Saturday, April 20, 2013

Peer Support -Through Insanity and Beyond.

I've been thinking a bit lately about the benefit of peer support. You know,  the importance of sharing experiences with others who have been through NICU too.

When Smidge was tiny and ill, we were moved around a lot from hospital to hospital. It was hard forging friendships under those circumstances  and being so far from home.

It's also hard to predict how much other families want to talk to you in this situation. I always worried that fellow Mum's wouldn't want to make friends, that they were busy dealing with their own baby and their own stuff that they wouldn't want to talk to me.

Thanks to the fabulous matron at our local unit, I made some great new friends after I left and if it wasn't for these friends then goodness knows where I'd be today.

These friends, who'd shared similar experiences to me, were the bridge between hospital and home and thinking back, they were probably the difference between sanity and insanity.

See, when I first came home, to the outside world I was just an ordinary Mum.

I took day trips to the park. I cooed over my small baby and watched her gentle first smiles..

But as heart melting as those moments were, Inside I think I felt different to other new Mum's.
I felt that 'who' I was, (or who I had become,) was not the person that they saw in front of them.
I felt I'd changed, to the point that even I wasn't sure who I was now because only weeks before everything was so different.

The people in the park didn't know about n.g tubes and sats monitors.
I guess there was something about Smidge's home coming that made me feel that something was missing, even though it was perhaps the time I should have felt the most complete of all.

And it was almost as though, everything that happened, I was one step behind in how I was experiencing things.

Where there was shock there was denial, 

Where relief should have been, there was shock!

and then...  relief finally came there was fear... so much fear.
Fortunately, with good peer support and counselling  I came to realise that all these feelings were normal. Perhaps not normal for everyone, but normal for us Premmy Mum's.

So in Today's post I want to say a big THANK YOU to all my Premmy Mum friends for being there for me, for listening to my worries, for letting me know that I was never alone.

You have made such a  difference to our family!

Friday, April 12, 2013

The Bayleys 111 Neurodevelopmental Assessment

Have you ever heard of the Bayleys 111 Neuro developmental assessment? It's an assessment of ex-premature babies to be carried out at the age of two years corrected. It's a national initiative and all babies born before 31 weeks or those weighing less than a kilogram at birth are invited. Babies who received cooling treatment are also assessed.

When I first received the appointment through, I was a little taken a back. Amazingly, Smidge has  not needed any physio since she was in NICU so the request to have her seen by the physiotherapist came as a bit of a surprise.

Fortunately our appointment was at 9.30 in the morning, a great time of day for Smidge, so she was on top form.

Walking in to the physio's office, Smidge proudly took a seat in the little red chair and placed her hands on the table, ready to 'learn.' She looked so cute, like a mini student!

The physio had so many games for her, from puzzles to hide and seek games, stories and imaginary play. Smidge had the best time and couldn't believe her luck that this lady 'played' for over an hour and a half.

One thing I will say though about this assessment is that it's extremely comprehensive. Where by Smidge has quite a lengthy concentration span, many toddlers don't and I wouldn't be surprised if this skewed the results. By the end of the 'test' Smidge was starting to tire and was not performing as well as she was at the beginning.

Ideally, I think this test should be carried out over four day's, perhaps in twenty minute sessions for optimal performance.

I think she did really well though and demonstrated excellent cognitive skills (my interpretation, not the physio's) but we will not get the full results until our next consultant appointment in may.

One area that Smidge literally does fall down in, is her gross motor skills. Although she's not terribly behind and did walk at 14 months corrected, she still doesn't jump,struggles a bit with balance and, if you let her, she'd rather crawl up the stairs than walk.

At two corrected most toddlers have mastered these skills and carry them out with ease but Smidge is something of a fumbley mess at times, preferring to stick her arms in the air and shout 'up!' rather than climb the stairs herself.

We are working on her coordination and balance by taking her to gymnastics classes and one day I know she will run around the hall like a pro, rather than toterring like a duck or being dragged by her anxious and slightly over enthusiastic Mother.

The fact that we have come this far makes me feel very proud. Not proud because 'thankfully she's normal' but proud because of the journey she has walked, the journey we have walked.

