Sticking like Glue

The other day I wrote about my sleeping arrangements and my fear of being far from my daughter at night. 

I like to think I'm going to be a cool mum, but I'm having to face up to facts.

I am terrified of being apart from her.

It's not a desperation to apart exactly, more like a terror that something awful will happen and a completely irrational feeling of betrayal. She would be fine, after all, I worked 3 days a week between when she was 8 months and about 21 months. She is now more reluctant to part but is such a sociable thing. It's me.

I thought I had put Neonatal and everything that followed behind me. I received excellent counselling until very recently, took a course of Sertaline (a SSRI anti-depressant also used for anxiety and in my case PTSD) and then unfortunately this summer happened and we got a feeding tube, starting diagnosis and reunited with some of the PICU consultants although thankfully avoided their unit by the skin of our teeth. Right now, two years ago, Wriggles was in NICU and this anniversary period is a funny old time. Full of flashbacks and bittersweet pride. Sometimes I think I over exaggerate the past, and then find a scrap of something from the time and it hits me again like a ton of bricks. She was that small. She was that sick.This lunchtime I was looking at her first nappy size given to me by special care when we left. I was shocked how small it was, fitting in the palm of my hand. I remember her looking dwarfed in it. Curled up in a special nest in an incubator, small, so small, with a huge chunk of machinery attached breathing for her. Then a little white hat keeping the CPAP apparatus on so she could breathe with some help. The feeding tube in for weeks and weeks because she was gestationally too young to have developed the suck/swallow reflex. The weeks and weeks of one cuddle a day, at 3pm sometimes for less than fifteen minutes. Oh god.

When I went back to work, I made myself because as a single parent I felt I had a duty to provide as best as I could and also not to conform to stereotypes. I did enjoy aspects of my job, but after giving birth so much felt like clock watching. There were days I loved and days I hated. The worst bit every morning was saying goodbye at the childminder's. I never dawdled leaving the office, but pelted back as soon as I could. Since being made redundant, Wriggles' needs are arguably a little more complex. Aside from the feeding tube there is a greater understanding of why she gets so poorly, which in itself comes with more caution to be exercised. 

Since she was rushed to hospital late July, we have not been separated for longer than half an hour on a sparse handful of occasions. 

This weekend, I was supposed to be travelling for a weekend away probably involving some babysitting.

This evening I broke down and admitted how scared I am of loosing some control and not being within running distance of my daughter. I have not had a panic attack for a long time, but I sat here, dizzy, tears streaming, my heart racing and my throat tight and painful. It's too soon. 

My worry is, when won't be too soon? She is now 2 and it's not like we're going to be able to forget prematurity or hospital visits for a long time, such are her medical conditions and health. I don't want to become a paranoid overbearing parent, embarrassingly clinging to her trouser leg in the playground. I want her to keep her independent streak that makes her so her and that I cherish for her beautiful personality of her own shining through. I'm going to have to let go in small amounts at some time in the not too distant future, for nursery, then school and my eventual return to work. I'm going to have to trust other people to do their best by her, to learn her cues, to know her danger signs, her quirks, her needs. But not yet, not now. She is still my baby and I am still cocooned in the after-effects of scare after scare. I need to build myself up gradually and look back out into the light. 

I just hope these needs of mine don't step on her needs of finding out about the world without me.

Madness?

I fear I might have gone mad.

I have, out of free will, consented and arranged to spend nearly FIVE HOURS on a packed train with a very loud and fidgety toddler and hundreds of probably tutting and head shaking strangers. I am dreading it and wondering if they will refund my ticket. Or give me ear plugs (me) and sedatives (Wriggles) for the good of the carriage. There are two changes to break things up but really, I am not hoping for miracles. In short, I am panicking and wondering how an earth I am going to manage this with one pair of hands and praying that the current unoccupied seat next to me on the train will remain unoccupied. The rest of the train is booked up.

*panics*

What am I going to DO with her? What if she refuses to nap? What if she tantrums uncontrollably? What if she is sick on the person sat next to me (please don't let anyone sit next to me)? WHAT WAS I THINKING?!

I suspect long distance public transport travel is one of the serious compromises of single parenthood without immediate help to conjure up. Four hands would be excellent. Also it would mean that I knew the person-sat-next-me and that Wriggles would be allowed to climb all over them. It would mean I could juggle a cup of coffee and the toddler without scalding either of us. It would mean I could go to the toilet in peace and without fear of loosing my child or either of us getting soiled in someone else's bodily fluids (come on, we have all been on a train). We could tag team. I'm getting carried away...

We have been on this journey before, but with the big difference that a) Wriggles was 9 months younger, immobile and not nearly so ear-splittingly vocal and b) my dad made the journey up to escort us down to lend an extra pair of hands. Dedication. We have also been driven up and down the country for Wriggles' first christmas when she had just reached her due date and either slept or had a bottle for the entire duration. Now she does not sleep the whole time or have bottles. Oh my goodness.

