Old Boots

Dearest readers and treasured friends,

Today we received the fabulous news that my Smidge, my Roo, (my tiny little Roo...) has hit a major and final milestone in the preemie world.

Yes, today friends, some two and half years after she made her entrance in to this world with uber-keenness (and staying power that would put a halted train to shame,) Smidge has finally been discharged from consultant led care.

Unsurprisingly, I feel a little emotional posting today. I guess there are tears of relief mixed in with a little bit of sadness with a fat dose of  luckiness piled on the top. Today is like having a  knicker-blocker-glory, the one without the bubble gum in the bottom.

Happy, cautious and slightly vulnerable ..that's how I feel I think and I wonder just how I'll get along with out the support of the lovely doctor who has helped carry us through the last two and half years.

It's a funny relationship inst it?  The one between a doctor and his patient. I like to think of it as a bit like wearing old boots.

You can go on many adventures in a pair of boots, they'll carry you through stormy weather, they'll take you over rough terrain and even though you look down at them and you think...  "y'know, I really could do with something else now, something more in keeping with my new look...." These old boots are comfy, they kind of mould around your feet and they are reliable, sturdy and still have some life left in them..So you loathe to give them up... and yet you loathe to keep them on.

So yes, there will always be a respect there for the doctor who's been so kind to us, for the one whose been there for us along the way, the one who watched me rant, cry, complain, stamp my feet and wave at him manically in the corridor..

and to think he watched all of that and barely raised an eyebrow.

He was the kindest pair of old boots I ever did meet!

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!

Expressing, the pro's and con's - My take.

Check out these babies....

Lactation Cookies to boost Milk supply.

Mmmm. Scrummy. I made them on behalf of our local support group, for Mum's on the Neonatal Unit.

It doesn't feel like that long a go that it was me sat in front of the old milking machine, desperate to squeeze a few more drops and as advanced as the modern devices are, coming up with the goods can be a painful struggle at times.

When I first found out that my body was capable of producing milk for my 25 week gestation baby, I was genuinely amazed! I have to say though, my excitement soon dwindled when I found out precisely how this was going to happen!

Warning! This beast bites back!

Maintaining a milk supply with a baby in NICU is extremely hard work and there are number of factors that seem to make it even more of a mare. Based on my  four month experience expressing, I bring you  my take on what makes it even more hideous.

Stress. 

Quite obviously stress is  is a major yet inevitable factor that influences milk supply, not just the emotional side of things but the physical  too.

Personally, I will never forget the night I first met the great green mean machine. It was wheeled in to my room in the dark of night,I  was still trying to shake off a general aesthetic at the time, not to mention a truck load of drugs and the effects from major surgery.Needless to say, messing about with plastic fixtures at that hour of the day left me none too impressed.

Practicalities 

The actual practicalities of regular expressing leave a lot to be desired. Sustaining adequate milk supply involves living your life  as though you have a newborn baby in tow, (ideally expressing every two to three hours.) Well that would be fine if you were a standard post natal  Mum but for Neonatal Mum's it's a very different story, as they are existing in two different environments, at home and at the hospital.

It's not unusual for hospitals to be over an hours drive from home and to top it all, if you've had a c-section then you can't drive for six weeks. Brilliant.

Calories 

Then there's the eating thing, to be able to make milk you have to eat...heaps. 

No calories in, no calories out, that's the way it works, so you really have to look after yourself when expressing but the reality is, with all the travelling, stress and exhaustion, the very last thing most Mum's want to to do at the end of a long day is cook themselves a wholesome meal.

What is in fact more common, is Mum's not eating properly because they are racing to the unit each day to catch the morning ward round or not wanting to leave the unit to get lunch because their baby is  unstable. 

Hydration

Hospitals are dry environments and yet some how when you are in them, you feel as though you acclimatise.

Ideally Mum's would drink water before they even felt thirsty but in reality time just passes you by on the Neonatal unit and you realise you haven't drank nearly as much water as you should have to produce good milk.

Equipment availability.

It's not always possible for hospitals to lend out expressing machines and sterilising equipment to take home (although most will have some available) Where this is not available it's another thing to pay for, that is on top of your hospital cafe meal costs and hospital travel fee's. I know it's amazing we get so much on the NHS in this country but none the less, the expenses to a family after a child has been born prematurely do add up.

