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.

Blended Diet

Wriggles gets near enough 100% of her nutrition and calories from formula; always has done. With a very slight window of exception, most of her life this has been formula carefully considered by paediatricians and medical professionals and one picked to carefully meet specific needs. We have been through a fair few in our time, found some we liked (as much as you can like commercially produced milk derived 'food') and some we really didn't. Picking a good formula was important with the tube. In some ways, it opened things up as dietitians will readily admit some taste vile so there is little help of children taking them and having a tube eliminates taste as an issue. In some ways though it highlights how important getting it right it. There is so little room for error with children, especially those in fragile health. We have been having a year-long dalliance with high calorie formula to meet Wriggles' weight needs and after having worked through much of the Paediasure range, seem to have it right. 

Recently though, I have been reading about blended diet which is much as it says on the tin. Real food, blended to go down the tube. Mostly, I am pretty at peace with Wriggles having formula albeit through a tube sticking out of her tummy-needs must and all that. She grows on formula. She develops on formula. She digests formula. A large part of me is apprehensive to rock the boat. Why change what works? I haven't yet spoken with a dietitian about it, but I suspect they will say the same. Formula comes with statistics. Formula has studies about it. Medical reports, numbers, averages, facts. Formula is easily measured, it is tailored down to the last 0.1ml. It has a neat little box on the label telling you all the information. I just have two little niggles that I want to at least experiment with or really look into:

1. Although medication seems to largely control Wriggles' reflux, it is far from going away and lying dormant for long, and when we do have flare ups they wreak absolute havoc. There are no formal studies about blended diet and reflux, but huge numbers of parent (and increasingly health professional) anecdotes are testimony to the fact that switching to a blended diet instead of formula can really improve on, if not eliminate the worst of reflux. This won't be true for all children and all diagnoses, but it is something I am very curious about. When we are in a good period, things are ok. When we are in a bad period, there is all manner of projectile vomiting, crying, coughing, gagging and there are still fears about aspirating on reflux. A very good reason for wanting it controlled a little more than it is now. I'd say it is about 70% controlled now. Not bad at all, but 30% is still too much for me especially when it involves dragging the respiratory system into review again and frankly, why would any child be motivated to eat when they are being sick?

2. That eating thing. Sometimes I feel it can be all I go on about, but really it is SUCH a big thing. So far, Wriggles shows no motivation for scoffing. None. What if, even partially, feeding her actual food down the tube stimulated something somewhere into encouraging her body to at least try? I'm not talking whole meals, just curiosity, tastes, most importantly a want to eat for herself. Not because I'm trying to bribe her by letting her holding my keys in exchange for licking a spoon but a desire to satiate the tastes, the smells, the textures. A number of parents have reported very favourable turn around in their children's attitudes to food since trying the blended diet. I know at one point, we will have to look at tube weaning. I have spent hours reading up on this to the wee small hours and am so torn by procedures and philosophies on it. Little of it sits entirely comfortably with me, yet. So what if something helped her there by her own accord first? Sometimes I think, well we've nothing to loose. If it doesn't work, it doesn't work. But you don't know without trying.

Really, blended diet should seem the most natural thing in the world. Humans are made to eat food by whatever means, yes? But the opposition towards blended diet is surprising. Few professionals recommend it, fewer support it. Our community nurse recently remarked another patient she sees has tried it; she did say that it was brilliant for reflux but that the parents did it out on a limb without positive backing. Pages could be written for or against. Feeding is such an emotive issue, from a personal, parental or professional point of view. Nutrition is the essentially the building blocks of life for a healthy future, simply put it must be gotten right. But it is also so easy to medicalise and forget the pleasure it brings to the giver and receiver. 

So I have been experimenting. Just a bit. Nothing radical.

I feel so naughty.

I keep expecting a dietitian or doctor to pop up screaming "PUT THAT SYRINGE DOOOOOWN!".

I knew I had become a bit institutionalised by our hospital history but was slightly taken aback.

I have my defence ready. "It's just a bit of porridge, guv." No. "For chrissakes it's just food." "She's my child!!!" "If she ate this with her mouth, you and I would be dancing a jig on the ceiling!" I think I might have over-thought this.

So far, I have only experimented with swapping one daytime bolus feed. I have kept the same calories and as near to the same volume. I haven't tried anything I wouldn't give her orally or any complex flavours. I just want to see how she responds to digesting anything but milk and the odd Quaver. We've only been doing it a week and I'm so far sitting on the fence as to if we carry this on or if we might be some of the lucky ones to reap results. But one thing, I can't begin to tell you the joy, the excitement of mixing porridge, of smelling real fruit, of looking at flavour, colours and smells. It excites me, putting it down the tube. It really makes me happy that it is real. 