*panics some more*

I have bought a bumper pack of stickers and am trying to devise some way of sellotaping string to the lids of the felt tips to be sellotapes to errr something else to avoid loosing lids and pens a-plenty. I did think crayons but rememebered many a long distance journey of my childhood with melted crayons wedged down seats and found later in shoes. For the kindness of other passengers I am seriously limiting books as I very much doubt anyone else has the capacity to listen to Where Is Spot? at least 50 times. 

*panics even more*

Wish me luck!

Wires

You got wires, going in
You got wires, coming out of your skin
You got tears, making tracks
I got tears, that are scared of the facts

Running, down corridors through, automatic doors
Got to get to you, got to see this through
I see hope is here, in a plastic box
I've seen christmas lights, reflect in your eyes

You got wires, going in
You got wires, coming out of your skin
There's dry blood, on your wrist
Your dry blood on my fingertip

Running, down corridoors through, automatic doors
Got to get to you, got to see this through
First night of your life, curled up on your own
Looking at you now, you would never know

I see it in your eyes, I see it in your eyes
You'll be alright
I see it in your eyes, I see it in your eyes
You'll be alright

Alright

Running, down corridors through, automatic doors
Got to get to you, got to see this through
I see hope is here, in a plastic box
I've seen christmas lights, reflect in your eyes
down corridors, through automatic doors
Got to get to you, got to see this through
First night of your life, curled up on your own

Looking at you now, you would never know. 

Wires written and performed by Athlete 

Off their album Tourist, released 2005

Written after singer and guitarist Joel Pott's daughter Myla was born prematurely and rushed to NICU.


I wrote this after sorting through things for our local neonatal charity and being quite overwhelmed by the memories it created. If you want a very special message of hope from a hero, hop over to Diary of a Premmy Mum to read Smidge's message to all babies still in an NICU.

Victory

I just wanted to  bore  share a very small victory. It is this hat. It is actually not the hat itself, but the little green label *points* do you see? It says 12-18 months. Which is the size, obviously. At long last my 2 year old is growing! She has always had a ridiculously small head not helped by the plagiocephaly, but finally, she is fitting in bigger hats. Some may question the proof of a fleece-lined chunky knitted cheap-as-chips Tesco hat, but I for one am convinced of this magnificent feat. Now just to move up from clothes sizes of 9-12 months...

Confession

I have a bit of a confession. I think it's a bit shameful; though nothing in the slightest bit gossipy or interesting.

I have a perfectly adequate bedroom and a perfectly adequate bed. It is right next door to Wriggles' room and there is but a wall separating us. Theoretically.

Yet, since about the end of July, I have been choosing to sleep on an airbed on the floor of Wriggles nursery room. 

I moved in as a temporary measure before we ended up in hospital for the millionth time when she was poorly, as she needed monitoring very closely and was awake most of the night crying and coughing. Then, we we abruptly came out of hospital over a fortnight later complete with feeding tube, pump and equipment, it made sense to sleep in with her in case she gagged and was sick mid-night, or the machine started beeping or the feed ended, saving fumbling in the dark, walking into doors or missing any of these cues because I couldn't hear.

I think it's come to the point now, nearly a month after her PEG tube was placed that it is now more for my benefit and comfort than hers. If I was worried about noise, I have a baby monitor, and really my flat is not huge. I know she would be be quite fine if I wasn't there: it's me that might be a wreck. It sends me into a panic, the thought of being apart. Maybe that isn't entirely true: what I am scared of it that something will go wrong and I won't hear. When I am in touching distance of her, there is not a lot I miss. The slightest whimper and I can be there. If she rolls over and gets tangled in her tubing, I can drag myself about a metre to the left and untangle her. Simples.

But what if I didn't hear next door? What if she started labouring breathing? What if she was sick? What if she paused in breathing? What if, what if....so many what ifs. So many what ifs that are unlikely but still there. Because after the last two months, if it isn't a dead cert, then frankly I'm not interested. I don't care for your probablys, your averages, your statistics, your maybes. I want definites and I want to know that I will be in the right place and the right time. I am sick of taking chances and of looking at even minuscule risks. I am done with what feels like playing games with my little girl' health. 

I'm not sure it's healthy, but I'm not sure I can move back yet either.

38/52 Toddler

Beautiful by night...

...until a mid morning strop!

Water Play

This week I have found really hard, what with colds, an unwanted trip to hospital, mention again of fundoplication surgery which I am really not keen on, an increase in physio as Wriggles' muscle tone is playing up and her legs are getting more exaggerated which is not a good thing for inducing mobility and lashings of torrential rain. This afternoon, our friends came round which was a very welcome bit of socialisation with no medical strings attached and really helped to clear the metaphorical clouds looming above my head! Trying to keep on the good track this afternoon, I decided it was high time we tried out Wriggles' birthday present: a water table.

I found choosing presents quite hard for her second birthday; things that would fit in my small flat, things she would enjoy, things that would push her, things that wouldn't drive me off a cliff...things I could afford! She loves messy play and is a complete water baby, and in the absence of swimming while her stoma site heals, playing at the sink is the next best thing. Or better, a table on the floor with less scope to slip over. Also it challenged her legs as it was a perfect incentive to stay standing and bearing (some) weight.

