The Plot (What Plot?)

Oh dear.

I think I'm loosing it.

The plot that is. 

Jesus Christ, it's only tonsillitis and here I am carrying on as if it's some dreadful incurable disease.

This morning I came very close to handing in my notice at work and contemplating running away. Far far far far away, somewhere where there are no viruses and no responsibilities.

Its *only* tonsillitis. So is that why my daughter was blue lighted to hospital?

Am I overreacting? Have I gone mad? Has that last bit of sanity snapped and my sense of rationality gone completely awol?

Bad Timing

This is not what I needed today of all days.

28th March 2011

After a sleepless night for everyone and an increase in oxygen requirements and slowly worsening blood gasses, Wriggles was transferred from the respiratory ward to Intensive Care. Within 20 minutes she collapsed and was sedated and was placed on a ventilator.

28th March 2012

After a cough worsening, we went to bother our GP for the second time in 24 hours. We saw a different doctor who took us seriously and decided that we weren't going anywhere and rang through to the paediatric SHO at the hospital to refer us. Wriggles was slipping into respiratory distress as the call was made and the poor GP wrestled with the idea of bluelighting us or using "standard" hospital transport which would take over an hour. She decided that it was more urgent and so a flashy ambulance soon drove up. Off we went to our favourite place in the world, the Great North Children's Hospital where we trundled off to good old Ward 6, the Emergency Assesment Unit.

"Ooh hello, hasn't she grown!" chirped an old face as soon as we came in. Three doctors and two nurses instantly recognised us; it has been seven months but obviously we have hung around there far too much.

20c

Sometimes, I absolutely love life.

Dr Mummy

Whatever else goes with being a parent to a prem, one thing you do get out of the experience is some new skills and vocabulary. You can add a boost to your CV and sound quite brainy when needing too, by rolling out some swish new medical jargon. Furthermore you can confuse the doctors by beginning to give the impression you are a doctor-in-training and baffle and possibly irritate your GP and Health Visitor as you sit and patiently explain the notion of corrected age for about the fifteenth time in a row.

In my NICU, parents on discharge were automatically trained in infant first aid, primarily resuscitation and CPR and were given a nice long list of warning signs and pamphlets about this that and the other. Coupled with a baby on oxygen (more basic training) and at a year old a brief period of nasogasteric feeding needing further basic medical training, and I can generally hold my own with a set of medical professionals until they get very technical and clever.

The downside of this is sometimes you do go to see a doctor because you actually want guidance and advice.

Fiona

In the last few days I have had a letter from my old paediatric social worker Fiona, telling me that our file is due to be officially closed. She has said she will always be happy to reopen the file and will always be happy to give advice off the record but as we have been without complex medical needs for over six months, for now that is us done and let loose into the big wide world. Although we have not been reliant on her for a long time, it still feels a bit like taking the stabilisers off.

I was first assigned Fiona when Wriggles was less than 24 hours old. In my NICU unit, all parents with children under a certain gestation or those that for one reason or another were clearly going to have an extended hospital stay, automatically were given a health-based social worker. This aggravated many already fragile parents at first, assuming that the referral was a comment on their parent skills or social status, but as it was stressed by the kindly team it was actually to support us and make the neonatal ride easier. I don't know if this is uniform across neonatal units or if it is a service that everyone would welcome, but personally I found it a lifeline. Fiona became a confidant, friend, financial adviser, fundraiser, housing officer, counsellor, advocater, personal organiser and voice of reason at very low times.

12/52

Knowledge is Power

So said someone clever and/or famous.

But is it?

In most situations, absolutely. No question about it. There are some situations and circumstances though when ignorance is bliss. Neonatal is one of them for some people. When I had Wriggles I had next to no knowledge of premature babies. I had some sketchy knowledge of Bliss as a family friend born with a congenital heart condition was an early case study but that was about it. Shortly after I came round after a trip to theatre I wad given some leaflets, two by Bliss and one published by our neonatal unit as a brief guide to having a premature baby. I think I could now recite them by heart; I read and re-read and re-re-read and re-re-re-read and, well you get the picture. I soon knew about positioning, the benefits of breastfeeding and the phone numbers for the unit but although I couldn't fault the information, I was no closer to knowing anything about actually possessing a premature baby beyond sitting next to an incubator. I knew none of the risks, the dangers, the infections and how quickly they take hold and then leave, I knew none of the pain and the breathtaking highs of having a miniaturised baby pressed against you.