It makes me hope that one day I will be making these concoctions not just for a tube and syringe. Maybe I need to get out more, maybe I need to stop looking so far ahead, maybe I need to stop caring about food...but for now, I'm just enjoying feeding my daughter a little more.

G-tube 6 weeks on

This *points up* makes me very happy.

Now, just ignore a) the mess b) the fact my child is only half dressed at gone noon and c) the fact she is covered in paint (one of those days when you have to pick your battles. The bath can wash it off later).

That is a child who has suffered terrible oral aversion for eighteen months and as a result is now tube fed. Now obviously, she did not eat the whole hunk of bread. In fact, I think the area consumed amounted to about the size of my little finger nail (and I have tiny hands) but the point is she is going for it.

We have had the g-tube for about six weeks now. I can't believe it is only that long; it feels as if we have had it far longer. I think by the time we had it, Wriggles so badly needed it, that it fitted in perfectly because there was no other option such was the struggle of feeding, gagging and vomiting. The first week was a shock to the system. I knew how much we needed it , knew how much better it would be than the NG we had been making for with for a few weeks, but I wasn't ready for how taken aback I was by the sight of it. Something artificial and permanent sticking out of your child's unblemished perfect skin is a shock. Even if you know how necessary it is, it still got me. Let alone her. I really struggled with how to communicate to a small child how she could be put to sleep, then back up in pain with a lump of plastic sticking out of her stomach and at that point, an ostomy bag. The bag went, feeds were cautiously resumed and we got back home. After a few days of feeling sorry for ourselves, we picked back up. That is to say, Wriggles picked up; she clearly couldn't care less and her attitude gave me a jolly good kicking. If a not-quite-two-year-old could cope with this, then her twenty-something mother was bloody well going to join in. Of course it isn't that simple-as a mother and an adult I am effectively "feeling for two" the emotions, the presumptions, the hopes and fears and everything that is attached to coming to terms with the fact that normality has flown out the window.

We have had some teething troubles with the tube; two infections needing antibiotics and dressings, and hypergranulation tissue making an unwanted appearance. Fingers crossed, it has now all settled down and things are pretty good. I have lost any notion of caring and have primed feeding sets, vented, flushed and hooked everything up on public transport, in lifts, in H&M, in the park, coffee shops, baby groups and in an art gallery. We have got some funny looks and stares out of curiousity but have not yet had to deal with any questions which is a relief.

When the tube was placed, we were still very much in a not-eating cycle. Wriggles is prone to being a little more receptive and trying some limited foods for a few weeks, then frequently going for months with complete refusal to take anything by mouth, touch food or acknowledge anyone eating. Even if she is not all-out refusing, she will take miniscule amounts of familiar food such as a handful of crisps a day. Hardly sustaining! Just over a week ago, we started a period of trying food again. I had forgotten how intense the heady bliss is when your non-eating child willingly takes something. When she reached out for something I nearly fell off my chair and had to hold back tears of relief. Since then, I have tried to capitalise on her curiosity especially in the finger food department and in the last week we had tried:

• Mummy's chocolate brownie
• cake crumbs
• bread (including toast)
• rice cakes, particularly bright yellow "cheese" flavoured ones and salt & vinegar
• pizza
• gingerbread
• hand cooked crisps (not by me, by M&S). Worcester sauce got the thumbs up, parsnip did not
• scones

In the last few days, she has also decided to let me spoon feed her limited things (yoghurt, mango, raspberry, banana or blueberry puree) too which is brilliant. Whilst I am over the moon about independant eating with finger foods and expanding that area, I don't want to take away from her ace progress but I will stress when I say "eat" it is far more from a sensory and curiosity point of view than a nutritional or otherwise perspective. The amounts that are chewed, and not always swallowed, are very small and are far more about practising her oral skills. Friends who have seen her put food to mouth simply do not understand the problem. The "problem" is that she might only put one thing to mouth per week if that, and there is no guarantee she will actually masticate, swallow and digest it. Even if she does, we are a long way from her actually eating orally any calories, as the time it takes normally expends more calories than it creates. So if I was to be super-keen on emphasising the calorie side of things (which for the record, I am not. It is very early days, and thanks to the tube we have a nutritionally complete formula which provides all her calorific needs to maintain and increase weight to be able to facilitate hopefully increasing food intake eventually) then the only way to do so would be spoon-feeding purees which she can take a reasonable volume of, for someone not used to eating. On a good day, she can take about 60g (half a baby pouch or jar or a small fromage frais pot) comfortably before she looses interest or gets upset. On a mind-blowingly good day, she can take just under 100g but these are rare and to be celebrated in the extreme! Those sort of amounts and the likelihood of matching those calories are at this point only the stuff of dreams when it comes to finger food or self feeding. But this is why I now love the tube: the pressure is off and it doesn't matter. We have time. We can do it at her pace, and if that takes an age it is ok.