We chucked in all the bath toys, some stacking cups with holes in, a stray ball from a ball pit, a nice pouring cup and filled up the sides. I tried to have one side with strongly scented bubbles and the other plain water with a bit of glitter ("DAAAAARRRRS!") which of course got mixed up in about five seconds flat.

 And then let her loose!

It was really therapeutic playing with the water, but mostly seeing how much fun she was having. My floor got an impromptu thorough wash, which to be honest is probably no bad thing. We poured, splashed, shouted, sang and had a whale of a time. Just what the doctor ordered.

Muuuum, I am NOT doing your washing up for you!

Fairy Wings

Important discovery: toddlers hell bent on destruction are much easier to forgive when wearing new fairy wings. Despite being recently poorly, Wriggles has been firm in her objective to create mess wherever she goes and has been doing a pretty good job.

Emptying the cupboards whilst I am filling up the kettle:

Aim: To quickly empty as many contents of the sideboard as humanely possible in the 10 seconds it takes for Parent to fill up a kettle. Project to be resumed once kettle is boiled and it being poured.

Fairy wing forgiveness rating: 8/10 
Pretty good recovery of temper on maternal side. Fairy wings keep small child from crawling in said cupboard as the shape is too awkward to fit beyond the doors, a definite plus. Score may be skewed by the fact that the cupboard really needs sorting, thus everything is just jammed inside anyway out of sight for visitors, and so is not nearly as irritating as emptying say, the bookshelf.

The Bad Laundry Fairy:

Aim: To "help" empty the washing machine, preferably flinging clean clothes onto the floor, making off with some, and mixing back up with dirty washing. Any spillages must be zoomed in on to drag clean clothes through.

Fairy Wing forgiveness rating: 6/10 
A pleasing result. Fairy wings give the mess a comic edge, although having to wash some washing for the third time in notably annoying. Deduct points for every time infant-in-wings is removed but instantly returns to the scene of the crime.

Stay tuned for more toddler escapades....unless my child is suddenly replaced by an angel sent from mess-free heaven completely immune to tantrums....

Duck

Some days I am like a duck on water, (I was going to say swan but am nowhere near that graceful) on the surface serenely paddling along taking it all in my stride, quacking at appropriate moments, dabbling for leftovers...but on the underneath, frantically paddling to stay afloat and not sink however much I would like to drown in self pity and stick my head under and not come up again for a long long time. Today I am an upside down duck.

There is no particular reason, apart from throwing off a slight cold myself and taking care of a sick child, and carrying on with everything we do everyday in it's tube-feeding, physio-exercises, refluxing glory...oh yes actually, they look some very good particular reasons.

I AM ANGRY. VERY angry. Not at someone or anyone or anything. Just at the sheer bloody unfairness of some things. I know some people believe things happen for a reason. For better or worse, I am not one of the those people. How can suffering in any guise be for good?

Two years ago, my little girl was critically poorly in a plastic box, her little bird like body being pushed to it's physical limits to stay alive. I had held her once.

Two years later, she is lovely beyond belief, full of beans but still needing medical help in different forms to ensure day to day is comfortable and monitored so that things are not getting out of control. Medical science is amazing, I just wish we didn't need it. I am angry that somehow, she came to need it. That she needs tube feeding to protect her lungs, that she needs medicines to stop stomach acid damaging her oesophagus and airways. That she needs exercises to stop her legs, feet and hips from tightening and ceasing or delaying development further. Some days I am so TIRED of accepting and riding the wave of all this vital and gratefully received help and I just wish upon wish things were different.

That she would let herself eat. 

I am her MOTHER. Why can I not feed her in the way we take for granted? 

I want her to experience the delights, the sensory, the social aspects of eating. The pleasurable rituals we play out daily, the tingle, the sharp, the smooth textures, the range of tastes from surprising to comforting. The salivation that comes from it. The pathways our brains make from it. I want her to be able to go for tea with friends. To use food as a means for happiness not just necessity. 

Some days it pains me to keeping trying when she gets so agitated. 

Some days I am very angry that parents have to fight to be taken seriously. It has taken 2 years to finally get doctors to take her reflux seriously and to get to the point where she is 100% tube fed and will be for the foreseeable future. Because otherwise, her already vulnerable chest is at risk. Today I got a review letter confirming that the bronchoscopy, her pharynx is hypotonic (pharyngomalacia: basically "floppy", narrowed and prone to collapsing under strain). This was briefly noted back on PICU when she was intubated at 7 month old! How has it taken until now to get a name? Unsurprisingly, this can lead to feeding problems. Well who would have guessed?!

Mostly I am just furious that things are not straight forward. ALL I WANT IS MY CHILD TO HAVE A PERFECTLY ENJOYABLE UNCOMPLICATED FUTURE. 

Is that too much to ask?

Long

Today, actually no, from last night has been a long long day. By Sod's Law, we got back from the doctors surgery yesterday after being given the all clear and then Wriggles' started coughing and coughing and bringing anything than so much as touched her stomach back up. Although I did lie down for some periods, it certainly felt like I was up all night, either rocking her, being sicked up on or administering inhalers or clock-watching between Calpol doses. At 8am I cracked and demanded another appointment, fully expecting to wind up in hospital but hoping we would get some antibiotics and be ticked off for being overly paranoid.

