Anxiety And Feedback - A Very Fine Line

I don't know about anyone else, but when Smidge was going through NICU it felt to me like there was a very fine line between making a point known and being perceived as 'not coping'.

See if you're anything like me, then you'll like to take a view on things, particularly on the care of your own  child, After all, that's what being a parent is all about isn't it?

But what if being a parent, if looking after your child (or taking a view on their care) feels like a risk? A risk that you'll insult someone, upset them or turn the old apple cart... so to speak.

And does speaking up about things  make you even more vulnerable at an already hideous time?

This, to my way of thinking, is one of the many spins on parenting that one-day hubby and I were not prepared for, one of the many obstacles we had to over come when trying to care for our Smidge.

Little things.

Things like staff going from one baby to another and not washing their hands, or giving  Smidge milk that had not been warmed. Comments about how anxious I looked,  Or how much less-anxious I looked - they irked me, and practically eVeRyThInG  highlighted my lack of control, my inability to move forward in my role as Mum.

Mentioning these things though, actually speaking up, was like seeing a train pulling into a station at quiet rural location. It lets out a loud, long predictable screech and everyone turns their attention  to that particular area as the microphone announces 'The train has arrived at platform one'

Or in my case 'The Mother at bay six has made herself known'

Followed by 'Please be careful when entering bay six'

Of course this is all about how it felt. How seriously staff take parental concern and to what extent parents are deposited in to the 'stressed out parent box' I couldn't actually say, and it would be unfair to say that any concerns I had were not addressed in the most humane way possible.

 But actually speaking up? actually taking that step...when they were looking after my baby..

 that was the hard part.

Favourite Sorts Of Nurses

Everyone has their favourite nurses when staying in the NICU and for me, favourite types of nurse came in two different forms.

I loved the rule breakers. These are the nurses that will go that one step further. They put themselves on the line really. They say things that NICU nurses must surely never say, They talked about the day I would take Smidge  home, even when the future was looking uncertain. 

They share a little of themselves ...but not too much, not so much that I was left questioning their dedication to the most important thing in the world, My Smidge.

These sorts of nurses will conspire a little, but remain loyal to their team. They seemed to know the perfect balance between keeping my confidence and behaving like a human being. They raised their eyebrows in all the right places and come across as warm, personable and professional.

Then there are the clinical types. These sorts of nurses would see Smidge in the context of probability and variables. Not presenting as soft faced or warm hearted,  still they offered a strong sense of safety, making me feel that Smidge was in the very best of hands.

Each child they nursed, they did so with confidence. In some respects, it seemed they didn't need to do 'small talk' as their handling of the babies' along with the detailed descriptions of how their care was being managed was enough to alleviate any concerns. These sorts of nurses are efficient, communicative and very to the point. 

Smidge had over 150 nurses take care of her throughout her NICU stay and although my relationships with them were often characterised by an array of mixed emotions, each one bought something unique to the dynamic.

Who were your favourite nurses and why? 

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.

Breastfeeding A Twenty Five Weeker.

There's not many things that I'm proud about when it comes to how I dealt with /am dealing with the whole NICU experience.

Three months in intensive care is a long time, it's a very stressful place and one can only sustain one's good manners, gratitude and grace for so long.

However, if there is one thing I am secretly just a tiny bit proud of, One thing I look back on and think 'I didn't make a complete pigs ear of that ', it's leaving the NICU breast feeding a baby born at 25 weeks gestation.

Smidge finally started to take from the breast at around fifteen weeks of age, weighing four and half pounds at the time, but until then I was a slave to the breast pump. Imagine having your boobs yanked at by hissing green box every three hours, day and night for fifteen weeks! 

The Great Green Mean Machine

Luckily I'd had a week on labour ward leading up to delivery which gave me plenty of time to think about weather I would like to express or not. 

As it turned out, expressing milk was pretty much all I could do because you see, my baby she didn't want be touched and she didn't want to be held. She frowned upon stroking and as for rocking, well, at best it was considered GBH and at worst attempted murder.

Because I'd breast fed before, my milk flow was plentiful and, to be honest, if I'd have had to work half as hard as some of the first time Mum's I met, I'm not sure I would have been able to keep it up.

I was also very fortunate to have the support of One-day Hubby, which just makes a MaSsIvE difference in these situations.