11/52 Mummy, I am NOT IMPRESSED

 

Happy happy happy

So far I am having a really really lovely day (apart from being at the point where I have almost lost my voice due to a sore throat and the Cold of Doom that is doing the rounds). This morning, after a leisurely getting ready, Wriggles and myself went down to the Tiny Lives Nearly New Sale which is in support of our local Special Care unit where Wriggles spent the first two months of her life. Recently I have started helping out with them, taking care of some of the online publicity and it is so rewarding to see the amount of people that turn up and to be part of something that means so much. Marina, who set the sales up is both lovely and inspirational with the amount of work she puts in every time to pull them off. Hopefully after today, they will have manged to have the funds tipping over the £10,000 mark. I managed to pick up some books, a jolly fleece and a hands and foot casting kit to capture my baby's imprints before she well and truly grows up.

"Reassurance"

I am always surprised by a common reaction to prematurity and low birth weights. I'm not speaking for all or other premmy parents as they may not hold my views; everyone has their own opinions and anything surrounding personal experiences or children is so intensely intimate that we will all deal with situations and people very differently.

My daughter was born just under 28 weeks weighing 1090g (2lbs 5oz) which roughly is on the fiftieth centile.

"That's a really good weight."

"It's a really good gestation."

"It's really all plain sailing now isn't it?"

"Ah well, these things happen. It's fine now."

Now. Just because Wriggles was born at a good weight for her gestation, I do not count 1090g as a good weight.

The Good, the Bad and the Health Visitor

First up, excellent news that in a fortnight Wriggles has gained 220g! How this has happened, I have frankly no idea as she has been bypassing all feeds like nobodies business and is only interested in sucking Quavers which are not full of calories. However, I am not questioning this gain but merely proudly putting my little spot around the 2nd centile on the dreaded chart and am prepared to tell any paediatricians to bog off if they think otherwise.

Rather irritatingly, going to baby clinic for these frequent weigh-ins (not by choice but on orders of the hospital) means that I have to see the Health Visitors more often than I would otherwise. I am sure that out there, there are some marvellous health visitors, and although mine is not terrible, she is very good at winding me up. I know she is not trying to, and she has admitted she has little to no knowledge of prematurity or feeding disorders and doesn't really know how to help mothers who struggle with mental health, like PND or anxiety. But each time, her well-meaning but ignorant comments sting and I go home beginning to question again if I am good enough or if making it up as I go along just doesn't cut the mustard.

Frustration

Generally, I have made my peace with oral aversion and it's place in our lives. I have accepted that we are in for the long haul and that one day some years down the line, I will look back with relief and wonder how myself and Wriggles kept our sanity in tact. I understand that there is no magic cure or divine intervention, no magical point where suddenly it is gone. And then, there are the increasingly rare days like today where I want to wail and stamp my feet and scream that it's not fair and got and hide in a huff. I hate feeling cross with something I have no control over and something I don't want to show Wriggles that it affects me, lest I make it worse. I save my frustration for nap times and bed times and cross walks home, where I can breathe and seethe. I'm not annoyed at my daughter, I'm annoyed at the universe and that some people will have to struggle while others don't. I hate that I get annoyed and snappy with people I care about who try and make helpful suggestions, that have long been tried. Very few people understand that it's not that we haven't hit on the perfect way of eating or the perfect food, but that the problem is the entire process itself. It is part behavioural, part sensory and part psychological; and all in an essentially very young child who is not equipped to deal with reason.

10/52 Wriggles 1-Oral Aversion 0

 

Mixed Feelings

This week several things happened which I have very mixed emotions about. None of them are huge things and were all things I either half-expected or knew was going to happen.

