The ‘beast from the East’ brings the term housebound to a whole new level; not having been able to take Finn to any baby sessions and classes, erm,  ever, although incredibly lonely has been vaguely manageable and cemented by my high levels of anxiety at the thought of him becoming ill. His constant sickness was enough to assure me that actually I was doing right by him, and so were the doctors in advising me to stay away…but it got to the point that he was so sick anyway, that I wondered if being totally isolated was at all beneficial. You start to realise that although you might have avoided ‘Monkey Music’, even sitting Finn in the supermarket trolley, him touching the handles (that 15 other toddlers ridden with colds and bugs might also have touched) is enough to be an ‘infection risk’ in itself and so essentially, not getting sick, is a virtual impossibility. For a while I would meet other mums for coffee or host playdates with the condition that all present had to be declared fit and well in order for us to meet, but Finn’s second (actual) birthday brings with it a whole new issue that we hadn’t foreseen: boredom! His malnutrition by January had got to such an incredible level that in my attempts to see friends and socialise Finn, following an appointment one day I decided to be brave and do something nice for him, and a friend and I took her twins and Finn to a playgroup. Finn had his tube feed running in his backpack, we had just got into the building, taken shoes off, undressed the babies when a mum and her toddler ran out of the room with the little one projectile vomiting- the mother declared the toddler had just come down with a sky high temperature and had begun to be sick, profusely apologising because to normal mums, not hospital mums, but to normal mums, it’s simply not nice for your child to get a bug- it’s sad to see them unwell and quite frankly inconvenient for everyone to catch it. For me, however, and Finn it is nothing short of catastrophic! I cannot begin to tell you how bad Finn was as at that point, so incredibly thin and prediagnosis (of Eosinophilic Esophagitis) we were hanging by a thread, we felt, with him being out of hospital. I was trying to be brave and do something nice for Finn taking him to a playgroup when we never go anywhere (literally it’s got to the point where a hospital appointment is actually something to do that week) only be smacked in the face by reality when we happened to be so unlucky that just by chance this child had fallen ill the day we decided to attend. Well, I cannot begin to tell you the level of panic that overtook me! With a sharp inward breath my immediate reaction was to try to get out, grabbing Finn I turned to open the door which had been locked behind us to keep the children safe inside. Frantic and searching I cried out pathetically and desperately to the lady running the group who must have thought I was absolutely insane and ended up hiding in the toilets with Finn until the lady with the sick child had managed to get him into the buggy and out of the building to head home. It might have been a panic attack I don’t know, my adrenaline levels were through the roof and honestly, I am very aware that this is not a normal way to behave and I must seem like some sort of nutter but the knock on effect of Finn getting yet another bout of gastroenteritis just didn’t bear thinking about and I then felt guilty and on the verge of tears both for putting him at risk and quite embarrassed and shocked at how much I was affected by it.

Well, there was absolutely no way we could stay- said child had just spent an hour in the playgroup, touching every toy in sight, probably putting toys in his mouth, wiping his nose, touching toys again…it’s like over time I have developed a sort of UV vision and I can spot bacteria on every surface before I even begin to think about sitting down. I know, full well to the average person reading this it sounds so incredibly over the top and so so strange, but I am not joking, this is how I have had to be since bringing Finn home and admittedly it develops into obsession but it has been absolutely necessary. Every decision I have made, I have tried to make in his best interests and to get him to the point of thriving. Mine and my husband’s hospital admittance ritual is to wipe the cot he is given (every cot bar) clean with Clinnell antibacterial medical wipes before Finn is allowed to get in it; we’re admitted because he’s sick, the last thing he needs is to catch something from a previous patient, or God forbid MRSA! You’d be surprised, or not maybe, to know that when I wipe the hospital cot and all of the surfaces in the bay that he has been admitted to, the wipes are all to often  brown with grease and dirt…

In January, Finn was transferred from the Royal Free to Great Ormond Street for an Immunology review to check for any immune deficiency or autoimmune disease; thankfully the results came back fine and we have no further follow up. We have been given the all clear to treat him like a ‘normal’ child especially now that the PEG tube has allowed for him to gain some weight and become a little stronger, and from the spring (once this year’s cold and flu season is out of the way) we have been advised to begin taking him to groups and sessions for toddlers, after all, his development overall and socialisation is just as important as his health! As we had initially planned to, for this reason we will also put him on the waitlist to enrol him part time in nursery or preschool, probably, from the Autumn. Since January Finn has grown from 8kg to 9.6kg- he’s stronger and as a result this week he has been to ‘Bears in the Park’ and ‘The Story Hat’- this activity, ordinary to some, has been the biggest breath of fresh air for our family to have been able to do simply day to day baby things! When he starts nursery I might even invest in an Interior Design course!

