Mixed Start to the Week

Yesterday we had a respiratory follow up at the hospital Outpatients clinic. Although we have been busy with home visits for physio and a short speech and language therapy group, it has been a while mercifully since we were last at hospital. Typically, it had to be the sunniest and nicest day it has been in a long while (...2012?) so we set off early, driven by Wriggles shouting "[S]WIIIIIIIIIIIIIII[NGS]" like a mad child and shrieking if I deviated to do anything ridiculous like locate shoes, brush my teeth or get dressed along the way. To her approval we got on the bus and arrived at Leazes Park which is helpfully opposite the hospital and houses two playgrounds and a rather large lake containing ducks, geese and some enormous swans. I've waxed lyrical before about our playground love, but we really can't get enough of them. Due to her lack of independent mobility, few other places or experiences give her an opportunity to let off steam and energy at her pace. Or indulge her scarily daredevil side.

 

 The appointment was a bit of a let down. I was hoping we'd see either our named consultant who took us under his wing last summer and made the order to place the feeding tube, or either the other senior consultant or SHO who both know Wriggles very well and whose judgement I trust, which is more than I can say for some of the paeds we have come across. Instead we got a new registrar, who was very nice but also very new and said "Ummmmmmmmmmmm..." a lot. In the end, she waited until one of the senior consultants was free to run things past him, which although was reassuring and improvement from some previous appointments, I'd have preferred to wait and have the actual appointment with him to talk things through myself. 

The upshot was that until we have the consultation with ENT about removal of tonsils and adenoids, respiratory can't really move on with much as things are currently stable but could be improved. Since the tube was placed, the admissions and chest infections have decreased massively. We have had one queried aspiration admission, one viral admission and otherwise have broken the cycle of hell and managed bugs at home...albeit only just sometimes. Now that side of things seems better controlled, it has become increasingly obvious that reflux flare-ups are very much interconnected to chest health. It is quite common to become quite reliant on salbutomal inhalers during a bad reflux patch and Wriggles quite often acquires a blue tinge around the mouth when refluxing. So her reflux meds have been upped and the ENT department are being chased. Wriggles mouth-breathes a lot and constantly snuffles, which could be a symptom of her over-large tonsils and adenoids at least partially blocking her airways. This could potentially be putting extra pressure on her diaphragm, aggravating the reflux. So hopefully, taking them out will make an improvement. Please. If not, a fundoplication was mentioned again-although we have some bridges to cross before that luckily. 

Annoyingly, yet another video fluoroscopy referral has got lost in the system, and until that which will assess how "safe" her swallow is now, we still are a no-fluids-orally zone. By the time we get the VF done, it will have been over a year since Wriggles drank anything and I very much hope our feeding/speech and language therapist comes out the woodwork to help with that as I suspect it will not be easy. She never could drink from anything but a particular teat on a bottle and never thin liquids as she choked, so I do really hope we won't be left alone to learn it all from scratch, especially as a will-be-3 year old is a different kettle of fish to an under 1. After clinic running over an hour late, we then had a nice long wait to pick up new dosage meds from the hospital pharmacy. What a treat.

Frustrated by waiting around, being made to sit in her buggy ("WALK!"...which I wouldn't mind, but she tires after a very minute distance thanks to the cerebral palsy and more common Toddler Syndrome, thus making 100 metres a game of musical buggies) for part of the ride home and life in general, Wriggles resumed her tirade of shouting incomprehensible gibberish non-stop, so once home in desperation I let her torture wash Long-Legged-Mouse who has become the victim for most mischief since Noodle the beloved hedgehog got felt tipped and had to spend the night in the airing cupboard which vexed both Wriggles and no doubt him. In the last week, Long-Legged-Mouse has been attacked with Grandma's blusher, repeatedly drowned and nearly been fed to some giant fish.

I don't know what or whom was wetter; Wriggles, Long-Legged-Mouse, me or the kitchen floor, due to a faulty plug in our water table. All were thoroughly soaked, but it used up a fractious hour and finally removed the traces of makeup from poor Long-Legged-Mouse. I hung her out to dry by her tail (it's a tough life) and filled up a large plastic box with water and bubble bath, stripped off the sopping toddler and let her have an impromptu al fresco "bath" just outside the kitchen door on what I fondly call our balcony. Sceptics might call it the top step of the industrial stairs down to our concrete yard. 

