Goodbye Rug

Recently I have been terrible at blogging, leaving long gaps between posts that I need to write for my sanity. So before I start this, here is some proof we have been at least getting on with life in between:

Ikea is to Wriggles a gigantic dolls house. A whole day can be spent climbing on or off sofas with peculiar names and hiding inside show wardrobes. All in all, a marvellously cheap day out. Actual shopping with her is a nightmare still but if a stuffed mouse can be located somewhere it makes is mildly more manageable...

One big change we have made at home in finally taking the side of the cotbed off. Until recently, Wriggles still feeding tube feeding through the night and would get so tangled with the tubing that the safest thing was to thread the tube through cot bars. However once this wasn't necessary (for now), I grabbed the screwdriver and I must say it feels great to move her into a more age appropriate bed. So many things are dictated by her abilities or disabilites that normal things like a big girl bed feels just brilliant.

Wriggles LOVES water. Now she can independantly stand and do some "wobbling" (walking to you and me. She picked this term; I am not that cruel although it sure is accurate), puddles are hers for the taking. She loves stamping her feel if you her holds or hips to keep her upright. And of course, the British weather is happy to provide!

Wriggles is still a bit of a titch so can still fit comfortably on her (cheap substitute) Smart Trike. She can't always get her legs to stay on the pedals and can't pedal herself, but nevertheless, just staying upright on it is brilliant when you have cerebral palsy as your core strength is weak. Wriggles often slumps and folds like a concertina when she tires, but she managed nearly a whole mile walk of me pushing her on her trike, holding on to the handlebars and staying upright sitting on the seat herself. Even a few months ago there is no way she would have managed this distance, so it was a great reminder about the "invisible" progress that children make.  

Then this week during half term we had our 6 monthly development review. I knew it was going to be one of "those" meetings that tax the brain and merit large bottles of wine, as a few weeks ago we had our TAC (Team Around Child, ie. multidisciplinary meeting) during which several issues were flagged up by nursery which are consistent across the board and in front of the paediatrician our SALT finally admitted she can't always make head nor tail of Wriggles' speech despite telling everyone it was all 'fine with no concerns' for months. There have been things which I have put down to being 'Wriggles-isms' for ages but as she gets older they are beginning to stand out more. On the whole she is a delightful child, but there is something I can't always put my finger on that stands out. Things very much have to be on her terms beyond the remit of being stubborn or a 3 year old and she acts as if children don't exist, despite if they are standing next to her calling her name. She still hand-flaps when excited and has language issues outstanding. If you put a gun to my head, I probably couldn't tell you yet the differences or significant things which make me thing that our journey isn't over yet within the realm of SEN, but there is something. 

And it turns out our paed agrees. In fact, he was quite upfront and told me about 10 minutes in that he was mentally assessing her for austistic spectrum disorders before I had even mentioned some of my concerns, those of nursery and some of her 'quirks'. She doesn't yet fit an obvious profile but shares quite a few ASD traits. Our paed has long said she comes across unusually-there are no clear explanations for lots of her past. Her clinical notes never match up with her presentation in real life and the only concrete thing we have to fall back on for anything is prematurity. At the TAC, our paed stated that we shouldn't be surprised if there are further diagnoses along the way which came as no surprise. At that time though, I hadn't been thinking ASD might be one. I have vaguely read things in the past about it, but discounted it as Wriggles doesn't obviously match the triad of impairments. Then I was talking to somewhat about some of her unusual patterns of speech and they mentioned echolalia. Several Dr Google hits later, and someone could have been writing about my child specifically. What I also noticed was that ASD often came up in conjunction with the hits and read a bit more about atypical presentation and within girls and begun to make me think more carefully. In hindsight I am glad I read a bit as it made it much less of a shock when our paediatrician suggested it being a possibility we couldn't rule out at this stage.

