Such ordinary pictures, days of nothing special, and yet for my 3 year old each one is a momentous occasion. I took for granted that walking comes naturally to children, babies even, until I had a premature baby who was later diagnosed with spastic cerebral palsy.
Since the days turned into weeks and then months when allotted milestones came and went, un-met we have done a lot of physio, used gaiters, AFOs, a Kaye walker and a daily muscle relaxant medicine in aid of walking. We have swam, bounced, sung, pleaded over steps and supported, held up and wiped tears when things wobbled. I have cried into my pillow and Wriggles has cried into me (or hit me with a stuffed tiger). But we are getting there. Each step of freedom makes my heart sing louder and if that what it does to me, I can only imagine what it does to an already perfectly confident child like Wriggles, whom quite regularly refers to herself as both "brave" and "clever".
Each step is so hard won: the cruelty of cerebral palsy is that even for those more mildly affected, the tiniest of set backs can prove huge. Each achievement can be crushed by the simplest of things. Growth spurts wreak havoc as muscles and bones grow at different times and rates and the signals in the brain get mixed up. Small viruses sap strength that takes weeks to get back to baseline. In an instant, core strength is halved. Which makes these memories and pictures all the more special. We got there. Wriggles got there.
At the moment, we are still suffering the after effects of Wriggles' recent intensive care admission. She has been out of hospital for two weeks, out of intensive care on sedation for three weeks, but still can only crawl or sit up. Her hard won steps have once again slipped away from her. I know she will win them back again and these weeks of frustration as she yells "I WAAAAAAAAAAAAAALK!" only to fall down because she can't stand up will melt away. It has just been a reminder that the battle is won, but not over. For now.
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.
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?
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?
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!
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.
Written retrospectively during our recent hospital stay at the beginning of August 2012.
Lightning illuminates the cracks between the drawn blinds. A cracking peal of thunder shakes the relative peace of the ward and the sky flashes bright again. Heavy rain dramatically beats the window, flash flooding the road below. I can barely make out a building just across the road through the lashings of weather.
I wish I could show Wriggles.
Her tubes are still connected to the humidified oxygen tank, barely reaching to the other side of the cot bed. She is still connected to a drip with a tube in her foot carrying IV fluids and drugs. Her other foot has the monitor probe attached. In her little nose sit nasal cannulas and an NG tube, where they are trying to pass fluids which keep coming up. Her chest is sticky with the residue from where ECG pads where attached in the ambulance. Bed baths just do not cut it for removing adhesives.
She loves watching through windows, pressing up against the glass.
At home, she pulls to stand clutching the rim of our windowsill, peering out. She bats the windchime hung over the curtain rail. She presses up squwarking with mirth at people on the other side of the glass, and showing her new skill of pointing at things.
I wish I could show you now, Wriggles.
I wish you could see the cars.
I wish you could see the people.
I wish you could see the puddles.
I wish we were anywhere but here, stuck in a room on isolation nursing, stuck in a bed because there is too much equipment to reach anywhere.
Sorry for neglecting you. It's that daughter of mine you see. She got sick again. Like all the other times; very very quickly.
Sunday evening she was a bit of a grump with a runny nose. Sunday middle-of-the-night she had a hacking cough that barely gave her time to catch her breath in between. Monday first-thing she was all over the place. Optimistically I secured the first doctors appointment of the day. My GP reached for her telephone and rang an emergency ambulance.
They were so kind, so calm, the two paramedics. Ladies, both with cropped hair probably mid-forties. Not that it matters. They popped Wriggles on my knee, attached four sticky ECG leads pads to her chest and started up oxygen through a mask.
"I think we just need some speed," one said gently. "Hold on!"
It was so bizarre, speeding through the familiar little streets we walk every day. NEE NAW NEE NAWWW NEE NAWWWWW past the church where we go to music groups NEEE NAWWWE NEE NAWWW past the coffee shops we meet friends at NEEE NAWWW NEE NAWWW past the park NEEE NAWWWWE NEEE NAWWWW why aren't her sats (oxygen saturation levels, measured in %) picking up? NEEEE NAWWWW NEEEE NAWWWWW!
