The Loneliness Of NICU.

It's strange because you can have the most well meaning of nurses looking after your baby, You can have the very best of doctors  leading their care, You can have the most supportive family in the whole world and yet  still you can feel so incredibly alone when you have a  baby in intensive care.

The issues that caused me to feel isolated were things I didn't want anyone else to know about, they were deeply personal to me and even the slightest suggestion that others' had cottoned on to 'the inner me' had me flaring up inside with anger and resentment.

The problem that I had was, there were two sides to this  Premmy Mum. There was the side that went in to the NICU each day and put on a performance. The performance that  everything was good, fine and dandy. The side that sat along side the incubator trying to find words for a foetus that couldn't be touched, couldn't be held,couldn't be heard.

Then there was the secret Mummy that was heartbroken. Heartbroken because what she had wasn't what she had planned, yet she knew she was lucky to have a baby that was hanging on in there fighting for her little life.

And this Mother, the heartbroken one, could not bare the idea that she would be perceived as unbonded, disconnected or uncaring. Because she wanted that baby to live so much. Nothing in her life was more important or more crucial than that very thing.

So when, after a week a nurse held up a small premature baby nappy and asked me if I wanted to change Smidge, I was deeply hurt and offended.

'I don't need to change a nappy to connect with my child' Said the Heartbroken Mama with in.

'I'll change a million nappies when I get out of this place, and I'll sing to her, and I'll rock her and do all of the things we can't do here and we won't need you, bossing us about or leading the way, not now and certainly not then'

But the NICU Mum Smiled politely. 'You do it' she said sweetly.

The nurse nodded her head with understanding. She thought I'd declined because I didn't want to be involved, that I wasn't 'ready' to care for  Smidge.

I was ready.

I never stopped being ready.

I wasn't ready for 'being allowed'

I wasn't ready for 'being permitted'

But always,always I wanted to do my personal best for her.

But when staff came in with all their guidance and schedules, I didn't feel I was doing my best. I didn't feel I was being a Mother at all.

Which is one of the reasons I think this publication by Bliss is so important.

This booklet explains everything to Parents. In a nutshell, it tells them how they can learn to read their baby's cue's so that they, the parents may make informed decisions about  how to interact with their babies, when they might 'like' to be touched or handled.

And because this publication is written as though it is coming is from the  baby, it is disarming, endearing and empowering to Mum's in this situation.

I think these should beside every incubator as standard.

Eighteen Months down the line and four NICU's later, I think a great deal about what I was encouraged to do as a parent. There is no doubt at all that leading  the care of your baby helps the bonding process and affects the attachment relationship.

But NICU's vary hugely in their approach to how this is managed. Some unit's are very 'precious' over the babies with nurses leading the care in all instances. Bizarrely it was being in the two level 4 surgical units that enabled me to get more involved with Smidge, which was ironic because it was then when she was at her most unstable.



I'll never forget walking in to the surgical unit after Smidge was transferred. There was a big notification up on the wall. It read:

'ALL BABIES ARE ALLOWED OUT FOR KANGAROO CARE AT ALL TIMES UNLESS A CONSULTANT STATES TO THE CONTRARY'

It was music to my ears. Finally I could choose! Finally I could start being a Mother.

So If the sickest babies in the country can be cared for by their own parents.. Why can't all unit's commit to the same principles?

Intellect and Instinct

Quite often, animals who are bred in artificial environments end up rejecting their babies early on because they don't believe that they will survive and who can blame them?

Thousands of years of evolution have caused these creatures to develop powerful instincts, Instincts that equip them to give birth to and nurture their offspring in a way that only they know how, In a way that keeps them alive, protects them and prepares them for life in the wild.

So when a Lioness, Tigress, Giraffe or Elephant finds themselves clock watching for the next bucket feed in concrete  enclosure with windows looking in, you can easily imagine why they might think...what's the point?

Just like a zoo animal, this here Premmy Mum had those doubts and worries, those fears and concerns. What was this place I was in? These machine's have nothing to do with what I'm geared up to provide. Who are all these people interfering and watching me? (The looking like an elephant wasn't so far from the truth either)

But unlike my primitive friends, as a human being I have cognitive functions that allow me to see things from numerous different perspectives, the ability to understand what others may be thinking and why they act in the way they do.

So when I saw these doctors and nurses interfering with my baby, stealing my role and keeping her safe, I accepted it, tolerated it, understood it but it went against all that felt natural, against everything instinctive.

It was no wonder it was confusing, these two processes occurring simultaneously, I felt torn between what I hoped for and what I felt.

It was the intellect that reminded me to hold on to tomorrow, to the idea that I could one day take over, be the Mother I wanted to be, knew I could be. It was intellect that took me to the unit each day, that motivated me to express the milk, to sit along side an incubator hour upon hour.

But the instinct was a selfish and nagging source of contention. A persistent and constant reminder that my baby was not my own. Not in my arms, Not protected by me. Not nurtured by me. leading me to believe on an unconscious level that my actions were fruitless, inconsequential, pointless.

So when I think about the issue of bonding, of connectedness of being a 'good' mum. Do I feel guilty? 

A little.

But I also see that I fought my way through the fear, cuddled through wires,machinery and bleeps and found some hope in hideousness..

And for that I feel okay.

Control, Trust And Bonding.

One of the worst things about Smidge being born so small was having to wait so long to be a Mum to her. Waiting like that, it wasn't a good thing for me, it wasn't a good thing for Smidge and it wasn't good for the teams who looked after her, let me explain why.

When she was born tiny and sick, the instinct was that I wanted to protect her, Yet at the same time as wanting this, I knew  the sort of protection I could offer was about as useful as a broken umbrella in torrential rain.

So imagine there was a downpour  and a team of people came running with the biggest and most weather proof kind of umbrella ever ( I'm thinking  ovaltine light  here) You'd be pretty pleased right?

You wouldn't want to snatch the umbrella away from them and tell them that they are doing it all wrong, that you have googled umbrella putting up styles and are pretty sure that the technique they used was open to questioning, would you?

No of course you wouldn't, not unless of course you were a little bit upset that somebody went and did something that you wish you'd done, like got a medical degree for example.

And that's how I was in there,back then in the NICU. Upset, scared and untrusting.

I didn't want to admit it, mind you, didn't want to be seen as not coping.What if they decided I was too messed up to look after her?  that is If and when looking after her became an actual possibility. 

But these feelings I had, they wouldn't just slip quietly in to the background. The need to be a Mum, to nurture, to have control, wasn't going to just dissolve in to complete nothingness like it didn't matter.

So every time a doctor or a nurse stepped in to help Smidge,I felt sort of numb. 

And this numbness that came day after day after day, It chipped away at my maternal being. And every time I lost a part of that, I think I must have felt that little bit more removed,that little bit more shut out, not needed. 

The sense of being removed like that, It wasn't just about being scared. It was about being detached from that instinctual need, the one that drives the desire to connect, to have, to hold.

And when you let go of those things, because you have to, all that you have left to connect you to that child actually, is the fear, the concern, the worry.

So could I put my trust in to the doctors looking after her? Could I jump under their umbrella and be protected from the storm?

No I could not. 

Because in the absence of  cuddles, of contact and of care, The fear was all that was left.

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.

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!

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.

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