NEC

One day we came into the hospital, and Finn had been moved from Intensive Care to High Dependency after a  period of progress. You view the move up the corridor as a promotion and quite literally a journey towards home, and so after the drama of the PDA and the extubation things were starting to feel a lot better. Finn got through a couple of weeks with decent progress, he was tolerating feeds well, he was allowed out of the incubator for lots of skin to skin, his CPAP pressure requirement was reducing and he was switched onto BiPAP (a lesser form of respiratory support). By this point Finn was 29 weeks gestation and we started to get excited, we even bought our pram in anticipation of a home date we, hopeful and naively,  saw could be potentially 10 weeks away.  All of a sudden, a set of routine bloods showed Finn’s CRP (C-reactive protein, the blood test marker for inflammation in the body) was high and he had started to have frequent desaturations and bradycardic episodes- key signs of acute sickness in a neonate. I, too, then was feeling run down and I realise now, stress greatly affects my immune system; I lose weight, I have a poor appetite, I feel nauseous and so survive on probably one meal a day plus black coffee to get me through and that time I found out I had Shingles on top of everything else we had going on! It is important to be mindful of stress and how it affects you so that you can find a way to manage it regardless of what it is you’re going through. Another way my stress manifests is through apparently random vomiting; numerous times throughout Finn’s initial hospital journey, and since (if things aren’t going quite so well) I have had strong stomach pains in the night followed by aggressive vomiting then I wake up the next day feeling perfectly okay. The problem is, as the parent of a critically ill neonate, you are not allowed anywhere near the unit if you are not well due to the infection risk and when the vomiting first happened to me, I couldn’t be sure that I didn’t have a bug. Only immediate family are allowed to visit your baby in hospital, you are not allowed to bring coats or bags into the baby nurseries. So many people ignore the rules and try to bring in lots of visitors, completely ignorant of the fact that they are putting their own baby and others at risk. We found it very difficult on these occasions to hold our tongue, you feel you are balancing on a knife edge between waiting to bring your baby home, and life threatening (or life taking) sickness. Being forced to stay away when ill, you in part feel a sense of relief that you have no choice but to have a couple of days back in the real world, but the level of guilt you then experience is painfully all consuming. I could not bring myself to socialise, I could not sit there and hear about the ordinariness of other peoples’ lives, all I wanted to do was be alone and try to navigate a way to plough on without collapsing in emotional pain with that relentless feeling in the pit of my stomach.

***

I could have screamed or curled into a ball semi-conscious even yesterday, leaving the hospital for a period; I see Finn with the NG tube taped to his face, his skin mottled and pale, his hair thin and wipsy, weak and unsteady on his feet. I drive past endless numbers of couples in the sun, not too dissimilar from ourselves with their Bugaboos, but with chunky sleepy toddlers, tanned bare feet sticking out from under sun canopies, mums already pregnant with their second.  By 27 years old we’re already robbed of all of that, robbed of the excitement of the future.

***

As Finn had a raised CRP, we were told that he would not be going anywhere, it essentially meant he was sick, where he was sick, we did not know. Before this they had been mentioning the possibility of transferring him to a lower level hospital, The Whittington in Archway. With a raised CRP, straight away the doctors administer intravenous antibiotics but they assured us he wouldn’t be going anywhere. Just on a side note, another hurdle you have to jump as the parent of a surviving premature child is that these antibiotics cause damage to the tooth enamel of the baby teeth that are yet to come through, and so as if these poor babies didn’t have enough to deal with, their teeth often grow through yellow and lasting damage is also sometimes seen with their adult teeth as well- they just never get a break! Anyway, so he had antibiotics, a day passed and the next thing we knew we had a phone call to say that with less than 2 hours notice we were being transferred, we had no say on the matter and they were arranging a transport incubator to take us to The Whittington. We felt Finn should not be moved due to the fact that his CRP was raised and he had barely started his antibiotic course, also, as much as it is out of your hands and, to some extent, the doctors, there is absolutely no way that a transfer is in the best interests of your baby. For your tiny neonate to be taken out of the safety of their incubator, placed into a portable version, retubed, sometimes reintubated, thrown around in the back of an ambulance, sirens blaring, bumps in the road causing them to desaturated and become tachycardic or worse, bradycardic. The vessels in a premature baby’s brain are incredibly fragile and as I have mentioned before they are vulnerable to haemorrhage. Transferring an infant can cause haemorrhage- it is as simple as that and so as the ward is desperate for bed space and you are moved out, this process can have life altering consequences. In the course of our 118 day NICU journey, Finn was transferred an unacceptable and quite terrifying 7 times.  Before our first move I heard through the grapevine that there was a lady on the Labour Ward due to give birth any day with 23 week twins and so the consultant neonatologists were under pressure themselves to find beds for the unborn babies that would need urgent life saving care. We convinced ourselves to empathise and to see the transfer as a marker of progress thankful for having been recipients of such care ourselves, we felt the doctors must think he’s okay if they’re transferring us to a lower level hospital, let’s see it as a way of putting the UCH trauma days behind us.