We ended up in hospital. OF COURSE. Where else would we go on a Tuesday morning at 10am? It's not like we would have a life to lead, is it?!

Wriggles duly showed them just how well she can suck in her chest and how hard she can cough and how pale she can go, all the time whilst giggling and fluttering her eyelashes. A bit of oxygen was turned on, they debated long and hard about admitting us proper or sending us home on the understanding we come straight back if needs be and they prescribed antibiotics to be followed on with prophylactic antibiotics all winter, snazzily accessorised by the flu jab. In the end, with borderline sats we still got to go home as luckily I don't live too far from hospital and as the paediatrician said "it's not like you haven't seen the warning signs before."

The thing that really came out of today is something that has crossed my mind, but something that now other people have noticed. When hooked up to a sats monitor, her sats drop when the feeds starts and when she refluxes. She coughs when she shouldn't cough and still regularly makes a "purring" sound in her airways and chest after some feeding. Despite the gastronomy, despite stopping liquid feeds, despite prescribing correct reflux medication....it looks likely that she is still aspirating, this time on the reflux which is still hanging around like an unwanted guest.

A bit of a blow.

The next step is to wait and see how much this affects her chest to see if it warrants further surgery in the form of a fundoplication, which is not without it's drawbacks. I knew the gastronomy was not a magic answer, I am just so fed up of things cropping up and seeing my little girl be struck by illness again and again. All toddlers get colds, but frankly I am fed up with the love-hate relationship I have with the dear old hospital. RVI, it's over, you hear me? 




I found this marvellous link from Life After NICU if you are worried about wintery illness in young children:

Cold Symptoms	Flu Symptoms	RSV Symptoms
Low or no fever	High fever	Low-grade fever
Sometimes a headache	Always a headache	Sometimes a mild headache
Stuffy, runny nose	Clear nose	Runny nose
Sneezing	Sometimes sneezing	Sneezing
Mild, hacking cough	Cough, often becomes severe	Coughing, wheezing, breathing difficulties
Slight aches and pains	Often severe aches and pains	Mild joint pains
Mild fatigue	Several weeks of fatigue	Exhaustion
Sore throat	Sometimes a sore throat	Mild sore throat, may be from coughing
Normal energy level	Extreme exhaustion	Decreased activity and irritability

To hermit or not to hermit?

Christmas is coming, the goose is getting fat... poor goose. Well, it may not be Christmas just yet, but it is certainly into the autumnal period and the good old RSV season as many preemie parents know and dread. Before children, I had never heard of RSV. Now it plays on my mind and sits there in the back of my mind from September until March, the official "season" of coughs, colds and general snottiness.

RSV, or respiratory syncytial virus, is a virus that is responsible for causing bronchiolitus. 75% of bronchiolitis cases to be exact. It is a very common virus. Almost all children are infected with RSV by the time they are two years old. In older children and adults, RSV may cause a cough or cold, but in 2-3% of young children it can manifest itself in more serious illness, sometimes leading to hospitalisation. It causes respiratory tract infections (mainly lower) and typically premature babies and children are one of the groups at higher risk of developing complications. 

It is only just September and already Wriggles is poorly. I have been trying to keep my cool, but this afternoon cracked and flexed my manically-anxious-parent muscles to get an emergency doctors appointment after Wriggles had a period of having a respiratory rates (breaths per minute) of 60 and vomited some tiny amounts of blood with a hacking cough. Typically by the time we got to the doctor, she was barely showing any signs of chest recession and wouldn't as much as cough. The GP was actually very understanding but couldn't at that point find anything to merit further examination after listening to her chest (lungs = nice and clear at 4pm) and heart rate, which was normal. Of course since we have got back home, the hacking cough is back along with vomiting and my best friend Calpol and the inhalers we have for not-quite-emergencies-but-not-routine situations are out in full force and sitting on borderline of warranting further attention. After a few hairy moments this evening, the minx is fast asleep snuffling for England and clinging onto Christmas Hedgehog for dear life. I truly hope this passes as quickly as it came. We are on day 5 of something resembling a cold, which surely should be around a peak, and can stay safely at home not that ....other "h" place.

But it has got me thinking and worried. Did we pick this up a soft play? Baby group? The park? Sainsburys? The metro? Where, and how the blazes are we going to last winter? I know all children get poorly, that you can't wrap them up in cotton wool and they need these experiences to build immunity but there lies the problem. My little girl has had so many periods of illness, her immune system is shot to pieces so she barely has any time to regain immune strength before coming down with something else. I hope the new g-tube will help reduce the amount of chest infections, but I suspect it will not protect her airways as much as I would like during the winter. I wouldn't mind (as much) if she didn't get so poorly each time. Each and every time we end up hospitalised on oxygen, nebulisers, and often IV medicines, and a sweet shop style selection of antibiotics. She doesn't "just" do a cold, she has to pull out the big guns and go into respiratory distress warranting anything from 24 hour monitoring to help from the emergency services.

So I am worried about winter.