Another difficulty  is getting hold of expressing equipment when there are hospital transfers. We had five transfers between hospitals when I was expressing and believe me, you have to be extremely motivated to be hunting down one of those machines!

Other Children

Many Mum's obviously have other siblings to look after too and between hospital visits and spending time with them,Is there time for expressing too? The average Mum will spend between 4 and 6 hours a day expressing, that's practically a whole third of your awake time.
The one time my eldest child made a fuss through out the whole NICU experience was the day I promised him some quality time. The plan was to go to the cinema and pick up a KFC on the way back, the KFC part never happened because I needed to get back to pump! There was a major melt down in multi-storey car park. :(

Tiredness

It's really quite annoying when people think that NICU Mum's get a good night sleep because their babies are being looked after by someone else! When you express, you are an utter slave to the machine and even if you don't express, I doubt many Mum's get a good nights sleep anyway!.Sleep deprivation leaves all new mothers tired but with added stress of a baby in NICU and all of the above to organise, tiredness is the last thing you need.

So with all this to contend with, it's not hard to see why  so many Mum's supply's dwindle and they end up ultimately turning to formula  and quite honestly, I cant say I blame them.

However, If, like me you manage to walk out of those NICU doors with a fully breast feeding baby, it really is the best feeling in the world. Here are some of the reasons why it is so cool.

Eating

It's true, you can eat more cake when you're breast feeding. Yes really, there's no rush to loose the pregnancy pounds with a hungry baby to feed. Which means cafe surfing and cake eating is in...
and that's every new Mother's right,isn't it?

Amaze your friends

If you've been a slave to machine for months like I was, make no secret of it. If an every day Mum is proud of herself for breast feeding, be a thousand times more proud! we fully earned our right to gloat.

Dependence

After having Smidge be dependant on the doctors and nurses for so long, I needed her to be dependant on me, I wanted to claim my baby back!

My little Smidge,she was born to me, grew in my womb. To have her suckling at my breast was like having her come home. The most beautiful feeling in the world.

Convenience 

I predominantly breast fed Mister G, who was born at term, How people can say formula feeding is more convenient is beyond me. I had a small taster of what it must be like when I was having to sterilise and store all that expressing equipment. With breast feeding a all I'd have to do is find a quiet corner, no preparation needed. 

Expense

It's free. need I say any more?

Health

I nearly forgot to add this in but obviously it's a major benefit. I felt more confident taking Smidge out in public and to baby groups etc, knowing she had the increased protection of the antibodies from my breast milk. 

and finally...

Sobriety!

That's right, with a dependant baby in the house and a four month NICU stay to come to terms with, lets just say breast feeding helped promote an altogether more savoury life style!

If you would like to make some lactation cookies for a Breast feeding or expressing Mother then check out this awesome recipe!

A Sad State Of Affairs

Now that Smidge is sporting some super strong lungs and is getting that bit older I've been looking out for new places to take her.

Browsing over the leaflet that was deposited through my letterbox this morning, I did momentarily contemplate using the local children's centre.

The thing that puts me off, no, really puts me off, is the presence of  'family support workers.'

Call me conservative but since when did we all need a family support worker? Are there not enough 'experts' leading the way in this country?

Is being a stay at home Mum and spending time with your child not enough these days? Do we have to compete with the likes of nurseries and pre-schools before our children are even out of nappies?

The saying 'Parenting doesn't come with a manual' is certainly a thing of the past as the neatly stacked shelves of WHSmith were never more packed with advice on every aspect and style of parenting.

Well you know what? I think we all just need to calm down a bit and have a double vodka. The trend to create an industry out of something so natural is frankly annoying.

So you make your own cookie cutters out of bog roll tubes do you?

And you haven't taken your baby out of the sling for 6 months.

Congratulations.

And what about our parents and our parents parents? Surely it is a major blow for them to watch their own children turning to the text book to learn how to be a Mum. What happened to looking to your family for guidance and support?

So when I see a Children's Centre family worker, I don't see 'messy play,' glue sticks and pom pom's. I see the breakdown of family values and guidance. I see the emergence of an economy based on creating social problems.

I see bored Britain.

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!!

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

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.