For the time being, we also seem to have her reflux under control which presumably will only help her willingness to try food. She also seems more comfortable in herself and my washing machine is enjoying a longed for break from twice-daily service. I have now been doing this long enough to realise that this isn't a "fix". Refusal and the return of more aggressive reflux may be around the corner. It's sad but true, and I have to acknowledge this. This isn't a defeatist or pessimistic viewpoint although it might seem this way. After the road we have been on with feeding, reflux and tubes to date, I know we are far from the end or even the middle. And it pays to be realistic. It pays to set new goals or everyone becomes upset and frustrated. So if we get through more than one fromage frais in a week and I get my dinner played about with by someone that isn't me, then we're winning. It may not seem much, but to us it's huge. It has taken me a long time to accept this and adapt to realising my baby girl is not as straightforward as I might like but not any the worse for it!

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

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!

The Letter

Plop.

A thick white envelope plopped through my letterbox this lunchtime. I rightly suspected it was from the hospital and would have the contents of Wriggles' upcoming operation in it. 

Dear Parents or Guardians,

Please bring Wriggles to be admitted to Ward 1a, new Victoria Wing as an in-patient on:

DAY: Tuesday

DATE: 21st August 2012

TIME: 12:00PM

**WRIGGLES WILL BE ADMITTED FOR AN ANAESTHETIC/RESPIRATORY REVIEW AND WILL HAVE PEG INSERTION AND BRONCHOSCOPY ON THE MORNING OF WEDNESDAY 22.8.12. SHE WILL NEED TO STAY IN HOSPITAL FOR A FEW DAYS FOLLOWING THE PROCEDURE**

Please make sure your child has had a bath the evening before and that finger and toe nails are short and clean. Please arrange transport home BEFORE admission. It is not suitable to take public transport. 

Yours sincerely,

Paediatric Gastroenterology

Accompanying was a thick booklet describing about anaesthetics. Most of it I knew anyway from having gone through the finer points with consultants and nurses. It sent a chill through me though.

THIS IS REAL.

This is happening.

Although I am a little daunted by the PEG and tube-feeding for the forseeable future, I am mostly at peace (or at least too exhausted to argue) about that. I have suspected we would end up with one type of tube or another due to the ongoing oral aversion and reflux, so although it was a surprise to receive one on respiratory and neurological grounds, the end is the same. So that bit is as ok as it is ever going to be with a parent. I know a tube will help massively with chest problems and also hopefully decrease vomiting and gagging and importantly give us a ton more freedom to approach feeding from a truly more relaxed angle. I am fine about the bronchoscopy and endoscopy bit, as I have felt for a while that it is high time someone paid more than 5 minutes attention to the state of her airways, lungs and oesophagus.

The bit I am a bit less fine about in the anaesthetic.

Obviously, it HAS to be done. Obviously I want Wriggles 110% comfortable and blissfully ignorant to what is being done and investigated. But it terrifies the living daylights out of me.

I am confident in the skill of all those involved and I know that general anaesthetics are very low-risk and that thousands of people a year receive them, from neonatal to the elderly, and that it is incredibly rare complications happen. I know that people every year in acute states of illness are operated on successfully and laugh in the face of anaesthetics. I am also just hyper aware that we have already been warned that the risk has increased from this recent admission, putting us in an area where in an ideal world, the surgeons would rather wait quite a while. I know provisionally a space is being reserved for us in PICU in case either something happens under anaesthetic (mostly likely a respiratory arrest) or Wriggles becomes rather too friendly with the ventilator once the anaesthetic wears off. I am so scared that we might end up in PICU again and that once more, my baby girl might be tested to her limits. I have spent nearly three weeks with her in a sedated state, and I have no wish to do so again. More to the point, I have no wish for her to be in that state as long as she lives.

Next week, is not going to be a walk in the park.