My little girl may never be a gymnast, a ballet dancer or mountaineer but she is adorable, pretty and clever and a true survivor.

Thursday, April 11, 2013

That will be thirty Euro's please.

I cant believe it but I DID IT! I actually went abroad with Smidge!

Not much of an achievement for a thirty something year old, I hear you say. However, for me, the act of stepping aboard a non-medically supported ferry boat for a ten hour crossing, was one of great bravery and achievement.I have never been more than twenty minutes away from a well equipped hospital. Never! Not since the day she was born.

Journeys are always planned with great precision.....a comprehensive risk assessment beforehand, accounting for all eventualities.


What are the chances of encountering germ infected small children with liberally minded parents?

Is the nearby 'hospital' really a hospital?, or is it a half- hat minor injury unit with no real Doctors?

When was Smidge last accidentally exposed to a potentially germ ridden person? Has the incubation period passed or could she develop symptoms soon?

So with thoughts like this racing through my mind, you can imagine how tempting it was to avoid all germ sharing social encounters for at least a week prior to travel  but the new, positive, wellness- seeking me stamped its foot down and demanded a more liberal attitude, quashing all last minute hesitations and deliberations about a possible last minute G.P check

'No, you do not need a quick trip to the g.p to have her chest listened to!' laughed my liberal voice.

'It's a teeny, tiny cough, they'll laugh you out of the surgery' 

So I jumped aboard the ferry and thought no more about it... until I woke up in france with a wheezy yet jovial Smidge snuggled up beside me coughing for Great Britain.

So off we went to the french G.P which frankly, was an experience.

Entering his surgery was like going back in time. He was the only doctor there, it was his residence.

Nervously I took a seat in the small waiting room, practically banging knees with the other patients.

Eventually a man in his sixties called us in. Closing the door he took a seat behind his giant  antique desk that was over run with paper files, no computers here.

At the end of the room there was a wall sized glass cupboard, full of drugs. Well that certainly cuts out the middle man. I thought.

Smidge clung to her Father, slightly overwhelmed by the lack of white fixtures and the strange french doctor in his musky old office, who made no attempt to engage her.

I handed him a typed version of her medical history in brief. He snarled over it, choosing to make no comment.

ODH tried to explain politely that we are very-over- precautious-parents with blatent post NICU issues, presumably  trying to lighten the mood. I shrank down in to the leather chair, preparing myself for the humiliation of a crystal clear chest.

Smidge looked up, unimpressed with the Doctors request to examine her with her clothes off. At this point ODH thought it might work well to distract her with the phone but the Doctor didn't approve and promptly removed it from her hands, causing her to cry out in an agonosing pain at the technology withdrawal. The french man scowled in disgust.

After a thorough yet some what traumatic examination, he informed us that Smidge required some treatment 'and maybe later x-ray' because 'The infection runs deep'

With that, he wrote us a prescription for some steroids, some anti -biotics and some anti- bacterial nasal spray, all the while holding his pen in a really weird fashion whilst simultaneously snarling over his not pad.

So we were about to exit the office, thanking him and expecting to complete a form on reception, when we hear this 'Excuse me Monsieur' as he beckons us back.

'In France it is normal sat you pay sa G.P'

'Oh really?' ODH stammers embarrassingly. As we fish around in our pockets nervously.

'Sat will be 30 Euro's please' he states, frankly.Which we just about produced, albeit indiscreetly.

So much for our reciprocal arrangement with the french, I thought, trying hard to imagine a British G.P asking for cash and we skirted out of the office.

The rest of the week was relaxed as I kept a careful eye on Smidge but she thankfully remained in great cheer, even learning a few french words and using them on cue.

All in all, we had a great time and after arriving home, I feel somewhat liberated that I managed to journey so far from my trusty local hospital and Smidge's lovely consultant who encouraged us to go.

As I stepped aboard the boat his words were a gentle reminder in my ears...

 'It's highly unlikely she will fit on the boat' he'd said  'but I can give the anti seizure drugs if you want'

But I didn't want.

I wanted to go abroad like a normal family and deal with a situation if and when it arose..

and I think we achieved that.