Ironically, despite my pumping for Britain and managing to stock two freezers full to the brim, Smidge was largely disinterested in my milky goodness.

Much preferring the TPN drip feed, she would literally vomit green bile if you so much as mentioned real food.

Getting Smidge to tolerate Milk through a nasal gastric tube was a long and turbulent process with many, many set backs. Establishing real and actual breast feeding was a whole new challenge and seemed a million miles away at times.

Still, I'll never forget the first time she was put to the breast, rooting around wanting me! Needing me! Me I tell you! Me!

Ahem...excuse me nurse..but would you mind removing those wires and tubes, I've got myself a 'newborn' baby!

*Beams with Pride*

Initially, Smidge's attempts at suckling had to be managed very carefully.It was a real balancing act trying to make sure she didn't burn more calories than she gained trying to get her grub, but it the end we worked out together and Smidge carried on breast feeding until she was a little over a year old.

Was it hard work getting to that point? Yes.

Do I get slightly annoyed at Mother's who say they wanted to breastfeed their term babies but their baby 'wasn't interested?' Er yes.

Would I do it all over again if I had to? Absolutely and a hundred percent yes.

Mummy-bot and me.

When I first started writing about Mummy-bot I did not fully understand who 'she' was.

All I knew was that Mummy-bot played a vital role in helping me to sustain myself when I visited Smidge in intensive care, month after month after month.

And do you know what? there's nothing quite like dipping your toe back in the water to help reacquaint yourself with old coping strategies...familiarise yourself with old behaviours....

Nothing quite like a traumed up trip to resus and a week in paediatrics to pick up that bit of blog inspiration and reignite all that was flickering quietly in the back ground.

Mummy-bot you see, she was designed to deal with these situations, fully trained in trauma, Mummy-bot was programmed to cope with scenes that I was not humanly prepared for.

The thing is you see, I, (Premmy mum Leanna) could only take so much, because there are only so many arterial lines you can bare to see fitted, only so many squeals of discomfort and pain.

There are only so many hours you can sit crunching away at numbers and watching oxygen requirements go up and up and up.

There are only so many times you can watch your milk get rejected for antibiotics and drip feed.

Only so many apneoa's you can observe, transfusions you can witness and transfers you can endure.

How many times can you watch consultants gaze over your baby with a puzzled look in their eyes as they sigh and furrow their eyebrows and tell you about the new plan?

How many times can you hope that the new plan (that is actually just like the old plan) is going to work better this time because it's slower, easier, more gentle?

After a while you just switch off. And yet, you know you have to be there. Yet, emotionally you can not.

So the answer then, the solution, is Mummy- bot.

Mummy- bot know's when to intercept as her radar detects anxiety and feelings of discomfort.

So when that knot forms deep inside my stomach, A surge, a tug, a pull... and I want to turn away because I can't bear to look any longer, Mummy-bot takes over.

And I kind of know it's her because a feeling washes over me and my fear bridles down and quietly re-emerges as 'concerns'

Panic levels stabilise and I appear cool, calm and collected.

Emotions are seen from a far away place, representing themselves as chaotic, pointless, obstructive and unhelpful.

And everything that Mummy-bot see's can now be processed intellectually.

And Mummy-bot see's it all.

Battleship Live

The first Neonatal Unit Smidge stayed on was only twelve months old. It was situated five floors up in a state of the art building.

Thirty meters along a pale blue corridor you'd find the centralised staff reception area which was encircled by a large curved desk. In the background monitors would bleep high tones of varying speeds and frequencies.

If you swiped your hand over an illuminated sensor, the doors to the intensive care would swing abruptly open. It was very cosmic. So cosmic in fact, each time I saw that large rounded desk I was half expecting captain kirk to pop up and declare the status of our space craft.

Like a space craft flying through the night skies is how I remember it....and on our journey I encountered whole new sorts of species that I never knew existed.

Aboard our ship you'd find the very accomplished. These were the consultant Neonatologists. Very much the captains they strided the hospital corridors with confidence and pace. As experts in command, they prefer to keep their communications brief and to the point. Pleasantries included short curt smiles and occasional nods of the head.

Second in command were the registrars and the SHO's. As doctors they were knowledgeable and more liberal in their communications, But their toned down uniform and hierarchical positioning meant they often came across as learners, lacking both the conspicuousness of a consultant and the elegance of a nurse.

