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!

First Day

And so it starts. 

My new routine:

Lansoprozole MUPS 7.5mg dissolved in water, once a day

Domperidone 2.3ml three times a day

Co-Amoxiclav antibiotics 5ml twice a day until PEG operation (possibly to be replaced with a long term antibiotic post-operation)

Fluoxetine inhaler, one puff twice a day

4 x 100ml bolus feeds of Paediasure (1 calorie per ml) with a 10ml flush of sterile or cooled boiled water (10am, 1pm, 4pm, 7pm) each taking half an hour. Before each feed, the tube needs aspirating and the pH checking.

10 hour continous feed at night of Paediasure Plus (1.5ml calorie per ml) of 400ml at 40ml per hour. Flush in the morning (around 6am).

In one sense it is not too different from our old routine:

Baby gets up.

Baby gets me up.

Baby has bottle. Baby gets bored of bottle. Baby slowly has bottle over morning including lansoprozole sneaked in feed.

Baby has lunch.....etc

Baby goes to bed (fingers crossed).

Except it feels very different. For a start, there is a little machine which beeps at me. There is an awful lot of handwashing. Although the level of washing and sterilising is not too different, it feels different. Things are more regimented. There is a slightly draining feeling that I am a doing little too much jumping around fiddling with medical equipment rather than "mummying".

I know it is the first day.

I know it is bound to be tiring after a fortnight of emotional stress.

I know all this.

I know it is worth it.

I know it could be far far more complicated or stressful.

But I miss the simplicity of the old times. 

I am so grateful for the input of talented consultants who give a fig about making my daughter better not just not their profession or for her well being but mine also. I am so glad that at last someone has put their foot down and said that is enough frequenting of a&e. This is getting too silly and draining the quality of life for you both and should kickstart development sluggishness or address things better in terms of firming things up for the future.

It's just, without wanting to sound too much of a moany-guts, that I am sad it has to be this way. I am sad for my baby that she has lost so much babyish innocence and experienced so much so soon. I am sad for me that my first precious child differs so much from the promised ideal.

BY WRIGGLES

 Hello,

I am back home with my mama and toy hedeghogs after our holiday in hospital. It was really scary but then was really good as everyone made a fuss of me and kept letting me thieve their keyrings and phones. I still have a wiggly worm up my nose which I really don't like at all and is scary when people have to put it back in. I don't like it so I hide in my mum.

Thank you Skittle for your excellent taste in books and Smidge for your superb teapot-I cannot wait to play tea parties! And to everyone for praying for me and thinking of me and wishing me well when I was really poorly and on another planet entirely. Thank you so much (my mama made me write that last bit)

Much love,

Wriggles xxxxxxxxxxxxxxxxxxxxxx

Understanding

Recently, I have been thinking a lot about speech and understanding. 

Wriggles is not yet speaking, but quite a few of her contemporaries have begun to say first words (but they are not nearly as pretty or funny or clever...) and learn counting, names and commands. I am not really worried about the absence of speech, and neither is the speech and language therapist which is a good sign to me. The pair of us get by with a very one-sided conversation and generally by intuition, guess work and knowing her inside out, I can just about grasp what it is Wriggles is going on about as she sits there going "mmmmmaaaammmmmnnaaanannanamamammamggh" or words to such effect.

Signing has really made a difference recently. We started going to baby signing (derived from British Sign Language but with similarities to Makaton in that there is a lot of emphasis on speech accompanying the sign as it is to aide spoken language, not substitute) at 1 year old (9 months corrected) and finally at 18 months old, Wriggles signed "all gone" in context.

That was it for quite a while.

Around her, the other younger babies steamed ahead ticking off 5 signs, 10 signs, extra signs....

"All gone!"

And then suddenly out of nowhere we have had a burst of signs. It helps if you are really really observant and have a good knowledge of what the signs are to look out for. For instance, Wriggles' sign for spider, train and fish are all remarkably similar. Star is only differentiated from milk by how many hands are being used. Teddy, hug and baby are all given the same sign by Wriggles that is actually the 'real' BSL for change. I know exactly what she is going on about, but many may be mystified! She does know and can do the signs for most animals, but if she is tired then everything is divided into two categories: cat (small ears) or rabbit (big ears) which she often does one handed. All gone covers a range of phrases from all gone to go away, had enough, finished, shut, closed, don't want it, scared, upset, hiding and don't you dare come near me with that stethoscope. She knows the actions and orders to quite a few songs and will wiggle on command ("dance") as well as blow kisses, mimes tickling, claps herself and mime "Oh no!" and "yummy." She often babbles "mamammmamamamama" which is applied to everything in sight and everything not in sight, but has begun to touch the side of her head when I come into view which I am hoping is her approximation for "mummy" via signing, as the taught sign from class is three fingers in manner of a scout salute. It makes mealtimes a little more straightforward as rather than guessing solids/milk, Wriggles can now sign milk at me when wants it and when she is not up for it, which formerly had a higher incidence of gagging before she could sign.