I found a link recently that is a really simplified explanation of Finn’s diagnosis: I am really, really hoping that Finn might be one of the 85% of paediatric cases that respond when the top 8 allergens are eliminated from the diet. He had got so sick by January that we had no option but to treat the EOE as aggressively as possible. Whilst on a high dose of PPI medication (24mg daily of Omeprazole) designed to treat reflux, inflammation and neutralise stomach acid, Finn signficantly, has also been on an elemental diet since 5th January- this means no food at all! He is exclusively on an elemental formula (Neocate Junior) that is entirely nutritionally sufficient, through his tube and he’s just allowed water to drink. He would be allowed to drink the formula- you can get strawberry and vanilla flavours- but he just won’t because it tastes so disgusting. This, at the moment, is a short term plan to bring his eosinophilia into remission, and hopefully we will have a baseline from which to start to reintroduce certain foods. We are not sure yet whether we will go slowly and introduce perhaps three foods at a time on the doctor’s instruction and see how he goes every three months, or whether we will reintroduce all foods except for the top 8 allergens, so Finn will maybe be top 8 free (dairy, egg, soya, wheat, peanuts, tree nuts, fish and shellfish) as well as any of his additional IgE allergens. I’ve mentioned before that Finn is allergic to avocado, apparently if you are allergic to avocado you are likely allergic to banana, kiwi and latex…so you can see how quickly the list of foods necessary to avoid becomes longer and longer. EOE is a complex disease that spans immunology, gastroenterology and allergy.  The reason EOE is categorised as an allergic disease (although complicated because not all of the foods that might affect Finn’s esophagus are necessarily IgE allergens) it is categorised so, because when you take away the offending foods or environmental triggers- the condition gets better and all but goes away. Finn’s immunology review, although not showing any significant immune disease, did show that his total blood IgE (his body’s allergic response) count (normal range 1-52) was over 1000, he also had raised platelets and raised blood eosinophils which points to inflammation in the body. Interestingly, something we didn’t know before is that he is also highly allergic to wheat. This has never been eliminated from Finn’s diet before, it may be such a huge trigger that we are hopeful that it could be that simply by taking wheat of the equation when he’s back onto eating normal foods, we might see him do very well but we know that it is probably not going to be quite so easy.  Finn also recently had a brain MRI which thankfully came back normal, although we had the EOE diagnosis just before Christmas, Finn had got so poorly the paediatric team wanted to rule out any ‘central cause for vomiting’ and so they were looking for tumors, bleeds or hydrocephalus (fluid on the brain). The investigations, although absolutely necessary, have been a relentless barrage of panic inducing horror, constant admissions, constant pain and medicalisation of life for Finn. My husband has been off work supporting me, and we’ve been getting through it as a family. We reached breaking point after Christmas where we and the doctors still felt clueless as to why he was continuing to lose so much weight and why we could not (and still cannot) stop him vomiting…we have never felt so close to losing him and honestly if we did not have some time together to work through this, I think one of us might have got to the point of nervous breakdown.