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...

Warning: Contains Sick

I am sick of all the sick.

I have scrubbed my carpets better than Cinderella ever could and I can still smell it. 

On my fingers, washed a thousand times.

On our clothes, washed again and again and aired in sweet fresh air.

In Wriggles' soft baby hair, washed as many times as she'll let me.

The sickly smell of regurgitated vanilla peptide-milk has seeped into my consciousness and is following me about.

At work or with friends I become paranoid others smell it too.

Every time in public that Wriggles' hiccups, I tense. Is another fountain coming?

Did I pack enough spare clothes?

Have I got a muslin or tea towel?

If not, why an earth not? Stupid mama.

How pissed off is this swanky art gallery going to be? (Actually didn't bat an eyelid.)

Slightly, Wriggles is too over-friendly with the rounds of viruses. Mostly, she has a very sensitive gag reflex and still at 21 months is plagued by reflux.I am pretty sure the gag reflex is strongly linked with reflux, which has besieged her since term.

"Reflux is what happens when your baby's stomach contents come back up into his food pipe (gullet or oesophagus) or even into his mouth. The long name for reflux is gastro-oesophageal reflux disease.

Babies get reflux because the muscular valve at the end of the food pipe, which acts to keep food in the tummy, hasn’t developed properly yet. This means that when your baby’s tummy is full, food and acid can come back up. This can cause him to bring up small amounts of milk (possetting) or even vomit.

During the first year of your baby's life, the muscular valve gradually gets stronger and better at keeping food down, so his chance of having reflux decreases. About half of babies will get some reflux during their first three months, but it’s only a real problem for a small percentage of these. By 10 months only about five per cent of babies have reflux," from Babycentre.

Oh dear. Once again, we sent to have fallen into the small pond of percentages making us ever so slightly different from those all-hallowed baby books. Wriggles has always had the vomiting variation of reflux. Projectile vomiting at that. She can easily aim halfway across a room. One of my strongest memories from her 'newborn' period was when she was term plus a few weeks, one friend who was visiting came in and sat on the end of my bed. She was still wearing her coat. She opened her mouth the speak and bleeeeeeeeeeeugh-Wriggles managed to get her dinner in the coat pocket. We can laugh about it now. To her credit, my friend could laugh about it then, once she had gotten over the first few seconds of being stunned. She even (sort of) continued laughing when she had to wear her coat into work the next morning.

It took a long time to get a GP or HV to take me seriously about the reflux. It even took a while to persuade the neonatal consultant we were under. In fact, it took over seven months and changing doctors surgeries to get anyone to listen, and then it clicked with the consultants. The difficulty feeding, the recurrent chest infections, the coughing... Possibly because she was vomiting large quantities several times a day, and as a result of the irritation was producing large amounts of mucous, which really wasn't helping her already impaired scarred lungs.

The first port of call for most babies trying medication to control reflux, is commonly an antacid such as Infant Gaviscon. They reduce the acidity, so even if they do not decrease to occurance of reflux, they should reduce the pain and discomfort. Infant Gaviscon helps to thicken the stomach contents making it harder to force their way up. Side effects include constipation, which Wriggles already had and was made worse. Gaviscon did not suit her at all, so off we trundled back to our New Favourite Ever GP. Infant Gaviscon does suit a lot of babies though, and for many will control the symptoms. It can be used if you are breastfeeding also, if added to a small amount of water in a bottle.

The second medications we tried were an H2 Blocker (or H2RAs) and prokinetic agents in tandem with each other. These were both weight sensitive so needed reviewing regularly, but finally began to do the trick. Week by week, although the reflux was not eliminated, it was lessened. We were able to go from about 60-70% of feeds coming back up to maybe once or twice a day. It was still far from this posseting I have read about, but my washing machine could at least draw breath!
H2 Blockers, such as ranitidine, act in a similar way to antacids. They reduce production of stomach acid so what comes up should be less and hurt less.
Prokinetic agents, such as domperidone, are used to treat nausea and vomiting in adults. It also helps the stomach contents to move more quickly into the intestines. Prokinetic agents help formula fed babies most and those on solids, and breastmilk is digested quicker anyway.

