The past almost 2 years have been tough and sometimes it feels like it keeps getting tougher. Whilst we might not be in the critical days of the NICU, the daily challenge and remedicalisation of our life at the moment opens up old wounds. Having a tube fed toddler at home, walking the dog twice a day, keeping a house, attempting to also socialise and feel normal with little support and a husband that works full time- let’s just say it has not been easy. When we first left the hospital in August with the NG tube I felt relieved that we now had a plan to get Finn gaining weight and thriving, and gain weight he did! Admitted to hospital weighing a mere 7.16kg at 14 months corrected, he gained an entire kilo in just an eight week period reaching a peak of 8.25kg at an important checkup at GOSH also growing a few centimetres in height, but as always, everything comes at a cost.
The NG tube brings its own problems, now for anyone who is lucky enough not to know about feeding tubes, there are different ways to feed through them. A bolus feed is pushing the food/milk through the syringe straight into the stomach, a continuous feed using a pump is where an electric feeding pump is set at a particular rate and attaches directly to the tube itself delivering a set volume over a period of time into your baby’s tummy, and finally a gravity feed is where you attach a syringe of milk to the feeding tube, remove the plunger and hold the syringe up high to let gravity allow the milk to slowly drop through. We came home from the Royal Free with Finn on gravity feeds which meant that we had a toddler who, 6 times a day, was to be held still for the duration of a feed going through, dripping painstakingly slowly into his tummy over a period of approximately 45 minutes, only, often, for the NG (which is known to exacerbate vomiting) to cause him to projectile vomit at the end of the feed, losing everything he’d just been given and as you know one of the key reasons we were admitted to the Royal Free in the first place, was for chronic vomiting- I despair! Six of these a day meant we quickly realised that our entire life was structured around tube feeds, setting up tube feeds, administering tube feeds, giving medication, cleaning up vomit- and we were discharged at the weekend so I initially had my husband around for support but had a sickening feeling of dread at the thought of attempting to cope by myself come Monday morning at the commencement of the working week. Our feeding plan was to offer a solid meal 5 times a day followed by a tube feed to ‘top up’ his calories, with the rationale being that oral feeding is the ultimate goal and the way one naturally should self-sustain. Imagine, then: make meal, offer meal at table in highchair, clean up meal, clean up toddler, aspirate tube to achieve pH under 5 to check tube is stomach so you don’t feed into lungs, flush tube, mix milk, keep child still, administer feed, flush feed, hope it stays down…five times a day plus an additional tube feed before bed. Of course throwing into the mix that Finn also should actually, you know, play and experience normal life and that he needs to at some point have a nap we immediately realised it was completely unattainable. All the while as a parent you’re thinking, what if he sleeps for two hours? When he wakes up, what should I do? Tube feed? Offer him a meal orally? What if he sleeps so long he misses one of the planned feeds altogether? If he vomits do I give him an additional feed to make up for the lost calories? Do I just feed him whilst he’s asleep? Is it bad to feed him whilst he’s asleep? What if he aspirates? What if the tube comes out? As you try your best to follow the plan you are facing a torturous internal battle notwithstanding the consideration of actually doing something normal, ever again, with your life or with your days.
So tube feeding at home has been well under way, eventually we managed to get hold of a feeding pump through Abbott Nutrition which made our life infinitely easier; we had a pump that we could set at a rate of delivering a feed over approximately 25-30 minutes. We adjusted our routine to cut his feeds down to 5 instead of 6 and increased the volume slightly- we’d do 3 of these feeds whilst Finn slept (5am before he woke, during his afternoon nap and after he’d gone to bed at night) so that we could keep him still and the other feeds I would run through using the pump whilst Finn was strapped into the pram and do a dog walk at the same time. We cracked it, we got the desired amount of feeds into him daily and felt roughly on top of things- in addition to that I cooked him three fresh, healthy meals a day- high protein and high carb to optimise the nutrition in every bite he consumed. He was growing! I have mentioned before that Finn’s allergies to dairy, egg and soya meant that Finn has developed aversions to food with the learned association between eating and the fact that it caused him pain; during our time tube feeding we have worked on building a relationship of trust with food now that we have completely removed all trace of allergens from his diet and allowed his gut to rest. Finn needed time with the pressure removed from mealtimes and from calorie intake to work out that actually what he chose to eat wouldn’t hurt him and so whilst tube fed he really didn’t eat much at all (his total calorie requirement was delivered through his tube milk which prevented hunger) he started to realise again that he did, in fact, quite like food! To have Finn asking for food again is a huge, huge achievement- food aversion can affect children for years, and some children develop feeding tube dependency, a prospect that terrifies us. Unfortunately the entire duration of our tube journey, Finn continued to projectile vomited at least once a day, mostly more than that and so despite knowing his calorie requirement set by the dietetics team was 1000kcal, we felt as if we were constantly failing as each vomit meant a loss of calories, as the vomiting continued, although we had decent weight gain and Finn was ‘thriving’, he was barely eating at all, vomiting daily, and the NG itself was becoming more and more a thing of trauma- we feared aversions taking a turn for the worse.
