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,


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'

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!'

Friday, December 2, 2011

Santa's Merry Miracle's Party

Tomorrow will be a day of great significance for this here Premmy Mum. For it will be one year exactly since my waters broke and I was taken to Portsmouth in the dark of night. (Violins please)

It was on this very day that dear Baby- Roo announced  to the world her intention to bypass the third trimester and make her contribution to the field of medical science, giving her poor Mother the fright of her life in the interim.

It is perhaps a little bit ironic that on this same day, a year on, I am going to be attending a wonderfully apt and extremely momentous event, the ‘ Santa's Merry Miracles Party’ bought to us by SNUG. (Supporting Neonatal Users and Graduates)

Now some months ago, I posted about a group of us Premmy Mum’s attending a Neonatal coffee morning, the purpose of which was to offer feedback to the Matron about our experiences on unit.

Well the coffee bit never actually happened but I did make several brilliant friends and we have been virtually inseparable ever since.

Having been discharged from hospital for several weeks, it was great to come together with others Mum’s who had had similar difficult journeys. Together we could swap sob stories, share experiences and leisurely indulge in Neonatal jargon.

 All of us readily agreed that it would be criminal to restrict our natterings to a mere eight of us and thought, why not let’s meet up regularly and invite other Parents who have had babies stay on the unit to come too..

Several meetings later and hours spent on facebook and SNUG was born, and it has to be said, coffee issues aside, the lovely Neonatal Unit Staff have been with us every step of the way, going above and beyond the call of duty.

 So tomorrow for me…

is about coming together  with others to recognise the precious strength of our Miracle babies who have fought so hard for their places in this world.

It’s about recognising the amazing and unfaltering commitment of the medical professionals, because above and beyond the trauma I blog about there has been triumph, victory and achievement.

My Smidge’s life has been saved I tell you! and I want to shout from the rooftops how grateful I am to every last doctor and nurse for giving me this utterly beautiful baby girl to love and look after.

And finally it’s about knowing that no matter how tough this time has been it’s been 100% worth it and I would do it all again in the blink of an eye for my Smidge J