If none of these make a significant difference, there are PPIs or proton pump inhibitors which we eventually ended up trying when the oral aversion and still-ongoing vomiting was affected her weight and intake of solids (ie. none) and milk, which was unreliable. Omeprazole or lansoprazole are often prescribed and can be in a liquid form which has a very short shelf life and is hideously expensive, or more commonly MUPS-a water-dissoluble tablet. The plus side of MUPS is that the strong medicinal flavour and odour is removed: the downside is that as in many soluble medication, it is never 100% and so you can be there stirring the solution until your arms ache like billy-oh to ensure a correct dosage. It is also easier in tube-fed children to use liquid, although certainly not impossible to use the tablets.

If reflux is ongoing, it could be worth checking that it is reflux and not a Cows Milk Protein allergy, as symptoms can be similar. If you are formula feeding, you can request to try either a lactose free-formula, soya formula or hypoallergenic formula such as Neocate or Nutramigen. If your baby is on solids; try cutting out dairy products making sure to replace them with appropriate foods for a balanced meal plan. Parents should be able to request a meeting with a paediatric dietician if their HV cannot give them full information needed. There is an ever increasing market of dairy and lactose-free items; it just takes that extra five minutes of label reading in supermarkets or some ingenious recipe scouring of which the internet is a goldmine. Soya intolerance or allergy is also not uncommon in babies, so it could be worth considering this. If you are breastfeeding, try cutting things out from your diet to see if it makes a difference and keep a food diary. It will take a few weeks to work, to get all the proteins out of the body's system so if you or your doctor suspect this, you may have to be patient and give it a while. Working with our paediatrician and sanity-saving-dietician, I tried Wriggles on a dairy free diet for three months. It made a very slight difference to her stools, but not to the vomiting, chestiness, feeding ambivalence and her weight gain plateaued then wavered. With the blessing and encouragement of our dietician, Lovely Ruth, we gave this up and switched to a high calorie peptide milk with lansoprazole which we have been on for the last seven months.
And all was well. Most of the time.

The vomiting and chestiness reduced, and with a sigh of relief, we began to think we had seen the back of the big, bad Reflux. The main problem we were left with, was a very sensitive gag palate. Sometimes, all it takes is for something to touch Wriggles' lips and she can be sick. Now she is older, I do think a small amount of this is psychological behaviour, but for the most part, she goes eagerly to complete a feed or try something and it is heartbreaking then to see her enjoyment and hard work come back up all over the pair of us. Watching her retch over and over until there is nothing but bile and mucous is really unpleasant-emotionally as well as physically! My poor bairn. Teething and bugs always make it far worse, and I suspect this current resurgence we are in the middle of is fighting off a plethora of bugs that she is meeting in the temporary nursery she is at for the last week. Roll on the end of June!

Other things you can try include using a wedge or creating a slope for your child to sleep on (think several Argos catalogues and Yellow Pages), frequent winding and little and often feeds. Also buying really nice smelling soap to make bath times more relaxing to give that dreadful sick-y smell a good seeing off-the same applies for investing in pot pourri in the living room. And take a look at Living With Reflux: a fabulous charity dedicated to supporting those people through the difficult time when you appear to have morphed from mother to Mrs Tiggywinkle and is full of supportive similarly-frazzled parents with tips for understandably-frustrated babies and to just soothe your nerves as your HV shrugs it all off. Again. But keep trying with doctors if you believe it really is affecting your child; arm yourself with information and don't give up. You know your child best and know what goes on everyday. Babies need a spokesperson and you need a night's sleep!

Fright

Yesterday at work, I had one of the more enjoyable tasks I do: filming rehearsals with the dance company for the new piece which is being choreographed. The new production is a telling of favourite fairytale Rapunzel, originally a European folk tale that was collected and retold in the Brothers Grimm book in 1812. There are several variants of the story which pre-date this, including Petrosinella in 1634 and Persinette in 1698 which all have in common the story of a witch stealing or bargaining a dearly wanted child away from her parents and locking her in a tower until a prince finds her and begins to visit her by climbing into her tower from her long hair. 

As a child reading the story, the bit we all focused on was Rapunzel being in the tower and sneaking her prince in while she falls in love before being banished by the evil witch: the stuff of drama and romance. As a more mature understanding, it is quite a complex story and there are more illicit and darker undertones. In many variations of Rapunzel, she is banished because she has become pregnant herself, which is how the witch or Dame Gothel figure finds out about the nimble-footed prince. It is as much about desire, sexuality and fertility as it is about princes and princesses and good conquering evil. But before this section of the tale, is the beginning whereby Rapunzel leaves her parents, which before I had never given much of a second thought to. Of course, it is just a fairy tale and has no basis in reality, but it is powerful the notion of parents giving up their child in any form, fictitious or otherwise. As I watched, I thought and reflected as a mother on how it might be to have my only child snatched by a sorceress (as you do). A lump rose in my throat-as a parent who has been through NICU I know all too well about separation and the fear that you may never get your happy ending. The idea that I might have lost the sunshine in my life made my pulse race and my thoughts strayed to real life parents who for many assorted reasons have either been separated from or lost their children.

