Friday, 24 February 2012

The Biggest Bath in the World

Mummy said she was taking me somewhere new today and she wouldn't tell me where it was but she was sure I would like it.  I couldn't figure out what she was talking about because the next thing I knew, we were at Asda and I've been there loads of times before.  I was a little bit bored so I was whining to myself and throwing my toys on the floor but Mummy was determinedly cheerful and pulling all sorts of strange things off the shelf.  First there was something that looked like new nappies, then a small blue box with some yellow squishy rubbery things in it, then finally some very orange Tigger striped shorts.  It was all very mysterious and I was getting frustrated because I wanted to knoooow where this neeeeew place was.  

But instead of going to the new place, we just went home and Mummy tried to give me my lunch.  Well.  If there's one thing I really don't like, it's a mystery and I wasn't about to eat my lunch until Mummy. told. me. what. was. going. on.  The problem is that Mummy has my stubbornness and even though I was quite determined to work out the mystery, Mummy was even more determined not to tell me.  She was smiling though and her eyes were all excited so I knew it had to be good.  Eventually I ate my lunch.  And eventually Mummy decided I had digested enough.  And eventually Mummy was putting my shoes and coat on. And eventually we were going in the car.  Was I at last going to find out what the mystery was?

After just a few minutes, we pulled up outside a new place.  It was a white building surrounded by very green fields.  Mummy took me out of the car, put me in my sling and we went inside.  But OH inside it SMELLED horrible!  The smell stung my nose and I shook my head and rubbed my nose to try and make it go away!  I still had no idea where we were, but Mummy spoke to a nice looking lady, gave her some money and then we went into somewhere called a Ch-ang-ing R-oo-m.  Mummy started to take all of my clothes off which was very strange indeed and then she put the funny nappy onto me and even as I wriggled and snapped the elastic on it, she pulled the orange striped shorts over my nappy.  Then she pulled these odd looking rubbery things onto my arms and leaned in close to blow on them.  I was amazed when they went all poufy and clung to my arms like big donuts.  I had no idea what they were for and I tried to bite them.  I snapped and I clacked my teeth but Mummy kept pulling me off them.

Then the strangest thing of all happened - Mummy started to take HER clothes off!!  Well.  I was *scandalized* - as I'm sure you can appreciate!  Mummies don't take off their clothes in public!  What on earth was she doing?!  Fortunately, she put something else on although it looked very odd and I'd never seen her wear it before.  It was black and purple and all stretchy and it left both her arms and her legs bare - it was very weird indeed.  I had to get up close to examine it and of course I tried to bite it so I could work out what it was but Mummy took my teeth out of her clothes (spoilsport).  She was saying something about me putting holes in it but I couldn't really see why that would be a problem considering it already seemed to have a few holes in it anyway - I mean where were the trousers?  Or the sleeves?  Surely just one more hole wouldn't  Oh ok Mummy, if you say so.

Anyway, once Mummy had this strange costume on, we went into another room and she stuck us both under a shower of warm water.  Well now, that was very strange indeed and while I have no objection to water, I really couldn't work out what was going on.  The funny thing is that there were other people all standing in a queue waiting and they all had similar funny stretchy clothes on like Mummy did.  I lay in Mummy's arms and chewed on her shoulder while we waited and occasionally flashed one of my charming smiles at the other people who were waiting to go in....somewhere.  This mystery was getting bigger by the minute.

It seemed to take forever but just as I was starting to lose my patience and considering having a bit of a shout, we started to move forward.  We walked through a set of double doors and then I caught a glimpse of something so utterly amazing that my mouth fell open in shock!  It was the BIGGEST bath I had EVER seen!  I mean this bath was so big, it took up an entire ROOM!  And it was so deep that there were even stairs to go down into it!  Never in my wildest dreams had I imagined that SUCH a big bath existed anywhere in the whole entire world!  And to make matters even stranger, there were other people in my bath!  I've never shared a bath with anyone other than Mummy before so I wasn't sure what I thought about having a bath with lots of other people, but then I decided that so long as they stayed at one end and I stayed at the other one, then it might be ok.

Mummy was carefully holding me in one arm, and a strange puffy looking chair in the other arm as we walked down the stairs into this bath.  I jumped when my legs reached the water - it was COLD!  Baths are normally nice and warm but this one wasn't - what was going on?  Sharing my bath with other people?  Wearing clothes in the bath?  And now finding out that this bath was cold?  Well.  I can tell you that I didn't like it one little bit.  I was just finding my voice to have a nice loud shout when Mummy did something that stopped me in my tracks.  She was holding me up high and fitting my legs into the strange puffy chair, then she sat me down inside it (it was really quite comfortable) and suddenly I was floating in my bath!  I looked down and leaned over the side of my chair, trying to work out why my feet weren't touching the bottom but Mummy laughed and pulled me back upright again.  Then she started to push me backwards in my chair!  