The thing which complicates things and may yet be our diagnosis is good old prematurity. Whilst many babies do escape relatively unscathed, premature birth and the sensory overload that comes outside the womb can cause brains to develop unusual pathways that will go on to process information differently which will not be immediately obvious. The upshot is that many display strong traits linked with neurodevelopmental disorders, often across many, but not fully fit the profile traditionally of any of them. They are still not 'neurotypical' but don't have a 'name' to explain it away. It can be pervasive or resolve depending on the extent and individual child. Wriggles has already had an MRI which reads as normal, which as our paed says, really tells us nothing as it can't tell you the tiny pathways which must be affected or simply put she wouldn't have cerebral palsy which she obviously does.

It is all rather complicated and a bit of a muddle: it comes as no surprise, but yet it is always a blow to hear a professional say "there is something else" even when you wholeheartedly agree. Until those black and white words are uttered there is that thread of hope called 'so -called normality' and the idea that maybe, you have just gone neurotic. Obviously to have escaped this conversation until past 3 years old, things are on the mild end for which I am truly grateful. Of course whatever end of any spectrum, Wriggles would still be Wriggles and I would love her with a ferocity and fight for her corner and what I see as her needs whatever. But some days all the mild things stack up and feel overwhelming. Much, I imagine, like how Wriggles' brain probably views the world incoming. Which when I stop and think gives me great sympathy for her and explains a lot. It also makes me feel very tired when I think what we have to achieve yet. Every time I rearrange the metaphorical rug of life under our feet, someone gives it another yank. 

I am going to have to find some metaphorical superglue.

Feeding Tube Awareness Week: day one, our story

Our first experience of tube feeding was like most preemies, in NICU. We had to wait weeks for Wriggles to be at the gestational age whereby she could suck, swallow and breathe at once and even then it took weeks to build up her oral feeding, ml by ml as she tired easily. We graduated without the tube though and settled down to a turbulent first year of life with the added bonus of frequent and projectile reflux. After her first foray into PICU (Paediatric Intensive Care) shortly after weaning had commenced with relative success, Wriggles lost interest in solids. She didn't just loose interest in it, she went berserk. At around 8 months old, I could not offer her food to eat, touch or play with, I could not put either empty or full utensils near her and I could not eat near her myself as she would scream and scream as if in terror. I was loosing my mind with worrying-my only consolation was that our childminder reported the same difficulties in trying to feed her also, so even on the darkest days I rationally knew it was probably not entirely me doing something wrong. By her first birthday, Wriggles would very occasionally and with much reluctance take small amounts of yogurt off a spoon and her bottles. Her coordination was still off to self-feed and at this point she was still not sitting which didn't help brilliantly either. "Fuss pot" didn't even begin to describe her attitude towards bottles either and she self-weaned off using a pacifiers as dummies began to make her gag and subsequently vomit. During the times we were home between hospital admissions, my flat was a homage to washing vomit out of every conceivable item of clothing or furnishing and when she went to bed I would sit and cry. Shortly after she turned one, we had a fairly serious hospital admission. It was agreed her feeding difficulties were getting out of hand and there seemed to be a very viable link to her repeated chest infections. She would go home with an NG tube.

We stayed in hospital for nearly 3 weeks whilst they ran some tests, she kicked the infection (and required oxygen) and I was trained how to tube feed. On the last day, a consultant decided to scrap the plan and re-try forcing the issue with oral feeding, different formula and a new course of medication aimed at controlling the reflux which was still at large. We were promised community help and sent home with instructions to keep stuffing her as much as she would take. The "help" was patchy and it continued to be a struggle. We tried several formulas to try and get on top of weight gain and got the reflux to a manageable level. Solids however were another issue. Over the next 9 months I tried so many things to move things along. They didn't budge. She would drink nothing except from milk out of a bottle with a specific teat and gradually she began to drop the levels she was drinking. Whilst I never had fears about hydration, her weight was another story and it became obvious that whilst the milk might be nutritionally complete, she just couldn't or wouldn't take enough of it to satisfy her body.

Looking back through photographs, I do sometimes wonder if I have got our story quite right. So many pictures are Wriggles with food; Wriggles painting herself or the chair with food; Wriggles in a cafe... The reality of course is that these relatively happier or chilled out times were SUCH high points that of course I whipped the camera out. Each time I had no idea if it was a fluke and if it would be months or ever that the time in question was to be repeated and I wanted hard evidence it could happen to help me on the darker days when I felt like I had failed my baby and wonder if we would ever get the "normal" experiences that are associated with feeding.