The studio was warm and the dance was entrancing and emotive, and I happily sat with the camcorder in the corner when my manager walked in. She came over and said in a low voice.

"Your childminder has just rang; she's concerned about Wriggles."

My childminder never rings.

She has only rung about once before in over a year she has looked after Wriggles. She has a remarkably high threshold for sick or cross babies and is full of common sense and does not take things like this lightly. She will exhaust every avenue before ringing.

My little world suddenly slowed down and came to an abrupt stop.

I ran up to the office, stubbing my toe on the way out. Pelted up the stairs and shaking, scrabbled to find the phone and her telephone number. My hands fluttered and my heart was in my mouth as it rang.
Wriggles had had one her "moments" again. No one is quite sure what causes them, but every now and then she will get horrendous and prolonged coughing fits out of nowhere and become very breathless and chesty sounding. You can audibly hear copious amounts of secretions rattling around (mostly transmitted upper respiratory although they can also be lower respiratory too, particularly in her right lung which is the most scarred) and her breathing becomes very rapid with recession. Sometimes if she makes herself sick, they pass quicker but this is by no means a given, and it is usual for them to last several hours at a time. Although they have some similarities with asthma attacks, doctors are confident that it is not asthma. To me they seem to be connected to sleeping or feeding and the doctors have said it may be a side effect of reflux and chronic lung disease that hopefully she will grow out of in time. It could also be as her airways are still very narrow as a result of prematurity that any catarrh can block them very easily.


I left as quickly as I could, losing one sock in the process (later located in handbag: no idea how). Wriggles was calming when I got to her but still very chesty and breathing fast. She had not been able to take any fluids to help because of the coughing and chestiness and as I was nearer to the doctors than hospital I decided to cross my fingers and take her there and hope it was the right decision. Luckily it was, and we got to see a doctor who has seen these episodes before with Wriggles. It was beginning to pass after about two hours by the time we saw him: typical! He was very understanding though and found an ear infection and catarrh as well as advising use of inhalers and antibiotics for the next few days. Panic over... We returned home via the supermarket with some ice cream as a treat.

Wriggles went off to bed with some persuasion and I let out a long breath. Compared to some of Wriggles' escapades it was so minor. But there is nothing like reawakening fear to put you on high alert and dredge up memories and anxiety. Having seen some pretty horrible sights of Wriggles being on the edge that are burnt into my memory, every tiny and slightest threat brings them back to the forefront. Do I think that Wriggles having an increased work of breathing for a few hours will send us to Intensive Care? No, I do not. I know what merits an ambulance and an emergency and what merits scanning the shelves at Boots. I don't automatically assume that every single infection is life threatening. But living with memories is a curse as well as a blessing. Because for a split second, fear overpowers love and knowledge and you realise that you cannot ultimately protect your child from everything, try as you might. And that, is scary.

Miracles do happen

Saturday 26th May, 2012

Wriggles' food diary

age 20 and a little bit months (17 and a bit corrected)

07:00

200ml Paediasure Peptide milk (high calorie formula milk that has been partially broken down to aid absorption)

09:00-10:40

Graze on small crumbs of biscuit found on the carpet. Buffet is interrupted by Mummy hoovering said crumbs up. Lord knows where they came from/how long they have been there

11:15

What are these delicious items?! About five Organix Tomato Slices (wheel shaped puffed corn type items. Mercifully containing no salt, unlike the beloved Quavers Wriggles has lived on for the past two weeks)

12:45

[ferrets in my handbag and thrusts yoghurt pot at me] "Mother, this here I believe is a yogurt and this is a spoon. Feed me!!"

Just over three quarters of an Alpro soya yoghurt, toffee flavoured

13:15

[mime] "What is that, mother?"

"My sandwich. Yum yum yum."

[grab]

"Errrr you can have A BIT. I need some lunch!"

"Hmph."

Chews a corner of malted bread: first time she has consented to trying to eat bread!

13:28

One cheese and onion crisp (Scottish Grandma's lunch)

Half a ready salted crisp (Mummy's lunch)

Several more Organix snack thingies

13:32

Stop trying to sneak food past me. I can see you have opened the chocolate rice cakes. Give!