And then suddenly we were in a&e being quickly guided to bloody 'resus', the resuscitation bays again. The emergenciest bit of accident and emergency. The bit with very scary machines and bits of equipment. The ones that have everything for every occasion because they cannot predict what the patients will do. Back in the same bed as last autumn, the one by the door in the corner. An army of doctors and nurses were waiting for us and immediately swarmed around us, sticking things here, putting things there, fiddling with machines and buttons, barking questions and taking histories at breakneck speed. A chest x-ray was ordered and some poor nurse tried to administer steroids to Wriggles, who by this point was clearly terrified and hysterical. She clung to me like a limpet and would not settle unless I was physically next to her on the bed. So there I stayed. My daughter, the social butterfly, was quite definitely sick if she wanted me. Normally, I am tossed aside for whoever else is in her sight line or has something shinier so this was very unusual. It seemed hours, but I think it was only an hour or two until we were declared stable enough to travel down the corridor to the paediatric section. There we stayed, in the room adjoining the nurses desk to be closely monitored. Wriggles was still on a lot of oxygen with at least hourly nebulisers and as many drugs as they could persuade her to take spit out. As the day wore on, we were secured a bed on the respiratory ward, wheeled over to the day unit and settled down into a state on not-so emergency. I dared to breathe a sigh of relief, that maybe the drama had passed and we would be in and out in a few days after a blast of oxygen and a course of antibiotics. Maybe, I thought hopefully, we would still make our flight on Friday to join my family in Devon. Oh! Someone must have been laughing at me. Upon getting to Ward 2, the respiratory ward, Wriggles began to crash. She began struggling far worse than when we had arrived, and her machine barely quietened between alarming. Her heart rate was flirting with 200 bpm and her sats were dipping below 80. The oxygen went up. 10 litres and counting. The monitor still alarmed. More doctors swarmed in. Cannulas were placed, blood gases rushed Upstairs. The place that needed no name, no introduction. Upstairs. Ward 12, Paediatric Intensive Care, level 4. Upstairs, my nemesis of nightmares. Time ticked on. 11pm. Midnight. Nothing was getting better. A consultant from Upstairs was called to assess her. She agreed to enquire about beds. In a daze of horror, I began to pack, so convinced that we were going. By 12:30 I was ready to move again, completely switched off and living on fear. I would not leave the cot, rigidly stuck holding my sick child's hand. And then my guardian angel, in the form of the respiratory SHO, came and worked some magic. Finally, Wriggles' sats stabilised in the 90s and a sigh of relief was breathed all round. We were on a very fine line, but for now, the acute drama has passed.
The next 24-48 hours was similar: Tuesday night we escaped a similar near-transfer to PICU after being formally accepted there, but thankfully never actually getting around to leaving our ward. In the early hours of Wednesday, I was warned we were on very shaky ground and all it would take was one small wobble and Wriggles would be on a ventilator again. I firmly believe that if we had had a less experienced consultant, we would have ended up on one. Our saving grace was the depth of knowledge and willingness to take risks of our consultant who guided us out the shakiest moments and of the PICU consultant we borrowed who knew Wriggles' history inside out. Wednesday, we had another scare when a coughing fit sent her de-saturated to 64 and in 18 litres of oxygen which took a long time to wean down and Upstairs alerted for the third time. Come Thursday, things began to subside, and slowly more lucid periods began to creep in and litre by litre the oxygen began to come down. From then on, it was a long slog, with it taking a further 8 days to manage any time oxygen free. It took days to get her off IVT fluids with a decision being made that we would go home tube-feeding as the consultants suspected intermittent aspiration into her lungs-something that has been considered in varying degrees for over a year. And so here we are, back home at last, with a pump and a NG feeding kit and a date set for a more permanent PEG (gastric) tube being placed. I feel so drained and exhausted, and I suspect it will take a while to process some of the more traumatic moments from the 15 day stay. Wriggles, although outwardly herself once more, has kittens if you dare go near her face or feet, where so many blood tests were performed. She is wary of people, and can spot medical equipment a mile off. If she catches sight of a syringe or spare-NG tube, she screams and hides. As so many have said, it is no surprise she has become so orally aversive. My poor baby: so much, soon soon. So much of her innocence dirtied and her small life tested and tried when it should be pure enjoyment and joy. So. A new chapter begins, of tube feeding and investigations by different teams. I have half expected tube feeding for a while, but for dietary and nutritional reasons. Despite the end being the same, it feels a struggle to get used to it although I know it will have many more longer-term benefits. Although it ended up being placed for respiratory safe-guarding, it will help so much as we eventually return to feeding once more. Little blog, I am tired. Mouse x
It has been a difficult end to last week. I want to dress it
up and put a really positive spin on things, shrug my shoulders and say
"hey ho, at least...." but I feel rocky and if I feel rocky, then
Wriggles must feel very sorry for herself. She is hedgehog-ing away next to me
in bed and my ears are a little bit afraid to sleep in case I don't hear her
begin to rasp and wheeze, should it start up again. I'm not a hypochondriac, we
have been in hospital. Yes, AGAIN. This cause: the common cold most probably.
