More Grey Hairs

There has been a pause in any posting due to my little troublemaker deciding it is once again time to visit, as Grandma calls it, the H Place.

At the very end of September, Wriggles had a very minor sniff but nothing out of the ordinary. Our physio came out on Friday 30th and at the end of a session listened to her chest and was perfectly happy. She was a bit of a grump at bedtime but nothing more. However, as the night progressed things went very downhill, very fast. She could not settle and quickly developed a hacking cough. Calpol and inhalers and saline drops did nothing and the poor mite could not even take water if she wanted as would just cough, choke and vomit. All through the night I held her upright, rubbing her back. As the hours wore on, she grew palers, clammier and her breathing gew decidedly more laboured. She was vomiting consistently (delightful) due to the cough. In the early hours I had had enough. After beginning to bring up bile with fleck of blood, I rang NHS Direct in a panic who sent us along to a&e. Oh dear a&e! How I have er.....missed it. Since the weekend previous. Oh well. 

Mind you, it has been a while since a middle of the night dash. Unfortunately it was quite reminiscent of when we had the dash that culminated in the infamous PICU stay; whereby I bundled us into a taxi who was a driven by a chap called Maxell Onions (you can't make these things up) who drove the wrongway down a slip road onto a major A road and would go right every time his sat nav said left.......

Once there this time, a nurse eyed the invalid warily muttering "She looks quite short of breath". She effeciently whisked us around to the room that brings a chill to my spine: the snappily named 'resus'. Bays of resusitaires, with monitors, ventilators, emergency equipment for life-threatening occasions and such like. Wriggles, who was slightly less wriggly than normal, laid on a adult bed which of course dwarfed her ridiculously. She was quickly hooked up with ECG leads and an oxygen pulse monitor. As suspected, her sats were low and her heart rate was looking a bit silly. Bucket-loads of oxgen with nebulisers were administered whilst different medical staff ran around waving themometres, trying to take blood tests and piece together medical histories (that was the easy bit. One doctor walked in "Oh hello!! It's you two again...what are you doing here? Oh dear...." and was able to bring everyone else up to date). As the shifts changed over and breakfast dawned round, Wriggles was more normal-coloured and trying to eat the oxygen mask and was showing far more acceptable numbers on the monitor. Whilst they tried to work out whether to send us home or keep us in for observations, we got ready to go round to the Day Unit rather than take up space in a&e. 

Off we went, pushing the big bed along with an emergency oxygen cylinder Just In Case. We got through the first set of doors from a&e and suddenly the newly-stabilised patient deteriorated infront of our eyes. Within seconds she was labouring breaths again, recessing so much you could see all her ribcage and muscles and her heartrate shot through the roof. Casualty-style, we quickly all jogged into the second Resus room of the day. More oxygen, more nebulisers.............. This time, it took hours and hours for her to reach anything nearer stable. A blood-gas had them debating whether to send her up to High Dependancy straight away or to give her the benefit of the doubt.

At least that made the former decision easy: we were definitely staying in.

In total, we ended up in hospital for just under 3 weeks. As no definitive infection seemed present, the likelihood is that Wriggles aspirated something. There has always been a slight infection in her right lung on X-rays, but normally this is not the root of problems. After the initial weekend, where she was on oxygen and IV fluids, she was weaned off both. A team of paediatricians decided that the likely explanation was that due to her cardiac arrest whilst being ventilated for pneumonia aged 6 and a bit months, her swallow coordination is sometimes defective resulting in infrequent aspiration. Due to the fact she already has Chronic Lung Disease (Broncho Pulmonary Dysplasia) and a history of respiratory tract infections, they decided that this combined with her notorious solids aversion and reflux were all grounds to be fed nasogasterically for the forseeable future to allow her tissues to renew and her brain to mature. We were referred to speech and language who observed a one-off oral feed and agreed that this was a good idea. Just to be sure, they booked a fluroscopy (moving X-Ray, like a barium swallow) for the following week. In between this, Wriggles did catch a gasteric virus which put us in isolation. 