Well, this was really very very odd and I wasn't sure if I liked it thank you very much.  I kept my eyes carefully on Mummy to see what she would do next but she was holding firmly onto my chair so I realized I must be safe enough.  I cautiously looked around and then I started to kick a little bit in the water.  Hmmm....this has possibilities.  After a few minutes, I got brave enough to start smacking the water with my hands.  It was all splashy!  After a little while, Mummy even took me out of my chair and held me in the water, a man wearing a bright orange stretchy suit threw me some toys and Mummy let me chase them.  There was a blue ducky, and a watering can and a brightly coloured ball!  I liked the ball best of all because it kept rolling out of my reach so I made sure Mummy kept going after it.  I started to shout and splash and kick and smile and lots of people were smiling at me.  This big bath was so much FUN!

The one thing that didn't work quite so well was that I kept trying to sit up in the water.  I couldn't figure out why this wasn't working because it always works in the bath at home.  I would try to sit up and find that my little legs were pushing against water and my little chest and shoulders were working very hard but I couldn't make myself sit up.   At one point, I was determinedly reaching for my ball when I reached just a little bit too far and my face went down into the water  I took a great big gulp of it and then starting coughing and spluttering - UGH!  This water tastes TERRIBLE!  Mummy what on earth have they put into it?  My eyes were red and my nose was streaming and I was coughing to try to get the taste out of my mouth.  Ick!  Fortunately the taste went away eventually but I made certain I wasn't going to do that again!  Mummy laughed and laid me on my back with her arms underneath and around me.  That one was scary because I was sure she was going to drop me but fortunately when she saw I was scared, she scooped me straight up into her arms for a nice cuddle, tight against her chest, and that helped me feel safe again. 

I went back to playing with my blue duck and my brightly coloured ball and other people started chatting to Mummy, asking how old I was and telling her how cute I looked (well I could have told her that!)  She told them I was eleven months old and they smiled and said how much I was enjoying myself.  And I was.  I still didn't really know why the bath was quite as big as it was but I definitely knew I liked it.  The only problem is that I was just in the middle of pouring the watering can on my head with one hand while whacking Mummy with my blue duck when she looked at the clock and said it was time to go home.

Muuuuummmmmyyyyy!!!!!!!!!!!!!!!!!!!  Nnnnnnoooooooooooooooo!!!!!!!!!!!!!!!!!!!!  I don't WANT to get out of the big bath!  Muuuuummmmmmyyyyyyy!!!!!!!

Needless to say it was a noisy few minutes getting changed back into our real clothes.  There was something about the changing room that made my shouting sound quite a lot louder than it normally does - I wonder what that is?  After a while, Mummy was digging her fingers into her ears and looking nearly as grumpy as me.

Eventually, we got home and then Mummy did something very odd.  She plunked me right into my own bath!  I couldn't figure out why she was doing that because I'd just had a long bath and even though this one was warm and had lots of bubbles in it, I really didn't want to be there anymore.  It was well past my usual naptime by now and I was very very yaaawwwnnnn tired.  Fortunately, Mummy made this bath nice and quick and then she put me into some warm and comfortable pj's and now I'm lying in her bed all comfy and snuggly.  I don't think it will be long before I......ssssnnnooooorrrreeeee.........

Friday, 17 February 2012

Treasuring These Things

Asleep at last...
I think as a mother some of the most precious moments inevitably follow the ones that you'd really prefer to edit out of the day if you could.  Adam has been very good all day but having finished his dinner, played cheerfully in his bath and having finished his bottle, he became utterly hysterical.  Clearly he was tired but instead of being willing to be rocked and cuddled as he normally does, all he wanted to do was to sit up and scream hysterically, waving his arms around and successfully hitting me in the face.  After around ten minutes of this, I'd had enough so I took him up to bed and put him into his cot.  A little kiss and cuddle and I was relieved that he seemed content to play quietly but the moment I'd gotten to the bottom of the stairs, the screaming started again.

"MOTHER I do NOT want to sit in my cot alone.  Get BACK here AT ONCE!" (This would be the approximate translation of course)

So I went back upstairs and put Adam into our bed instead, lay beside him and cuddled him for a while.  It only took a few moments for him to become sleepy and start to doze.  Then he rolled over on his side, cuddled up against me, gently touched my face and put his arm as far around me as he could reach and fell asleep.  It was one of those moments that reminded me of part of the Christmas story, "Mary treasured all these things and pondered them in her heart."  There's just something about those simple moments that I just want to treasure, they can't be captured on film or CD but I hope I remember them anyway.

Earlier on today was another important moment for me.  Since Adam was so ill and has made such an amazing recovery, I've wanted to do anything I can to prevent another family having to go through such a horrible experience.  So for that reason, I've stayed in touch with the Group B Strep Support Charity and their amazing founder, Jane Plumb.  Many years ago, one of her children died after a GBS infection and she founded the charity to offer support to other affected families and to try to get routine GBS testing introduced in the UK.  Just last week, she visited Buckingham Palace to receive a very well deserved MBE from Prince Charles for her work.  