She knows when she has been cheeky or clever and though doesn't always show much reaction to words, has a very strong visual memory as when we see something familiar, her little hands start clenching in excitement, or she hides behind my armpit depending on what it is. We read books an awful lot, and she knows the order of favourite books and has pictures which stick in the memory she will return to.


So there is clearly a decent enough level of understanding.

There are three things I am mulling over trying to enforce an understanding of or whether to leave it. She is now 19 months corrected and 22 months actual. The last I heard of it, she has been classified as 'globally delayed' although I am convinced her cognitive, social and problem solving skills are pretty much on track for corrected age at least and her fine motor skills are catching up quick. I'm not too concerned about speech as there is understanding present and some communication via signing, which leaves gross motor as the "problem" area. Sometimes, she seems quite young and sometimes far older and wiser. Anyway, what I have been wondering about is:


1. Her Story


How soon do you start explaining prematurity? Obviously in incredibly simplistic terms; 'small/poorly/early' seems a good beginning. She has seen pictures of herself since virtually birth but has never been interested enough to sit still for 2 seconds to see who the pictures are of. She is more interested though in the "term" pictures than neonatal ones. It is down to prematurity as to why to are in hospital such a lot and regularly see doctors and nurses. This is Wriggles' "normal", as she knows nothing different and does not yet have a sense of being any different to those she sees regularly. Not-yet-2 seems very young to grasp a history how you got here, but we know other little people either with or those expecting siblings, that grasp a vague concept of babies and others that know about caring for baby dolls and such similar emotive role playing.


2. The Entourage


Which leads us to the medical professionals. The person we see most is our physio lovely Gemma. Wriggles definitely recognises her and although she won't let her touch her feet, she will happily go to her. I often wonder, does she think she is a funny friend or does she know she is different? I have tried to vaguely explain Gemma comes to do exercises to help her legs so she can feel better but don't get a flicker of recognition or interest. Partly, breaking down the collection of professionals relies on recognising body parts, ailments and time frames. We are getting there on body parts (at least for nose, tummy and the other day, knees) but it has taken a long time for her to be aware of many limbs far less have names or uses for them. The only reason I have been wondering recently about being clearer about separating these people is that she is becoming increasingly aware by the name and quite clear about reactions to places, and I think sometimes it must be very bewildering to just be taken somewhere which either may be nice or may be upsetting or may be tiring. It might be for a short time (e.g. doctors) or might be overnight or longer (e.g. hospital!) but equally the same place (hospital) might be for a check-up or a social visit (e.g. NICU support group and an opportunity to butter up the nurses who remember her as a very fragile scrap). We've read books like Miffy Goes to Hospital and at least pointed at pictures and named key things, but judging by the lack of reaction, linking a connection between story and real life is too advanced. Although some books do elicit connections being made, relating to perhaps routine.


3. Feeding Hell


This is the biggie and the one that is closest to my heart, divides my brain most and is most pressing.
Given our recent ultimatum,time is of the essence and feeding either fluids or solids is really now very important to produce results and also maintain enjoyment and acceptance.
Do I carry on as normal, and then if there are negative consequences (feeding tube implemented or some hospital stays specifically for observing feeding patterns) have to then quickly find a way of describing it in ways a very little person can grasp?
Or do I try to introduce the subject without sounding too terrifying or like a threat? I don't want to scare the poor mite, but it is very unfortunate that at present she is being incredibly fussy about even the few things she would accept orally at a time when I really need her to be more open in order for us to stay off the dietician's radar as much as possible.
"Eat some yoghurt or someone'll put a tube down your nose" does not exactly conjure up a jolly mealtime to look forward to.


