Saturday, December 31, 2011

My New Years resolutions - For the record.

  1. Say at least twice as many positive things as I do negative in any given day.
  2. Use the Wii fit EVERY morning for fifteen minutes. (unless I'm ill)
  3. Walk the dog for thirty minutes every afternoon.
  4. Drink alcohol only on friday's and not at all during lent.
  5. Reduce my chocolate consumption by 75%
  6. Get more involved with my community and stop restricting my social circles to people I actually like.
  7. Make more things instead of buying them, and don't end up doing the second thing because the first thing didn't work out.
  8. Hold dinner parties more often.
  9. Visit A&E less often. (much less often)
  10. Loose two stone in weight.
  11. Care more about the environment (and do more to promote my earth mother status).
  12. Tidy up the Attic.

Friday, December 30, 2011

Managing illness- The Winter Months.

Recently I'm afraid to say I've found myself all a bit caught up in some rather unwanted post hospital horribleness. See, since these winter months have snuck in, the outside world has started to appear to me more and more like one Giant Germ Fest...

Everywhere I go there are flush faced babies, watery eyed toddlers and snot faced children. I am regularly tortured by tales of temperatures and live in fear of the supermarket splutter.

It's not that I'm scared of the odd cough or snuffle, I'm not, (honestly.) but it's my Smidge you see, her lungs...they don't be no good.

Being born at 6 months gestation and having been ventilated at birth, she is especially vulnerable to winter nasties such as RSV and to tell you the truth its a challenge to manage.

See,I don't like to feel like I did earlier this year when she was in intensive care, when I was always on edge. And somehow, I stupidly and naively assumed that once we were discharged my breathing in to a paper bag days were a thing of the past.

Well we are not quite at paper bag level yet, but that sinking feeling of fear and powerlessness is still within me, not all the time, but when Smidge gets ill or when she is accidentally exposed to illness.

Anyway, It wouldn't be so bad if it didn't make me look and feel like a total nut job. If it wasn't for others looking at me and thinking 'over protective Mother.'

And so the gut wrenching NICU fear lives on within me..and it's not just the fear factor but the feeling judged factor, the being strong factor and the feeling angry factor.

Basically the messed up factor! Anyway all of that has prompted the letter factor, and friend, if you are reading this then sorry but you should have put Smidge first.

Dear friend,

Thank you so much for the wonderful virus you gave us whilst visiting our house over Christmas.

I know it didn't cost you much, but it really is the thought that counts isn't it? 

When you said your daughter had one just like it I was genuinely amazed that you thought my 25 week gestation premature baby would enjoy the same lovely present, but actually we've all felt the benefit. 

Her dad has been saving his annual leave up all year for this special time and what better way to enjoy it than with your special gift.

I'd heard they had ones just like it in the shops but I held off in the hope that someone would bring us one just like it, and you did. So what can I say but Thank you, and do call in any time, regardless of yours or your Child's health situation.

Best wishes and enjoy the rest of the festive season,

Leanna.






















Friday, December 23, 2011

NICU at Christmas


Well I, for one, hope that the hospital cleaners have done a good job on the hallways in the run up to Christmas this year, as never are the skirting boards more closely examined than through out the festive period.


In fact, One of the first things that struck me when entering the hospital on Christmas day last year, was the sheer number of people with their heads held low. I wouldn't actually be surprised if there was an increase in A&E admissions on account of it. You can imagine it now, cant you?

'I'm afraid it's another admission from area D, she collided with an inpatient from geriatrics.'

Not that the corridors were that busy. I mean, who wants to go to hospital on Christmas day when you can be at home, stuffing your face, watching Phil Mitchell burn down the queen vic?

For us, Christmas last year wasn't so straight forward, because we had to pretend you know, to be Oh so festive.

Inside though, our hearts were just breaking because our 1lb 7oz baby was now a 1lb 3oz baby and back on antibiotics whilst doctors were investigating.

On Christmas morning we sat around and watched Mister G open up his presents. One- day -Hubby was making all the right 'yay' and 'wow' noises. At the same time he was throwing me meaningful glances, indicating that I too should join in with the enthusiasm.

'Yay.. Wow..' went my mouth.

Can we hurry up and get to the hospital? Went my mind.

Smidge was just over two weeks old at this point. I was still physically recovering from the even-worse-than-usual c-section op, that the doctors had to perform to get Smidge out.

Because she was so such a tiny scrap of a thing and in the wrong position entirely, they had to perform the old fashioned type of c-section that makes a long ways incision too. The procedure is, in effect, not dissimilar to what you do to a jacket potato just before baking.

Anyway, I hobbled down the hospital corridor, doing my routine analysis of doctors facial expressions, searching for signs that they were about to impart with some tragic news.. take me to a side room even...

It all looked good.

I even got the occasional 'Merry Christmas' uttered to me, in an appropriately sombre and whispery voice.

I pushed open the door marked ICU. The atmosphere was, as always clinical.

Housing so many extremely low birth weight babies meant that the monitor bleeps were constant. The cool blue shades of the walls, although calming, did add to the serious and icy tone of the place.

As there was a strict rule that only two people were allowed at any one cot at a time, Mr G and Stephen were sat in the waiting room.

I wondered over to Smidge.

'Hi' I mumbled through the port holes.

'Merry Christmas' I said, as the tears rolled freely down my cheeks.

I placed my hands in the incubator, My two hands laid across her tiny body and I sat, not for the first time feeling completely overwhelmed.

But this time it was just too much. I couldn’t hold it together a second longer and I just broke down crying because it was Christmas day and she should have been with me, in my womb safe and growing.

How the hell could I care about tinsel and Turkey?