It scares me that a cold renders my daughter terribly
poorly.
It scares me to see her hooked up to monitors.
It scares me to see her suddenly dependant on oxygen and nebulisers.
I know she is bigger now, stronger, more robust. It's not
that I am haunted by bad memories continuously exactly or that every nasal
cannula brings me back in an instant to intensive care, be it neonatal or
paediatric. But every time you see your child surrounded by tubes, wires and
equipment, it chips away a little at your heart with the unfairness of it all.
I know that despite the admissions, I do now have a take-home daughter but it
doesn't stop the grief seeping back in when I thought it was shut out.
Most parents have the pleasure of seeing their children
breathe in and out, wiping noses and bothering the GP. I, with thousands of
others, have had the privilege of getting exclusive access to the club of
parents who haunt the world of ambulances, spout medical terminology, have open
access to hospital and being able to spot respiratory distress and jump on it.
Or, try to jump on it only for your efforts to be futile. Best to get to
hospital then double quick.
It is moving towards a diagnosis of asthma: although her bouts of respiratory distress are only connected to infections, either viral
or bacterial, the fact that her episodes are quite severe when they do happen
and respond to bronchodilators are key factors to the doctors. As one said, it could be
that her preemie airways are hyper sensitive, it could be reactive airway disease,
it could be recurrent RSV infections or it could be infant asthma: at this
stage, as long as she responds to treatments when needed, what it is called right now is beside the point but it wouldn't hurt to throw a preventative
inhaler of steroids into the mix to see if it helps. I am so glad that there is
a plan of sorts forming now. It is a relief to know that both we are being
taken seriously now and that people care about what happens to us. It is good
to hear medical professionals saying enough is enough, this is getting silly.
One dilemma for parents of ill children, particularly very young ones, is choosing how much to watch with the consent of the medical team; how long to stay and when to leave. As well as being there for your children, you have to protect yourself as you are the adult living with the knowledge, the memories and the decisions.
I was watching the fabulous yet emotionally wrenching Great Ormond Street on BBC 2 this week about pioneering and experimental surgery. One brave set of parents were asked an incredibly difficult question: if an operation was going wrong, would you want to be brought into the theatre to be with your child? I have never been in this exact position, but I have been asked a similar question. When Wriggles was in Intensive Care and had her cardiac arrest, one of the doctors who wasn't doing life saving procedures gently suggested I might want to leave.
I didn't.
"Are you sure?" a nurse gently asked. "It can be very distressing."
I stayed. To her immense credit, my best friend who had happened to be sitting with me at the time, stayed with me. I'm not sure I could watch someone else's child go through that.
Although since I have been haunted by the memories that have been fiercely burnt into my mind, I don't regret it. Some people might see it as rubbing salt into a wound, of doing further harm to yourself, of not looking after yourself. It is a very personal thing and one that I think can only be truly decided by the exact circumstances in that exact minute, and the severity and gravity of the situation. Obviously your own beliefs also play a part and your knowledge of your capabilities.
When Wriggles was is NICU, I preferred to stay with as many procedures as they would let me. I stayed for the head scans, the retinopathy exam, the blood tests. I stayed when they had to stimulate her at times if she lost colour and had apnoeas and bradycardias. I don't think that this makes me a better person than someone who couldn't stay at all. Everyone knows what is best. In NICU, a large part of staying for procedures stemmed from a sense of guilt and a very precarious mental state that I was in. Yes, of course I wanted to stay for Wriggles' sake but also I felt I had to. As I have written about before, the very early days were a minefield that were dictated by pure shock and with no roots in emotion or rationality. The guilt from this once it passed was horrendous and taunted me that however much I loved her, I could never make it up from the ambivalence of the first days. Of course this isn't the case. I know now that shock and trauma breeds automatic responses that don't reflect love, passion, family, memory or truth. I became a little obsessed with the idea of staying by her as a mark of my devotion. Luckily, I didn't see anything too horrible and was rewarded by being able to sneak extra cuddles as compensation. Had our journey been far more rocky, it could have been a different kettle of fish so close to that time.