Once recovered, we went for the fluroscopy which confused everyone. There appeared to be no swallow problem. She did have a peculiar reaction to a puree but not one that showed any obstruction, aspiration or allergic reaction. The doctors shiftily withdrew to decide on a New Plan. No one quite knew what to do. The respiratory team had been so confident that they had discharged us from their care and handed us onto SALT, SALT now wanted to hand us onto someone else... They had just spent two weeks training me in nasogasteric feeds and setting up a community support plan with the view of ng feeding for the next twelve months minimum and not ruling out longterm PEG feeds. The respiratory team, neurological doctors, developmental paediatricians, physios, SALT had been sure of aspiration being the cause. Over the next few days we saw an array of paeds all with their own take on things. The inconclusive evidence looked shockingly to be.....drumroll.......it was all a result of prematurity complicated by pneumonia which was a most likely a complication of prematurity! Excellent. I could have guessed that myself without spending weeks in hospital undergoing a barrage of tests.

Oh, and she might have a milk intolerance. Or she might not. It could be the reflux.

So with that, we were released into the outside world again. Over the weeks, the seasosn had changed from people in shorts to people in coats, mittens and umbrellas. The air was chilled and afternoons suddenly grew dark.

So now we are back at home as normal. The ng tube, for the moment, is out. We are on high-calorie soya-milk and an continous antibiotics Just In Case. During hospital, Wriggles has perfected sitting unaided (what else can you do in a very small room you cannot leave in case you contaminate people?) and has developed a love of shredding important bits of paper and newspapers I have not yet read, and also discovered the joy of banging on cardboard boxes. I have returned to work and am trying to remember exactly how many marbles I had a few weeks ago because I seem to have less now... Almost a year ago in Special Care I believed, naively, that leaving dear old Ward 35 was the end of the premature experience. The birth and NICU/SCBU had left me in deep shock and for me, discharge symbolised a new beginning. Hope. A light. A world free of clinical procedures, antibacterial gel and feeding charts. A world where I stopped being a rabbit in the headlights and became A Real Mum. Wriggles would have soon reached term and no longer be 'a premature baby'. This began  to wobble when a week to discharge they decided she would leave on oxygen. But I still clung to this ideal of it being the fairytale end. 

Of course it isn't. I'm sure some parents do leave and leave it all behind in the hospital reception with the overpriced crisps and tacky cards. But it often feels as though we never escaped the world of prematurity. To look at, you would never guess she was a premature baby, far less a 27 weeker. But the oxygen followed by frequent admissions from respiratory "incidents" have been a haunting reminder of prematurity. Each seems to invoke the trauma of the previous. This last admission has particularly triggered the memories of PICU: the weeks in a different world, roaming hospital corridoors at night, the eerie quiet of the 24 hour Costa Coffee at midnight. If I think too much, I hear the hospital machines with perfect clarity. Of course, if the alternative was to not have my darling Wriggles, I would go through it all again with hesitation. Yes it has been traumatic. It has shook my faith in the world and a sense of right and changed my outlook of life. But equally, my darling daughter has shown me a kind of love and joy that I don't believe can be equalled. She is better than the tastiest biscuit and more fun that running down a beach in the sun. When she smiles at me, I can forget the things I've seen and hours at a bedside. At the end of the day, miraculously, she seems free of any condition and utterly perfect. I know time is a great healer; it will heal my memories and will renew the cells in her lungs and rest of body and build up her immune system to make her stronger. Time will ensure she grows up and grows strong, away from being a fragile, premature baby. A year ago, I could have put her in my pocket. Now at 14 months old, we are not quite out of the woods of the whole experience but I am dreaming of hope again.

M m m m m m m m m mmmmmmmmmmm

In style of Sesame Street, today's bletherings are brought to you by the letter "m"!

