was definitely taking it all in.

Of course they had to add in that her understanding could be delayed, slower, what have you but really, yet again, it's just about Maggie being so much better than they thought she would be nine months ago, five months ago, three months ago. She's a bloody superstar - who now smiles right at us.

Sunday, 18 July 2010

Looking Forward: The Eyes Have It

The chickens have been counted.

Maggie has been keeping her food down really well. She's hardly vomited at all. Except when she's had a cough. And even then it was a minimal amount.

She's also continuing to sleep through the night. She wakes early though: around 6am. Still, it's a vast improvement on what was happening before.

She's happier. Much happier. Which makes her more responsive and easier to deal with.

And here's a thing:

We took her to have her eyes tested last Monday. We knew she could see. But given the way she acts, combined with her squints, we worried that she couldn't see too well.

As it turns out, she can see very well indeed. Which means all sorts of good things in terms of her future development and learning.

Actually, I'm being a bit too laid back about this.

We were, of course, absolutely over the moon. Really, really happy.

It's another positive step forward. For her and for us.

And I have to say that although I always seem to be moaning about the NHS and the consultants, the doctors who examined Maggie's eyes were great. Not just because they were the bearers of good news but because they communicated well, they offered good advice and they were extremely professional and friendly throughout.

So she can see. She's keeping her food down. And she's sleeping through the night.

It just gets better and better.

More soon.

Sunday, 11 July 2010

Looking Up. A Bit.

Maybe it's safe to count our chickens.

For the past week, since last Sunday, Maggie has been sleeping all the way through the night. From 8pm-ish to around 6.30am.

Even better - much better: she's been keeping all of her feeds down. She's barely been sick at all. This, as you will know, is completely unheard of.

It deserves a massive hurrah!

This is what I wrote in a recent post:

"What we did, from a suggestion of one of the women at Quidenham, is increase Maggie’s omeprazole – the medication she takes to help keep her reflux in check. It turns out she was on the very lowest dose. We increased it and the consultants agreed to increase it. But they stayed strangely mute when asked whether if we’d have increased the medication earlier – months earlier – she’d have put weight on earlier.

At around the same time, however, she developed a cold and a very bad cough. Which she still has. It causes her to vomit. So we’ve yet to see whether increasing her medication will work.

If it does work, we’ll be extremely angry. Because it could have helped Maggie’s growth and development months ago."

It looks like it's worked. So we're extremely angry. And even angrier after we heard last week that Julia, a community nurse who does a great job of keeping an eye on Maggie (and us), apparently wanted to increase the medication earlier but was told not to. Presumably by Maggie's consultant. We will, of course, be getting to the bottom of this.

The downside of Maggie sleeping through the night is that she misses a feed. So we have to make it up through 'snacks' and increased dosage throughout the day. She desperately needs to put the weight on, remember?

There are, however, many upsides:

She's sleeping through the night because she's keeping her food down. More sleep equals better development. More sleep also equals a much happier and more responsive Maggie. She still cries quite a bit but she doesn't howl all the time. She isn't so distressed, so fucking miserable.

A happier Maggie means a happier us. Which means a happier Maggie. It goes round and round.

In a nutshell: the increase in medication appears to have worked. She sleeps much better and is much happier and will hopefully put on weight. (Things she could have been doing months ago. During those utterly crucial months.)

So Maggie's happier and we're happier. But before we get all hurrah about this: she's still a very clingy, noisy baby that constantly wants to be held (which is not surprising given that we had to hold her all the time when we fed her to keep her reflux in check which maybe we wouldn't have had to do had they increased her medication ages ago and... well, you see how this goes, how everything can be linked to the crappy care she's received so far).

A quick aside: her dietician (a trained NHS dietician who gets paid for being a dietician) said to us, after she'd failed to keep Maggie's vomiting and reflux and growth in check: "I'm all out of ideas."

All out of ideas. Fucking hell. I'm going to try that on one of my clients when I can't be arsed to do my fucking job properly: just ring them up and say: I'm all out of ideas. And they'll just say: Oh, okay, thanks.

Back to Maggie.

She still scissors her legs and doesn't bend her arms properly. She's still far too floppy and still has poor head control. She still hates going in the car or the pushchair. If we could crack the car and pushchair thing we'd be laughing. Well, smiling at least.