A (very rare) eureka moment:

This isn't a great picture, but Wriggles was getting skinner and skinnier. Prior to getting the tube for good, she began falling gradually then speedily through the centiles on the all hallowed growth chart. Even allowing for corrected age and periods of illness, she had gone from being your average 50th centile kiddo to sitting at the bottom and not looking like she was going to pick up any time soon. You could see her ribs and her arms were like twiglets. The last time we saw her dietitian before the admission, when she picked her up you could see her face fall. She said there and then "uh-oh"; I later found out she immediately had emailed our paediatrician and advised at the very least NG top ups. Fate, or rather Wriggles and her preemie lungs had other ideas though and we soon were on an NHS mini break again for most of August 2012.

 Then this happened:

Wriggles was not happy about being NG fed. I was not happy about her being NG fed. The community nurses who had to quite literally sit on her to re-pass the NG tubes she refluxed up daily were not happy about her being NG fed. But goodness was I relieved we at last had a plan. I knew instantly that tube feeding was the right thing to do, because when the consultant told me that we would be going home with one and that this was going to be our new normal for the time being at least, all I felt was sheer relief washing over me. I might not have jumped for joy but I knew we were at the end of the line: we had tried, god almighty had we tried, but things were not getting better and we were getting into riskier and riskier territory playing Russian roulette with Wriggles' health and that is not on. Tube feeding is not an easy option, it is a last resort. But when you get to that place, having a tube is like being in Monopoly and getting an out of jail card.

Luckily everyone decided that an NG was not a long-term solution and so we got slotted into surgery pretty quickly for a PEG (G tube)...

...which made things much easier! Whilst surgery is never easy and I found the initial week a struggle, it was the best thing all round. When Wriggles was first in recovery coming round after the anaesthetic and screaming the place down (whilst the nurse was reeling off all the pain relief she had already had which was not touching the sides...) and I saw the PEG dangling out of her beautiful previously unblemished stomach, I felt sick at what I had consented to have done. However, once the pain had settled down for her it was obvious that the new chapter we had started was a good 'un. Like NG feeding, we had to settle down into a pattern of working out what was the best rate for her. At first she did not tolerate bolus (quick) feeds well and for quite a while we relied on the pump., Her volume tolerance, even now at 3 years old, has always been on the low side and I still have to rely on gut (ha!) instinct, common sense and a quick assessment to avoid my carpet getting covered in regurgitated feed.

Last summer we swapped the PEG for an AMT mini button which I now love. Wriggles calls the extension her "tail" and most of the time is pretty nonplussed about being tube fed. The truth is, she probably can't recall any other way. She never ate enough solids, if any at all, for them to provide even a contribution to calories and nutrition to fill her up and her drinking was tailing off and warning signs of aspiration into her lungs were sounding like a klaxon so there was not a great deal of choice. We still have a long way to go with introducing consistent feeding and upping volume anywhere beyond "tasters" and have only just begun to reintroduce fluids. But she is healthy and the main thing is that she is getting the nutrition she needs, and also the medications she requires. Since we began tube feeding we have ditched the complete high calorie formula she was fed round the clock and switched to a blenderized diet. Given her lack of eating, I wasn't 100% about how her body would handle solids but after a very gradual changeover she has been fine with just about everything as long as the volume isn't too much and it isn't overly fatty. She how has 3-4 boluses of pureed food down the button at conventional meal times and fluid boluses in between; anything orally is a bonus and she will eat crumbs of cheese scones, toast, Pringles (my nemesis, I detest them now), the arms and legs of gingerbread men and nibbles of sausages. I still can't tell you exactly why she didn't before and still doesn't like eating or why we still get into cycles of all out refusal. The tube is as much here to stay as it was when it was first placed, but that isn't to say it will be forever.