Yes, hold your horses, Wriggles has finally got round to being able to babble "mmmm mmm mm". I am very excited. For a long time she didn't really vocalise apart from the good old fashioned "waaaaaaaaaaa!!". Then came a bizarre phase where she sounded like a goose. All day, there came a "honk honk hooonk honk" from wherever I had placed her. It truly was odd. One day all my best laid childcare arrangements fell through (and plans B, C, D, Y and Z) and she had to sneak into work with me. Luckily boss lady was away and it was just myself, Goosey Gander and my lovely marketing colleague. Being a theatre company we have plenty of bonkers props lying around the office (glittery chameleon, motorcycle helmet, furry handcuffs, rabbit water bottle...) and one such prop was a bag a toy ducks that made a noise when pressed. So Wriggles laid under an improvised baby gym and had a ball whilst the two adults present set off the quacking ducks which elicited more honking... Best day at work ever!

The honking diversified into dolphin like clicks and I began to wonder if I had sung too many versions of Old Macdonald or if she had been exposed to an excess of Richard Attenbrough as a Very Tiny Baby. Eventually the traditional "b", "da", "p" and raspberries entered the menagerie. I felt quite left out. Where was my "m"? I was only the bloody one that looked after her all day, every day, got up at the crack of dawn, played with her and had consigned all ex-favourite clothes to being sick rags! But now all is ok. I'm not overly convinced the "mmm" is an imminent version of "mummy" but I am going to pretend otherwise. Likewise, her childminder is also playing this game. When I went to pick her up yesterday, Wriggles was in the buggy "mmm mmmmm mmm mm mmmm"ing for Britain and our childminder excitedly pointed this out and decided it was an greeting of "mummy!! Where have you been!". I do sometimes need these things pointing out. I don't know if it is me or the PTSD which arose after the PICU admission (of which I will blog on at another date. It's not a picnic so I won't waffle on!) but I can be blind to her affection towards me. Other achievements I pick out hawk-eyed, but I have always had a nagging doubt that whilst I have bonded with her, she is longing to be bonded to a more competent mummy. I'm pretty sure, at least on a rational day, that babies do not have this thought process. I don't think being sociable implies a dislike or indifference of the Main Person in your life. But I just can't quite finally kick the habit of doubting myself in this area. I know it's probably ridiculous, but then again mental inflictions are not renowned for being full of sense.

Today she looked actively excited when I came to pick her up which has put me in an excellent mood. Even better, I am now finished work for the week so have three whole days off. Hooray! We have a physio appointment tomorrow and one of our adventures in the morning. Finally at the grand age of Wriggles being 1 we have started tentatively doing mummy and baby activities. Again dear old PTSD rendered me a social wreck for months, plus on the days I was not at work, Wriggles was sickening for something/sick/I had been up all night with a coughy baby and we were both knackered. Now she is managing more weeks at a time before having a blip, I had made a non-new-year resolution and decided I was going to go to something and even if I went the whole thing jibbering in the corner, I would keep going. So on Tuesdays and Fridays we go to baby classes and do singing and signing. Having an activity pacifies me (as opposed to floundering like a stunned fish in a directionless group where all the best mummy friends yap together, a snotty terror steals the best toy and everyone else, adults included, grizzle until the end when you can down your basics-instant coffee and run for the hills), Wriggles gets to poke the eyes out of other babies and get walloped on the head in return, such fun! I have even had some genuine conversations with people, which turn out to be not as terrifying as envisaged. Onwards and upwards, eh.....

Work

A long and frustrating day at work. As soon as 17:30 hit, I pelted out the door!