To insert the NG you have to hold Finn down, all 4 limbs, restrain his tiny writhing body, hold his head still with one hand cupping his chin while he screams in agony and fear and cries the entire time. He is gagging and retching as you put it up his nostril and continue passing it down his throat until it is in his stomach then tape it to the skin on his face, wet with tears, hot, angry and red. As he’s been crying so much, a little later I have no choice but to peel the tapes from his face and restick as they have already started to peel. If the tube comes out, I’ll have to pass another and put Finn through all of that again- you worry about it continuously. And, sadly, yes I do it myself, I hold my own child down and force a tube up his nose, then console him afterwards and we move on because at the time, in an acute sense, it’s a necessary evil. So that’s one half of it, what you don’t realise is that with each vomit the tube may be brought up from the sheer force of the retching and end up, still taped to his cheek, going down the back of his nose and coming back up out of his mouth, it’s dangling freely, dripping in vomit and gastric fluid. I then have to hook my finger around it in his nostril and pull it back through, pull it out of his nose, pull the tapes off his sore skin on his cheek, all the while he’s screaming and there’s vomit everywhere and the dog is quivering in the corner not knowing what to do- and that’s if you’re in the house alone, what if it happens in public?
So at our latest gastroenterology and dietetic review before our recent holiday, the decision was to begin a tube wean- that is, reduce the number of feeds through the tube gradually, hope the vomits reduce and that he begins to eat and drink more himself as the decrease in tube calories stimulates his appetite. We dropped from 5 feeds to 4 as we realised that Finn always kept 4 feeds down successfully, then from 4 feeds to 3 after Finn had a bout of bronchiolitis and the vomiting started again, once he recovered we continued the 3 feeds and he was eating fairly well, the following week we were away in Greece and decided to move down to 2 feeds and follow his lead with oral eating and he was drinking plenty of water, by the end of the week away Finn vomite, the tube came out and so we made the decision to leave it that way (we had planned to go from two feeds to zero anyway) and give him a chance. We are now a week on from the wean and Finn’s weight has, expectedly, dropped, but not as dramatically as we thought. He is eating three meals a day, drinking water, and asking for snacks constantly so we seem to have successfully stimulated his appetite and his attitude is positive. He is on Lansoprazole, an antacid, to help with his reflux and since removing the allergens and also the Neocate formula from his diet and coming off the tube, we have not had one single vomit…so far so good. What happens next? We don’t know, he is thin, frighteningly so, but he is the most active ‘malnourished’ toddler I have ever seen! He is full of life and personality, he is hitting all milestones and turning into a beautiful little character, we have naughtiness, cheekiness, loving affection and all of these changes, this morphing we see in our son from a baby to a little boy is all while he is still not able to walk in trousers for a baby half his age without them falling around his ankles! We can only hope now that his growth curve begins to pick up, however slowly, and that we can keep him as well as we can over the coming winter months where, naturally, he will have a harder time. Next Wednesday we have a review with the dietician in our gastroenterology team and we hope that they are as positive as we are in seeing the progress Finn has made in such a short period. There is so much literature and advice around tube weaning, but essentially I have concluded this: he is eating and drinking like a normal child, the vomiting has stopped, he can tolerate all textures and liquids and will eat a variety of foods… it must be about achieving adequate calories and tube feeding (force feeding) well- it may well eventually be necessary, but it’s the last resort!