To round it off, we kindly treated both our street and the back street of the next one down to my tuneless 'Five Little Ducks' accompanied by my backing-shrieker before Wriggles paraded her bare bottom for all to see. I wish the NHS would provide at least a complementary bubble bath or such for Mouse Washing or such activities needed post-appointments. I can quite empathise with Wriggles that she does get very anxious during them, particularly when they insist on weighing her and checking oxygen levels and thus is a nightmare as she can't quite calm herself properly after them, but it doesn't make looking after her any easier when she just shouts gibber until bedtime as a result. Maybe next time I'll put it in the comments box.

Mental note: request next hospital appointment to fall on a truly rubbish WET day.

Summer Loving

Back at last!

Little blog, it has been so long! 

After a long drawn out farce (TWO MONTHS, TalkTalk, TWO MONTHS) with installing a new telephone line in our new house, at long last I am finally connected to the Big Wide World again beyond a decrepit and irrational mobile. Wriggles reached the point where taking a laptop to a café or such with wifi to connect with all things online became not an option. I did try once; I went armed with a Mr Tumble comic, two toy hedgehogs, Quavers AND chocolate buttons, the favourite book of the week and spent a terse ten minutes fishing stuffed animals out my coffee, removing CBeebies stickers off my laptop keys and trying to shield technology from a tsunami of drinks, snacks and the sticky hands of a bored toddler who had climbed onto the arm of a sofa and was balancing precariously. Needless to say I got nothing done.

So we have moved in to our new place and have been quite happy pottering and settling in. Although not hugely busy, we have been up to quite a lot and trying to make the most of the brief snatches of sun as well as  drenching mummy  finding out about puddles during the rest of the time. Wriggles seems to have grown up again behind my back. She looks older, less like a typical toddler and more like a pint sized child with a wilful glare. Although she coped well with the move, it does seem to have accelerated her toddlerisms. It turns out I was kidding myself if I thought she had learnt about tantrums before or being a pest. Noise is her forte and she is not afraid to use it, especially if I dare take her shopping in the buggy (otherwise known as a fate worse than death). For someone who cannot yet walk independently she is adamantly averse to spending anything longer than two minutes in said buggy, which is a shame as she has finally put on some weight and at the heady heights of 12.3kg is a bloody great lump.

I will elaborate more but here are some of the things that have happened since the end of March in no particular order:

• physio confirmed that Wriggles will need to start wearing splints (AFOs) for a few hours a day to ensure her dynamic tone doesn't start hampering her range of movement, balance or teach her an incorrect gait pattern (wonky walking to you and me. It has already been noted that she walks a little like John Cleese in Monty Python's Ministry of Silly Walks. Funny now, far less so in the playground). The Piedro boots aren't quite hitting the spot on their own. We're just waiting for the appointment to be measured and fitted for splints. "She can choose her own pattern!" they said cheerfully. I am not sure that will be consolation enough but needs must. No one said things were easy all the time.
• Wriggles has become obsessed with Bagpuss. I admit to gleefully encouraging this as it does beat Baby Jake and other Cbeebies rubbish at times. Her favourite episode is without a doubt the Mouse Mill with the chocolate biscuits, and she asks/demands for "mouse!!!!" or "choc[olate] bi[scuit]" if she claps eyes on my laptop.
• her speech is either finally making some strides or I deserve a degree in translation. We still rely heavily on a mixture of Makaton/BSL signing to decipher sounds, as she can only pronounce either the first syllable or letter but her signing is getting quite clear and she has at least 70 'words' she can use singularly. They aren't all consistent and not all clear, particularly without signing or a context but it has to start somewhere.
• talking of speech, I had to waste several hours of my life throughout April attending a speech and language 'help' group. I am sure those devising it meant well and I truly hope it helped some of the parents attending but I can honestly say I have never felt so patronised, belittled or talked down to by NHS services and I have seen some pretty annoying consultants in my time and had to have a rather humiliating argument in the middle of a ward round in NICU when a consultant questioned my cycle dates and conception date for Wriggles, insinuating I was either fibbing, mad or forgot occasions I may have had sex, in front of a large audience and at a time when I was incredibly fragile, as was she.
• I have had some lovely evenings painting, re-painting and 'upholstering' some rather knackered furniture I own. Thank you Dulux and your 3 tester pots for £1 offer.
• Wriggles has had her first hair cut. I did it in the bath and hated it straight away, although am used to it now. I think it was the shock of seeing her less like a baby and looking more grown up.
• we met a real life baby when my closest friends from university came up for a glorious and memorable weekend, one bringing her 10 month old son. Wriggles was warily fascinated and carried around a photograph of the pair of them after he left and has become very interested with the idea of babies (although does refer anyone under about 5 as a baby). I in turn have also become interested with babies and ever so slightly broody, though this is now wearing off as I contemplate the idea of having two noisebags in the house, not to mention not possessing a man.
• I have ever so slightly started dreaming of trying to re-start non-child related hobbies. Recently we went to a picnic style gig outdoors and I briefly had a turning lindyhopping with a good friend and only fell over once. I danced (badly) all the way through university and it suddenly broke through to me that though I love being Mama I also am beginning to miss being Amy.
• we are officially doing the Blended Diet having confessed to the dieticians who are better than I thought about it. They were very damning on the telephone then turned up with a stack of recipes proclaiming "Shhh! You didn't hear it from us!. Our community nurse advised us to be a bit creative about how long we have in actual fact been experimenting and to let them think it is all their idea. So far, so good. We have also FINALLY added chocolate buttons and Pringles (red flavour only) to Wriggles' oral diet.
• I have my own bedroom back. It feels a little disloyal, but it is minor bliss.
• Wriggles fake-cries to try and get her own way or if I tell her off for being a pest. It can be like living in a very poorly directed pantomime at times. With less sequins.
• I decided to be frivolous and buy Wriggles a pair of spotty Doodles shoes for summer. She calls them her Mr Tumble shoes and definitely prefers them over her Piedro boots. So do I (orthotic benefits notwithstanding). After getting fed up with constantly seeing other toddlers progress so quickly and battling with a newer physio regime of more exercises, a walking frame and seeing on some paperwork Wriggles officially described as 'disabled' I needed something obvious and rooted in so-called normality and it turned out £15 canvas shoes that will probably not last long was it. It felt good. I am acutely aware things could be far more complex but they also at times, wear me down.
• we have found a new music group nearby which Wriggles really likes. This makes me feel less guilty about avoiding toddler groups and dragging my heels about looking at preschools. She has picked up the group routine, language and actions remarkably fast and I am now hoarse at the end of bath times after singing all the songs we have learnt.

Alternative Physio

Between every week to two weeks, we have physio through the NHS for Wriggles' cerebral palsy. We also have a rough program to follow in between times, focusing on leg stretches and some work on the pelvis and core. As well as this traditional physio, I am lucky that despite not being able to walk on her own, Wriggles has cruising skills and loves a sense of danger....making the playground an excellent work out! When the weather is permitting we go often, and it really does help as there is also an incentive for her to do things.

One of the great things about the climbing frame is that it gives her the ability to help walk forwards holding on either side. This is definitely one of her weaker areas as her core is wibbly wobbly. If she could side-step and cruise to get around, she would. Actually, if she could crawl she would but she is slowly figuring out that crawling on ice, snow or mud is not as easy as trying to walk. When going forwards with her hands either side on the bars, she tires easily and walks much slower; you can see the poor sausage working hard! She is now a dab hand at her beloved stairs and pulling herself up, although during the latter her legs often get confused and bend awkwardly. Her balance and spatial awareness also get a good work out and the swings help her sitting which of recent has been a bit more unpredictable as a growth spurt has confused her hamstring muscles which impacted on her posture. 

And above all, the playground is wonderfully enjoyable and doesn't feel like a chore at all! Even if people assume she is far younger, we don't get as many second glances as I hobble around holding her up, or if we do we're having too much fun to notice.

Fake Snow

It snowed A LOT up here. It has been frankly a nightmare to get anywhere; five minute walks lasted over 25 minutes getting repeatedly stuck in the snow and ice and I became thoroughly disenchanted with the white stuff. Being in a block of flats, we are without back garden to make exciting amounts of mess and I have felt too tired  and grumpy  all week to make wildly creative things inside. I read Mummypinkwellies posts about snow painting and bringing snow indoors and Edspire's snow play-dough and felt really I should make some effort. Not wanting to see any real snow again until the tail end of the year, we went with a decidedly fake option. I dragged Wriggles to the playground yesterday and she understandably got fed up pretty quickly. I don't blame her, it was cold, wet and there was no one else around (possibly because they had the sense to acknowledge the former two reasons). So today I some things in the messy play table and let the small child loose. 