Visually presented, she does have a concept of what an NG tube is. I know this because in April when she was poorly and ended up on a drip in the end, when they tried to insert an NG tube, merry hell broke loose before they got within two feet of her with it and she was clearly absolutely terrified. 
I really really really REALLY do not want that to be a regular occurrence.
Obviously I am hoping it won't be.
But I do have to face up that either NG or PEG feeding may be a reality in the short term. She is a not a little baby anymore. She is aware of surroundings, has some sense of things to happen and has very clear triggers, visual stimulus and a surprisingly clear memory. 
When she was poorly very recently, I did try to reason with her (I say reason; I was literally sobbing in desperation trying to persuade her to at least part her lips to take just a 5ml syringe of water, hydration fluids, milk, juice, Calpol...anything) when she was becoming very dehydrated through refusal to take anything orally and the nurse was warning us that an NG tube was very much on the horizon as soon as the shifts changed over if progress had not been made. Maybe she took pity on me, maybe she just changed her mind, maybe she understood-but at 10pm that night, she finally took some fluids for the first time in 24 hours.
Now that was an extreme situation. We were both displaced, tense, she was very ill and I was very upset. Crying at teatime is not an everyday occurrence and it is not going to become one. I don't want to sound like I am regularly making threats, but should I refer to the prospect of tube feeding in the future? Or should I just leave things relaxed and then think on my feet if it comes to that?



Who would be a parent, eh?!

The New Teatimes

After last week's ultimatum on the eating things front, I have been doing a lot of thinking (and encouraging of biscuits). I do "get" the problem and seriousness of the issue at stake, but I am loathe to chuck a lifetime of being taught about good eating habits out the window. Am I being naive? Is this "for the sake of a few pounds and ounces" attitude in fact not facing up to the severity I am presented with, or am I making a big deal about what should be a no-brainer: doing the best for my daughter. The trouble is, in this arena I don't know what IS best for her. My gut instinct, my protective instinct says not a feeding tube. Continual changing of an NG tube would only be enforcing trauma I'd imagine, especially on a child with a proven track record of being very sensitive to procedures and it impacting on her feeding and sensory acceptance. Any child would quarrel about having something put down their nose, but on one that has already endured more than she should, it just seems cruel. Which leaves us with PEG feeding, or a gastronomy button. I am nervous about Wriggles having an operation; going under general anaesthetic on a ventilator. I know she is older now, hardier, sturdier, more robust, but it still fills me with fear. She is my baby, after all. So that leaves lots and lots of eating. We will soon be switching more high calorie nutritionally complete milk to super-high calorie nutritionally complete milk which we are all hopeful will make a difference. Although they have improved indescribably, Wriggles' eating habits are still so pitiful to attribute to her weight gain, that we have been told we will have to rely mainly on the milk for increasing her weight. Obviously whatever (fortified!) solids I can get into her will be a bonus and only enforce a positive image of feeding for her, but the message was that the focus should be on the milk and calories, calories, calories.

I am struggling now.

It seems so counter-intuitive. But is that because I am subconciously comparing Wriggles to other babies who have had the good luck to tread a more straight forward path? Am I not accepting that we need a change of tack to make some headway to get her onto that path? Am I somewhere just digging in my heels in the desire to have some grasp of normal that I know and understand, when we have deviated somewhere else? I no longer know at all.

The problem is not Wriggles being small and light. She has never been huge, and both sides of her family are on the short and slight (well, a bit wobbly round the edges once cake is discovered) side, so that doesn't concern anyone. The problem is that she is seeming to struggle maintaining weight whilst becoming mobile and exploring food. Both these things are to be expected, but the unexpected twist has been a continual slide from centile to centile. One, is a shame. Two is more frequent weigh ins. Three is really taking the biscuit (I wish!). She is pretty much the same weight she was six months ago, despite taking in more calories overall. If mealtimes (any food and milk combined) took any longer, they would quite literally run into each other. If I limit them, she does not get nearly enough to keep her going and snacks run into snacks running into meals...you get the picture! She has always struggled with volumes, which is were it makes sort-of-sense to think about an overnight tube top-up feed.

What would you do? It seems so funny just when we are beginning to have a breakthrough in curiosity and acceptance and dare I say, enjoyment, of food, to sideline it for the high calorie drink. Concentrating on milk, as opposed to exploring solids in a growing child seems just so topsy turvy. The food aspect is limited as Wriggles still struggles with so many textures and although is gaining in curiosity, will not entertain a vast number of foods. Cheese, marscapone, cream, avocado, nut butters, oil...so much I still have had no success with. Not that I am giving up that easily! So far, the best success we have had is buttered hot cross bun and a sweet potato wedge (just the one. She takes VERY small mouthfuls). I have a list of ideas longer than my arm to try, it is just finding one, or maybe more, that sticks. Wriggles, would eat crispbread or Quavers until the cows came home, but unfortunately they are mainly air!  
Would having a tube allow us more room to manoeuvre with food? Knowing that by hook or by crook, the precious calories will go in, will this free up time to play and explore food in the daytime? To take the pressure off? Or will this confuse the issue by meddling with natural hunger and feeding patterns? My other hesitation is forgetting about healthy. I don't want to "fix" this with say, cake, only to have the issue drawn out years down the line trying to then get a 5 year old to look a pea in the....erm, maybe not exactly the face. My current compromise is a full fat yoghurt or custard accompanied by fruit or a fruit/vegetable puree! But again, am I just not getting it? Are the medics being too cautious or am I not cautious enough? She is still (just) on the growth chart. When is the cut off point when enough is enough? Are we really staring it in the face? How can we be when she is still so full of beans?!

