So those who follow us on Instagram will have seen that we have been having a bit of a rough time lately; Finn was admitted to the Royal Free Hospital on Tuesday for vomiting, weight loss and significant failure to thrive. The various teams involved in Finn’s follow up care finally agreed with the extent of my concerns around his frequent vomiting and admitted him for investigations. After two days of monitoring his intake, output and feeding behaviour he was finally described as “starving” after routine bloods showed extreme dehydration. Due to frequent vomits he was probably on around his fifth consecutive day of virtually zero nutrition, despite our best efforts. On Wednesday a nasogastric (NG) tube was passed for ‘refeeding’ of our starving infant to commence and he has since been given his total calories through said tube with the hypoallergenic formula brand Neocate Junior. It has been 14 months since our initial discharge and without hospital care, needless to say we are in despair, but we feel despair and relief, because life could not sustainably continue as it was.
I could not have tried harder, since breastfeeding (expressed milk); I could not have bought more types of bottles, beakers, cups, weaning spoons or highchairs. I could not have tried more feeding approaches; puree, baby led, cut up into small pieces, spoon fed, pieces between my fingers, self feeding, sharing food, sensory play with food, distractions, TV, no distractions, toys, no toys, positive reinforcement and ignoring him. His vomit induced aversion is so strong that our meal times have slowly been reduced to approximately 2 minutes in the highchair followed by crying to get out and then half an hour or more of his avoidance and me following him around the house with pieces of freshly cooked meat, veg and carbs (dripping in fats to increase their calorie content) between my fingers and popping them into his mouth- successful on the first few pieces, finally giving up when he stores the last few mouthfuls in his cheeks like a hamster before spitting them out on the floor. He is offered a huge variety of foods, we have had to remove dairy, eggs and avocado from his diet due to positive allergy tests but still we have had the same problems. After moving on from bottle feeding at 1 year corrected, he used to drink his milk independently, now he won’t. He will not take a bottle, we used to even manage to get a large dream feed into him at night, now we struggle to get him to take 30mls. We have had times where we have tried our hardest to get him to eat and take milk adequately during the day, and then we have set our alarms to dream feed him with a bottle through the night, doing 8pm, 11pm, 1-2am, 3-4am feeds adding baby rice or cereal to his bottles to increase the calories. We have added vanilla extract to his bottles, milkshake flavourings, put his milk in certain foods- nothing has worked. We see a dietician, we have had explained to us multiple times that Finn has ‘been through a lot’ and to give him time, and had the explanation that a lot of ex-prem babies just have a higher calorie requirement for optimal growth. Every conversation with a dietician involved me explaining what Finn is offered to eat (as if I just give him rice cakes and broccoli and expect him to be fat). I was under instruction to cook all of Finn’s food in oil, so aside from porridge and nut butters with raw honey, chia, spirulina, flax (and every other superfood additive i can think of) for breakfast he has been offered two large portions of meat and veg cooked in goose fat or beef dripping a day plus carbs in the form of potatoes, rice, noodles or pasta. My husband and I have, many a Saturday afternoon, trawled the aisles of Planet Organic calling out to one other the calorie amount per 100g of every ‘free from’ food we can possibly find searching for those most calorie dense while everyone else is trying to stay skinny. Problematically then, during my usual evening Google-marathon around vomiting, infants, food aversion etc. I came across foods to avoid for a child with reflux- the main thing being foods high in fat and oils. The advice from every avenue can be so contradictory and yet linear at the same time: increase his calories. But if he has reflux, remove high calorie, fatty and oily foods from his diet- then what on earth should I feed him? It took us months to get Finn allergy tested, but you can’t skin prick for every food on the planet, allergy testing also only shows positive for acute allergies or type 1. He has had a barium swallow study, and a gastric emptying study both of which have come back normal, his bloods have come back normal. It is driving us insane.
I mentioned in my last post that he is on the very bottom centile line for weight of the UK-WHO growth chart- recently he has fallen off it completely. Luckily, he has had adequate calories to preserve his head growth and so his head has continued to increase along the 50th centile and he is developing normally, cognitively he is doing extremely well, in fact. His length is still sitting on the very bottom 0.4th centile line and so as his surgeon at Great Ormond Street put it last week, ‘some symmetrical growth would be nice’. If the body is receiving insufficient nutrition, weight is the first place you see it, then in length or height and then finally, with the head. Clearly then, although he looks okay, and everyone around us, including health professionals are duped into him being ‘completely fine’ because of his excellent development, he is not. Proportionally and very apparently with his complete lack of growth in recent months, Finn is a classic case of a malnourished infant because he continually and repeatedly vomits, multiple times a day and he cannot keep down sufficient calories to grow and therefore thrive- the question is why?
Many people will probably think that I am desperate to have Finn home again, I am rooming in with him at the Royal Free, luckily between feeds he is allowed out for a wander on the heath or a coffee in Hampstead to break up the sterile mundanity of life on a ward that, sadly, we have already had the displeasure to get used to for extended periods in many a hospital. I am actually glad we are in hospital and that he is under the direct radar of the doctors, where he needs to be to get the answers we need in order for him to come home and thrive, and I don’t want him to be discharged without a solid and well researched care plan that will ensure that we are not in this position again. We are not allowed to take him to baby groups, I wince if I meet another parent for coffee and their child has a cold; Finn’s immunity is so incredibly poor due to his malnutrition that he is so frequently ill, and I mentioned before, once he is ill the vomiting and poor eating is only exacerbated. Looking back, for months Finn vomited daily, but for weight, length and head circumference he always tracked the centiles that he was discharged from hospital with, but all of a sudden, and it essentially coincided with the winter months (increased likelihood of illness) and Finn’s age meaning that he became mobile (exerting more daily energy) and he essentially just stopped growing. On top of this he has had multiple colds resulting in a bad chest and one rather nasty bout of gastroenteritis where he lost the guts of half a kilo. Disappointingly we had Finn admitted for this very same reason back in early March but it was only for one night as the doctors decided Finn looked fine and we were discharged simply with an outpatient clinic appointment to see the gastroenterology team in, wait for it, six months time! Last week we finally took it upon ourselves (as we are still yet to even reach said clinic appointment) to see a paediatric gastroenterologist privately at Chelsea and Westminster Hospital and that, as well as the follow up with our surgeon at GOSH resulted in our admission under the gastroenterology team at the Royal Free on Tuesday and I just pray we find our solution. I am sick of worrying, I am sick of studying a stupid growth chart and I am sick of the feeling in the pit of my stomach at the not knowing what the hell is going to happen next.
So this is the state of life today, it has been since we were discharged and has been getting increasingly worse over the last months. To talk of the gut though where Finn is concerned forces me to begin to explain the worst part of our journey, the next part of Finn’s time back in the critical days of his first time in hospital, the only life as parents we knew. My last post was about Finn’s PDA diagnosis and eventual resolve, the next hurdle we had to face was sepsis and NEC. I will resume on this note tomorrow, as I have a night away from the hospital and I can steal an escapist hour of Netflix by candlelight, the dog sleeping at my feet.