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 M√ľnchhausen’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.

Sunday, September 11, 2011

How far would your hospital go to save your babies life?


Recently I read an article about a Mother who had lost her baby born at 22 weeks gestation. The article exposed the hospital who were managing her care because they refused to offer life saving support to the baby who breathed independently for over 40 minutes.

There are hospitals across the country who have the expertise and resources to save the lives of babies as tiny as this, who can and will intervene with parental consent at 22 and 23 weeks.

However finding the right hospital to manage your neonate is something of a postcode code lottery as hospital policies vary according to what the hospital believes is in the interests of the child.

Fortunately,if you go into premature labour after 24 weeks, then what ever hospital you present at has a responsibility to put in place support to save the babies life.

When my waters broke at 24 weeks we presented ourselves at the local hospital. The difficulty was, unbeknown to us they were only a level 1 baby care unit which meant they were not even close to being equipped to deal with a baby of that gestation. We had to remain there for five hours whilst they attempted to find us suitable care and put in place travel arrangements. Had we known this initially we would have gone directly to the nearest level 3 unit. 30 miles away.

Given that the pregnancy was not straight forward, you would think someone might brief us on where to go in the event of pre term labour. But as this didn't happen I can only assume the responsibility lies with the pregnant woman as opposed to the health care provider.

Although delivering a baby this early on is very rare (about one percent) it is none the less important that parents are provided with appropriate information so they know what steps to take should they find themselves in this position.

Aside from knowing which units are equipped to take on an extremely low birth weight babies it is also worth knowing what the individual hospital policies are in relation to offering medical interventions to very small infants.

Even when policies do point towards parental choice,Too many parents are faced with making life changing decisions in the face of a crisis, and more could be done to prepare parents should they be faced with this difficult decision.

Sadly, more often than not, parents become familiar with these sorts of issues after the event, when they are coping with their loss or the impact of a decision that was made in extremely difficult circumstances.

No one likes to consider the possibility that they will deliver a baby this early but it is far better to prepare for something that does not happen than to be ill prepared for something that does.

Friday, September 9, 2011

Start From The End.

A few times now I have attempted to put together a compilation film of Smidge's stay in the NICU.

Even back then I knew that whatever the outcome, I would want to keep a record of her journey so I took regular films of her throughout her stay.

The difficulty I have though is that I am finding it so hard.

You see back then, on my car journey to the hospital each day I used to listen to this one song. It seemed to sum up perfectly the way I felt and each time I played it I knew it would make the perfect backing track for the film I would one day put together.

When hearing it I used to imagine two endings to the film. One was us carrying a miracle baby out of the hospital in a car seat, and the other... well we wont go there.

I know that we got the ending that we dared not to hope for.

I know that I am truly truly blessed.

But every time I play this song combined with the footage I've taken,  it is as though I experience the fear and uncertainty like never before.

A part of me thinks that this is healthy because for so long I didn’t allow myself to feel scared.

It's strange because at the time I knew I was terrified. But it was like I experienced this fear on an intellectual level rather than emotionally.I suppose I just thought that to allow myself to feel frightened it might cause me to lose the plot so I denied myself the opportunity to experience such a loss of control.

Now that I have my Smidge home, the images of her so poorly and helpless are bringing up more feelings than  ever have before.

When I look at the images now I see her, My beautiful spirited baby girl and it actually it hurts more!

And I suppose what I'm realising as I am writing this post is that I found it very hard to see her character, her spirit and who she was as a person when she was so small, so sick and so fragile.

As I watch her grow and her character emerge the emotions of joy and relief are unstoppable as my love for her knows no boundaries..

I do want to make the film with the happy ending. The one I dared not to hope for.

I do want to explore the feeling of the fear the pain and the uncertainty. 

but the bond we now share and the joy it brings deserves its chance to flourish.

Like a double edged sword the NICU experience has both given and taken so much,

Without the fear,the uncertainty and pain I wouldn't have this wonderful baby girl.

But just for the moment I’d like to start from the end and enjoy the beautiful new being I have grown to adore x

Thursday, September 8, 2011

The Big Library

Lately I have been wondering if Smidge has a split personality. It's like there are two Smidges, Private Smidge and Public Smidge.

For instance Private Smidge at home offers one gummy grin after another no problems, but public Smidge is very selective and quite picky about who she'll interact with.

It could be that she's naturally a timid creature who is easily overstimulated or perhaps she thinks anyone who gets within close proximity is likely to install a cannula or long line. Either way half the village thinks they have 'lost their touch.'

In any event I decided it might help for us to get out a bit more and do a bit of socialising to help her to adapt.

Now seeing how Smidge loves me to sing to her, (the only person on the planet to appreciate my vocals) I thought I'd take her to the Big library to join in 'Bounce and Rhyme' with the other babies and children. Big mistake.

I don't know who was more overwhelmed me or her.

My first mistake was sitting in the leaders chair. (well..it looked comfy)

Once evicted I plonked my post pregnancy arse down next to it. That was my second mistake. Children kept wanting to sit on the leaders knee and bang their sodding tambourines.. It was nine thirty in the morning I tell you and I'd only had one cup of coffee.

You'd think it couldn't possibly get any worse when they bought out a whole box of instruments, shakers, clickers, drums.. What the heck!