In the end a nurse came and she said 'Go home. You've come in today, and you've done all you can, now go home and be with the rest of your family.'

So I did.

I went home....well, to our temporary home. I poured myself a large glass of white wine and I watched George play X-box games through a blurry haze, all the while my mind drifting back to the intensive care unit.

And that was Christmas day last year. 

There is however, one memory that I shall treasure, and luckily we  managed to capture it on camera.



                                      Now that's what I call shopping in style.

Monday, December 19, 2011

Christians at Christmas

Just over a year ago, in the lead up to Smidge's delivery, I laid upon a hospital bed a long, long way from home.

I was a Mother separated and a Mother torn, as it became all to clear that there was no other choice, the fabulous Mister G had to go and stay with Granny.

So you can imagine my devastation when the midwives broke the news that the put-me-up bed was to be no more, that one-day-hubby Stephen had to find somewhere else to stay other than at my bedside.

The trouble was, (and is still is) that unlike his intended, One-day -hubby Stephen is a very proud Man, and if there's one thing that gets on his goat, it's wastefulness. Hence the option of a hotel or bed and breakfast was considered an indulgance, despite the sub zero temperatures and record breaking snow fall.

No amount of persuading could convince my better half that he was indeed a worthy enough being to treat himself to the offerings of a 2 star hostel, at the minimal cost of £20.00 per night.

But thanks to one wonderful lady named Diana, he was spared from the joys of back seat sleeping and offered a safe and comfortable home in which to stay, her house being quite literally a stones throw from the hospital.

The remarkable thing was, Diana didn't know us from Adam. We had been put in touch with her through friends of friends of family. They had explained the situation and Diana was only too happy to help.

Apart from looking after Stephen, she later went on to accommodate our entire family, which makes her a jolly nice person in my book. She even let us stay during Christmas whilst she went to visit with family.

Well, you'd think that would be good fortune enough, to find such a gem during this difficult time, but amazingly there were two wonderful others who came through for our family in our time of need. They were called Trevor and Vanessa.

Like Diana, Trevor and Vanessa were Christians and when they found out about our tiny miracle baby and our being so far from home, they offered us a house to rent on a bills only basis.

This was, excuse the pun, a god send. It meant we had our own little space that we could come home to, a place where we could shed tears, drink wine and be together. It also had rather nice fixtures and fittings which were temporarily ours to enjoy.

So today I am remembering these people for their heartfelt generosity. It is thanks to them that we were able to stay close by to our Smidge and could be there for her,day in, day out with out bankrupting ourselves. 

Without Diana, Trevor and Vanessa, we would have been faced with a 300mile round trip each day, or worse still,we wouldn't have been able to stay together as a family unit.

So whilst last Christmas there was fear, sadness and uncertainty there was also kindness, warmth and hospitality and that's what I'm remembering today.






Friday, December 16, 2011

Tommee Tippee - The Arch Enemy

I've always been a firm believer in tending to babies' needs. I've even been accused of overindulging them in the past. There comes a point however, when a Mother just wants a good nights sleep and that point I might add, came many, many weeks ago for this here Premmy Mum.

But one- day-Hubby and doting Dad Stephen is unfortunately a bit of a softy when it comes to his little 'Miggle.' and when I see the two of them together, a few words spring to mind, largely 'Daddy', 'twist' and 'little finger.'

Our Smidge has become all too comfortable with those early morning trips down to the kitchen for a warmed up bottle of failed Mother.Meanwhile one-day-hubby and doting dad Stephen has been getting less and less sleep as the months have worn on.

It is at this point, that many parents decide to introduce a transitional object to comfort their child such as a dummy or an old rag, but as my big girl is now a whole year old, I decided that at this stage a dummy would be a mammoth step backwards. Instead decided to introduce an object of hatred, an 'uncomforter,' so to speak.

It works on all the same principles as a comforter except it has the opposite effect, they don't want to carry it around with them and they definitely don't want to take it to bed.



So the first night that Smidge awoke for that totally unnecessary trip to the kitchen for bot -bot, Mummy popped up with a wonderful surprise, Tommee tippee, filled with the especially cooled boiled tap water.
I sat her up in her cot and passed her the delights of my wisdom which she proceeded to tip down her baby grow.

After scrambling around in the dark with the worst designed baby grow in the world, I popped up the buttons and represented the tommee tippee cup.

Well that was the final straw! She was furious! Da-da-da-da-da-! She babbled frantically , the most cross I've ever heard her. And when that didn't work it was buh-buh-buh-buh!! between shrieks.

So, I layed her back down and she continued to bawl while Stephen, under strict instructions to not get up, lay with his head under the pillow to block out the noise.

Every five minutes or so, I would give Smidge a bit of the old 'containment holding' for reassurance and offer her again the cooled boiled water which she would push out of her way with a frown and disapproving look.

In her own good time she eventually dropped off to sleep (or I did) and by morning she loved me once more.

When on the second and third nights her cries were met with more of the same, she finally realised that trips to the kitchen were no more and she has slept right trough for the last few nights.

But has she been traumatised for want of a little boundary setting? Have I undone all the hard work of nurturing and bonding with her? Not at all, She does however hate Tommee Tippee.



Wednesday, December 14, 2011

The Building Of Trust

If there is one thing I will be remembered for from our time in the NICU's, it will be for being an outwardly anxious jabbering wreck..

Far from subtle, my immodest approach to managing my anxiety never failed to set a challenge to those trying to reassure.

The problem I had was, I had a really hard time believing that the 'good' days really were good days and it wasn't until the bad days that I realised quite how good the good days were!

For example,say Smidge was having a good day then the doctors comments would be cautiously positive.

However, I'd still struggle to accept that they were unable to commit to anything more, and would always be angling for a brighter prognosis.