So we ended up at The Whittington, the transfer went relatively smoothly but as soon as we got there, Finn was put back into Intensive Care and the doctors and nurses seemed extremely concerned. We, being desperate, of course, to be moving forwards could not understand the rationale behind the decision. To us, obviously, it felt a huge step back and we felt a level of mistrust in the doctors we met at The Whittington in comparison to the almost enveloping comfort in the familiar faces and surroundings of the ward at UCH. But we were naive in our lack of medical knowledge at the time and our desperate hope for Finn to pull through without issue. Finn’s abdomen was distended, his bradycardias and desaturations continued to worsen and he developed bilious aspirates.

Easter Sunday was the worst day of my life up until that point. I woke up in the morning, early as always, to get into the hospital, I had my morning routine: express milk, drink tea, shower, pack bag with milk bottles from expressing over night and make my way to hospital. But that morning they called us before we got there, the type of call you dread, to tell us that Finn was not in a good way. I flew up East Heath Road, frantically tapping my index finger on the steering wheel at the lights, the ticking of the indicator ringing in my ears as the panic set in. Finn was barely holding on, his breathing was shallow and he had regular apnoeas, his heart rate was repeatedly dropping dangerously low, and his tummy was protruding round and distended, his skin was grey and the whole team were standing around his incubator- clearly working out how to handle the situation to preserve his life. That’s the problem with asking the parents of a premature baby how he is getting on, or when he might come home, not only is it impossible to ever determine that but their condition can so rapidly and dramatically change over the course of just a few hours. At this point obviously, we were now in a Level 2 hospital, without the safety net of a tertiary level unit. The consultant in charge ordered for Finn to be reintubated and was already making the phone calls for retransfer. I remember that day so clearly, standing with my hands on top of my head in despair as the numbers fell and fell, the doctors nervously passing looks between one another. I burst repeatedly into tears, sobbing uncontrollably at the helplessness of the situation and the inescapable terror. You know it’s bad when a nurse calls you into a room to essentially soften the blow that he might well die. The unit at The Whittington is in desperate need of investment and development; it is cramped, run down and not built for the complex demands of an acutely sick and very tiny baby- all of the other parents’ babies in the unit at the time were essentially well with just a little feeding support, or something equally non-invasive, and then there was Finn- 900 grams and dying in the corner.

Within 6 days of our transfer to The Whittington, we were on a blue lit transfer back to the Level 3 facilities at UCH with the query of sepsis or NEC swirling below us like a devilish and threatening black hole. Sepsis is a life threatening condition that can lead to multiple organ failure and death; the body’s response to infection starts to interfere with the functioning of organs of the body. NEC is a serious condition in which the intestines become inflamed and start to die. It can lead to a perforation developing in the intestinal wall allowing the contents of the intestine to leak into the abdomen causing dangerous and, likely, life threatening infection. We had the possibility of the two or both- what a dichotomy! Our transfer eventually took place at around midnight, we were back in a nursery at UCH by around 1am, secure we felt, in the knowledge that at least by returning, we were back in a familiar place and we knew the team. We left the room to breath for a minute or two while the nurses set Finn back up in the ICU and the transfer doctors did their handover. Almost immediately Finn had another X-Ray, chest and abdomen- chest because they needed to ensure that his ventilation tube was placed correctly (because of transfer) and abdomen because, well, clearly they thought he had NEC.

By 2am the Consultant came into the nursery and washed her hands at the basin- she pulled a  movable screen across to Finn’s incubator to allow our conversation to be conducted in relative privacy and I knew- they only do this if it’s bad! ‘We think it’s NEC,’ she said, ‘you’ll be transferred to Great Ormond Street by morning.’ And the thing I remember most that moment, is not how I felt- I didn’t really have anything left to feel, but I will never forget that look of sheer pity and sadness on her face.

Eat

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.