Intensive care at 6 months old was a different situation. I was mentally a lot more "with it" and had allowed myself to fall hopelessly in love with my daughter whom I had cared for, for four months since discharge. I didn't have the same conviction that leaving the room was the equivalent of deserting her for good. However, I still stayed throughout the ups and downs. This was very different though: in NICU, she was very sick and very fragile from prematurity. But, aside from the first week of her life, there wasn't a point that either the medical staff or I believed her life was endangered. Vulnerable, yes. Developmentally uncertain, definitely. But on the absolute brink? If anyone thought so, they never said. In intensive care though, she was in a very critical position. At the beginning of the stay, although I wanted to be with her, with persuasion I could walk away and sit next door when they intubated, x-rayed or took bloods from her. At this point she wasn't yet critical so I was confident that I could come back and she would still be there; be mine. The ties became much stronger over the coming days as she became sicker. By day 4 of PICU when she arrested, I was thrown into the dilemma: do you want to watch?
There was no way I was leaving then. If, in that split second as I had to acknowledge, I might loose her then I wanted to be with her. I wanted the person that loved her most to be within touching distance if the unthinkable happened. It's a funny parallel: you simultaneously never give up hope and believe stronger than you have ever believed in anything in that moment, but at that same time, you have in your face the very real fact that life is hanging in the balance. It is like being on a tightrope, but hugging it tight, so tight as if you will never let go and that is what will save you. I felt the same when my dad was critically ill a few years prior-you don't allow yourself to project that life will cease but yet you know it may and the fact nips on your heels as you run on, believing in love and life. And this is the point where only you can choose what to see. Some people will need to stay; some will equally need to go. There is no wrong and no right. One parent may need one thing, and one another. Each may have regret afterwards, but that will vary massively on the outcome.
We were the lucky ones.
One minute thirty seconds.
It could have been so much longer.
It could have been so much quicker.
It could have been a different story altogether.
Could I do it again? I hope against hope I will never ever have to. It is not something I could ever forward-plan. Ours was a one-off episode and thankfully Wriggles has never been that severely ill again. Yes, poorly, yes needing support, but never like that. Watching and listening to stories of families that live that state for infinitely longer was utterly humbling. Both the children and their parents have strength beyond anything you imagine when your child is first placed in your arms, or through an incubator porthole. Love is a force that truly is incredible.
Yesterday at work, I had one of the more enjoyable tasks I do: filming rehearsals with the dance company for the new piece which is being choreographed. The new production is a telling of favourite fairytale Rapunzel, originally a European folk tale that was collected and retold in the Brothers Grimm book in 1812. There are several variants of the story which pre-date this, including Petrosinella in 1634 and Persinette in 1698 which all have in common the story of a witch stealing or bargaining a dearly wanted child away from her parents and locking her in a tower until a prince finds her and begins to visit her by climbing into her tower from her long hair.
As a child reading the story, the bit we all focused on was Rapunzel being in the tower and sneaking her prince in while she falls in love before being banished by the evil witch: the stuff of drama and romance. As a more mature understanding, it is quite a complex story and there are more illicit and darker undertones. In many variations of Rapunzel, she is banished because she has become pregnant herself, which is how the witch or Dame Gothel figure finds out about the nimble-footed prince. It is as much about desire, sexuality and fertility as it is about princes and princesses and good conquering evil. But before this section of the tale, is the beginning whereby Rapunzel leaves her parents, which before I had never given much of a second thought to. Of course, it is just a fairy tale and has no basis in reality, but it is powerful the notion of parents giving up their child in any form, fictitious or otherwise. As I watched, I thought and reflected as a mother on how it might be to have my only child snatched by a sorceress (as you do). A lump rose in my throat-as a parent who has been through NICU I know all too well about separation and the fear that you may never get your happy ending. The idea that I might have lost the sunshine in my life made my pulse race and my thoughts strayed to real life parents who for many assorted reasons have either been separated from or lost their children.