Not fun anymore

We used value cheap-as-chips plain flour (that was slightly out of date anyway and needed using up before I mistakenly poisoned myself via baking) and some icing sugar which smells nicer and is slightly whiter to give it a good snowy appearance! Then, the poor Playmobil figures got very messy. 

I helped it "snow" with the aid of a sieve...

And that was some peace for all of fifteen minutes or so!

Toddler activities do sometimes put me off because the time spent preparing and cleaning up normally is vastly more than the time spent doing. Wriggles has a very low attention span unless it is something familiar or that she can get obsessed with. This one we spent about fifteen minutes playing with and then came back later intermittently through the day. And when it comes to cleaning up, it can go in the bin and the remains get attacked by the Hoover. Hooray! 

40/52 Whhheeeeeeee!

Parks, parks and more parks

I have blethered on about the wonderful parks of Newcastle before and bargainful days out there so I won't go on again. Today, after just making it out the door on time to a music group we spent some time in the city parks as the sun was out and although crisp it was otherwise lovely. Plus, I really couldn't face going back home straight away and facing tantrums if I didn't read A Squash and a Squeeze about a million times. 

King John's Palace...or what is left. Never actually stayed in by King John

We were closest to Heaton Park so went there first. There are five parks that inter-connect and form a very green corridor of several kilometres through the east to the north of the city. She deigned to tolerate a brief stop off at King John's Palace or what is now remaining. King John's Palace, was actually the fortified house of Adam of Jesmond, a knight and supporter of Henry III. The house is dated circa 1255, and the last date recorded for Adam is 1270 when he went on the last crusade never to return. He was not the most popular chappy and his house fell in disrepair and by the 1500s was already a ruin. Luckily, Heaton Park is one with some play equipment which pleased Wriggles greatly after her short history lesson.

 An hour passed very quickly and after a brief argument about wearing gloves (I lost, but like to think I won in some respect as I was not the one to then suffer chilly fingers) we plodded on to find somewhere to have lunch. An impromptu picnic on a bench in an idyllic spot was abandoned after an almighty tantrum that probably gave all surrounding wildlife a heart attack or at least, colossal ear ache. It wasn't a long walk further through the park and over Armstrong Bridge to Jesmond Dene where a cafe and visitor centre is situated. Wriggles is slightly better behaved in public sometimes so I voted us indoor lunch. True to form she fluttered her eyelashes at the table next door whilst declining her lunch is a slightly less vocal manner.

Heaton Park

 After  giving up  finishing, I attempted to tire her out going around Pets Corner where they keep animals and some birds and then getting to go in another playground. As normal, I was tired out first. I am constantly amazed by limitless energy of toddlers and that they do not tire of the same activity (going up the steps to the slide) about twenty million times on effectively an empty stomach.

Finally, we got slightly lost going back through the parks. As I have lived in several districts over the years and been a public-transport-avoiding-penny-pinching-student for some of them, I have pretty good bearings on walking through places here even when I have no idea ultimately where I am. And as detours go, this was a beautiful one. We walked along the bank of one of the Ouse tributaries and found our way back. All in all, a highly satisfying day out. When I got back, I was in a good enough mood to read books for well over an hour before pleading with Wriggles to try another activity: I failed.

Ouseburn, off Benton Bank. Recommended to get lost in

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....

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?

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.

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!

Two

I am very nearly 2. 

In corrected terms, I am 21 months old although they have stopped correcting my height and weight. I have finally passed the 10kg mark and am 78.4cm tall! I have just started to wear 9-12 month clothes and my new shoes are a size 3 (19).

Developmentally, I am (apparently) somewhere around 14 months with an extra heap of inquistiveness thrown in. I can crawl, pull myself up and cruise, especially well sideways, and am very good at climbing-mainly on very wibbly wobbly chairs when no one is looking for a split second. I can crawl up stairs and sort of down stairs but I do not like anyone helping, even if I am about to rolepoly down them and bang my head. I am beginning to learn to throw as well as drop and I can make babbling noises. I can eat some things but am not very good at swallowing and think food is generally overrated and rubbish apart from Quavers.