The conversation would always return to how they felt she was doing at the current time and would always end with me asking if they were sure about what they had just said and even worse still, if they were sure that they were sure!!

From their experiences of me,they would never know that sometimes they actually did get it right. Sometimes I went home and rested a little easier because of the conversations we'd had.

But just what does help to build the trust between a Doctor and a Parent in the NICU setting? Here's what helped me.

Overcoming class divisions
Breaking down the social class barrier is one of the first but most important steps a Doctor can take. It's no secret that these consultants types are clever, or that they spend immense amounts of their time in training and education. Thus it impressed me greatly when they would introduce themselves using first name terms. The temporary sacrifice of the title 'Mister' or 'Doctor' was a small but significant gesture and one that promoted mutual respect and understanding.

One Doctor I met wore scrubs to work instead of her own clothes and looked more like a nurse than a consultant but she never made an issue out of it or highlighted the differences.. Comfort over ego. It's the way to go in my opinion.

Equally though, I feel it's important for a doctor to retain a certain amount of nerdiness.professionalism. One SHO spent fifteen minutes talking to me about fashion and although she made some good points and arguably her shoes did rock, it didn't raise my confidence in her as a Doctor.


Little and often to begin with
Despite have visited the ICU beforehand nothing could have prepared me for how ridiculously overwhelmed I felt in those first few visits. The equipment, monitors and staff all seemed to merge in to one big blurry confusion.
So for me, keeping medical information to a minimum to begin with was a good call, it gave me a chance to focus on the baby, recover from the shock and puke up from the morphine.


Parental involvement
I could really write a whole post on this singular issue alone but in short, most Doctors will give parental involvement a whirl but some are more skilled at it than others.
A good example of involving the parent is by making sure they are told what the next steps are with regard to the treatment plan,what the potential difficulties are and the possible ways in which these may be overcome (before anything actually happens)

This approach helped to prepare me, gave me something rational to go home and think about and enabled me to join in on monitoring my babies progress. The result? I felt happier for understanding when Smidge had taken a step forward and less disappointed if she took a step backwards.

A bad example of involving the parent is by saying something like 'So Mum, We are going to prescribe Phosphate to manage the conjugated Jaundice, any questions?' Er yeah... congregated what?


A conversation about conversations
When Smidge was in intensive care I was permanently on edge, my mind was always racing and I used to worry that if something was going wrong I'd be the last to know. One day a Doctor took me to one side and she said this:
'I know it's hard for you and you are going to be worried, this is a worrying situation. At the moment however I'm not worried. So how about this, If I am worried, then I will find you and I'll tell you and you can worry too. If I tell you I'm not worried then you can try to relax'
Some weeks later she came to me and said:
'Okay, I want you to know that I am a little bit worried and we are going to transfer her so she can be kept a close eye on by the surgeons . I think it is likely that she will need an operation at some point' With that she put a her hand on my shoulder and said 'If you can think of any questions,any questions at all just come and find me'
I found it much easier to put my faith in her after that.


Drawing a line
Being anxious as I was, there was no end to the questions that invaded my mind. Looking back I don’t think I was doing myself any favours going over and over the same old ground, trying to understand things I could never truly understand as I just didn’t have the knowledge and the background.
Once, just before we were transferred for the fifth time, I was at the end of my tether, my anxiety had reached an all time high and I felt angry,frustrated and tired. After half an hour of being in the firing line the consultant put his hand on my shoulder, looked in to my eyes and said 'Leanna, I'm going to leave you now. I think you need to get some rest. After that if you have any more questions then please get back to me'


Humour
After my waters broke I was a touch on the panicky side. I found it really hard listening to the doctors talk about what was going to happen next.So I decided to bring on board a paper bag, mainly as a deterrent but also because breathing in to it really helped me to manage my stress levels which were sky high.
I have a little smile to myself when I remember the paediatric consultant coming in to see me to discuss survival rates.
On leaving he turned to me and said, 'I won by the way'
'Won what?' I said.
'Oh..I had a bet with the previous consultant that I could make you breathe in to that paper bag less times than he could!'






Wednesday, November 30, 2011

Bramble Ward

It has taken me over a week to process the horrible happenings of last weekend when Smidge and I were subjected to three days of cubicle torture on the local children’s ward following a visit to A&E.

It wasn’t meant to happen this way you see. I’d only visited the out of hours G.P an hour or so beforehand and she’d packed us off home with antibiotics.

The trip to A&E was only ever intended to be an anxiety-related precautionary measure, the outcome of which would be a few raised eye brows and some sympathetic looks.

Needless to say when the Matron pulled the emergency oxygen supply of the wall and swiftly moved us on to the resuscitation bay, we were more than a little taken a back.

‘I don’t want you to be alarmed’ She says

‘But I’m going to put her with a one to one nurse whilst we are assessing her’

And with that we were guided to a room where monitors were plentiful and doctors announce themselves at the drop of a hat.

Second only to the time I was falsely accused of stealing hubba bubba from the local spa shop aged eight and half, The feeling was one of complete disbelief and despair.. What on earth is my baby doing on the resuscitation bay?

I can hear pipe and suction type noises coming from the bed beyond the curtain and the sound of an onlooker calling out that she’s scared and frightened.

Could you please not keep saying that , I’m thinking, biting down my already bitten down nails to the point of causing pain.

The doctor pulls out her stethoscope and starts asking about allergies and other non-urgent sounding questions.

What’s she faffing about asking questions like that for?

Shouldn’t she just get on and start resuscitating or something? I wonder staring at a slightly warm but totally breathing Smidge.

What if she misses something urgent whilst asking all this faf?