A nibble of rice cake. Does not pass the taste test.

Another chew of becoming-stale corner of Mummy's sandwich

13:48

The end of a cardboard kitchen roll tube

13:50

160ml Paediasure Peptide with some chilled water as it is Very Hot

15:40

125ml Paediasure Peptide mixed with 25ml chilled water

17:30-18:25

Polish off remainder of Organix Tomato Slices bag and nibble on fingers

18:35

Two thirds of Alpro vanilla soya yoghurt with a about a quarter of Plum Apple and Raspberry stage one puree pouch whilst waiting for the metro back home

18:50

Few more spoonfuls of soya dessert and fruit with intermittent grazing of bit of sponge finger located under the bookshelf. (Note to self: must tidy up more often)

19:15

Chew fridge magnet.

Swiftly have fridge magnet removed.

Return to increasingly soggy sponge finger

19:40

150ml Paediasure Peptide

20:10

Gag on bottle and projectile vomit across collection of toys, sofa and carpet.

Looks suspiciously like entire teatime contents from 17:00 onwards*

20:45

125ml Paediasure Peptide as nightcap (and to replace the vast majority of dinner and previous attempted nightcap)

Ignoring the gag-induced vomiting, this is the most Wriggles has eaten for bloody ages.

It is also probably the healthiest she has eaten for bloody ages.

(Alright, it might not read very healthily, but largely she lives on a) high calorie milk which usually makes up around 90%+ of her daily nutritional intake b) Quavers-the curse of Speech and Language's suggestions c) occasional crumbs of biscuit, and not always sugar-free baby-friendly guilt-free ones at that)
It is certainly the most adventurous. She tried at least two new things. In one day.
Does this mean that my own meals are no longer sacred?!




*people always say airily of vomit "oh it's never as much as it looks!". However, Wriggles is very good at disproving this theory. On previous admissions, nurses have done double takes at the enormous pools of yuck on the floor and frequently have been known to exclaim mildly unprofessionally "Christ almighty, was that just in one sitting?" and her notes generally read 'vomit: MASSIVE +++'. She appears to have a pretty sluggish digestive system too and can quite easily soak a large adult bath towel. She has also previously (accidentally I sincerely hope) aimed into receptacles such as a mug and bowl. Classy.

Living with Oral Aversion

Oral aversion is hard. Really hard. It strips away one of the most natural things a parent does for and subsequently teaches their child: to eat.

Oral aversion is defined as "reluctance or refusal to eat". It can arise from a number of sources, and often from more than one. It responds well to therapy but does so at snails pace. The reluctance or refusal is not a generic toddler phase of bad manners or defiance; it is linked with oral trauma and thus is an intense experience for the child that literally stops them from eating, swallowing, trying things or allowing textures nearby the face. It must be very frustrating if your child only eats Quavers, cucumber sandwiches and Kit Kats but that is not quite oral aversion.

This post by Life with Jack sums up perfectly much of how I feel about it. Having not yet encountered someone face to face with this problem, the internet has been a lifeline of information and hope for the future. It has given me reasssurance and I have "spoken" virtually to other parents who have been there, done that and got the sodding t-shirt. This has meant a lot, as it is one of those issues that is hard for some people to truly understand and therefore can be quite isolating. It is easy to say airily "Oh they'll get there in the end" but when your child is only on fluids or is reliant on tube feeding whilst around you others are scoffing three meals a day of a variety of textures and tastes, it can feel like another world. And the reality is that it is not going to change fast or go away over night. It is not solved by intense hunger or withholding "safe" or favoured items.

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!!!

Harrrrrumph...............I mean happy new year!

Happy new year!

I so nearly managed a "perfect" day. After a blissful Christmas with my family in Kent, we all intrepidly boarded the East Coast mainline yesterday for a New Year at my northern abode. This morning everyone arose rested and ambled around in pyjamas playing with Wriggles and drinking endless cups of tea. At lunch Wriggles finished her two-week boycott of food and demolished not one, but two (TWO ladies and gentlemen) mini fromage frais and ate the corner of a board book for dessert. Mid afternoon, I bundled her up in new woollen leggings and coat and we made forth to the city centre to see an exciting parade.