I can sign about 25 signs in Baby Sign Language and Makaton. I am beginning to be very noisy when doing some signs ("mama" and "star") which I think my mama is hoping is about to herald some real words! Most of my signs are animal based, which makes me look very well-educated when we go to a farm. I am beginning to be VERY INSISTENT making a noise when pointing and signing "star" and am very good at finding them, even the teeny tiny ones. Mama said I sounded a bit drunk: she is so rude sometimes.

I know at least what a nose is and also, knees, toes and fingers. Sometimes I can remember a head but don't hold your breath. When we read my favourite book "A Squash and a Squeeze" there is a line that says 'my nose has a tickle' and I always grab my mama's nose at that point which makes her read in a really silly voice. I am extra good at beeping noses when I hear something else beep, like the lift.

I love books and have favourites which I am never tired of hearing again and again and again and again! My favourites are Ten Fingers and Ten Toes, A Squash and A Squeeze, Not Me and We're Going On A Bear Hunt. I have met the Gruffalo but wasn't really that bothered.

My favourite colour is yellow. At least, that is the felt tip I always make a bee-line for. Felt tips are quite good on paper but equally good on carpets, xylophones and in grown ups diaries. They are best when scribbled up your legs, hands and feet. Mama is very distrustful of ones that claim to be 'washable'. Talking of washable, last week I discovered turning buttons and dials round so I can now operate the washing machine!

I have very recently discovered pointing, pinching, hugging and throwing a wobbly when told "no". The latter is really funny in public. If I could stand up I would definitely stamp my foot. As it is, my legs get confused and I end up jumping. I have recently found out about the wonders of climbing. Back at the beginning of July, my mama and her friend helped show me how to climb up stairs. Mama really regrets this now because I am OBSESSED (she says) with stairs and can scale up a chair, cardboard box, my buggy or a drum pretty quick.

I really, really like going to hospital and seeing all my friends the doctors and nurses. They have really good badges and keyrings and funny things that hang around their necks to listen to your chest. Sometimes they let me play with them. I can put a stethoscope on if no one is looking at me. I can also draw up and empty a syringe and know how the buttons on my feeding pump work.

One of my favourite games is throwing everything out of my cot of pushchair. Mama is not quite so keen on this game, except for first thing in the morning as it means she can wake up very slowly just blearily lobbing Rabbit across the room.

My favourite thing ever is water play. Baths are good and so is painting but water play is the BEST. Taps are lots of fun and so is splashing grown-ups. So is sitting in rock pools and crawling into the sea. If I can't do any of those things, then the next best thing is a swing. Slides are brilliant sometimes but sometimes are a bit scary.

Happy nearly being two to me!

Crying Out

Wriggles used to be an excellent sleeper.

I mean that in toddler terms. She used to want to go down far later and get up far earlier than I intended, and is a keen cot-bar rattler and has discovered that scraping nails down a wall is an excellent way of kickstarting sluggish mummies. 

Also, she snores and fidgets. If you didn't look, you may well believe I am keeping a drunkard chap with nasal issues in my cupboard. But no, on inspection, it is one peacefully restless toddler with the blanket over her head. I have shared a bed with her and it is not as relaxing or reassuring as I had hoped. She took up the vast majority of it and I was in danger of being under attack all night.

Still, for a person of her age, she has been a pretty standard sleeper. I would give her at least 8/10 and a silver star with room for improvement especially on weekend mornings and naptime. 

Frankly, I am blaming hospital for an abrupt change. Now, bedtime appears to have moved back to nearly quarter to nine in line with the nurses changeover of staff and any last ward rounds and obs. Fine, I can handle changes in bedtime. Something moved once can be moved twice. Naptime appears to be negotiable (it is not negotiable, Wriggles. Not yet) which is less than pleasing. But what rankles most is the crying out. The sudden cries of distress that pierce the night, a sobbing inconsolable Wriggles screaming in her cot. Most nights and nap times, my fiercely independent cheeky chops will only let go and nod off if I rock her to sleep like tiny little baby. Sometimes, it does seem like pain (gastronomy, I'm looking at you) but mostly like pure fear. And that tears at my heart. Is she crying because she is scared she is alone? Is she crying because she thinks someone is going to hurt her-again? How can you placate a small child who doesn't understand some pain, like necessary procedures, are for good even though they hurt? Does she remember and fear? Does she wake up, find no immediate mummy and think she has been left? Does she remember being put to sleep with the anaesthetic gas; she was clearly scared rigid, thrashing and screaming as she was lulled under? Or is it standard child nightmares of monsters and witches? 