Could it be meningitis? I waffle, before launching myself in to Stephens’s shirt, unable to bare her response.

‘The Meningitis rash doesn’t normally look like this, see the way it disappears to the touch?..No, I think what we have here is a typical case of bronchiolitis'

‘See Mum?’ Says Mr. G, putting a reassuring hand on my shoulder ‘it’s all good’

‘ Okay, yes..um thank you and er.. Sorry for… you know for being worried’

‘That’s okay, I understand perfectly, It’s because of all you’ve been through’

Well actually it’s because we are in the resuscitation room.

At the hospital.

Giving my baby oxygen.

but yeah I know what you mean.

Without further ado we were then transferred to Bramble ward and placed in a pale green room with a prison cot in the middle.

Well that night Smidge started  firing disapproving looks at me from between the bars.

‘Get me out of this orphan cot’ she scowls ‘I’ve done my time in NICU’

‘It wont be for long Roo' I sympathise stroking her hair.

'Well at least do me a couple of rounds of mountain song’

So I do.

And a couple more rounds.

And a few more after that.

Before long Mountain song became an integral part of the Bramble- ward -cubicle- torture experience, along with the sats monitors and alcohol gel, taking me back to place I thought I'd long since left behind.

Saturday, November 26, 2011

Happy Birthday Mr G!



Today is Mr G’s twelfth birthday, Twelve years old I tell you!  and it’s been non stop action ever since my eyes pinged open this morning.

The fact Mr.G’s Birthday has fallen on a Saturday has had both good and bad sides to it.
It was good that we got to go out with his mates on his actual birthday. It was bad that I had to spend all morning frantically cleaning the house before their parents turned up and even worse, the Garden too! Can you imagine?

We had awesome day out at 'Battlefield Live' though and the trip to the arcades afterwards just sealed the deal.



I'm amazingly proud of my first born boy for being the person who he is today. He is a very kind and incredibly bouncy kid who has an absolute heart of gold. He has not had the best year this year but he has been unbelievably resilient and  understanding. One day Mr G is going to make a great adult, but for now he is a very much loved and appreciated Brother and Son :-)


                                                                   HAPPY BIRTHDAY!!









Friday, November 25, 2011

Unwanted Victories.

When I found out I was having another baby I was super excited. As a second time Mum I thought I would take to Motherhood again like a Swan on a lake, and I did sort of.. (If you can imagine the Swan hissing and stealing bread from the duck.)

Being only 20 when my first was born, I’d opted for an I’ll-make-it-up-as-I-go-along approach to parenting, and although Mr.G is a great kid, some of my approaches were a bit hit or miss to say the least.

Naturally this time around I was aiming to be an even better parent, what with education and the benefit of hind sight on my side, I was going to be admired by all for my patience, skill and experience, bringing Passion and creativity to this somewhat untrendy role.

But when Smidge was born at 25 weeks gestation, this prompted a radical reality reshuffle. All preconceived ideas about positive attachment relationships went down the plug hole along with the NICU hand soap and remnants of yesterday’s alco-gel.

The difficulty was I was really quite attached to this ‘Improved Mother’ idea and I fear I may have bought a teeny bit too much of my keen-to-do-well-ness to the Neonatal Unit, irritating some of the country’s most patient and highly regarded professionals.

Disputing clinical decisions, Making amateur diagnosis’s and questioning policies and practices were amongst many of the bazaar behaviours I exhibited in an attempt to play Mummy.

Eight out of ten times of my predictions would prove to be unfounded but sometimes, just sometimes I would get it right.

Say for example Smidge was having recurrent pauses in breathing, I would think this was due to infection, or if her heart rate was plummeting regularly I'd think she might need a blood transfusion.

But even when I was right, the victory was somehow bitter sweet because the imminent concern over Smidge's health would over ride what would have other wise been a perfectly good gloating opportunity.

See I wanted to do what other Mothers did, to cuddle and comfort their babies, to tuck them up in just the right way that only Mummy knows how, but when it became evident that this wasn't really an option, I wanted to know what the doctors and nurses knew! I wanted to do as they did!

Of course deep down I knew that I had neither the skills or experience to carry out these roles and probably looked very ridiculous trying, but still I think my Smidge knew I was there for her. Hell- I think everyone knew I was there for her!

But did predicting an infection or surgical assessment help me feel more like her Mother?

Yes.

Did it help when I was right?

Not one little bit.

Sunday, November 20, 2011

Sunday

Sunday, November 13, 2011

The Dress That I Did Not Want.

Last week I went shopping on the High street. I was seeking out clothes,Winter clothes to flatter my post pregnancy shape. But those damn winter woollens, they add inches just where I don't want them and anything that looked remotely flattering was more suited to cocktail party than the British winter weather.

But then suddenly, amongst all the rails of clutter, out popped a most suitable looking winter dress. It was cut in all the right places, 'Wow!' I thought 'What a winner' and toddled off to the changing room to try it on.

I was pleasantly surprised with the way it fell, it didn’t cling to all my wobbly bits like others I'd tried.

A little bit delighted, I thought 'I'll buy that!' and went to put it back on the hanger before getting changed. However just as I as I did, something terrible came to light. Oh no! The flattering winter garment was  Maternity wear!

I hurriedly left the changing room red faced and ashamed, practically thrusting the dress in to the shop assistants hands with full force and a very loud ' No Thank you'

Once again, I have  been forced to seriously re evaluate the diet situation and I might just have to wipe the dust off that sports centre membership card, that is if I can find it.

The problem I have is that I stick to diets like blue tack sticks to glass, pretty much a non starter from the off I'm afraid.

So this time I must take this dieting lark more seriously, starting firstly by attempting to understand my own unhelpful and annoyingly repetitive behaviour.