On Saturday we did something very normal: we went round to our friends Chris and Marie-Claire's house for a barbecue. It helped, of course, that they're lovely, accommodating people but it was especially good because Maggie was good. She got upset a bit and she had to be held a lot of the time but... she wasn't a complete fucking nightmare. And, crucially, we didn't think, before we went round, that it was going to be horrible. We hoped, because she'd been so much better, that it would be okay. And it was. More than okay.

I mention that because it's a step towards us getting our lives back. I mean, it's not as if we went mountain climbing or scuba diving every weekend. In fact, all we used to do was sit in the pub (oh, but it was great). But at least we left the house. A lot. With Maggie the way she is now, we feel as though we can do that more often.

And maybe, if she gets to be a really good girl, we can take her to the pub. What a fantastic hurrah that would be!

Tuesday, 6 July 2010

At last, from Shannon

I've been more a follower of this blog than actually writing it...something I'd like to remedy, and regularly. But if you're reading this, you probably know what I'm like, so we'll see what happens.

The thing is, I've been finding it hard - overwhelming, actually - to get anything done that isn't what's immediately needed for Maggie and Alice, because that alone is so time-consuming and stressful and difficult to do. 7am-9pm, with probably a 30 minute slot when they're both either asleep or happy enough to be left alone for a little bit. We eat dinner, it's 10pm, tidy up a bit, and it's 11pm. Go to bed and fall asleep, it's 12am - with Maggie waking around 2am to be fed, back in bed for 4am. We haven't had a stretch of unbroken sleep longer than three hours in weeks and weeks, months. And it's really starting to take its toll - I didn't realise how much until Maggie slept through one night and I got six hours straight. And I felt so much better for it - more positive, less vague and teary, more capable, just more human.

Because there's so much that needs to be done that isn't getting done - writing/calling/emailling people, sorting appointments/sleep systems/equipment, sorting going back to work, sorting possible childcare, sorting the house, shopping etc etc etc. So much that I just feel paralysed and get nothing sorted, not even the stupidest, slightest thing like having bloody food in the house. What to have for dinner? I can't think what. I really can't - I just draw a blank. Paul's so much better with this than me, even though he's got even more on his plate - it must be really fucking annoying to have me flake out like this all the time. I'm really sorry to everyone that's waiting to hear from me - I've just been overwhelmed by it all.

It's been a really hard month, six weeks. Maggie's been ill nearly constantly - starting with vomiting old blood that could have been gastroenteritis or esophagitis from her reflux. She had that twice and as soon as it passed she got a cough - sounds minor enough except that for Maggie a cough triggers more vomiting, which we didn't really think possible. Then she got a stomach bug - more vomiting and a week and a half of diarrhea that required rehydration treatment because it was combined with the vomiting. I've spent hours and hours at the hospital with her, each time leaving with not much more than a hopeful shrug that things would get better.

She's been losing weight when we so desperately need her to gain it - it makes me feel so helpless and frightened to see half of her food pour out of her mouth, and nose, knowing that it's stopping her from gaining weight, stopping her from getting the nutrition her brain urgently needs. And, unsurprisingly, she's been so unhappy, constantly tired and upset - which puts a stop to her physiotherapy, speech therapy etc. It's very wearing, an unhappy Maggie - it's also been really hot, which doesn't help. She was sleeping in just her nappy and I found it really upsetting to see her like this - she's so thin and stretched, with thin and stretched arms and legs. And it was rotten, rotten luck that she was at her worst this past week when Louie and Isaac were down. Luckily Alice was there to save the day as much as she could and salvage their opinion of their little sisters - completely smitten by Isaac and Louie and smiles all round.

But maybe, maybe, Maggie's finally on the mend. She slept through until 5am a few nights back, which we thought was an indicator of her getting ill again because that's the only reason she's slept that long before. But then she did it again - and woke up really happy and smiley. And she wasn't sick at all - it just stopped. Of course, a big part of me worries that this means there's something else going wrong that we just don't know about yet - how can it just stop? After so long of being so sick with so many feeds? She slept until 7.30am yesterday morning, and again today. One of our carers said that it could be just complete exhaustion from being so ill for so long...I hope it's more than that. I hope Maggie's finally turning a corner, getting on top of all the dreadful things her little body keeps getting thrown at it. She deserves a bit of peace and happiness, my poor little girl.

* Photographs of our week with Louie and Isaac. You'll note that in these photos Alice is wearing the greatest T-shirts in the world. The fact that they make her look like a boy is beside the point. They're the greatest T-shirts in the world because they have Spider-Man on them. You should have a T-shirt as good...

And isn't it lovely to finally have a post from Shannon? Give her a big hurrah and hugs!