Any advice would be gratefully received. It seems so complex to me and yet to the doctors is so very black and white. I am hoping against hope that these mad ramblings turn out to be just that; ramblings of someone with an overactive brain. There is every chance that we might just stay on that curved line on the graph and buy us some extra time. Better still, Wriggles might prove them them wrong again. Maybe, just maybe, Wriggles will develop a goat-mentality overnight...

Last Chance Saloon

Today, we had our review with our dietician, Lovely Ruth. It had been a few months since we saw her and although I had the familiar butterflies, I was largely very confident with the progress Wriggles has been making with trying out new foods, textures both orally and otherwise and her acceptance with mealtimes generally. She has made huge strides with her oral motor skills this year, learning how to chew and push food around her mouth. I hoped for at the least a gold star!

In the weighing room though, I began to catch a whiff of reality as they furtively plotted her height and weight. I knew from regular weigh-ins at baby clinic and the fact her ribs have suddenly got visible that although she isn't consistently dropping weight, that her weight is very unstable. I tentatively asked how the dreaded graph was looking. She has dropped another centile, in weight and also in height for the first time.

Although never exactly beefy, I used to have a vaguely chubby baby. When we started out weaning, Wriggles was quite healthy looking and cheerfully sitting around the 50th centile. Even after her intensive care foray, she still stuck not too far from there. Even after the dreadful summer of hospital admissions, she didn't stray stupidly from her line, and sat around the 25th centile mark with her height nicely matching up. No one was really overly bothered about the chart at this point. She wasn't doing anything overly silly, although no one was quite listening to me about the lack of eating anything. Ironically, at the height of her reflux when she was vomiting large amounts nearly every feed, she was around her heaviest.

And then, bit by bit, it all began to fall away and over the last few weeks I began to uncomfortably notice my child is resembling a xylophone. I know part of it is that she is growing up and loosing the baby features and also is a lot more mobile and full of beans. But to keep being full of beans and keep her development fuelled, she really needs energy. And energy, as my biology lessens taught me, comes from food. She is already at a disadvantage with slightly dodgy lungs thanks to prematurity, so she needs even more energy than your average mad toddler. Ideally when your baby or child is learning to eat, it helps to have some weight to play with as they might yo-yo whilst dropping milk feeds to accommodate food and tasting through things finding out what they may or may not like. Unfortunately, this is where we hit our snag. Sitting at the bottom of the blasted graph, we now has no weight to play with and an all-too-well documentation of having "no reserves." And thanks to acquiring a dietician and a very interested paediatrician, now the graph does matter and we are very much on the radar of the team again. We now have to make 'plans' and have 'options'. And I'm not just talking choosing lunchbox items.

Tears

6:18pm

It's teatime and there are tears. 

This isn't unusual. Wriggles' aversion to feeding has often distressed her to the point of tears in the past. I have long learnt that if this reaction is even hinted at, to chalk it up to experience and leave it for another go later. Somethings are just not worth it if that are that bad.

What is unusual is that today the tears are from me: I am crying.

But not from frustration.

Wriggles has just put a vegetable finger to her mouth.

No wait, she has put it in her mouth.

And...

I hold my breath, almost too hesitant to get my hopes up.

...bitten, chewed and swallowed! 

Tentatively, over about an half an hour, she returned again and again to nibble away at the vegetable finger. What was even more incredible than this* was the fact that when she couldn't cope with a texture, like a whole piece of sweetcorn, rather than gag and vomit like she has always done, she moved it around her mouth until she could spit it out. I was amazed at this sudden leap in process than I have been waiting for for what is now over a year. To actually willingly handle food, put it to her face, try some, repeatedly try it and use her oral motor skills to break it down... it is so simple and what we take for granted, but it is such PROGRESS and even thinking about it now brings a lump of pride to my throat. 