This diagram 'The Cycle of Change' written by Prochaska and Diclemente and can be used to understand all sorts of dependant behaviour, I like it because it illustrates my failings beautifully.


I'm really hopeful that I can come up with full proof plan that enables me to stay in 'maintenance' for at least three months. 

As one of my main issues is not being able to stick to a diet for more than a week, I've decided the best option is to change the diet each week, this should help to prevent boredom. Each week on a Sunday I'll be reviewing the diets and rating them on things like how much weight they made me lose, amount of time spent flaked on sofa,how many friends I lost, whether everyone else had to get their own dinner and how many times I went over my overdraft limit.

Should be fun so watch this space x





































Tuesday, November 8, 2011

Wagner, The Senses And My Deteriorating Mental Health.

About a year and a half a go, I went on a training course for foster carers, Yes it may come as a surprise to you but the local authority not only allow me to look after my own children,but other peoples too from time to time.

Anyway, this training was aimed at helping foster carers to understand how memories, triggered by the things we see, smell, taste and hear can impact on our behaviour.

In order to illustrate the point, the speaker bought with her some little kodak film tubes, from back in the day (when you actually had to take a film to the developers.) Now what she she did next rather reminded me of what my brother used to do with his farts in our youth, She had preserved scents in the cylinders to pass around and see what memories they activated.

And its strange because as we are moving in to these winter months there are many seasonal happenings that trigger memories for me, taking me back to this this time last year when I was desperate to hold on to the baby I had not yet met.

Halloween Costumes, the wet weather or the X-factor theme tune music all remind me of being in hospital, five months pregnant, trying to convince the staff there that I was not a nut job, that I was going to have a baby early and I was scared. High tariff television was my only escape from the prospect of the impending pre term labour.

Stephen and I would huddle up on the too- high, too- thin bed, holding on to a headphone each and watch the celebrity wannabes dish out one cheesy pop song after another. (forgive me Stephen for exposing this)

Any way, the one act that that I disliked above all others was 'Wagner.'
It wasn't because he couldn’t sing for all the tea and china but because he made me giggle so much I just couldn't help myself! This would then be followed by me thinking I'd provoked yet another bleeding episode. Of course being a silly pregnant woman, I'd laugh at any thing remotely funny and Wagner had me biting down on my lip so hard I looked like I'd done ten rounds with Mike Tyson, Talk about an emotional roller coaster!

Those days leading up to the 'viability' stage of pregnancy were marked by fear and powerlessness. The sense of guilt, worry and concern saw my anxiety levels soaring and I felt very isolated in the realisation that my baby would not be born to be healthy. Nobody else echoed my concerns much less confirmed them, not a single doctor or nurse, which had me questioning weather I was, in fact losing the plot.

I see a similar pattern emerge these days when the the X-factor theme tune plays out on a Saturday night. It triggers a sense of alert deep in my consciousness, only this time it's not the bathroom I run to but the cot side where before me lies a beautiful sleeping Smidgy-Roo, and I count my lucky stars (excuse the pun) that we are where we are today.


Tuesday, November 1, 2011

A Letter From Parliament

You'll never guess what I found nestled in my rusty old post box on my way back from the school run..

A pale yellow envelope, smooth to the the touch with the 'House Of Commons' printed across the top.

So I keenly deposited the remaining bank statements and Pizza Hut buy- one -get- one- free leaflet in to the 'I cant be bothered box' on top of my tumble dryer and peeled open the high quality envelope made from recycled paper to reveal....

A letter from my MP Anne Marie. No,

A letter from my MP Anne Marie, on Embossed Paper.

Well if I wasn't impressed with Anne before I certainly am now I thought, as I cast my eyes over the text.

See, I'd called in to see Anne at her 'surgery' a few weeks ago as a part of my work campaigning for Bliss, the Charity who strives to improve outcomes for vulnerable babies and their families.

'As Marvellous as the care was in the hospitals', I'd told her in our meeting, 'I'm getting a little bit flustered about how the NHS budget cuts are impacting on Britain’s most vulnerable babies.'

The new Bliss research shows that more than half of all UK Neonatal Units are not meeting the standards that have been set out by the NHS, and there doesn't seem to be an infrastructure that ensures health care professionals get the training, education and learning opportunities they need to be able to deliver vital life saving care to their teeny patients.

Having heard my concerns, Anne immediately agreed to do what she could to help, starting by writing to the secretary of state to see if he can tell us what's going on with regards to how the cash is being splashed.

So Anne's letter was in short, to clarify our conversation and put in writing her next steps. Jolly nice of her I thought. And what can I say but I'm delighted to have a community MP who is willing to listen to her local ranters residents and act on their concerns.

She finished her letter by saying she will write again once she has more details and that she will keep what I told her a secret. (apart from when liaising with the big house) very respectful Anne, I wish I could say I'll do the same!



Saturday, October 29, 2011

Parenting - High's,Lows And I Don't Knows.

Some of you will know already that there is a massive eleven years between my two cherubs. That’s nearly 12 years spent in parent-ville to date.

So far it’s been a real journey but I like to think I’ve learned a few things along the way. Of course there are many who would agree to differ on that but as I say, I like to think I have!

Well whoever said Parenting doesn’t come with a manual was clearly oblivious. Aside from the government issue of  'Birth to Five' distributed on the twelfth week of pregnancy, we are quite literally overwhelmed by the vast array of expert advice relating to what we've all been doing for years- bringing up our Kids.
However the following notes about child rearing wont be found through browsing through the isles in WHSmith.. which sort of brings me to my first point...