Last week, I would have said we would stand our ground and keep up our social life to avoid going mad throughout the winter and thumb our nose to the colds doing the rounds. It is amazing how quickly you forget how terrifying a poorly child is coupled with a more terrifying medical history. This afternoon as she breathed really fast for an hour or so, I began shaking like a leaf with fear that things were repeating. Now she is asleep still but coughing as if she was on 40 a day and crying, rigid with discomfort. 

I can't take seeing my child wired up all over again.

More to the point, I am worried my child can't take being wired up again and again. how many times can one little person be pushed?

Part of my brain says, you can't just compromise life quality by staying hermits just in case a virus floats by. Then part says, and what life quality, is being rushed to hospital in the early hours of the morning to be prodded, poked and be scare-mongered by nurses performing blood tests for the next week whilst you have cannulas shoved up your nose because you can't breathe efficiently enough just because of a virus that floated by.

Being two is not enough to fight things off. Simply put, we don't "do" colds. What would you do?

Sneaky Biscuit

Both Wriggles and I have the pre-winter lurgy so am feeling distinctively lacking in energy to write proper. However, I offer a sneaky hidden vegetable recipe I have adapted in the hope my offspring moves on from Quavers, which are rapidly becoming less of an interest.

Sneaky Vegetable Cheesey Biscuits

100g cheese, grated
100g plain flour
100g butter or margarine
Some vegetable of your choosing. I have so far experimented with carrot and courgettes

1. Sift flour, grate cheese and lob fat of choice in a bowl. 
2. Select sneaky vegetable of choice and grate/chop finely. I have used about the length of my little finger as a guide and then estimated wildly looking at the results. It's up to you.
3. MIX. I don't know any technical cooking terms thought I imagine "knead" is appropriate
4. Flour clean surface and rolling pin; roll out mixture
5. Cut desired shapes. We choose stars as that is Wriggles' favourite word
6. Put oven on. I think it was 170c...
7. Cook until undersides are browning and biscuits are more springy than wibbly. I'm afraid I cannot remember times but 15-20 minutes sounds about right. Prod with finger and use oven gloves to see.
8. EAT (when cooled of course)

Result: I have eaten approximately 100 (it feels like) and Wriggles has chewed a corner of one, which for her is practically a three course meal. Hooray!

 

Snuffles but no Cake

Snuffle snuffle snuffle...

...goes my daughter in the room next door. I say next door, I am actually sitting typing very quietly outside her bedroom door so I can hear her breathe (I'm not mad, honest. She's only just come out of hospital from being ill again. Guv). Today was supposed to be a little birthday party. Nothing special, nothing huge. Just a little something with some close friends including some baby friends that we have made, to my pleasant surprise in the last year. Just something to celebrate how far she has come. How great she is. Instead, this morning I have had to cancel as the runny nose of the last few days has got worse and acquired a temperature that stubbornly defies Calpol in the face and a slight increase of work breathing as she is clearly incredibly bunged up in her airways. I've been alternating the inhalers and Calpol and trying to get her to rest, and it is clear she is feeling sorry for herself although not enough to stop climbing on chairs. I have also made sure I know where the numbers of NHS Direct, the out of hours GP and the hospital ward we have open-access are. Just in case, you know?

I too have The Cold, so we are both a little grumpy and have been seen in better condition. It has been hanging around since Thursday and frankly, can leave as quickly as it came. I really wish I could just write it off as a cold, top up my Lemsip with some whisky or similar and reap the joys of CBeebies on repeat but there is that horrible niggle at the  front  back of my head saying what if it isn't a cold? What if you end up back in hospital? Is she panting a bit? Have you got your bags packed? I so want to put it down to being an "anxious mum" and think yep, shit happens, birthday teas get cancelled and birthday girls get ill but I can't scrap that fear, because let's face it, I don't think we have done "just" a cold yet.


On a cheerier note: 

Exploring Birthday Present Avenue

Day out at Blue Reef Aquarium

Obligatory cake, most definitely not homemade

37/52

Two Tomorrow

Two. She's going to be TWO tomorrow. TOMORROW. TWO.

I can't believe it.

I feel intermittently delirious with excitement on her behalf, and sick with fear as the memories race through my head.

Two years ago, I was pretty much without a care in the world.

Today, I have a bundle of giggles who also requires a higher standard of care than other two year olds.

Why hasn't there been a fanfare, why didn't a bell toll two years ago? How can it happen so quietly, so unassuming? One day a singleton, the next a mother. One day at home, the next in hospital. And conversely, one day in hospital, the next at home. 

Two years ago I knew little of heart ache and far less about love than I would have liked to think.

Two years later I know the dizzying heights of sheer joy and pure adoration and that love is not soft, it is fierce like a tiger. I know the line of despair, terror and consuming guilt.

A little under two years ago, I bought a book roughly around the time my daughter was in NICU or possibly just came out. The Heart and the Bottle, by Oliver Jeffers. I loved his illustration style, but the book made me cry instantly. It was far more grown up that his previous works, and dealt with love and loss. 

"Once there was a girl who was much like any other

Her head was filled with the curiosity of the world

With thoughts of the stars

With wonder of the sea

She took delight in finding new things

Until one day she found an empty chair

Feeling unsure, the girl thought the best thing was to put her heart in a safe place

Just for the time being..." 