Next were the Gliders, these were the nurses, the native breed who appeared the most adept in these realms. They moved around the craft with warmth and grace, carrying out instructions with care and precision.

Finally there were the parents, the hostages, the ones who didn't want to be there, the ones who were stuck, lost and scared. They would try desperately to expand their knowledge base at quite rapid speeds in order to find a role, a purpose in this ski -fi reality.

Bunched together the hostages would try to determine what what was going on, what was the meaning of the various terms, risks,lingo and procedures..

Their vulnerability transcended the every day structures that bind groups together.

Class,Gender, Age and Ethnicity.... It didn't matter a hoot.

We had stuff in common, Our dreams had been shattered, Our futures were uncertain and we all wanted for the exact same thing...

A safe landing.

Anxiety +++

When I was on the Neonatal unit I saw some very brilliant examples of good care from the various doctors and nurses. Having spent most of my adult life working in and around the social care sector, I was all the more inspired by the people I met, who took such great care of Mother's like me. In between traumatic moment's I was taking mental notes, vowing to learn from these people and become a far better/more empathetic professional when it was all over.

In my unfortunate  state everything they did seemed to be amplified. If a member of staff did something nice, it wasn't just sweet of them, it was AMAZING of them, and likewise if there was something I didn't like it was a case of HOW DARE THEY?!

I think its a combination of many different factors that prompted such extremism on my part. The hormonal changes, the fear, the joy, the absolute unknown. Needless to say it's a really emotional time and that's before you even get started on the up's and downs of your baby's health.

Those of you who have read my pregnancy story will know that one of the things I was thoroughly unhappy about whilst being an inpatient on labour ward was the idea of being branded 'anxious' by the midwives. That's right, I seethed at the jovial jottings of the labour ward nurses when they would mark my notes with comments like 'Anxiety ++ or Anxiety +++

But scowling at their scribblings was never going to be enough and I couldn't settle until I had openly declared them totally unqualified to deem me anything other than pregnant.

See to me, It felt like I was being judged, that there was an expectation for me to be coping in a way that was different to whatever it was I was doing.

And okay, yes I did ask them a few questions, Okay more than a few questions, and perhaps the same questions several times over before asking another person exactly the same thing but hey! I was five months pregnant and hemorrhaging a pint of blood at a time for goodness sake!

Anyway, my report card pregnancy notes followed me in to the Intensive Care Unit after my Smidge had been delivered. 

Overwhelmed as I was, at first I didn't want to know a thing. I couldn't take in the words of the Doctors. I was mute.Yes me, Muted by a Doctor. But sadly it didn't last for long. After a week or so I was back on top form with the questions. Question after question after question.

There was little anyone could say or do to reassure me. It was because nobody would even dare to suggest Smidge might see the week out.no matter how much rephrasing I did!

One thing I could rely on though was the old commentary.

Anxiety +++ Anxiety ++++

Stop taking those stupid notes and tell me my babies going to be okay damn it!! Gee's I won't hold it against you if you are wrong! I will thank you for bringing me some relief.

One day, on a bit of a downer, I turned to one- day Hubby and I said to him

'Am I loosing the plot?'

'Uh?'

'Am I loosing the plot ...you know, dropping my marbles so to speak?'

'Er...no. Don't think so, why?'

'Because they keep taking these notes, about my anxiety, I wonder if it's you know, an issue'

'No...I think you're all good' he says barely looking up from his I-phone.

'So why do they keep saying it then and writing it down?'

He looks straight at me“I don't know. Anxious is a stupid word to use in a situation  like this, if you were in the middle of a war zone, you wouldn't go up to someone and say 'You're looking a little anxious there' would you?”

A quick search on google reinforced his point.

“ A person facing a clear and present danger or a realistic fear is not usually considered to be in a state of anxiety”

Everyone copes differently I guess and for me 'coping' was believing that I was holding it together, the persistent note taking and offers for counselling tore apart my little fantasy and put me on bumpy terrain.

No, I needed to believe that how I was feeling and behaving was a totally normal reaction to the situation and entirely appropriate. Because if I didn't have that much, then I couldn't have gone in and faced each day. 

Thank you One-day Hubby for always knowing the right thing to say and for believing in me. It's what kept me sane.

Cot Side Chatting

When I first started visiting Smidge on the NICU in the early days, I thought a time would come where I would be able to sit down with a doctor and have a good old chin wag about Smidge and how she was generally progressing.