Parenting books.
An Excellent alternative for fire lighters during those winter months, but if you think reading them will prevent you from turning out like your own Mother/Father then you are sorely mistaken.
The values you learned from your parents are programmed in to your psyche and seeing a more intelligent approach will only depress you when you when you don’t step up to the mark. For this reason it’s best not to read books at all but if you must, find one that’s backs up what you think already. Can’t find one? I know how you feel.

Pretend you know what you’re talking about.
It doesn’t matter what you believe in when it comes to raising a child but it is essential to give the appearance of knowing what you’re doing, if you don’t, you leave yourself vulnerable to all sorts of unwanted advice which again only reinforces a sense of failure, making your job harder.

Give a balanced picture when sharing your experiences.
Nobody likes a parent who only ever sees the good in their child. As sweet as it is it's also incredibly annoying. In contrast if you complain about your child and their perceived difficulties too much then parents will only use this as an opportunity to feel good about themselves. Yes it's a dog eat dog world out there in parentville, and parental one-upmanship is deeply ingrained in to the child rearing culture. As such, it is important to offer a balanced picture about your child. Two complaints to every three compliments is good.

Consider all unacceptable behaviour as a temporary blip
No matter how non distinctive a behaviour may seem it is useful to believe it to be only a phase. Of course this is tricky when your child is persistently presenting with the same problems, in particular if the same problem is highlighted time and time again by varying sources. Put your faith in the fact that after embarrassing you beyond belief your child will eventually overcome the phase and come up with new ways to show you up.

Dealing with Criticism.
Parents bring to the table all kinds of different ideas about how to raise kids and none of them are really 'right.' Folks bring to parenting what they think their child needs to survive in this world, which will be different to what someone else believes their child needs.Hence we are a diverse population.
With this is mind, if someone criticizes your child or your child rearing skills don’t feel you have to justify your parenting or their behaviour. A simple 'He'll grow out of it' will suffice.

Enjoying your role
Being a Parent is packed full of unforeseen challenges.
Any concept of how you thought you would deal with this experience will go out the window as you learn how to function in this dog eat dog world.
As your child grows so will your expectations,you will become increasingly hopeful of seeing a positive return on the time and energy invested. Sadly it takes years for a child s potential, aspirations and identity to become clear and by the time they do your own ideals will be lingering submissively in the background, abandoned in a bid to maintain a positive relationship with your off spring. As such it is wise to try to enjoy parenting for exactly what it is, a drawn out, unpredictable act of selflessness full of highs,lows and I don't knows.


Wednesday, October 26, 2011

Preparing For The Worst Whilst Hoping For The Best.

Ever wondered what it feels like to be catapulted off a multi story building only to find yourself suspended in mid air attached to a tree branch or similar?

You are petrifyingly frightened and unbelievably grateful.

You feel fractionally safe but not  too secure because in a blink of an eye it could all be so different and you know this.

This is what it’s like to have a baby in intensive care. Or so I told myself as I sat by the incubator in the NICU.

The monitors beeped away and it was strange because I felt slightly removed from the situation, rather like a stranger looking on. I was very aware of my mental state, very keen to hold it together, to be seen to be coping .

Better not do anything strange then or too weird. What about crying? Is crying okay? I’m sure it is, I thought, under the circumstances.

Before me was my wee scrap of a Smidge, The ventilator  rhythmically making ‘psssst’ noises, the numbers dancing around the screen. I hadn’t the foggiest idea how to interpret them.

The nurse strolled over and began to talking to me. She looked at me kindly and asked ‘how are you?’  I tried to reply but the words, they just seemed to escape me.

‘It’s overwhelming ,I know’ she said, helping me out a little.

It was my first visit to the unit without Steve and I was visiting our baby alone.

Looking in at her tiny face I found it unbelievable that she so small could grow to be big and healthy, yet it was equally hard to envisage that she would not live to be my daughter.

I think it’s the same for any parent of a tiny tiny baby. We see these four pound’giants’ being discharged from special care and it is so hard to believe that the foetal like preemie that lies in the incubator before you could ever reach that level.

Parents quickly become aware that there a few ways you can go mentally whilst in this very frightening and highly stressful situation.

You can;

Hope for the best:
Optimism is one stance that never failed to amaze me in this situation. This is where brave parents think positively, if survival chances are 50/50 then they are on the happy end of it, their glass always seems half full. They put their faith in to the doctors, never fail to point out the positives and are very mindful what they focus on.

Prepare for the worst:
In contrast, the parent who prepares for the worst throws themselves in to the NICU situation, seldom leaves the cot side, takes on board every last detail and worries about everything. The situation and progress of the baby dominates all their thought processes, and they find it very difficult to take time out mentally or see a light at the end of the tunnel.

However most of us fluctuate between these two processes and mentally it is very tiring, We use a huge amount of energy  sustaining ourselves in this time of uncertainty.
As you know, I used Mummy- bot and got my dry eyes out to keep my energy up, but basically any coping strategy to me is perfectly acceptable because you just do what you do when preparing for the worst and hoping for the best.



Thursday, October 20, 2011

Poisoned

Oh Bloggy.. I'm ill! I've poisoned myself and Mr.G and Stephen too! It seems only Smidge has escaped the wrath of my cookery. What started with good intentions resulted in simply torturous outcomes. Who ever would have thought a singular lump of cheese could cause so much trouble?

I was in the kitchen you see, preparing a vegetable lasagne with a complex aubergine sauce and keen to be as organised as possible I grated the cheese in advance whilst waiting for the aubergines to boil down.

I waited,waited and waited but those aubergines took a jolly long time.

When finally the correct amount of shrinkage occurred, I layered up the lasagne and lovingly scattered the pre grated cheese over the top. The cheese looked a bit,well melty,but surely it was just a little more mature now. right?