The past year has been a rollercoaster and has taught me a lot in patience and acceptance and I must admit, there were times like in recurrent weeks whereby she would not even go near food, where I fear it would never happen and we would succumb to tube feeding. I have a small section of baby and children books on my bookshelf that have taunted me with their weaning guides and food ideas. Before Wriggles came home and long before weaning, I devoured them soaking up ideas and formulating my own plans. I talked to the neonatal nurses about weaning premature babies and read the Bliss literature. I couldn't wait and had a box of food items and accessories before she even reached term. I did not forsee  a fraught period whereby she wouldn't even entertain being near food or touch cutlery; I didn't know the work that would be to break down her fear or distate for the sensory textures. Slowly, we have introduced milestone after milestone and now, a taste and management of "real food" is the icing on a cake. I'm not expecting miracles; it might not even be the beginning of the end of this time, but I am so pleased for her.

 I am so proud of my clever baby girl.

"What's all the fuss?"

*if you have never read anything here before, Wriggles has struggled with oral aversion and building up trust never mind a variety has been a very long slow process. In over a year, we are now at an albeit limited, "stage two" of the weaning process!

Hooray

Hooray, a success!

As you may or may not be able to deduce from this here snapshot of my resident pest, she has eaten some food. This may not seem a particularly news-worthy event for a 16 month old.
It is.
I won't go as far to proclaim it is a miracle, but it is not far off.
For reasons knows best to Wriggles, she does not eat.

At least, apart from a handful of coffee shop based exceptions, nothing solid or even petit filous based has passed her lips since mid-December. 

Not that she was really eating before then either.

At 6 months she weaned as any normal baby (I think. I don't have any other baby experience but she seemed to do what most other baffled infants did ie. glower at spoon, spew out baby mush, repeat process for a few days and then wolf down an entire pureed banana) and then The Trouble started. Namely a trip up to Intensive Care with pneumonia, and when we returned to the outside world things were a bit, well, buggered. Initially she ate like a horse for all of errr 3 days. Then overnight it was as if a switch had been flicked: nada.

She would get distressed at the mere sight of cutlery, refused to even look at food, point blank ignored me when I ate, gag like mad even on bottles and would not put anything at all near her mouth apart from her trusted possessions: a bottle, Christmas Hedgehog's nose, dummy, her favourite rattle and my fingers.

The months that followed were trying. For a start we were backwards and forwards to the wards as respiratory infection followed respiratory infection. Inbetween, I tried to re-establish weaning and wax lyrical about the Joys of Food. Not hard; I love eating. I quite like playing with food. I tried every trick in the book and invented some of my own. Every time I thought I'd cracked it (Yes, she WILL lick the spoon at least if Spot the Dog 'feeds' her while I bellow "The Grand Old Duke of York"!) it was a false alarm and like in snakes and ladders we would be back on square one at the bottle of the pile. Eventually she began to hold a spoon if it was empty and play with a bowl. Then she expanded gradually the things she would put near her face and in her mouth. She would sometimes touch food and warily paint both of us in puree and yoghurt. She began to slowly take minuscule amounts of puree and fromage frais and hold small pieces of finger food like biscuits or rice cakes.

Around 14 months we were on a high at two small portions of a 'stage one' fruit puree or yogurt daily and occasional practise-chewing of crackers and breadsticks. I proudly reported that to the dietician in December and of course the next day she stopped eating again and has not resumed yet until today! Please let this not be another fad...

It is hard to suss out. The combined medical opinion is that it is a muddled up combination of "oral trauma" from repeated nasogasteric tube insertions, intubation (ventilation), multiple breathing support occasions which are all centered around the face be it via mask, cannula or tube, amounting to a juvenile 'phobia' or aversion; combined with terrible reflux which took a very long time to be medicated adequately which has likely damaged her oesophagus even if not severely or long-term; an over sensitive gag reflex and immature stomach valve, meaning that sometimes even brushing her lips result in the entire stomach contents of the day landing on your carpet. Well, my carpet; oral sensory issues; possible other sensory dislikes (won't entertain even holding moist-like textures like steamed carrot, fruit, jelly) and as she has become older, general sheer-bloody-mindedness of approaching toddlerhood. Or as the paed says when he is stuck "Could be a prem thing." My instinct is that what was once a genuine real issue with feeding has now morphed into familial behaviour; even if it no longer hurts or distresses her to taste, she imagines it will so won't even try a large amount of the time. Argh!

Except for lunchtime today!!!