I kept asking One-day Hubby 'When will we get an appointment?'

'What for?' he'd say.

'You know to talk about Smidge..in detail'

'Well the doctors are here all the time, you can talk to them whenever you like.'

But for me, chatting with doctors at the cot side was like bird watching at the fairground, it just didn't make any sense.

With so much invested in her getting better, I wanted to know everything there was to know. Because for some strange and ridiculous reason, still unbeknown to me now, I thought this would be helpful.

But where as the flashing red lights and monitor alarms would send my heart plummeting, The doctors would only briefly cast their eyes upon Smidge's numbers, then, confident the nurses had everything in hand our conversation would resume. 

Only now, for me, the words.. they wouldn't make any sense - I was back in hyper alert mode, one ear to the Doctor and the other to the monitor.

This two way attentional processing meant I had to by pass the details (which would have stretched my intellectual ability, even at the best of times) Instead I tuned in to the rhythm and the tone, my ears pricking up at the use of important key words such as 'worried,' 'pleased' or 'reasonably well'

Even with the responsibility of engaging in these two auditory processes, I still has to make sure I heard something nice to over-analyse ponder over later on when I was at home and monitor free. My task was to make sure the doctor didn't leave our convo with out dropping in at least one of my favourite key words or NICU lines.

This sometimes involved a bit of repetition on my part and some stylish rephrasing on theirs but hey, we'd get there in the end.

Some of my favourite one liners..

Nice And Pink

Lately I've been thinking a great deal about some of the issues that have prompted me to place a big fat question mark over my Mental Health and I ask myself.. am I well recovered?  And how well did I  'cope' back then?

It's mid afternoon in the intensive care unit but to me it could be any time of day. See I can't turn my attention to the day time skies because I'm busy you see, being a Mum.

Only I'm not having a cuddle or changing a nappy because that would be too dangerous. No I'm watching my baby through a clear plastic box, I'm watching her chest rise and fall.

If I avert my gaze ever so slightly I can see her numbers. But I mustn't be seen. Looking at numbers, it's not 'My Job' I should “look at the baby.”

The numbers sway this way, they sway that way,

they go down,down, down and up, up, up.

Wait, she seems still, is she moving? The numbers plummet and the alarms sound.

Come quick someone!

Stimulation.

Oxygen,

Doctors

Screens?

'You might want to wait outside a minute'

Outside in the corridor I stand alone staring blankly at the reception desk. A lady picks up the telephone 'Good morning, NICU can I help?'

Doctors stride confidently down the corridors with clip boards and focused looks.

I peek through the tiny square window back into intensive care nursery, but my glance is met by the tall white screens that surround Smidge's incubator.

Beyond those screens the doctors are working on my Smidge and it's taking time. A long time...

What if...............??

I see a familiar face coming towards me from another direction. I try to catch her attention. I am unbelievably scared and frightened.

'What's wrong? She says. What is it?'

'I don't know, It's my baby... they have screens up, they sent me out, I don't know what's happening..'

'Just wait here a minute'

The fear -struck panic has overcome me, I feel as though I've just come off a fair ground ride, the world has slowed down and I feel sick, very, very sick.

But all around me the world carries on, utterly oblivious to my queezy turmoil. A receptionist strolls down the corridor and places a box of biscuits down on the reception desk and the staff gather as they contemplate the offerings of a family choice biscuit selection box..

I am aware that mentally there's only two ways I can go at this point in time, Biscuits and telephone calls or Baby resuscitation and the telephone and biscuits route seems to be winning...

Fleetingly I wonder, should I call One-day Hubby?

'What's the point?' I tell myself, 'What's the point of inflicting this on him at this moment in time?'

The Doctor reappears in the corridor.

'It's Okay' She tells me. 'She's pink now'

I take a a moment to process the words before looking up tentatively and asking 'Are you sure?'

'Yes she's stable and nice and pink now'

Tears form under my eye lids but I can't quite allow myself to feel relief. I scramble around in my brain to find the words that will express the gratitude, confusion and fear that I feel but once again they escape me, Embarrassingly I ramble 'Are you really, really sure?'

'Look at me' comes a kind but authoritative voice. 'I am a consultant, and I am telling you that she is Alright, Okay?'

'Okay, I'm sorry, I just...I..'