The studio was warm and the dance was entrancing and emotive, and I happily sat with the camcorder in the corner when my manager walked in. She came over and said in a low voice.
"Your childminder has just rang; she's concerned about Wriggles."
My childminder never rings.
She has only rung about once before in over a year she has looked after Wriggles. She has a remarkably high threshold for sick or cross babies and is full of common sense and does not take things like this lightly. She will exhaust every avenue before ringing.
My little world suddenly slowed down and came to an abrupt stop.
I ran up to the office, stubbing my toe on the way out. Pelted up the stairs and shaking, scrabbled to find the phone and her telephone number. My hands fluttered and my heart was in my mouth as it rang. Wriggles had had one her "moments" again. No one is quite sure what causes them, but every now and then she will get horrendous and prolonged coughing fits out of nowhere and become very breathless and chesty sounding. You can audibly hear copious amounts of secretions rattling around (mostly transmitted upper respiratory although they can also be lower respiratory too, particularly in her right lung which is the most scarred) and her breathing becomes very rapid with recession. Sometimes if she makes herself sick, they pass quicker but this is by no means a given, and it is usual for them to last several hours at a time. Although they have some similarities with asthma attacks, doctors are confident that it is not asthma. To me they seem to be connected to sleeping or feeding and the doctors have said it may be a side effect of reflux and chronic lung disease that hopefully she will grow out of in time. It could also be as her airways are still very narrow as a result of prematurity that any catarrh can block them very easily.
I left as quickly as I could, losing one sock in the process (later located in handbag: no idea how). Wriggles was calming when I got to her but still very chesty and breathing fast. She had not been able to take any fluids to help because of the coughing and chestiness and as I was nearer to the doctors than hospital I decided to cross my fingers and take her there and hope it was the right decision. Luckily it was, and we got to see a doctor who has seen these episodes before with Wriggles. It was beginning to pass after about two hours by the time we saw him: typical! He was very understanding though and found an ear infection and catarrh as well as advising use of inhalers and antibiotics for the next few days. Panic over... We returned home via the supermarket with some ice cream as a treat.
Wriggles went off to bed with some persuasion and I let out a long breath. Compared to some of Wriggles' escapades it was so minor. But there is nothing like reawakening fear to put you on high alert and dredge up memories and anxiety. Having seen some pretty horrible sights of Wriggles being on the edge that are burnt into my memory, every tiny and slightest threat brings them back to the forefront. Do I think that Wriggles having an increased work of breathing for a few hours will send us to Intensive Care? No, I do not. I know what merits an ambulance and an emergency and what merits scanning the shelves at Boots. I don't automatically assume that every single infection is life threatening. But living with memories is a curse as well as a blessing. Because for a split second, fear overpowers love and knowledge and you realise that you cannot ultimately protect your child from everything, try as you might. And that, is scary.
We have spent a fair amount of time hanging around in hospitals. They are tiring places. When we escape, people often expect us to be serene and well rested. Well, Wriggles might be but I am normally frazzled! Getting back into the swing of life can be a bit of a chore when you just want to curl up on the sofa. Luckily right now we are going through a good patch, after most of April being on the nasty and testing side.
Reasons why being in hospital is wearing:
1. They are normally either quite hot or freakishly cold. Assuming it is the former, then after a few days of smugly marching around in shorts and flipflops, you feel unnaturally sleepy due to oppressing heat and lack of fresh air. You feel permanently dozy and of course the minute you drop off, the doctors will finally start their rounds.
2. Well would YOU like being a zoo exhibit? Even if you are lucky enough to be in a cubicle, there are continually people charging in and out. Many for good reason but this doesn't make the utter lack of privacy any less infuriating. Like the above point, if you dare the lock the bathroom door to get dressed or go to the toilet, you will miss the one meeting of the day you have been waiting for. Just to enhance all zoo-like feelings, the nurses like to point all equipment with reading to face the corridor and nurses station. Although this is useful for them, it does mean that every bugger who so much as saunters past will goggle into your room.