And so, the book examines how when your heart is in a safe place, say a bottle, it seems to fix things at first. Maybe at first it is necessary. But as time goes on, it dulls the world around you. You start to think less of the stars, see less wonder in the sea, and new things are left undiscovered, the world slowly drifting further and further from your island. 

After the shock, and I hate to say it, but trauma, of having Wriggles, I was very afraid to feel. I was afraid to grip any emotion head-on for the fear it would consume me whole for breakfast. All through NICU, I was so desperate to feel something, anything. I felt protective, I felt fiercely protective, but I also felt numb. I felt like I was in a bottle, looking out clearly on the world but with a sheet of glass between us. I could shout but no one could hear me. They could see me, and waved cheerfully. But I could only stand, pressed up, and wish to be free yet afraid of what was out there. I wish I could say that when I brought Wriggles home, the spell was broken. I think very slowly it began to break, but I still felt so fogged. I knew I was in love, but who knew love was so painful, so fragile, so vulnerable and so closely entwined with a deep seated guilt that threatened to destroy things? 

I can't pinpoint when the moment was that things changed, and I found the key to unlocking things. In the book, the girl finds a little friend on the beach who easily unplucks her heart for her. In my life it was not so simple. I was slowly emerging back into the world and allowing myself to sink completely into a devout love with my child, free of any terror or hauntings of the past months of NICU or birth, when she abruptly ended up slap bang in PICU. I knew then what I had to loose, once she was there and it set a terror deeper than anything when I realised that the most precious thing to me might be ripped away again. It was so clear how much she meant to me then and that maybe I hadn't been being true to us both, when I had felt too afraid to love her without abandon. Those days until she was out of the critical period were the worst I have ever felt. Going to sleep with no snuffler by my side felt so bleak, as if the world had stopped turning and lost all it's colour, smells and sounds. I felt bereft, even walking to her cubicle, without her by my side. That moment, weeks later when she came out of her induced coma and I could hold her again was in glorious technicolour. Oh she was floppy, she was pale, she was weak. But she was mine. Mine, mine, mine. I will never ever ever let you go, baby girl. 

Of course, it wasn't as simple as that was that. Having my baby back with me, being back with her all the time was the most wonderful feeling ever and affirmed how much I had given over to her, but when we got home I struggled to deal with how things had gone and fell deep into a state of mental unrest coupled with cripplingly guilt that I wasn't making the most of things. I would walk along and cry for no reason, convinced that however much I loved her it would never be enough to make up for her little life so far.

I don't know when that stopped, but it did or at least got to the point of being manageable and I was able to tell my inner jimminy cricket to sod off from time to time. I began to go to baby groups again, to venture to exotic lands like The Park, The Seaside, Coffee Shops. And suddenly things improved. I began to have conversations with fellow mums and not feel a fraud or a headcase.  I saw my baby for being my baby, not a fragile being with too many miniature scars. I began to see that there was a chance, no a fact, that she loved me back. Last birthday was still a struggle. I was doing better but nearer the date became flustered with too many memories and kept nearly blacking out. This birthday, I think I am better. I am excited. I have done present shopping. I have blown up balloons with a faulty balloon pump: now that is love. I'm wearing my heart on my sleeve now most days. It's frightening because there it is, right there, free for the taking. It's not protected, it could easily be broken or damaged. But it's better than locking it away, isn't it? Better than locking me, us, away. I think. I'm not sure every single day or in every single situation. But right now I am.

Happy birthday in a few hours, baby girl.

Last day of being 1

Errr mum, I don't want my face painted at the Sure Start Fun Day. Will you get it done instead? grumble grumble

Bunting made with a photograph of Wriggles at a month older on each triangle, all the way up to 2 around the room!

Can you get an "I am 2" t-shirt for Very Small People? No you cannot. Digging out my old sewing skills (I knew that art degree was useful for something!) and putting some sequins on a 6-9 month old t-shirt. If that is refluxed on tomorrow first thing there is trouble...

Last few hours of being only one.

DAAAAARRRRRRR!

Partly because I knew premature babies were at risk of speech delays and partly because it promised a free cup of tea and biscuit, Wriggles and I have been signing since she was a little over a year old. We diligently attended classes, signed at home, watched Mr Tumble and clapped graciously every time one of her younger peers learnt a new sign. Then, suddenly at 18 months she became quite keen on gesticulating wildly. Except it wasn't just a random movement, it looked quite calculated. It took a few days to work out a fairly reliable context that kept cropping up next to the hand waving, but it soon looked quite obvious she was signing "all gone" to me. This came to be applied to many situation: all gone, I've dropped it, oh dear, go away, that hurts STOP IT (to doctors), no more, finished, I'm fed up....