When Wriggles was first born, I was adamant I did not want to give up work. Most women have at least a portion of pregnancy to make lifestyle and financial decisions about what they will do when the baby comes, be it give up work, reduce hours, change jobs or return full time once maternity leave is over. Having not had this luxury, I was signed off for the obligatory month following childbirth. Obviously I was heavily in shock about the events that had just taken place and very worried for the little scrap lying in neonatal. I was also petrified about losing my job. At this point, I had not been able to establish paternal contact, was living in an flatshare that whilst had worked fine as a Singleton was already showing strains and my job could have gone one way or the other. I had not been in work for long, having only graduated a few months previously. I had worked part time throughout my degree and after filling in a rainforest worth of application forms, had landed A Grown Up Job. it wasn't the dream job, but it was one a thousand times better than many alternatives. It was in a sector I was passionate about (the arts) and for a small company I was familiar with and respected. My post would deal with community and education projects as well as administrative tasks. After four years at university studying fine art, a year at art college and two years doing three creative A levels as well as ethics & philosophy, I was well and truly signed up to the arts. As university wore on, I did become more pragmatic and cynical. I still loved the arts and do still firmly believe they add to the notion of "wellbeing" if accessed on a level playing field. However, my misgiving is that sometimes they are taken over by some quite selfish characters who fanny about. This was particularly why I was pleased to have some ties with schools and the community. Arts should be for everyone, not some specialist subject for brainboxes and families who can afford a small fortune to go around museums every weekend. Being able to orchestrate opportunities whether blatant or more complex was exciting. In my first two months I worked promoting a contemporary piece that looked at the family dynamic, the notion of love and to a degree, feminism. I loved it. The day I went into labour I was happily (well, uncomfortably) making props and running after ballerinas.

My new contract detailed nothing about maternity rights, I wasn't entitled to sick pay and some urgent meetings set up with Citizens Advice and Sure Start advisers confirmed I was a grey area. Local offices phoned regional offices who in turn phone head offices. No one could agree what I was entitled too in terms of finances, rights or leave. It looked like I was at the mercy of my boss who could use her discretion. It was looking increasingly likely that if I wanted any length of cobbled together maternity leave, it would be unpaid. It was not certain I would receive any benefits aside from child benefit and I certainly could not afford a year like this. At this point, Wriggles was too fragile to move anywhere fast, my family lived 300 miles away and it would be a complete uproot. I was lucky that my boss was happy to keep me on and we agreed I would return to work on a part time basis. Bonkers-ly I decided, "why wait"? My boss had reservations. Understandably. Something about avoiding the situation...

I won however. So, in weeks 5-9 of SCBU I returned for 20 hours a week. A silly idea; I was all over the place immediately. I think it was a relief for everyone when around week 8 (36 weeks gestation) the increasing apnoeas confirmed that my baby would go home on oxygen and would need a registered full time carer. Me! I was signed off work again and breathed a huge sigh of relief. Shortly after returning to work I had realised that I had to come to terms with the situation, and face on.

Until then I had been in such a state of shock I could not connect with proper rational or the rest of the world and I certainly could not connect with my own emotions. I do regret taking time out of the experience to work; although I spent every waking hour out of work in SCBU, staying until the last train home. But mostly I feel sad. I feel sad that I had so much on my plate, coming to terms with everything and supporting a teeny tiny baby, that I had to sort out work, to account like I have never accounted before to assess if I could manage, try and find a new home (this in the end got delayed slightly), oh yes and bond with my precious child! Having a sick child brings many challenges and one of the worst and least acknowldeged is that life trundles on outside of hospital. It can be a rude shock that life and all the boring bits do not wait for you.

I returned to work properly at around seven months. The oxygen was off and I was equally paranoid about being dismissed the longer I left returning and also managing financially. I desperately wanted to prove as a young-ish single mummy that I could provide at least a sizable chunk of my incomings to support my precious baby. In a perfect world I would have had some more time off; Wriggles was still sensitive to respiratory infections so most weekends were spent in hospital, I was at first still very much in the thick of PTSD and I had finally moved (hooray!). But as I said before, life isn't perfect.  I have a good childminder Wriggles adores (well, the cat at least) and although I have days where my once cherished job feels vacuous compared with what I have seen and I just want to be at home, I am also very proud that I can provide a lot of what surrounds me, bringing independence. It is only recently that I am coming round to the idea that I haven't mucked things up. Work does not seem to affect my relationship with my child for the worse, and some of the daytime hours missed in SCBU seem less relevant now. I always wanted to do the thing that would be "for the best" but now I think I have a far clearer idea of what that is.

A Year

What a funny old day. After a fairly standard Sunday morning at home, a game of Peekaboo got rather out of control resulting in Wriggles having a coughing fit following manic laughter which resulted in vomiting blood. Oh dear. And so off to a&e we trundled on the advice of NHS Direct. I was all for sitting it out but apparently these things can be serious....spoilsport.