3. Whoever got a good night's sleep a) on a camp bed b) without a proper duvet c) with people banging in and out every few hours to administer drugs and record observations? Who knew so many things could go beep?
4. If your child is connected to a series of beeping equipment, the likelihood is they are quite poorly. That is worrying for you. Even if you know they will be fine, it does not take away from the fact you are anxious, worried, scared and exhausted from all these. You might also be angry with you know, life. These intense feelings are energy sapping. And don't say relax. That is neither helpful nor possible.
5. Recounting medical histories approximately 6532971 times in one admission really addles your brain to the point you are convinced you are wittering gibberish and must have made some of it up. If there are bad memories attached to said histories, it is quite probable you will struggle with confronting these on a daily, often more frequent basis.
6. Lack of nourishing food. I am yet to come across a parent who ever consumed their five a day whilst in hospital, without outside catering and a bottomless wallet. The main food groups for your duration are caffeine (plural), sugar, carbohydrates and whatever looks least congealed from the canteen or food trolley. You also loose track of meal times for yourself and either end up having dinner at 10pm after finally settling a poorly child to sleep and meeting the night shift before being able to briefly sneak out the ward or get to 10pm and fall asleep.
7. While your child naps (if they are able to) or is knocked out by drugs, a popular past time is reading. If you can read the 300 page intellectual book in your bag, you may come from another planet. Often the only reading matter available is out of date gossip magazines or children's books. Neither of these are horrendously problematic but do have a tendency to turn your brain to mush. After the last stay I had, I had re-read two Jacqueline Wilson stories and knew all the names of The Only Way Is Essex cast, which I have never before or after watched. I have not been able to concentrate since on a grown up book as my reading age and attention span has plummeted.
8. It is exhausting trying to cheer up a (justifiably) whining poorly child. They will require your undivided attention and total love. In return for reading and re-reading their favourite book about 400 times in an hour, they may share their virus or vomit down your last clean t-shirt. On rare occasions, they fall asleep on you rather sweetly.
9. Cabin fever is unavoidable. Paediatric wards are not babysitting services. If you would not leave an 18 month in her cot whilst you popped down to the supermarket, you cannot leave them here to go for a walk. Obviously if they are (fast) asleep or you can collar a play nurse, friend, partner, relative or gain permission then you can escape temporarily. Key word: temporarily. However, the over priced coffee shop downstairs never felt so liberating. You do feel like you have mislaid a limb though. The only solution I have found is to hum the Muppet Treasure Island 'Cabin Fever' song to lift spirits:
10. Worried relatives and friends expect constant updates to save them from worry. If you are unlucky, this can spark off unkind words when someone criticises you for leaving it over 12 hours or longer between something happening and you knowing. Managing family politics ontop of everything is not for the faint hearted. Telephone trees are ideal for stressful situations. So is compassion to yourself: right now, focus on the moment. Everything else can wait. Except sometimes it doesn't. If you are struggling, do ask for help. Fighting friends can fall over themselves to keep the small stuff ticking over if it helps. It doesn't make you any less brave to accept kindness.
I am eternally grateful to all medical staff and this is not intended as any form of criticism of the NHS or hospital protocol.
Generally I have a lot of love for doctors, indeed most medical staff. I have felt very well supported by both specialist teams and also from my GP surgery. My previous GP surgery was about as much use as a chocolate teapot and the Out of Hours doctors range from rather nervous to a bit hopeless in my experience, but generally my surgery have demonstrated much that is brilliant about the NHS. The GPs have been very positive in supporting my mental health, and in the main have been very sensible about Wriggles. There however nearly always is a duff one. Today we got him.
Wriggles has a cough again. A cough that is full of mucus and dried blood and that is causing her to be a blimming nightmare to get any fluids or medication in. We have been up through the nights and been reliant on our trusty Ventolin, which while usually does bugger all, now she is a bit older, is quite good for semi-emergency use at home, before having to bother the doctors. That and vomiting are the only things keeping us home, as the coughing fits have a nasty habit of inducing dusky colour changes and labouring her breathing as well as clearly causing acute and prolonged distress. So our little inhaler friend has been living within arms reach and being used fairly frequently. As this has been ongoing for at least 48 hours and the use is moderately frequent, I want a second, well first opinion from a trained doctor rather than the cobbled wisdom of previous admissions and common sense from my head. Plus, it has been drummed into me to seek regular medical advice should we be in the position of using it regularly especially if combined with other factors like a temperature (check!) and potential for dehydration (check!).