On we plodded with our first sign very proudly. Just as well, because it was months before there were any further signs of attempted communication. Very slowly, it began to emerge Wriggles was building up some level of understanding and when people would come for tea and begin to talk about leaving, she would eagerly start waving like a mad thing. Then suddenly there was an explosion of signs, and we now have a vocabulary of about 30 signs. Compared to some children, this is little, but for us it is huge. It gives us another tool of communication beyond whining and guesswork and Wriggles treats it as a game, making her far more likely to pick it up. Crucially it has demonstrated that her level of understanding is far superior to what she lets on. It has been a long time coming, her showing any response to language, signed or spoken. I remember being quite concerned last Christmas when she has just turned 1 corrected, as beyond recognising her name, she seemed to show no comprehension at all of language. She was quite visual and understood basic routine through sights and familiarity and her hearing seemed fine. Her ears would prick up at every noise, but words? You may as well have not bothered.

And then, this past week she has become very keen on signing "star" a lot to me. She has been signing it for a while in context, but suddenly there are stars everywhere. In books, in songs, on patterned clothes... Of course, it's not that there are genuinely more stars in the world, the difference now is that she understands and has had a burst of excitement because she knows I understand her back. It's suddenly a two-way thing. And most importantly, she has a word to go with it.

"DAAAAAAAAARRRRRRRR!"

At first I thought it was a cute coincidence that her gibbering was copying the inflection of the word she was signing. Then, as she did it again and again and again I began to dare to hope; was this fledgling speech? Today, not for the first time, I found her sat with a book jabbing at pictures of big yellow stars shouting "DAAAR! DAAARRRR!! DAAAAARRRR!" and when asked, she will happily screech "DAAAAAAR!" in reply. 

Unless she wants a rendition of 'Twinkle, Twinkle', she saves her new word for it's context. Which of course crops of frequently-both she and I are so proud of her that I make sure there are lots of stars everywhere for her to be able to show me what they are!

Just shy of 2 years old our first word. Not bad going, preemie. Not bad at all.

36/52

The Letter I've Waited For Forever

After a wonderful day out with a friend and her new baby in beautiful Richmond in north Yorkshire, I came home with the giggle-monster (also known as Wriggles) and found a nonchalant brown envelope sitting on my doormat. 

This letter I have been waiting for in some form for a long time, at least 15 months if not more. In many ways, nearly 2 years. I didn't know what it would look like, the exact words or when it would arrive but there has been some level of expectation that it would come at some point or something similar.

In bold type, amongst some other headings read the line:

"Diagnosis: Emerging central motor defect-cerebral palsy with mild asymmetry and developmental delay"

Since our recent development review when the consultant confirmed brisk reflexes and spasticity in both legs and the left arm, I have increasingly suspected that this would happen sooner or later. Both our consultants and physiotherapists have mercifully always been very open and honest with me which has lessened the blow, although I was surprised to still feel it keenly when I read the words in black and white. It is mild enough to have taken this long to diagnose, and to look at Wriggles you would be unlikely to suspect something slightly different at first, second or even third glance. By all means, as conditions go it is far from severe and because of this is very unlikely to hold her back definitively in anything. Yes, she might have to work harder and take longer to achieve physical milestones particularly involving lower limbs, but there is no reason seen now why she should not achieve anything. So given this, why do I feel so funny?

It's a label, I suppose. Bam, slapped on. Something to live with. A name. A condition. A reason. In many ways, I welcome the "answer" but in as many ways I mourn the confirmation. I've known since practically 'term' that Wriggles finds gross motor skills more difficult and that her reflexes and some core strength is not what it could be. I suppose the surprise, if could call it that, is that this isn't something which is going to disappear. This isn't our bit of prematurity that needs to just catch up. This is something that she will carry to school, to adulthood and beyond. It invites even more unknowns and fogginess to the future.

Thankfully, cerebral palsy is not degenerative. What you see, is what you get in that as it originates in the brain, it is not going to change. 

"Children with cerebral palsy have difficulties in controlling muscles and movements as they grow and develop. The nature and extent of these difficulties may change as children grow but cerebral palsy itself is not progressive: the injury or impairment in the brain does not change. However, the effects of the brain injury on the body may change over time for better or worse. Physiotherapy and other therapies can often help people with cerebral palsy reach their full potential and become more independent." Taken from Scope's website.

In cases like ours, diagnosis is not immediate because it doesn't have to be. It isn't that Wriggles has degenerated, it is just that it was not blindingly obvious before now especially given her prematurity and frequency of illness. Many 'symptoms' of cerebral palsy can also be attributed to different conditions and developmental progress that in some cases can be resolved. We have for some while now been receiving a physiotherapy programme similar to a child with a CP diagnosis because Wriggles was displaying the traits which are treated as and when they are prominent or seen to be hampering developmental progress. Her treatment will not know differ because of this letter; it doesn't need to. It just means that everyone will be aware that there are no quick fixes and she will probably remain on the books longer than expected. It's not just going to be resolved with a ta-da! Look she's walking now! as had been thought whenever she does start walking unaided. And I think that is what stings. 

I'm so glad, grateful and relieved that the linked-up health care and services in my area have enabled her so far and will continue to; I just wish we didn't have to be in that position in the first place.

One Week On

So, we are one week on from being home alone with our new PEG tube and I am pleased to say that actually, it is a lot easier than I feared! Last Friday, after getting home exhausted from a sleep deprived few days and understandably cranky baby, I was so worried that this was the icing on the cake and I just couldn't cope. The phone was on standby, ready for me to ring the hospital and plead that I would have to move there and become a permanent in-patient as we just couldn't do things at home.

