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.

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!

Home Alone

And, so today is the First Real Day of being home alone, with a new tube. Although not that different from an NG, it feels a huge step. You see, the NG felt familiar. Yes it was horrid to be re-passed so often and we got a fair few stares when out and about, but it was what I knew. From NICU and from time and time again during periods of hospitalised illness and the failed plan A, I was fairly good at working and caring for the NG. I knew the pump and gravity feeds, I knew about aspirating and pHs. I knew what number it was passed down to (28) and that there was no point putting a silk (longer term, can be left longer before replacement) one in because they never lasted longer than 3 days against Wriggles' reflux. With the PEG, or G-Tube, we still have the pump, the same feed, the same volume, aspiring to the same pump rate, the same medication, the same port on the tubing line to give medicines, the same routine...but one big difference. It was applied during a surgical procedure, meaning there is a wound; the stoma site. Caring for a surgical wound is not quite the same as taping Hypafix (breathable adhesive) to a cheek. On a scale of hardness to do, it is hardly up there, just takes a bit more time in the day and extra care in keeping things sterile and clean. An infection broke out before we had made it out of hospital so she needs antibiotics twice daily and gauze over it to keeping it (and her clothes!) protected. Still, barely rocket science.

But my goodness it feels draining.

It is because it is the more intrusive physical evidence yet that a) there has been a rocky road and b) that is not going to go away any time soon? (The tube that is and rocky road)

I'm not going to sit here and amateur psycho-analyse my feelings towards tube feeding or anything else. It would be nothing short of dull and do no good at all. Let's just leave it at yes I am mighty glad for possibly the first time since leaving NICU she is receiving a sufficient intake of both fluid, calories and vitamins and minerals, yes I am really relieved that part of the battle is quits now and yes I am over the moon that the risk of aspiration pneumonia is reduced  but also yes, I hate it. It sticks out, it causes my daughter some pain right now and frustrates her because she can't understand why she is too sore to crawl or sit for too long by herself.

Presumably because anything using the core muscles disturbs the g-tube placement and niggles at the site, for the moment Wriggles cannot crawl or sit for long by herself. She can pull to stand and cruise for small periods of time and climb on my sofa, but as she is still weak needs watching like a hawk (3 accidents in half an hour this morning....) and frequently, help. Not that she will ask for it or thank you! I know this is a teething hiccup while her body gets used to everything and stops treating it as a foreign object, and whilst the stomach lining stops trying to pull back away. Still, it is sad to see my happy nutcase loose some independence and confidence literally overnight. Because of the increased vomiting, her feeds are a lot slower than normal so in some ways, it makes things easier, but in others there are not really words to describe seeing your tearaway attached to a feeding pump for right now, anything from 15 hours a day. We have read a lot of books.

By bedtime, Wriggles was finally able to muster some strength through gritted teeth to crawl a bit. Whilst attached to the feeding pump. Understandably she screamed, though as much in reply to me saying "Wriggles, please sit down" to it pulling. Thankfully today, all feeds have stayed down so I am hopeful to slightly increase the timings tomorrow as today there wasn't much longer than an hour between each feed. I'm hoping the antibiotics kick in soon and am looking forward to being able to catch a community nurse on Monday as the stoma is very much oozing and the tape used for the dressing seems to leave Wriggles with angry red marks. Would it be too much to ask for one thing to be straight forward?!

Still, I now feel a bit more confident than I thought I would. I started writing this at lunchtime, feeling like I was being put through a mangle (and a tiny one at that) and only a few hours on feel far more like a human being. Thanks to the fantastic Feeding Tube Awareness and their wealth on information and on-line tutorials and trouble shooting, I have worked out a better way of 'venting' the tube (removing painful trapped wind; minor bonus of having a tube) which causes more frequent vomiting and pain. Some friends dropped by around tea time, and when asked the inevitable "how long is it for?" I managed to neither snap nor cry when I said I didn't know: it could be a year, it could potentially be forever or at least the bulk of childhood. The short answer: however long it needs to be there for. Now we have gone and got it, I am not compromising my child's health or trivialising what may be a "minor" procedure but is rather an major adjustment. I know fully well that neither Wriggles not me will successfully adapt overnight and that because apart from no fluids by mouth, her dietary needs are fluid so will hopefully change as she grows, matures and becomes less aversive.

Who knows, I may even venture out for an adventure tomorrow...  Maybe!

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.

The Op

Today, Tuesday 28th August, we are going into hospital again. The PEG insertion: take 3. Third time, lucky right? It may well be put back again, but if all goes to plan then on Wednesday morning the surgery will take place and after that we will be kept in a minimum of 48 hours to check that the tube is working, Wriggles is as comfortable as can be and that the stoma site is healing well.

Thank you all so much for your ongoing support, incredibly kind comments and keeping us in your thoughts. Compared to so many, our experience is but a drop in the ocean though to us it feels huge. Knowing people, many of whom we will never meet to thank, are rooting for my beautiful girl really is such an amazing thing. I leave you with some pictures from our messy afternoon and hope to be back by the weekend on the next part of our little journey!

Much love, x

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.