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

Our New Addition

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

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

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

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

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

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

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!