How wonderful a new day is though-this week we have gained in confidence, Wriggles has regained her mobility and I have set up and disconnected the tube and feeds in shopping centres, museums, cafes, the bus stop and in the playground, surrounded by people. Whether a good or bad thing, I couldn't care less and actually once I am used to it, it is more discreet than I originally thought and people are just as likely to stare because my beautiful nutcase is cackling away in the buggy pointing at things and throwing Noodle the hedgehog over the side as opposed to wonder why an earth I am bobbing around with a syringe and a beeping buggy.

Climbing skills? Check! Wriggles regains her confidence and ability to move about

The most difficult thing is keeping Wriggles entertained for the duration of a feed. Luckily, the large chunk of her feeds is contained in a 10 hour night feed so we only have three daytime boluses, one of which can often been coincided with nap time. At the start of the week, I simply could not get any of the boluses, even the smallest amount, under an hour and they would often stretch on for longer to keep Wriggles from bringing them straight back up. I have slowly managed to tweak the rates up, and whilst they are not quite up to the half hourly rate we had before, they are more manageable now and things do not seem half as depressing now there are longer stretches and it no longer seems Wriggles is attached at all times to a feeding pump! The best thing, without a doubt, is not having to re-pass a tube regularly. The nasogasteric tube was re-passed so frequently and was horrible to see. But no more!  

The New Teatimes: running after toddler wielding feeding pump

Bedtime has slowly become easier. I have managed to bring bedtime forwards a little to something resembling our pre-hospital routine and am hopeful I will be able to soon do the same for the nap and to start having a mildly more structured morning. Living in pyjamas is beginning to take it's toll, especially when realising the rest of the world does not regard 9am as particularly early. Wriggles will now fall asleep by herself again, rather than the beginning of the week when she needed rocking to sleep and a great deal of comfort throughout the night. Her stoma infection is clearing up nicely and she is far less confused or distressed. I am still feeling exhausted after the stints in hospital. It is hard to switch off, and if I go to bed at a sensible time, I often lie awake for hours. Like everything else, it is getting easier just not at the fast pace I would prefer. But like everything else, I am getting used to it. Slowly. The tiring part is that whilst my toddler might need some extra care and things doing compared to another toddler, she is still that: a toddler. A full-of-beans, opinionated, lunatic, mountaineer-to-be, cheeky, frustrating, wonderful toddler. Does she care she does some things differently to her friends? Does she heck. Today we met up with some baby friends in the park, and it was so lovely to see them all excitedly pointing at each other and one of them exclaim "Lis! Lis!" at her (toddler language for her name it would seem. Other toddler-speak highlights from her friend included "Can you say please?" "Mice"). I went home feeling refreshed and like a bit of the worry had ebbed away.

So...here is to another week. Cheers!

Tantrum

Today was a Bad Day. Nothing drastic, preemie or feeding related for once, just for being a toddler. I remember reading somewhere a description of the "lovable appallingness" that is toddlers, which today was spot on but missing a little bit of the lovability. Wriggles had a horrifically tantrum filled day. She has started to have some, notably on hearing the word "no", but today was of epic proportions. I think there was a maximum of half an hour, often far less between tantrums. Nearly every one ended with her pinching me which invariably made things worse.

They were about:

•  I wanted to change her nappy
• I needed to button up her shirt
• The lid of the felt tip pen wouldn't come off quickly enough
• It wasn't the colour she wanted
• SHE wanted to colour in the hedgehog picture, despite having given me the pen and picture and having crawled off with Christmas Hedgehog
• The cardboard box I keep felt tips in wouldn't close
• The cardboard box I keep felt tips in then did close
• I wouldn't let her sabotage my radio
• I couldn't guess first time which book she wanted by a vague point at the bookshelf
• She wanted her ride-on and it wasn't right there but halfway across a small room
• I was too close
• I was too far away
• I wanted to join in her game
• I was busy doing something else
• I told her off for pinching me
• Mouse was still in the cot, not the living room
• She got bored of The Gruffalo halfway through
• I wanted to put her socks on
• She wouldn't get off a chair
• The physio wanted her to put her shoes on
• She wanted to climb on the windowsill
• She still wanted to climb on the windowsill
• She really wanted to climb on the windowsill
• I needed to go and get some groceries (and have a breath of fresh air from the flat)
• The magazine didn't tear up easily
• She couldn't launch herself head first off the sofa
• She got told off for pinching
• She wanted to watch Driver Dan's Storytrain sat on her ride-on, not the floor
• Her favourite book wasn't where she wanted it to be
• I wouldn't let her stab herself in the eye with my fork
• She poked herself in the eye with a breadstick
• I wanted to put her pyjamas on

And on that note, I am making a very strongly caffeinated beverage and possibly digging for the bottle of rum gathering dust. I have eaten a lump of cheese and may emigrate in the middle of the night leaving Christmas Hedgehog and his younger toy hedgehog friend Noodle in charge. If you would like to arrange a child swap of a gentle and well behaved angelic soul, please contact me.