The GP now looked at me as if I was mad.
Wriggles was doing her infuriating trick of looking the picture of health if as white as a sheet, whilst twenty minutes earlier she was teeming with mucus and screaming in pain. At the time of making the appointment hours earlier she was refusing all drinks and had not urinated for some long hours. Now, she just wanted to creatively rearrange the paperwork on his desk.
He admitted she was well on the way to being dehydrated as she was a borderline case now but was very chipper about the whole thing, as he did a test to determine how hydrated she was or wasn't. He was boggled that she is not on solids: "And does she, you know, actually grow?"
And then, after describing the coughing and chesty episodes that had plagued the last days he seemed perplexed about administering Ventolin to open up her airways, which are narrow and easily clogged. I had explained that not giving her anything leads to breathing difficulties. He didn't seem to understand still.
GP: And what if you didn't give her ventolin?
Me: [trying to work out if he is asking a strick question] I haven't actually tried that at home yet. But from experience, generally an emergency admission to resus following respiratory distress needing oxygen, nebulisers and sometimes IV fluids and continual monitering as her heartrate becomes erratic. When it has been held off in a controlled environment like hospital, her breathing becomes worse and worse and she becomes tired, disorientated and takes even less fluids if possible and will still need either a bronchodilator inhaler, nebuliser or oxygen in the short term after delaying it. There is a reason why we have been prescribed it and told to use it when a virus or respiratory infection is present!
I know they have to be careful that untrained parents are not self medicating. I know they have to ask routine questions.
He nods and leans forward in a conspiratorial manner. "Is she your first child?" he asks in an almost pitying voice.
I could have lobbed the Duplo brick Wriggles had at his head.
I am acting on advice given to me by the hospital who look after her care in the main and have witnessed her in various states of health over the year! I do not sit in surgeries for fun or as a hobby! If i thought I could be managing this ticketty-boo, we would be sat in front of CBeebies at home! Believe me, I would swop you for a mug of coffee and a chocolate finger right now if I could.
Thankfully, she has perked up a little and the coughing is subsiding this evening. She has even had a wee (I am sorry Wriggles) and a tiny drink. I however, am still in a huff!
They certainly aren't allowed to be ill when there is just one parent, an absence for 300 miles of family and your fall-back best friends are on holiday in London or Canada. Yesterday, I was caught utterly short by this predicament.
I have been exceptionally lucky and only be truly knocked out twice so far in my daughter's lifetime, but they are times I would really rather not repeat. When there is literally no one to step in, it is really tough. Not wanting to sound like a whinger, but surely if there was a benevolent force, single parents would be made immune to all bugs, viruses, lurgies and exhaustion at the pinnacle point of singledom?
After writing my last post, we ended up back in hospital within hours. Wriggles was refusing all hydration and vomiting medication and syringes of water back up. After a breakthrough with a spoon of runny ice cream, I was convinced we had crack it, but soon this came up with copious amounts of dried blood. As the afternoon wore she grew floppier and more lethargic and I began to panic. Luckily we still had open access after being discharged just hours earlier, and a phone call to a nurse confirmed they were keen to see her. Being a pessimistic sort, I decided to take along some jimjams and spare clothes as well as a washbag. Just In Case.
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.
I don't really want to write another down hearted post again after yesterday's weigh in, but Wriggles has got a sniffle.
I know, I know. About 90% of babies and children and a large population of adults right now have a sniffle. If it is not one bug, it is the other bug doing the rounds. Basically, it's still technically winter and everyone has the lurgy or if they are lucky, is just getting over it.
It has been months, five long months in fact since the last bug. But hearing her snuffle and cough is enough to set my adrenaline cursing round my body and reaching for the holdall which I have always used as the Hospital Bag. On autopilot, I reach for the phones to check they are charged and that I still have the out-of-hours doctor and NHS Direct stored. I panic; have I got enough cash for a taxi just in case? Last spring to autumn I always had spare money in the house as bundling an ill baby into a taxi headed for the nearest A&E became a weekend hobby. I knew the postcode to the doctors surgery by heart and could recite all medical history and current medication in seconds.