'It's fine,.... and look!...... You can go in and see her now'

Go in and see her... Yes, go in and see her now, of course.

Attachment, Fear and the Neonate - Please Mind The Gap.

Many moons ago, when I was going to be a  * somebody * I studied Psychology at university. I became a keen follower of Bowlby who devised the attachment theory. I think I liked Bowlby's theory because it enabled me to blame any personal flaws or relationship difficulties I had on my mother's nurturing style. This was most convenient and served me well for years, until of course I had my own children, then I started to think his theory was WAY overrated.

Naturally when it became evident that Smidge and I were to be separated at birth, I was worried that the invasive procedures, necessary to save her life would impact on her ability to engage with me and others on a social and emotional level.

This is because according to Bowlby, a child's later social and emotional relationships stem from the mother's (or care-givers) ability to provide consistent and good quality care from birth and throughout the early years.

Anyway, I decided to ask one of the paediatric consultants about premature babies and attachment, to see if I could find out more.

'Actually, what we find is, it's the parent's who have the difficulty attaching themselves, rather than the babies' I was informed.

'What utter codswallop!', I thought, Imagine not attaching yourself to your own baby?! That certainly won't be me! And I toddled off thinking, if that really is the only issue here then I've  got no reason to worry at all.

Fast forward three and half months...

I'm sat in the Neonatal Unit waiting to be called in to a discharge planning meeting, Smidge had just had her last blood transfusion the week before, the result of a 'funny turn' that caused her to go her to go all floppy.

All though by this point Smidge had started to learn to breast feed, I wasn't pushing her as nearly as hard as I could have. The reason? I knew the minute breastfeeding was fully established, We'd be asked to leave the hospital and I was terrified! After four months of being around medical professionals, I was institutionalised. I didn't feel nearly qualified enough to take on the task of caring for her by myself.

A head pokes itself around the door.

'Are you ready then?'

oh no...oh no..they want to talk about the going home thing.Yay...its good...it's good...its the*GoInG hOmE * thing, I'm er....happy, yes, that's the right emotion.

Home? HOME? No we can't go home! what if she needs a transfusion and I don't notice,? What if her stomach gets distended from milk intolerance, how will we xray her? Is it safe not to have a full blood count for nearly two weeks? Think, think quickly think, a reason, a convincing reason to stay a bit longer...

As I took a seat in the meeting room it quickly transpired that my plotting for an extended hospital stay was a complete non starter. The ward Matron smiled at me across the the room before announcing (in no uncertain terms) that Smidge will in fact be coming home at the very latest, next Thursday'

* Gulp*

Us three months later

You're the Mummy!

People take for granted the experience of going into hospital, having a baby and then coming home soon after, they really do! Okay..so all new parents have to humour the midwife/ health visitor for a period of time but once they realise you’re not a maternal failure or an incompetent idiot, a sort of mutual ditching occurs and all that's left to do is put in the occasional appearance at the baby clinic.

But whilst the vast majority of Mother's appear to move seamlessly from the role of 'Pregnant Woman' to 'Mother of Child' there are thousands of woman just like me who experience a different sort of shift. Yes, I'm talking about the shift from 'Mum-to be' to 'Hospital visitor.'

In the early months, following Smidge's birth, I'd enter the intensive care unit each day to find her lying in the incubator, her features not yet apparent for all the paraphernalia covering her face.

Beside her would be a dedicated guard nurse, overseeing her care. 

Sitting down beside her, I would brace myself for the inevitable progress download before asking if it would be okay for me to touch her today.

That was the start of our bond, but rather than it being an intimate and all encompassing experience that excludes all else, it was a nurse led, risk assessed, machine supported, supervised encounter with V.I.P viewing opportunities.

Even the lightest of touches would throw Smidge in to a state of utter distress, she'd refuse to breathe,set the alarms off and prompt all sorts of unwanted attention. Hardly the sort of reception I had in mind when I envisaged our early relationship blossoming.

Anyway, because of instances like this, nurses play an important role in facilitating the interaction between parent and baby. This of course makes it seem like they are the boss of your baby, a most curious dynamic that I blogged about in my December post 'Im the Mummy'

However as time moves on in the Intensive Care Unit, so do the babies and as they become more stable and Parents become more relaxed, the nurses become all together more liberal about the level of parental involvement. It is at about this time that a second shift seems to occur , the shift from 'Hospital visitor' to 'Mum with baby'

But this does not always come across as a natural and seamless transition, and in cases like mine you can turn up one day and all of a sudden it's like you're expected to be the Mummy!

