The Letter I've Waited For Forever

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

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

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

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

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

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

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

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

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

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

One Week On

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

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

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

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

The New Teatimes: running after toddler wielding feeding pump

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

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

Tantrum

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

They were about:

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

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

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!

A Rash Invitation

I've gone and done something rash. It's something I have been sort of thinking about recently especially over the summer when we have been lucky enough to frequent some first birthday parties and what with Wriggles' second (SECOND!) birthday fast approaching, in a fit of lunacy and madness I have asked some people over for a birthday tea. People with children. Sane, married people with children and dogs that I go for lunch with and loiter by swings with our buggy-inhabitants. I have been upfront and promised no wild excitement but parking spaces and liberal use of my kettle (evidence if ever needed that I haven't socialised with the real world in the last few weeks) and now someone has replied and I can't detract the information. I've even ordered some Very Hungry Caterpillar birthday paper plates and now am wildly trying to remember what party bag contents we might have received over the last few months.

Now, even without the ex-premature baby and dabbling in serious mental un-rest in the past factor, I would be probably close to hyperventilating. I am not the worlds most natural host. I have of course previously thrown parties either solo or with flatmates and they have generally had two factors in common: one) a bizarre mix of people, some who know too much about each other and some who have never caught sight of each other before and never want to again and two) everyone getting blind drunk to cope with point one. Granted, I have not done this strictly since pre-baby university days or been to a reciprocal one along those lines but, but, but... 

Add in the aforementioned factors and already I am a gibbering wreck. The thing is that anniversaries render me a quivering mess of flashbacks. Last year, I tried, I really tried. I knew in the lead-up I was all over the place after having haunted the wards of the hospital over the summer months with Wriggles having admissions every other weekend, so I thought I'd keep it simple. We went a music class for babies which on any other day, would have been great fun. As the opening chords rang out however, I started having a panic attack. I had to mime the whole way through 45 minutes, panic ever increasing as my throat felt like it had swollen to astronomical proportions and sobbed on the way home, finally breaking down in front of the postman delivering flowers and a beautiful message from my mother-not-in-law.

Wriggles deserves it though. I'm really not convinced she has the faintest clue about birthdays, etiquette, occasions and gathering (or that her mother is having a panic attack in the corner) but she will when she is older, and when she looks back through photographs and asks me what did we do? Was it fun? Was I cute? I want to be able to answer properly and say you were great. Everyone LOVED you as a baby and wanted to celebrate how amazing you are, so came round and ate cake and then all the babies hit each other over the head with balloons. Or something along those lines. Something light and jolly and properly celebrating how fantastic she is and that everyone who knows her really does have a soft spot for her. I don't want to dodge questions and explain when she is older Mummy just couldn't cope with painful memories. Because, yes, there are really painful troublesome memories attached. But it is also a whacking great memorial to the best thing that ever came into my life and began her own adventure in her own right. And she will not be known as an "ex-prem" forever. When she gets older, and medically and health-wise can hold her own a little more, there will be less appointments and less unexpected events and she will 'just' be Wriggles.

What do you DO at parties? How many packs of Quavers do I need? What if the cake goes wrong? Can I hide in the broom cupboard if it all gets too much?

A New Day

So a new dawn, a new day. And I feel a lot better for it!

Of recent due to disturbed sleep and later nights, we have been getting up later and doing a lot of though much-needed pyjama lazing, it was getting to the point where it was unproductive on any level. Today, we were up at 8:30am which although six weeks ago would have been a lie-in, we are still adjusting! As we had extra time on our sides, I decided to bite the bullet and go Out The House, which we did after a moderate amount of faffing. Wriggles had her morning bolus on the metro while I subjected her to some window shopping in town, meaning I could drag the feed out a big longer. We were rewarded by it staying down, and I threw caution to funny looks and stood outside H&M drawing up a syringe of water to flush the g-tube.

The rest of the day was spent in the city, doing some light shopping, some library menacing, some minor picnic-ing and then visiting one of our favourite places, the Laing art gallery. As an art gallery, it is fairly nice with every now and then an exhibition that is really worth seeing. However, since having Wriggles it has opened up a whole new aspect of galleries to me: a) it is free b) it has a dedicated pre-school area full of toys, books and sensory things c) it regularly lays on free or low-cost family events which may or may not remotely revolve around art d) the cafe does not require a mortgage to have lunch in and there are ample high chairs e) it has two easily accessibly baby change areas and f) so far no one has batted an eyelid to my child who goes around banging walls and squwarking, delighted at the echo her voice produces. At the moment they have a brilliant exhibition on Quentin Blake and some art he has produced for hospitals including a maternity unit in Angers, France, a mental health unit for older adults and a clinic for eating disorders in London. The original art works were stunning and quirky as usual and there was a lightbox for Wriggles to batter. In the cafe, I let terrible table manners (slide climbing on the sofa and shrieking to play with my water bottle-it was that or my hot cup of coffee) for the sheer relief she was feeling better!

Wriggles is slowly regaining crawling strength although still prefers to be carried around (nothing new there....) or cruise wherever possible. I think her trunk is still a little sore and feeling funny so keeping upright is more comfortable for her. After a few days of being pretty much immobile, her gait is far more noticeable as being all over the place and looking at her stood next to other children, she does carry herself in a peculiar manner. Then again, some of the children we saw today had some very unappealing and curious traits so I am not in the least bit bothered! Actually having been through this last patch is making me accept a little more and embrace that there is no magic cures or fixes and yes, it sucks that we didn't leave behind prematurity when we left NICU, but I did take home a pretty special girl and that is what matters.*

If I fall over the sides, do we get to go back to a&e?

Best. Toy. Ever

Hmmm, how noisy can I be? VERY NOISY!!

*even though I may scream if I have to read "A Squash and a Squeeze" one more time.

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!