Wow Stephen was going to be impressed with me I thought to myself, much more Earth Motherly than last nights fish and chips. I popped it in the fridge so I could clean up the kitchen..

6pm and dinner was served, it was compliments all round and my Earth Mother status was reinforced.

A few hours on and the effects started to become evident, Oh the shame of poisoning your own child. I will be kind and spare you the detail but last nights shenanigans called for some serious indulgence therapy.

Today I put my green faced self in to a car and drove to the petrol station, where I purchased some tomato soup, jarred baby food and two trash mags.

I am now feeling marginally more human. :-(




Friday, October 7, 2011

The Coolest Thing About Blogging

I always kept a diary when I was a kid because I felt it was important to keep a record of all the great injustices I suffered. There would be quite literally reams written about my parents and the perceived issues regarding their chosen disciplinary measures.

I would literally spend hours scrawling away in my bubble style handwriting, putting the world to rights and then, with my brain fried and hand aching I would manage to muster up one positive sentence. Something like ‘Am meeting Louisa tomorrow, Should be good’

So you can imagine what a delight it was for me to discover the blogging world some 20 years later when once again I found myself struggling emotionally.

Of course these days I keep an ‘Open Diary’ so anyone can read, which is a far cry from the scribbled out jottings of a paranoid pre-teen.

This to me is by far the coolest thing about blogging. See, since making this diary public, I have come to realise that there are others, many others who can relate to my experiences as a parent, and it seems they can be a lot more honest about their own muddles and struggles, making me feel better about my own. Awesome J

Yes I think it is brilliant that there is a multitude of shameless parent bloggers out there ready to unveil the truth about parenting.  I mean I shouldn’t have to put a throw over the x-box or tip flour down my dress every time someone comes round should I?



Tuesday, October 4, 2011

Dry Eyes And Six Real Tears

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Do you know not yesterday but the day before I produced six REAL nicu- related tears? Quite an achievement for the emotionally redundant I’m sure you’ll all agree.

Especially given that over the past week or so I’ve been freaking out a bit that I might be ever -so -slightly affected by the dreaded PTSD (Post Traumatic Stress Disorder)

Ever since I found out about this disorder, it’s been post-traumatic this and post traumatic that..  And in the end I’ve just had to take heed and admit I’ve always been a bit of a stress head, It’s in my nature, It’s just that now I have a reason for it. That’s all.

It’s fair to say that like most people, I’ve always had the occasional ‘off day’ You know the ‘I’m going to stay in my pyjamas all day, eat leads of chocolate and cry because I feel like a frumpy old whale with no purpose’ kind of day, but never in all my time have I ever suffered with dry eyes.

So Dry Eyes is new to me but I’ve been thinking a lot about it and have come to believe it is an unfortunate side effect from having to be strong for too long.

Dry eyes are what happen when there are just too many lumps to swallow and from seeing things you never ever thought you’d have to see and never had the time to prepare for.

Dry eyes happen when you find yourself in a world that you never knew existed, that comes at you so fast, so technical, so intense.

A medical world full of bleeps, tubes and experts.. all riding the wave of change.

And you have to keep those dry eyes because that world isn’t going to disappear. Not for a very long time.

And if you are VERY very lucky. Then one day you can leave the dry eyed world with a baby, a lovely little baby..

Who will learn to coo and gurgle.

Who will make you smile again with her gummy grins and shining bright eyes.

And lovely little babies make you feel what it’s really like to be a mummy, and agree with you that they  looked really silly in all that plastic stuff, They  help you to feel happy and proud and human  and ultimately enable you to produce..

Six REAL Tears!

Saturday, September 24, 2011

A Placenta shared is a problem halved.

Well I never, medical science has prevailed once more it seems, or so I read in New Scientist magazine. Yes in as little as four years time there could be a new treatment available to overcome the issue of PROM. (premature rupture of the membranes)

PROM is the cause of roughly 40% of early deliveries in the UK so if this new treatment is successful then it could potentially save the lives of thousands of premature babies across the globe.

By all accounts it involves making patches out of stem cells that can then be used to reseal the water bag.

Now if this sounds to you a bit like a white coat version of pin the tail on the donkey then fear not because surgeons intend to use key hole surgery to carry out the procedure.

Apparently the stem cells needed to create this patch will be gathered from other women's placenta's .

Weird isn't it?

'Excuse me, I was just wondering,could I borrow a bit of your placenta?'

'Yeah sure..no probs.. I'm not using it any more anyway '

:-)

It makes you wonder though, why PROM happens in the first place.There were a couple of theories flying around in my case.

One Ob-Gyn actually suggested that Smidge might have done it herself with her nails, but this explanation doesn't make any sense to me and I don't think Smidge would have done it. I mean just look at her..


                                    FALSELY ACCUSED

No. the second explanation rang more true to me, that the water bag broke down because of excessive bleeding during pregnancy. The enzymes in the blood, intended to break down clots, broke down the water bag by accident causing PROM.

Either way,the point is that this patch might work for someone like me in a future pregnancy.

Please note the emphasis on the 'like me', that is to say that another person, similar to me may benefit from such a surgery.

But another pregnancy? me? No, definitely not me.

Wednesday, September 21, 2011

Dirty Little Secret



It may come as a surprise to some of you that Smidge, at the grand old age of nine and half months is still being monitored by a portable apnoea monitor, 'borrowed' from the unit.

Now we all know that hospitals don't discharge babies that need to be monitored so what happened?

Did I steal it?

Did I purchase it on ebay?

Did I offer the consultant sexual favours in exchange for the loan of it?

 No. I simply acted my normal barking mad self and refused to take baby home without one in tow.