This week is Feeding Tube Awareness Week, with the brilliant theme of "nothing will hold us back". Getting a tube can initially throw a proverbial spanner in the works, but once you find your groove it seeps into your routine until it is another way of feeding. We might still be too new to add the "just another way of feeding"; it is after all a very emotive and physically obvious difference. But feeding tubes are necessary for a huge variety of reasons. They may not look like it, but for many children and adults are not just life saving or nutrition related devices, but are compassionate. Getting a feeding tube has allowed my Wriggles to become to self-assured, mischievous and energetic little person she is today and that is why I am passionate about this week.

Anxiety Returns

When Wriggles was very sick (one of the many times) at around 21 months old and ended up going home tube feeding, I remember our consultant sitting down with us at some ungodly hour in the morning as he was working through the night after his shift had ended trying to keep us out of PICU, which he succeeded in by the skin of his teeth. 
"This will rock your confidence as a parent," he told me softly. 
He was full of empathy-as a senior specialist consultant he had seen our situation too many times before, held the hands of so many parents and was so well practised in delivering news, good, bad and wait-and-see. He might not know what it was like to be on our side, but he did see us parents pale and aghast in our pyjamas, he saw us hysterical, terrified and for us lucky ones he would see us dancing on air when discharge finally rolled around, albeit sometimes going home with more equipment than we had gone in with. He knew stories like ours only too well and whilst he was the first to admit magic answers are few and far between he did have better knowledge and instincts than some.

He was right, in a way. It did shake me, but the truth was that life goes on. I had to get to grips with tube feeding very quickly which was rather consuming and for the next few months that took over our lives. Wriggles recovered from her umpteenth respiratory infection and went back to cruising the furniture as if none of it had happened. We came and went to Outpatients and had a few more admissions after she began struggling with an unspecified virus but nothing like on that occasion or the times before.

What neither I or our consultant could have foreseen was that she would get that ill again, and not just that ill, but far worse and wind back up in PICU aged 3 years old. November 2013 passed by in a daze and when we got home, I was too full of adrenaline to even begin to process it and too consumed with caring for a little girl still very weak from being so poorly. We got caught up in the whirlwind of Christmas and I began to think maybe I was just that good at getting on with life that I had moved on from the admission and that my rational brain knew that now we were out of hospital and back to full strength, that was all that mattered.

Of course, that is what matters. But life, and the human brain, is not that simple. Bad memories do not just neatly file themselves away and sit there locked in a box unless told otherwise. At the end of January, Wriggles started to cough. She started to become ill. I nervously clocked up the increasing frequency we were using inhalers and took her temperature hourly, loading as much Calpol as I could down her tube. As I rocked her daily whilst she tried to catch her breath between coughing, I was consumed with an onslaught of memories of the amount of times we had been in this position before. Uncalled for memories flashed in front of my eyes, ambulances, resus, nebulisers, feeling sick with fear, pacing hospital corridors, midnight dashes to a&e, medical jargon, drugs, more drugs, mounting terror that my baby was ill... No matter how many times I told myself that she wasn't a baby anymore, that this was just a cold, that things change, things are different, I just couldn't shake off that feeling of fear that something was wrong; that we had seen this too many times before. The moments I wasn't looking after her or feeling dreadful myself were spent trying to battle through what felt like an indefinite fog of flashbacks to fraught days and nights. The past, it appears, is never really too far away.

And it is now that I think of his words, first said to me over eighteen months ago. So much has happened, good and bad, but it feels like they are coming home to roost. The anxiety I once felt and thought I had conquered is looming in the corner of the room like a grotesque spectre. I question things I do; things I don't do. When I think of the present and future I feel overwhelmed at the uncertainty then instantly selfish when others cope with far more. Where as a few weeks ago, I accepted them blithely saying that our recent PICU was just "bad luck, one of those things", at this moment I can't trust that. The rational part of my brain is trying to be pragmatic and reasonable but feels like it is getting shouted down. Even as the cold is subsiding, the comfort I get when I hold Wriggles close is tarred by the faint wheeze my ears catch. 

Lets just get back to normal, rational brain says, it will be easier then.
And a voice echoes, but who knows what normal ever is?