Give me the monsters any day. I have both a broom, mop and whole pair of slippers to chase monsters away and coax them from under the beds, but doctors? Sorry Wriggles, I can't get rid of them.

35/52 Errrr.......

Home Alone

And, so today is the First Real Day of being home alone, with a new tube. Although not that different from an NG, it feels a huge step. You see, the NG felt familiar. Yes it was horrid to be re-passed so often and we got a fair few stares when out and about, but it was what I knew. From NICU and from time and time again during periods of hospitalised illness and the failed plan A, I was fairly good at working and caring for the NG. I knew the pump and gravity feeds, I knew about aspirating and pHs. I knew what number it was passed down to (28) and that there was no point putting a silk (longer term, can be left longer before replacement) one in because they never lasted longer than 3 days against Wriggles' reflux. With the PEG, or G-Tube, we still have the pump, the same feed, the same volume, aspiring to the same pump rate, the same medication, the same port on the tubing line to give medicines, the same routine...but one big difference. It was applied during a surgical procedure, meaning there is a wound; the stoma site. Caring for a surgical wound is not quite the same as taping Hypafix (breathable adhesive) to a cheek. On a scale of hardness to do, it is hardly up there, just takes a bit more time in the day and extra care in keeping things sterile and clean. An infection broke out before we had made it out of hospital so she needs antibiotics twice daily and gauze over it to keeping it (and her clothes!) protected. Still, barely rocket science.

But my goodness it feels draining.

It is because it is the more intrusive physical evidence yet that a) there has been a rocky road and b) that is not going to go away any time soon? (The tube that is and rocky road)

I'm not going to sit here and amateur psycho-analyse my feelings towards tube feeding or anything else. It would be nothing short of dull and do no good at all. Let's just leave it at yes I am mighty glad for possibly the first time since leaving NICU she is receiving a sufficient intake of both fluid, calories and vitamins and minerals, yes I am really relieved that part of the battle is quits now and yes I am over the moon that the risk of aspiration pneumonia is reduced  but also yes, I hate it. It sticks out, it causes my daughter some pain right now and frustrates her because she can't understand why she is too sore to crawl or sit for too long by herself.

Presumably because anything using the core muscles disturbs the g-tube placement and niggles at the site, for the moment Wriggles cannot crawl or sit for long by herself. She can pull to stand and cruise for small periods of time and climb on my sofa, but as she is still weak needs watching like a hawk (3 accidents in half an hour this morning....) and frequently, help. Not that she will ask for it or thank you! I know this is a teething hiccup while her body gets used to everything and stops treating it as a foreign object, and whilst the stomach lining stops trying to pull back away. Still, it is sad to see my happy nutcase loose some independence and confidence literally overnight. Because of the increased vomiting, her feeds are a lot slower than normal so in some ways, it makes things easier, but in others there are not really words to describe seeing your tearaway attached to a feeding pump for right now, anything from 15 hours a day. We have read a lot of books.

By bedtime, Wriggles was finally able to muster some strength through gritted teeth to crawl a bit. Whilst attached to the feeding pump. Understandably she screamed, though as much in reply to me saying "Wriggles, please sit down" to it pulling. Thankfully today, all feeds have stayed down so I am hopeful to slightly increase the timings tomorrow as today there wasn't much longer than an hour between each feed. I'm hoping the antibiotics kick in soon and am looking forward to being able to catch a community nurse on Monday as the stoma is very much oozing and the tape used for the dressing seems to leave Wriggles with angry red marks. Would it be too much to ask for one thing to be straight forward?!

Still, I now feel a bit more confident than I thought I would. I started writing this at lunchtime, feeling like I was being put through a mangle (and a tiny one at that) and only a few hours on feel far more like a human being. Thanks to the fantastic Feeding Tube Awareness and their wealth on information and on-line tutorials and trouble shooting, I have worked out a better way of 'venting' the tube (removing painful trapped wind; minor bonus of having a tube) which causes more frequent vomiting and pain. Some friends dropped by around tea time, and when asked the inevitable "how long is it for?" I managed to neither snap nor cry when I said I didn't know: it could be a year, it could potentially be forever or at least the bulk of childhood. The short answer: however long it needs to be there for. Now we have gone and got it, I am not compromising my child's health or trivialising what may be a "minor" procedure but is rather an major adjustment. I know fully well that neither Wriggles not me will successfully adapt overnight and that because apart from no fluids by mouth, her dietary needs are fluid so will hopefully change as she grows, matures and becomes less aversive.