Actually I'm quite proud of how far I've come with regard to weaning myself off of it. I can look back and laugh at that day we put Smidge in the car, me sat there staring frantically at intermittent flashing orange light, my hands cupped around it to prevent the sun light from 'skewing the clinical picture.'

Ha,ha,ha,ha,Yes we've come a long way since then, Nowadays I look for dusky blue areas around her eyes and lips instead, I look at the way her chest rises and falls and seek to detect the heat of her warm breath against my skin.

And I am proud to say we have now reached the stage where she only gets 'plugged in' when she's sleeping or on very long journeys.

I have to admit feeling a little guilty at times, when other people clock it and they think that there’s actually something wrong with Smidge and then I have to explain embarrassingly, that actually the problem is mine and not hers.

Now, at the risk of sounding like I have Münchhausen’s by proxy, I am going to attempt to justify why I feel it has been necessary to keep Smidge on a monitor to date:

  • She has Chronic lung disease. Now although this is one of those ailments that thankfully sounds a great deal worse than it is, Smidge's lungs are none the less under developed which could cause her breathing problems.

  • Premature babies are four times more likely to die of cot death than babies born at term.


  • I am less likely to kill us in a traffic collision due to watching her and not the road.

  • I need my sleep, like really need my sleep.


So there you have it, what lays beneath the snuggled appearance of the soft pink baby grow,A plastic wire and a circular sensor.That is naked truth. Be it sad, mad or bad.









Sunday, September 18, 2011

Bonding.

Today's entry is all about bonding. Not the use of adhesive to stick things to walls you understand, but rather more about the formation of the Mother/child relationship or more specifically the Mother/Smidge relationship.

Now it's not uncommon for Mothers to report feeling an 'overwhelming sense of love' upon seeing their newborn for the first time, yet if the truth be told this didn't seem to happen to me, not with either of my two.

If I am honest I am marginally disappointed about this, You see not only would such a scenario help to validate my Earth Mother status but it would undoubtedly give both Mr. G and Smidge the glory that they rightly deserve.

In my case, for some unknown reason, the formation of the Mother/Child relationship relies on the 'feeling needed factor.'

That is correct. I only love babies that make me feel important. It could even be argued that I love 'conditionally.'

Needless to say when Smidge took up semi- permanent residence in the intensive care unit, Our early relationship was inevitably affected by fear and trepidation. To this day I am consumed with feelings of guilt and shame as I question myself over and over.. Did I allow myself to love her enough when she needed me the most?

To say I had some difficulties coming to terms with the situation is the understatement of the year.I found it very, very hard to go to the unit each day to see my baby, so vulnerable, so sick and so small.
So rather than go myself, I would often send Mummy-bot instead who was far more suited to role of nicu- mummy.

Mummy- bot was good in the respect that she looked and dressed just like me, yet Mummy-bot's ability to experience things was limited which meant she could process information more effectively.

Mummy -bot would arrive at the unit each day and check the monitors for imminent concerns.Mummy-bot was very good at engaging with the machinery and illuminating the input of the nurses who she classified as an 'unreliable source.'

Mummy -bot would however process consultant data. She would then attempt to ascertain it's accuracy by asking multiple questions to different sources. In the end it turned out that Mummy-bot's system was not sophisticated enough to deal with the data, causing the system to go into overdrive.

Inevitably it had to be re-booted.

I thought Mummy-bot's identity remained a secret but it actually turned out that we weren’t fooling anyone as the nurses dared to tell me gently pointed out that I was 'attaching myself to the wrong things' or 'might benefit from doing more skin to skin.'

I thought it might help me today to compile a list of the things that I found  hard ( in an attempt to justify why I felt compelled to send Mummy-bot to the unit instead of attending personally.)

  • Loss of Control. This was something I really struggled with and it bought about a lot of mixed emotions for me. On the one hand I was really grateful for the fact that they were saving my babies' life, Yet at the same time the fact I needed them reinforced a sense of failure on my part and I resented them for that.

  • Invasive procedures. Being born so tiny,Smidge had to have so many invasive procedures. Being born at just 25+1 she had many cannula' s,long lines, eye examinations and surgery. None of these were pleasant to see.


  • Milk intolerance. It was hard that for the longest time Smidge couldn’t tolerate her feeds. She was over two months old before she finally got up to 2lb from 1lb 7. She had numerous set backs and infections plus two referrals to surgical units on account of it. She was still having trouble with this at 36 weeks gestation. It breaks my heart that when she did most of her growing it was from false nutrients on a drip and not from the milk that I provided.

  • Slow Progress at first. I would find it upsetting when other babies born after Smidge, weighing less would move on quicker than she did. Mummy bot would often listen in on other babies progress reports and compare against Smidge in an attempt to balance probabilities – Naughty Mummy-bot!

  • Feeling Judged. I always felt like I was in the middle of some reality TV show, that people were looking at me, trying to work out weather I was going to crack up or not.

  • Apnoea's. An area where Smidge excelled. Sometimes doing ten or more a day if she was unwell. I just never knew where to put myself when this happened.I felt so helpless. I'd just hope they could get her breathing again before I had too much time to think about what was actually happening.

  • Uncertainty. The not knowing weather she would live or die was by far the hardest thing and this just seemed to go on for so long. In fact it only really became clear on the day I heard those magical words *discharge planning meeting* 117 days after she was born. It was only then that I knew I was actually taking a baby home with me!

It's funny because when I compare these points against another list I wrote recently which describes some of the many things that I love about Smidge, it makes me realise just how much our relationship has grown and developed since leaving hospital. I can't change the fact that I found those early months a challenge and I cant change the way I dealt with it but I can learn from it and grow both as an individual and as a Mother to a Miracle baby.