It was bizarre walking into the emergency department. It is one I am unfortunately on good terms with, having made numerous trips over the last ten months with a sick baby (this makes her sound like an invalid It isn't true; she may require frequent prodding by the paediatric team but she is far from an ailing waif. It takes all my drama skills to convince people I am not fibbing when they ask what we did at the weekend and my reply is going to hospital). It is also where I was deposited shortly after I had given birth, although I had never given this a second thought on previous visits. It must be the recent anniversary, by which I mean first birthday, that made this connection. 

This time we had a relatively quick whizz through. By the time we saw a doctor, I had possibly the world's cheeriest baby happily trying to take home the stethoscope and eat a cardboard bedpan. Although in two minds, we have been released home, on the condition I watch her like a hawk even more than usual. Forget eyes in the back of my head, I need them side, centre and up my legs! It is most likely a burst blood vessel in the oesophegus probably connected to reflux episodes. Phew.

The most annoying thing was when you have to go through all the medical history and recount the birth story. At just over twelve months, apart from being 12 weeks premature, how she was born seems far less relevant. I don't discount her NICU experience will more than likely influence doctors concern or lack of, but her first minutes? More than anything it is a raw nerve as her birth ellicits a mix of emotions for me. Lashings of regret for her prematurity and having to fight when she should have been cosy, remorse over the mess I created for my precious first born, sorrow for what she (and I) went through and a very, very deep shame and humiliation for the circumstances of being the One Who Didn't Know. I am all too aware I was hospital gossip for a while-on one of Wriggles' chesty admissions I met a nurse who excitably exclaimed when taking notes "It's you!!!!". No, not a long lost friend-it turned out her friend, who's housemate's cousin or suchlike was working on one the wards I passed through on the birth night, had been intruiged by the drama of the story and it had been the staffroom tale of the month for weeks. So much for laying low and coming to terms with it!

It is hard to believe it is now over a year-something that I will probably return to again and again. As I watched Wriggles charm the pants off the medical team, I thought again how incredibly lucky we are. Recounting all the gruesome details of birth-PICU reminded me that my poor baby has had to work much harder than the average baby. Not that she looks like a 'poor baby'; the invalid was happily trying to pull out the consultant's arm hair.....

How daunting, this feels like introducing yourself to a new friend or partner! It seemed such a good idea jovially setting this blog idea up...

I was inspired to start blogging after a hazy year following the surprise premature birth of my daughter and a rather up and down year that followed it. Having read some uplifting blogs from other parents it struck me how isolated it can feel until you access information and have the eureka moment that you are not alone. Unless you are lucky to be blessed with a group of friends who all uniquely understand each problem you face, it can sometimes feel quite lonely even amongst stellar company. Even if not one sausage reads a word I write, recording things down is excellent for sorting out my muddled head. I sometimes have the sensation when meeting new people of listing nearly everything but the kitchen sink equivalent of potential trashy novel plotlines!
Not only was the birth very premature it was utterly unexpected. It resulted in a several month stint in NICU/SCBU and weeks dealing with shock for myself. We came home on oxygen and a hermit order slapped on us until she was six months old at which point she promptly came down with pneumonia and ended up in a critical state in PICU. Since then we have become regulars at the paediatric wing of the Royal Victoria Infirmary, not yet managing over six weeks without an emergency admission. Added to this I am a single parent with my nearest close relative 200 miles away; good map reading skills there, me! Baby has no serious problems but does have some developemental delay and quirks which take some explaining to parents who have wonderfully Pampers advert-esque children. I am so aware things could have been a thousand times more complicated; so apologies if anything comes out terribly "woe is me".

On the flipside to this, amongst the truly terrifying moments and breath holding, I did not know the intensity of love until I had my little girl. She has transformed my life and that of family and friends. She really is the happiest, chirpiest little soul and perfection itself (along with every other child in their parents eyes!) and brings unimaginable delight to me. Our journey has made me actuely grateful for what I have and the miracle of life.