Waiting for the metro, poor Wriggles was violently sick. She still suffers from reflux and has a over-sensitive gag reflex and not particularly eloquent oral skills, meaning at 16 months she is still prone to frequent forceful projectile vomiting with feeds and sometimes can be triggered by something so much as brushing her lips. I managed to stem some of the flow with her footmuff but she still succeeded in decorating a large portion of the inside of her coat and inner ear not to mention plastering her hair. I really hate reflux. Not just because it involves dabbling around in sick and wearing that popular around strained mums, 'eau de baby's stomach contents', but mainly for Wriggles' sake. It must be so horrid for her, I just want to wave a magic wand and make her a hundred times more comfortable. It also serves as a daily reminder of prematurity and on bad days taunts me. Rational-me knows it is not my fault but a medical condition that could still be there even if she had been a term baby. Irrational-me says it is all my fault and if I was a perfect mummy like I should be, it wouldn't be here tormenting my baby. It also panics me when I run out of baby wipes on a platform in gale force winds already late to meet my family due to misplacing of the baby's mittens.

We managed to make it in without little trouble, located the family, vetoed Starbucks due to a monstrous queue and found a place to watch the parade that was causing this fuss. Now unfortunately since Wriggles' birth, I have gone from a mild dislike of crowds to having panic attacks when in crowded places and/or stressful situations, or sometimes, Just Because. Cheers mental health. However, I have not had a full-blown one since her birthday in September when we went to a singing and music day (how not to appear a normal level-headed potential mummy friend at the local play centre) and later on that day, the post office.As I took up my spot, I could feel my airways tightenings, panic rising and tears springing up. It is not easy juggling a wriggly Wriggles (my sister had commandeered the buggy to house her shopping sale purchases; this baffled me. I literally cannot remember anymore shopping being anymore than a terse trip around Sainsburys and occasionally a slightly dog-eared jumper from Oxfam which is next to Sainsburys) and practising deep breathing whilst trying to stop sobbing and not appearing a lunatic to a) my family who seemed entirely unaware as were busy bitching about the taxi parked in front of their sight line and b) the general public including a picture perfect family stood next to us. When the parade finally went through, it seemed an utter let-down, possibly as I was wishing it to go faster so I could run off, and partly as Wriggles was far more interested in trying to wave at the two-year old little girl nearby and fend off a little boy who wanted to hold her hand (she will not hold hands with strangers. This is the only hint of separation anxiety; apparently I have shouldered the rest of it). The "Norse-themed mythical spectacular" featured dragons, morris men and mermaids as well as some 'wolves' which looked more like rabid lions on a bad hair day. Apart from that, it was extremely jolly I have been told from people more with it.

The rest of the evening passed without offence. The new year came and went; we all watched Cyndi Lauper in a bin liner on Jools Holland and watched some poor fireworks out  the kitchen window. Wriggles slept unaware of the year turning. I sat her down on New Years Eve and explained about the concept of years and celebrations to be greeted with a blank look and a biffed nose. It could have been worse; she is quite partial for biting noses when teething. Mostly this can be relegated to long suffering Mouse, Christmas Hedgehog and Wheely Hedgehog but occasionally she still goes for people's snozzles or Grandma's toes. New Year always feels such a anti-climax after the bustle of Christmas. However, the next day (post-lunchtime) feels like a fresh new start. Which I fully intend it to be. It is hard to believe my little girl will be 2 this year. This last year has been undoubtedly tough with it's frequent and frightening admissions to hospital. When counting up, we spent as much time in hospital as I do work; not a healthy balance to off-set nice time at home. But now we are crossing the magical boundary of most time ever out of hospital......Long may it continue! That is my new years thanks.I have spent a lot of the time of 2011 reflecting and regretting the sad moments, so want to stuff 2012 with as many happy times as possible. Bring it on!

My New Leaf:

*throw out holey tights (they do not magically self-mend and there is only so much nail polish you can apply to "disguise" ladders) and pair up to socks to avert odd-sock crisis on work mornings

* try to be slightly more punctual. 5 minutes late is acceptable. 55 minutes late is not.

*be nicer to nice people and self-I do try my best and that is all I can do

*be less nice to dastardly all-night-raving complaining crack-of-dawn-shelf-putter-uppers (where do they fit in sleep?) rude neighbours

*keep in touch more frequently with my grandparents

*worry less (hahahahahahahha.......................)

*dwell less on the past to create more for the future

*take a picture everyday of Wriggles so I don't forget this fast-moving time where she seems to learn a new skill/cause more chaos every day. I know I will treasure these times when she is a sullen teenager borrowing my shoes

*get involved with Tiny Lives, the local charity that supported Wriggles' SCBU and is a regional unit providing much needed support and funds.