Yes..no longer do you have to ask permission for a cuddle it seems, you suddenly get a sense that you are now permitted to make ground breaking decisions like weather to change a nappy or wait for it..a cot sheet.

But since the issue of maternal redundancy/role theft is one that is brushed under the carpet, the change in expectations is not always put to you in plain English.

Once you have decoded the unspoken word, one must act quickly to prevent judgement. For if one does not seize the opportunity to do ones maternal best at all times then one is putting ones self at risk of being deemed 'unbonded' or negatively affected by the NICU experience.

I'll never forget, one day, about eight weeks after Smidges birth, The nurse looking after her took me down the corridor and pointed to a wall that had pictures on it  illustrating 'Kangaroo care' ( holding your baby skin to skin on your chest) She started to talk to me about all the benefits, like I'd never bloody heard of it!

'Are you trying to tell me I should take her out of the incubator for some Kangaroo care?' I said, frankly.

'I'm not here to tell you what to do', she said 'Only you can decide that'

So that night I went home and I mulled over our conversation, and concluded that I felt quite offended. It seemed to me that the tables had only just turned on me, and now, after I had longed to take the lead on her care for so long, It was being implied that I wasn't meeting her needs and I was really hurt!

See for me, bonding with my baby wasn't about what I did or didn't do, It was about being the one who decides what to do for the best. It was about taking on the role of nurturer, and nurturing how I wanted to nurture and a little bit of space, to work out how I was going to go about it certainly wouldn't have gone remiss!

What about you? did you have any issues with role reversal when parenting in the NICU? I'd love to hear...

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.

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.

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!'

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.

Holding on to your Marbles in Intensive Care - The Contributing Factors.

Today I wanted to write a small piece about  holding on to your marbles  when you have a child in intensive care but before I do this I just want to say, if you have suffered mental health problems as a result of a NICU stay then please do not be offended. Marbles are notoriously difficult to hold on to in  situations such as these and its probably fair to say I saw a few of my own roll down the corridors throughout my three month NICU journey.

Now in previous posts I have praised the amazing work of the staff on the intensive care unit, not just for the delivery of life saving interventions but for helping me through the really difficult times. Well that post was written on a good day..

In this post I want to explore the pressure of the intensive care environment  and what happens when it all gets too much and the care starts to impact in a negative way.

let me explain..

When Smidge came into this world born at 25 weeks gestation I knew it was an odds game.The odds of survival, the odds of a brain bleed, the odds of long term problems. Life felt like a marish cross between holby city and a game of dodge ball.

At the time,although the situation was notably hideous,it was hard to see the effect it was having on me and how I was coping as a result.

In the initial stages, making my way to the intensive care unit was an utterly terrifying experience. Every time a doctor walked in my direction I would think they were coming to take me in to a side room and give me some terrible news. I mean seriously, I must have looked like a wild rabbit on acid.

Still to this day I am baffled about my then sense of rational. Was it paranoid to be thinking as I did or was it entirely appropriate? Thoughts such as these would then give rise to other questions like 'Am I coping ok?' or furthermore 'does everyone else think I'm coping okay?'

And this is the thing with mental health I feel. Someone has to draw a line somewhere around what is considered 'healthy.' But where that line is drawn in different areas of health care is a very interesting thing.

The prolonged uncertainty and fear that comes with having a baby born at 25 weeks is inevitably mentally challenging, but to what extent that fear spills over and impacts on to other thought processes is a very curious thing.

I was often deemed 'anxious' for asking lots of questions and that used to really rattle me. As a social care professional I prefer to be the one making defining statements and it was seriously painful being the subject of others' observations.

You see I have never been a watch and wait sort of  person. I deplore guessing games, loathe brain teasers and throw a paddy if I cant find my car keys and when I was in the NICU I wanted answers regarding the health and treatment of my child. What I did not want is value judgements on how it was felt I  was coping.

Below I have listed some of prize winning comments I received from some of the less conscientious medical professionals, which, to be fair to the vast majority, were far and few between.

1. "At least we can have a laugh with you now, it's taken a while" (oh sorry,did I leave my joke book in theatre?)