Jane and GBSS continue making contacts with the media to get the story of GBS published as often as possible and many families who have experienced the trauma of this horrible infection courageously share their stories as case studies.  A number of times, I've read with tears in my eyes of the families whose children have died or have been permanently and severely disabled after perfectly healthy pregnancies and births, all of which could be prevented by a simple swab test to detect whether pregnant women are carriers of the GBS bacteria.  (If you want to know more about the GBSS charity, you can visit their website here:  Group B Strep Support)

Today, at Jane's request, I was a guest on BBC Radio 4 for Women's Hour as they were discussing GBS and why it's not part of routine anti-natal testing in this country.  I agreed to briefly share Adam's story as Professor Philip Steer shared the medical information on GBS.  It's always hard to relive the trauma we went through and difficult to remember those dark days now that Adam is so healthy, but at the same time I also want to continue remembering and being reminded of just what a miracle Adam is and how fortunate and blessed we are to have him with us and so full of life.  If you want to hear the interview, this is the link to the Radio 4 program on BBC iPlayer, I'm not sure how long it will be available to listen to but my section is at 33:12 of the 45 minute program:

Of course I had notes on things I wanted to say and of course I also forgot most of them while I was being interviewed but in general, I think the interview went well.  There was however something really important that I wanted to say and didn't find a way to while I was on air.  It's important enough to me that for the record, I want to mention it here.

It's true that I am very sad the UK doesn't currently offer routine GBS testing as part of anti-natal care and it's also true that I believe with all my heart this testing should be offered.  However, even if the policy isn't changed, at the very least I believe the risks of GBS should be discussed with women and it should be made clear that private tests are available and affordable.  This would at least empower women to be able to make their own choices rather than leaving them blissfully unaware until, if they are unfortunate enough to be carriers and have susceptible babies, their children are fighting for their lives in intensive care.  For that reason, it is an ongoing grief for me that I was not told about GBS and that I had never heard of it until Adam's little body was shutting down as it was overwhelmed by this horrible infection.

Despite all of this, the fact remains that the care we - and that means Adam along with Chris and I as parents - were given by Shrewsbury Hospital was absolutely amazing and we cannot fault it.  Nearly eleven months later, I remain in awe of the doctors and nurses who work in neonatal at the very edges of life and death.  Even when they were sure Adam was going to die, they still poured everything into his care and determinedly fought for his life.  Now that Adam is well again, we continue to receive amazing support from the healthcare team that surrounds us as we cope with the after-effects of this infection and the disabilities Adam has.  At various times Adam has appointments at four different hospitals under five different Consultants.  We also have bi-weekly home visits from Adam's amazing Teacher for the Deaf from the local Sensory Inclusion Team.  It is his job to work out not just what Adam is capable of hearing but ultimately what he does with sound or what he will understand based on how his brain translates what he hears and to match this with his development in other areas.

All of that to say that even though it grieves me that I wasn't offered routine testing and therefore the fact that I am a GBS carrier was not picked up before Adam was born; I am still incredibly grateful to the NHS and the dedicated health professionals who are part of it, not only for saving Adam's life but for continuing to support us as we work out how to help Adam as he grows and develops.  So to all of those who have been and continue to be involved in Adam's care, thank you.  We are so grateful to you.

Sunday, 12 February 2012

I've Learned A New Trick!

Guess what everyone?  I've learned yet another new trick today!

For a long time Mummy has been giving me her thumbs to hold and then when I haul on them, I manage to stand up.  But today, I was sitting on the floor between her knees and I was suddenly struck by inspiration! I leaned forward, grabbed lumps of her shirt and using them like a rock climbing wall, I stood up all by myself!

I was so proud of myself that I SHOUTED very loudly and giggled quite a lot.  I'm just so smart, I amaze myself.  :-)

Then I announced that I was ready for my dinner.  Right now of course.  I'm never hungry in five minutes time.  It's always right now.

Wednesday, 8 February 2012

The Staff Need a Stern Talking To!

I discovered a new trick today!  I was sitting with Mummy during her morning chapel service at college and I was really doing my best to get her attention.  I was bouncing on her lap and when she put me on the floor, I was rolling around on the rug, shouting and tugging at her trousers to make sure I was (as usual) the sole focus of her attention.  She was doing an ok job of noticing me but frustratingly, she wanted to pay attention to her service as well.

Of course this is not acceptable.  I do not share.

Finally, in a last ditch effort, I threw my Dumbles on the floor well out of reach and then shouted at it expectantly, waiting for Mummy to pick it up for me.  To my shock and horror, she simply put me down on the floor pointing in the general direction of Dumbles and left me there!  I couldn't believe it!  Clearly the staff need a stern talking too.

But in the meantime, life without Dumbles is no life at all so I tried to work out how I could reach it myself. I wiggled my bum in the air until my whole body was in a V-shape but that didn't work.  I tried stretching as far as I possibly could but that didn't work either.  I tried barrel rolling across the carpet but I only succeeded in going diagonally away from Dumbles.  Finally, I realised that if I pulled my knees up under me (something I've been doing for a while) but combined that with a stretch that suddenly, I was off!  The carpet was being eaten up under my speeding little knees and Dumbles was in my hand!

I have no idea why Mummy was smiling so much, after all, I worked it out by myself and I was forced to fetch Dumbles without her help.  What do you mean 'crawling' Mummy?  All I know is that I did it by my own self and that is that.