Smidge stared up at me helplessly and I gave her my best 'we cant leave now' look before a toddler toppled over on a chair virtually landing in my lap.

Then a boy called Harry, who wanted to 'Hold the star on a stick' started to make his way towards the leader, but what was that I could see on his neck? A rash!

Obviously Harry was known for his star stealing antics because I could hear his Mother shouting 'Not this week Harry, you can hold it at the end... Harry come back!'

Yes Harry.. Go back ! Back away from the preemie!

So I'm sat there seriously hoping Harry has a dairy allergy whilst singing twinkle twinkle, a smile plastered across my face that says 'we love it here and we are having so much fun.'

Meanwhile Smidge seems to have gone in to a reclusive state and has decided it might actually be better to  go to sleep.

Obviously not quite ready for the Big library. Neither one of us.

Monday, September 5, 2011

Secondary nerves.

You know the last few days I have been taken by surprise a little by Mr.G  who has been acting kind of strange in the run up to starting secondary school. Well kind of strange for him that is! Yes, my otherwise fearless boy has been experiencing an extremely rare case of nerves.

The last time this happened  he was about seven years old.I remember it well, Stephen and I had taken him on a camping trip and there was a kids mini disco in the bar area.

‘Come on down to the dance floor and join in for a chance to win a prize’ Shouted the cheesy D.J with the microphone.

Mr G sat there looking a little bit antsy taking a long sip on the straw of his drink.

The D.J boomed out yet another tune and we could see all the little uns’ giving it all that on the dance floor when suddenly Mr.G looks up and he says..

‘Something weird is happening. I’m not sure how to describe it but it’s like I want to go and dance on that dance floor and yet I sort of don’t want to go’

Steve and I look at each other with a look of wonder and surprise.

‘It’s called feeling embarrassed’ I tell him ‘It’s quite common and nothing to worry about’

You see Mr G doesn’t normally do shy, embarrassed or introverted. Mr G does confident, assertive and upbeat. So you can imagine that when last night he asked my advice about whether he should put his uniform on before breakfast or visa versa I became immediately concerned.

Another sign that Mr.G was not feeling his usual self was on Friday when I took out the school handbook and started reading the student guide to him. He came and sat down on the bed and listened.

The last time Mr G was accused of listening was in year 2. But it turned out that he came down with a heavy cold a few days later...

So you can see how such a dramatic increase in his social consciousness has sent my anxiety levels soaring, I mean what if a teacher shouts at him and he cares?

What if he loses his bag and panics?

Having a big kid at secondary poses all sorts of new challenges. I’ve just got to remind myself that this is Mr.G we are talking about. This is the same kid that will go on any ride on the fair ground, the kid that remains as strong as an ox in the face of a crisis, that will take on any challenge without question..
This is the totally fantastic and utterly indestructible Mr.G!


Sunday, September 4, 2011

Ten things

Today’s post is going to be a positive one. I’m slightly conscious that my last entry didn’t end on such a positive note and I have left it lingering for far too long.. I mean what will my newcomers think? That I am an ungrateful  and self-indulgent ex- premmy mum on a mission to take down Neonatal Nurses? Must get with the times - After all, I have a great deal to be thankful for at this moment in time and there’s plenty of time tomorrow or any other day for a good rant. In fact there are many half completed whingey documents waiting eagerly in my drop box just begging to be published but today I refrain. Today I’m going to join in on a ‘meme’ for a little bit of fun and to remind myself that I truly am one lucky ex-premmy mum.
This meme is called ‘Ten things I love about you’ and I'm sure you can guess which family member I am talking about!
1.       Your voice.
I love waking up in the mornings to the sound of your chirpy little voice babbling away as you talk to the 'tiny world' creatures dangling above you. To me it is the sweetest music!
2.       Your light up face.
The way you look at me- I love the way your face glows when you spot me in a room and I when I glance at you you smile, but it’s only me that gets the ‘smile every time treatment!’. This makes me feel really special.
3.       Your broccoli giggle
 I love the way you giggle when I talk about the nutritional benefits of broccoli, why you find broccoli so funny is beyond me but it has you in fits none the less and it's a delight to see you laughing.
4.       Your determination
Even though you hate tummy time you always try your best to lift up your big old preemie head! Don’t worry though, you’ll grow into it and you still have the prettiest face!
5.       Your social side
You love to watch your brother play and interact with other children and it is just so cute to see you holding hands with your friend Isabella or to see you watching your cousin Bethany showing off her excellent motor skills!
6.       Your sense of humour
I agree there’s nothing funnier than pulling off Daddy’s glasses, I mean let’s be honest he should have gone to specsavers!
7.       Your communication skills
I love the way you speak up if there’s an issue! Why beat around the bush, you’re only a baby once!
8.       You’re a survivor
You have not had the easiest start in this life but every obstacle that has come your way you have overcome. You have amazed your daddy and me with your resilience and fighting spirit. We are so proud of you!
9.       Your inquisitiveness.
The way you like to explore your toys and the environment.. (it would be nice if you declined to take my nipple with you when doing this during feed times though!)
10.   Your patience
You are very patient with your mummy when she ‘strongly encourages’ you to do particular things to help you achieve your milestones and also when she insists on dressing you up  four times daily then of course there’s the bandanna thing!

So there you have it..my amazing little girl…Smidgy-roo. Lots to feel happy about, proud of and grateful for!