2. "Well you are one of our more anxious Mums" (Can I have a rosette for that please?)

3. " You're looking a lot better today than you did yesterday" (Thanks..I think..)

4. "At some point you are going to have to start enjoying your baby" (And when would you most like to see that..before or after she turns blue again?)

I guess what I'm trying to say, in a rambling ranty sort of way is this:

Its a bloody awful situation when you're own child is fighting for its life.

It's unbearable that no-one can promise you the outcome you so desperately hope for.

It's miserable that it goes on for weeks and weeks and weeks.

But  sensitivity costs nothing..

So don't tell me how I look or how it is that I should behave.

Don't speculate about  how I feel or compare me to others.

And if you must judge me, then may you do so quietly or upon invitation because it might just be another day at work for you but for me, just waking up and walking down that corridor everyday was an achievement.

For me, It was the difference between holding on to my marbles or loosing them.

I'm the Mummy!!

Parenting a child in the neonatal unit is a bit like putting sugar on frosties, Somehow it feels like you're just not needed.

I remember those early days, the  feelings of helplessness as I loomed in the background,clinging to hope, terrified to invest anything more than a physical appearance.

I think it was  my second visit, post c-section when upon entry,it appeared to me as though all the parents and the entire staff team were focused on me. I turn to Steve, who is propping me up with both hands and I say 'They are all looking at me..'

'They are all looking at me and they are thinking..'there is the mum...there is the mum of that tiny baby'

'Don't be silly' says Steve as I blubber snot into his one remaining clean shirt.

'They aren't thinking that at all, they are thinking.. there is that mum, so off her head on morphine,she needs propping up'

'Really?'

'Really.' he confirms, giving me another hug.

In truth I don't think I ever fully accepted my role as a NICU mummy.
The doctors and nurses did all they could to help me feel a part of the team. They offered detailed explanations and updates,they tried to encourage me to change nappies,  put on new sheets  and assist with tube feeds.

The difficulty  was I didn't want to be a part of the team. I wanted to be the one in charge and frankly, being thrown the odd nappy wasn't really doing it for me.It just felt a bit like being assigned the role of 'baby' in the game of mums and dad's. You just just have go along with everyone else's ideas, let out the odd cry and hope that one day you get to play mummy.

Similarly, as is the case with all well behaved children I waited patiently for my turn.Well at first I did, but then what would happen next?  the rules would change, and we'd be carted off to a different hospital and there would be a whole new staff team.

When we arrived at the fourth and final hospital,after the sixth transfer I was all but shouting 'I'm the mummy, it's my turn!'
I would turn up with little piles of carefully ironed sheets for the incubator, and muslin squares to go over her 'nests.'

'She doesn't like those  towels in there'  I'd tell the nurse

 'She likes muslin squares, they are softer on her skin' Then I would race down to the milk kitchen and get the milk before she had a chance to even think about it.

Of course its not that neonatal nurses don't understand a mums  need to feel involved in their babies care, On the contrary they are always 'saving poo's and such like, but  gestures like these,although appreciated, did little to enhance my sense of maternal well-being .You see I didn't want to be 'invited to participate' and I didn't want to do jobs that any old nurse could do. I desired independence, craved exclusivity,and the only way it seemed I could achieve this was to shunt the nurses out of the picture and 'take the reigns' myself.

The nhs bed space dilemma did add to my stress. It was difficult always being on new  territory. Also,different hospitals vary in the approaches they take to parental involvement and like the over keen advocate that I was,  I never ceased to miss an opportunity to highlight inconsistencies in care.

'You don't know her as I do..' I'd gloat to the nurses whenever I disagreed with a decision.

'I have been with her all along, you haven't ' (so.. na-nah-na-nah-na)

As embarrassing as it is to recall, this was none the less  all a part of my NICU experience.Looking back  I feel the utmost  admiration for the neonatal nurses who bore the brunt of my emotional distress.

Who smiled when I smiled and acted appropriately somber when I looked stressed or angry.

Who worked with patience, kindness and humanity when I was confused, tired and upset.

Who showed  relentless compassion, courtesy and respect when I was being an argumentative, self-righteous old bag.

And,  who always found the time to do all of these things in between delivering life saving interventions, administering drugs, writing up notes and tending to the countless needs of a case load of babies.

It really is a truly amazing job that they do! :-)