Who knows, I may even venture out for an adventure tomorrow...  Maybe!

Our New Addition

This afternoon, we returned from hospital complete with new G-tube and a bundle of "goodies" (enteral syringes, gauze and antibiotics mainly) . I would like to say we blazed in on a trail of glory, problems fixed and like two new revitalised people, but in reality we were both absolutely zonked and it showed as the afternoon dragged.

The infamous operation (placement of PEG, bronchoscopy and endoscopy) went pretty smoothly. After a minor hiccup with heating, we went up to theatre and I held a terrified Wriggles as she was given gas to send her to sleep. I thought I was prepared for seeing it, but only doors down from PICU I was completely out of my depth seeing her flop, so still and "asleep". Our kind nurse lead me out, tears streaming down my face with nightmares of PICU flashing through my head at high speed like we were there yesterday. My senses were on high alert and it felt like we had never left. Once Costa Coffee had helped calm me down, I sat by our bed and drew Wriggles some pictures to try and help explain her new wiggly worm (48 hours on and this is still not happening. How DO you explain to a tiny girl why her tummy has been perforated and hurts?) and just under an hour later was called to go up to recovery. My goodness, I couldn't get there quick enough! The poor mite was obviously in a fair amount of pain and very disoriented. As always, I have only high praise for the paediatric who were dealing with us; they let me pick her up straight away and rock her to try and make her feel better. Oceans away from having to argue about the benefits of kangaroo care!

Back on our ward, the first 24 hours were what I can only describe as rough. Wriggles barely left my lap apart from two occasions for me to go to the bathroom, and bedtime took hours to transfer her to the cot without her screaming. We had worked our way through a nice selection box of pain relief by now, both IV and through the tube which was now tolerating water feeds. She was still requiring oxygen and constant monitoring, so was a mass of wires. Over night (finally settled) she had her first milk feed at an excruciatingly low rate, which thankfully stayed down.

Thursday was better; with pain relief prescribed on the dot, she was not too bad. Her tube length had a snip as it was far too long for her  and I was ran through the basics of caring for it. Obviously still very sore and very much confined to the bed, the object of the day was slowly increasing milk feeds which were all tolerated. She even lunged at a Quaver and perked up when her baby friend from signing came to visit (with her mummy). Today, discharge day, was a little more trying. The PEG site was showing some signs of infection which have become more pronounced as the day has gone on, and the vast majority of what has gone IN had come back up OUT. Not the plan at all. I knew a G-Tube was not going to be a magic instant fix or reflux cure and that the first few days are bound to be full of teething trouble especially with an infection brewing, but it is so disheartening to see so soon and mop up. I am slowly coming to accept that there are no magic fixes or golden words or therapies or medications and that our road is a long one that no one can forecast, but accepting this is not easy at all and going to bed I felt very low, on both our behalves. Not for the first time, I thought how unfair it should be that some children experience so much so young, and also not for the first time, wondered how things might have been different if medical research and innovation had bought me a few more weeks of pregnancy to aid Wriggles' development.

The bronchoscopy has revealed no startling revelations thankfully, but has shown that Wriggles has a small jaw meaning that her bits and bobs are set further back than they should be. She had a larger than average mass of adenoid tissue and her epiglottis and larynx are a litte too near the airway for someone with known breathing problems. We are being booked in for just one more test, a sleep study, to determine if she presents with sleep apnoea as she is a noisy and restless sleeper and can be quite hyperactive in the day, with previous noting of poor growth. If this is positive, she may need more treatment in some form. The endoscopy noted a slight laxity between stomach and gullet, but nothing significant. Relief yet also a strange disappointment that there is nothing obvious that is "fix-able". 

I am nervous about the weekend. I would feel a lot more comfortable knowing that the community nursing team, gastro nurse and dieticians were on call, which of course they are not, but we have open access at the hospital if we need. I know we will get though, like everything, but in what state who knows. I trust things will get better and we will both be more at ease and more confident as the weeks progress, but right now I have incredibly mixed feelings about the new addition to our family and how we got to this point in the first place.