Following a letter from the council telling me that in line with new government regulations my rent would be going up nearly £10 a week which is quite a lot in my budget, I have caved in and applied for some housing benefit. Although my flat is privately owned, it is council managed. The rent between two people would be quite reasonable, but as I am only one and not on a huge wage, any increases are more than usually unwelcome. I have thought about it on and off since Wriggles was born and I knew I would be a single parent, but with working part-time and topping up with tax credits, I have been proud that so far I have been able to manage and cover it all. It made me feel more independent and that I was doing something good for my family. With an increase though and none in my wages, it is just too tight and I need some help until Wriggles is older and I can work more. At present even if I took on extra hours, the cost of childcare will render these useless especially with no local family to soak up babysitting duties. Plus I would be (more) shattered. Although I'm relieved to have such a system available when people do just need a helping hand, I wish it wasn't me having to use it. I know it's not forever, it just feels like falling into another stereotype.

When I got back from doing this at the library, I found a letter I have been expecting since October. It is Wriggles' referral to Speech and Language, announcing a home visit in just under a fortnight.

Help

Suspiciously similar to above

MISSING: One sweet natured placid curly topped giggler. Aged eighteen months but pocket sized. Four and three quarters teeth and a very cheeky face. Likes pulling books apart, cuddles and Christmas Hedgehog's nose. Dislikes food, getting out the bath and sand. Often found with only one sock on.

FOUND: One pint-sized monster causing havoc among anyone with a handbag, wearing shoes and/or socks and a Houdini like ability to vanish in a puff of smoke. Threatens to bite anything near it's face and eat bubblewrap and cardboard boxes by the shedload.



I don't know when it happened. Somewhere in the last few weeks since the crawling began and independence loomed onto the horizon, Wriggles, at least I assume it is still Wriggles, has left behind the calm and laid back loony baby stage behind, and with no warning whatsoever has become a vandal. Not just a vandal but a thieving vandal with the attention span of an attention deficient hyperactive gnat on drugs.

"Normal"

Yesterday morning I was idly listening to the...gulp...Archers omnibus, whilst chasing a newly crawling Wriggles around when I heard the storyline about a heart attack. Bloody Archers, first they have the premature baby storyline (reduced me to hysterical tears over the dinner table at Christmas just weeks after Wriggles reached 'term') and now one about hearts! A lump rose to my throat and I was transported back to the Intensive Care waiting rooms of my father and beautiful daughter within seconds, scared and tired in an empty clinical world.

I also fittingly read a discussion on "normality" after trauma and if you ever return to your former state or feel like you fit back in with the world. Can you, and are you, 'normal' again?

9/52 Break for Freedom

 

Tweet

I love birds.They both symbolise freedom and time; the turning of seasons and the growing up process. It is curious that their real life habits are quite far removed from the genteel qualities we have associated with them through anthropomorphism. I am far from being a 'twitcher' type but I have learnt to recognise their names and songs, and can happily watch them for hours flying backwards and forwards and practising their songs. They seem so full of character and it is easy to see how humans attributed symbolism and personalities to them.

Star Patient

A proud moment today as Wriggles crawled onto the trampoline at our rebound therapy session and her physio Jemma exclaimed she was her "star patient". This is brilliant news and such a boost, after more weeks of food refusal and a bug creeping in. Although Wriggles is the most able member of the group, it is still lovely to hear that other people are just as proud as me and see ever little change as a huge cause for celebration. The extent that the hydrotherapy lessons have helped Wriggles explore her legs and strengthen her torso and core muscles has surprised everyone.

World Book Day

Today, 1st March is World Book Day, encouraging children to fall in love with reading and adults to share their favourite books and pass on this passion which many take through with them to old age and pass on to their children in turn. I remember as a child that getting a book token or World Book Day voucher was incredibly exciting; a bookshop was like a land of possibilities and each crisp new book was a world to fall into, a little package of escapism you could hold in your hand. As I grew older and read more complex stories, books took on a new meaning offering an empathic view and banishing insecurities as I met characters that could have been written for me alone. Books are unique in that they evoke a wealth of emotions, experiences, imagination and memories. Stories from fact or fiction can stay with you a lifetime and a love of words opens up both education and opportunities and enriches the soul.