Sunday, January 27, 2013

Coping With Change

One of the things I was forever being told off about in hospital was not getting with the program.
Whilst professionals were always very keen to push things forward, I dragged my feet behind, wanting to slow things right down so I could pause and enjoy my Smidge if only for a minute.

'Do you really think it's a good idea to start up her feeds again? 'I'd probe at the morning ward round.

'I mean, if we start her feeds again so soon after the last infection, couldn't it set her back with her breathing? 

'Well.... it's not really a case of IF we start the feeds'  the good Doctor would steer, 'but more a case of when...'

hmmmph.

Change, I suppose, is never easy and when it puts your newborn's life at risk, it's especially hard to embrace. Yet still, coping with change is such a vital part of being a parent, not just in the intensive care setting but in preparing for home and in coping with life in the community.

I think the challenges that Smidge and I have faced have helped to shape us as people, as much as anyone's experiences help shape them I suppose. Still, what I want to make sure of now is that Smidge's extreme prematurity and subsequent health issues do not continue to negatively affect us, that we continue to grow and develop outside of the context of her prematurity.

As I write that paragraph, I know how incredibly lucky I am to have this choice, that there are people, friends who have lost their babies, who will never have the choices that I have today,and I owe it to them and to my Smidge to make the very best of the chance we've been given.

In the spirit of making this happen, I've initiated a few changes.

Firstly, I've stopped uploading blog posts to my facebook news feed.Well actually I never did upload posts to my facebook news feed but a very annoying program did it automatically. This was incredibly frustrating at times (especially when I'd just added new friends!! ) and I'd  often find myself rushing to delete posts before they popped up.
I can't quite bring myself to give up blogging completely but lets just say that from now on it will be my guilty pleasure. I want people to start seeing Smidge for the beautiful growing girl that she is, not just as a survivor of prematurity.

Secondly, I've decided  not raise the matter of Smidge's prematurity at pre-school, when she starts in just under a year. ODH and I talked this over with her consultant back in early December and we are going to to act on his advice, not to make an issue out of her prematurity.
If Smidge is struggling in any aspect of school, be it social or academic then of course we would review this. However we are extremely lucky to be in the situation where we can give her the benefit of the doubt and let her go out there and show them what she's capable of. Yay! Go Smidge!

Thirdly, We've booked a short break away in France. It's a real leap of faith but I think we need a little time away to relax, to be together, to be the family we were always meant to be. I know I need to let go of the dependence on the hospital being down the road. I need to work harder at leaving the past behind and start fostering positive thoughts and ideas, such as the possibility of good health and well being. I think only then am I going to be the change I want to see!!






Tuesday, January 22, 2013

The one where I come out about the PTSD

So I've been meaning to do one of those round up posts,you know, the type that wraps up 2012 and sets some goals for 2013, I guess I put it off until the last minute...just in case the world did end but what do you know? it's 2013 and we are all still here.

It's been kind of odd looking back through last years posts and reflecting on the events that happened. The year started out quite well I think, Smidge had just turned one and I was on a high. I'd managed to keep my preemie alive at home for eight whole months and what's more she was doing great developmentally, I was so elated.

However come the spring things came crashing down around me as we faced more hospital admissions, some of which were perfectly ugly and utterly frightening.

In a bid to cope with it all I exercised more, drank less and blogged often.

I readily engaged in counselling and my counsellor was a lovely, kind woman.She was gentle and ever so understanding, taking things at my pace.
However, with Smidge's health issues all the time bringing new challenges, I think I found it hard to feel the full emotional impact of the events we talked about.

Literally, when it came to discussing feelings I'd draw a blank.

Events, yes.

Feelings, no.

Yes readers,I could literally  talk about NICU till I was blue in the face (no pun intended) but it evoked very little in terms of emotion. I found it very hard to be open to experiencing my own feelings..

How can you heal when you are unfeeling?

How can you make yourself more vulnerable when deep down inside you still don't feel safe?

Anyway, when the counselling ended and the hospital readmissions lessened I can recall things coming to a bit of a head one night. I don't know quite what prompted it, one minute I was seemingly fine (ish) the next I was bawling my eyes out telling One day Hubby over and over that I did't want Smidge to die. That I'd been scared, very, very scared and still was.

I think something must of kind of shifted that day as ODH soothed me and confessed he still has nightmares too and reassured me everything was okay.

Since then, I found my general state was all together more emotional and not always in a good, clear way.

I was indeed a mother venting.

So towards the end of last year I decided I couldn't go on as I have been, that I needed more help.

So I re referred myself for a comprehensive assessment, the conclusion of which was that I have Post Traumatic Stress Disorder. Apparently up to 70% of parents with sick or premature babies suffer with it.

I can't say this came as much of a shock, as truly I didn't expect anything else.However taking that step and recognising that I was being affected by a trauma in my day to day living, is hopefully one step closer to healing.

I'm not entirely sure of all the details of my treatment plan as yet but I'm already looking forward to a brighter 2013, I'm not sure how I'm going to get there but I just know I will x


Sunday, January 20, 2013

Doors.



So...

Doors. plural of door (Noun)

    1. "A hinged, sliding, or revolving barrier at the entrance to a building, room, or vehicle, or in the framework of a cupboard".

      Not too much of a problem once one reaches a suitable height.

      Unless they are locked that is.... 

      Unless they are locked and you really need to get through them, to get to the other side because there's something important there, something you need.. 
like your baby for example!

You guessed it, I'm talking about access to NICU. 

Now don't get me wrong I know security is important. Goodness know's when you go home at night you need to know that your baby is being kept safe. However on the flip side of that, if I were to create a list of the most needed things you could want in this highly anxious situation, locked doors is SO not featuring, it's totally off the page.

A friend and I were discussing it the other day and were commenting that despite the HUGE emphasis and metaphorical magnifying glass that hovers over the Mother/child bond, the fact that a Mother is left stood on the wrong side of a locked door for up to ten minutes waiting for someone to open it, is not considered a shaping factor at all.

Well let me tell you readers, it's already a pretty sorry state of affairs when you can do naff all for your baby.This factor alone makes you feel about as handy as a chocolate tea pot but that urge to go to the unit, to look in on your babies sweet little face, it still exists, in part and when the urge takes you, it is not a might, a could or a should, It's a must, A maternal drive that must be satisfied before the fear and angst overcome you again.


Interestingly enough, I discovered that the thought process that I'm about to describe (occuring in the five/minute wait at doors) is not one unique to me but seemingly universal to all NICU Mum's, bringing a most unwelcome spin on the daily NICU visit. Typically, it goes like this..

>>>>Rings buzzer.>>>>

No answer.

Thought 1:  'Why are they taking so long?' ....They are probably just busy!

Thought 2: Who are they busy with? Is it my baby?

>>>>Rings buzzer again >>>>

Thought 3: They know I am coming, They know I am here.They are avoiding letting me in because she's unstable.

Cue: Panic.

Cue Wants to ring buzzer again but doesn't want to be rude.

Cue: Really wants to see baby right now and really can't seem to gain entry...

Temporary reinforcement of feelings of powerlessness and maternal failure

>>>>>Rings buzzer again>>>>>> (longer, louder, more angry sounding bzzzzzzzzzzzzzzzz)

The great intercom speaks finally.

>>> Enter's NICU Mummy >>>



and all is forgiven.








Sunday, January 13, 2013

Timid.

Anyone who's met Smidge will know that she's a quiet girl, sweet natured and shy.
As her personality has emerged I have been pleasantly surprised by her placidity, I guess I just assumed I would always produce fairly loud children!

So when I tell you Smidge literally wouldn't say boo too a goose, I'm really not exaggerating. Three weeks it took her  to build up the courage to open the flap on a flap book, three weeks!

(..although granted, on the other side of the flap lurked a barking sound effect that terrified and delighted her in equal proportions.)

Several times a day she'd wonder over, shunting the hardback board book in to my knee, then, manoeuvring herself in to a good viewing position, she'd point towards the flap.

'Shall we lift the flap? I'd say, gently encouraging her.

However, Smidge would tense up,her feet would freeze to the floor as she'd glare at me with an intent look on her face, silently ordering me to do it for her.

As the weeks went by, the battery slowly wore down and bit by bit she built up the confidence to open the flaps by herself but not before she'd had me read it a million times, obviously.

Anyway,my point is, all this shyness has taught Smidge a few things about people because whilst she sits shyly on the side lines, she's been figuring out what's important in life and then, literally, she goes in for the kill.

It started out with other children's 'special toys'. You know their bed time softies and the like.

Then she progressed to wanting to eat food from other peoples plates even when her very own was right there in front of her!

and now and possibly the sneakiest thing to date..

Mummy Thieving.

That's right.. She now loves nothing more than to to be snuggled in to the lap of someone else's nearest and dearest and of course because she's such a sweetie pie and butter wouldn't melt, they welcome her with open arms.

Much to the dismay of her friends.   :-/



Whilst the Cats Away...












Monday, January 7, 2013

Stronger

Well readers,I can hardly believe it but Smidge has managed to stay out of hospital for over six  months.
I know..I know.... don't tempt fate but I can't help it, I'm proud.
Prouder than proud!

As the winter months drew in following a turbulent spring, I told myself that I'd be happy with say, just three admissions to hospital.   

Well how many readmissions have we had? 

None I tell you, None! and I want it documented, whilst it's a reality.

I attribute this fully awesome turn around to my strict socialization rules, good hand hygiene and... well, the fact little Smidge is not such a little Smidge any more...

I have been very  lucky to have such considerate people around me to help me through so far. Friends who have reserved judgement on my strictness.

I am truly thankful for having these people in my life, for meeting up with me for play dates, for having coffee and chats, for cancelling our arrangements if their children have colds or seem a bit off colour. Basically for respecting my decision to minimise 'immune building' for a while. 

Of course I haven't been able to protect her fully. Still she has had four colds and two sickness bugs ( Yes,I count them! ) but she's coped with them well and hasn't had seizures or needed oxygen.*Hooray*

So now I feel I am being lulled  reaching a point  where she is getting stronger, meaning I can be all together a little more liberal about the stuff we do together. for example, Going to toddler groups.

Maybe.