Then a month or so passes. He has gained 1.6 kilos and jumped two centiles- he is happier, stronger, bigger. He hasn’t had a cold, he hasn’t had a chest infection and we can breathe again. He has also been put on a medication called Montelukast which seems actually to be the only medication we have ever seen improve Finn’s health- he used to pretty much have asthma or bronchiolitis symptoms every two weeks but since we started this there’s been no sign of it- it also helpfully, happens to be a medication also used to treat EOE! Finn was referred to the specialist Gastro team at Great Ormond Street for his EOE and we had our first appointment last week- the most positive appointment we’ve had in a long time: the doctor truly thinks things can only get better from here. Recently a friend came over and she hadn’t seen Finn since he was incredibly tiny- she told me that what I have written about and what Finn has been through make him sound like a very sickly child, and she didn’t know what to expect when he saw him. Then he ran around the house holding her hand, dragging her from room to room trying to talk, showing her things! It made me sad to think that I have cast the image of a little boy that makes him appear so much less or more frail than he actually is, because despite all of this, we have a little boy who is in every sense of the word completely normal. He’s sweet, he makes us laugh, he’s caring, he’s naughty, he has tantrums, he gets told off…but he vomits, without fail, every single day (often more than once) and that’s just our day to day situation as it always has been. Once we get this controlled, he will eat, and drink and thrive, we hope, in his health just as much as he is in his mind and we cannot wait for that to be his and our reality! In the mean time, it’s okay, we will do what we have to do to sort this out which means at the moment every 8 to 12 weeks Finn must have an endoscopy to take further biospies, check the cell count of eosinophilia under the microscope per high power field (his first diagnostic scope showed 45 and more than 15 is active disease) and hope that we can get it into remission. Each time we will trial foods- taking things out of his diet, putting things back in and watch and wait to see what his cell count does. His second scope is next Wednesday at Great Ormond Street- he has to be admitted for possibly two nights, he will have an endoscopy and sigmoidoscopy looking for eosinophilia all the way through the digestive tract (they may not be just in his esophagus) and we will make a new plan, based on the results, from there and we will continue to live like this, from scope to scope while we hopefully make progress! In the mean time, we have some time together as a family; we’ve had an offer accepted on a house and we’re moving back to our favourite area, we are making travel plans for the year ahead and we feel so, so much better now that we have even the vaguest idea of what we’re dealing with and in the knowledge that eventually things are hopefully going to be okay! Be thankful every day for your health, it is simply the most valuable thing you have.

Happy New Year

It’s as if every time I post something I jinx things! It has been a not so Happy New Year to the Brennan family so far as I am writing on day 10 of Finn’s latest hospital admission to the Royal Free and we’re not going home any time soon. My husband and I are like passing ships, we each taking turns to go home and have a full night’s sleep in our own bed, take home the dirty washing and bring in clean clothes- a fridge full of reheatable food delivered to our doorstep by doting family members. Finn came down again with a virus from Boxing Day and spent the subsequent almost two weeks not able to keep anything down. On the surface, it’s disconcerting, Finn looks completely fine. He’s confident, energetic, the sweetest little boy who loves his new play kitchen, his push along Peter Rabbit and who likes to have clean shoes, ‘thoos’ as he calls them… and then all of a sudden he gets poorly, to the extent that to everyone else would be mild, as insignificant as your standard winter cough or cold but his symptoms just spiral completely out of control! We ended up in a situation again where Finn was surviving for a fortnight on around 200 calories a day; barely eating anything but then projectile vomiting everything which he did eat all throughout the day and then in his cot at night, we’re having to use disposable bed-wetting mats on his sheet to prevent the catastrophic 3am mess and strip him of all of his bed clothes, sometimes put him straight in the shower, heavy with sleep, screaming in discomfort and disorientation, head to toe in vomit- he’s borderline dehydrated, and is only able to consume a fifth of what he needs for growth and development and on informing the team, of course, we were instructed to take Finn straight to hospital.

So here we are again, ward 6 North of the Royal Free Hospital, luckily recently refurbished so we occupy prime NW3 real estate in a private hospital bedroom with an ensuite- it’s the little things! Finn as usual has had multiple checks in this admission, further bloods, an immunology referral and transfer to GOSH, more bloods, back again, a chest X-Ray, another Barium study, stool sample, NPA swab, and again, devastatingly he is completely nil-by-mouth.  Every nappy is weighed so that his exact input and output can be calculated. He is now on 100% tube feeds as a drastic measure to rapidly treat his EOE and bring his symptoms under control by eliminating foods entirely from his diet. Finn’s PPI medication, Omeprazole, has also been tripled which treats both reflux and EOE, he’s now on 3mg per kilo over two doses a day in the hope that it will bring his esophagus (and his eosinophil count) into remission- some EOE is what’s called PPI responsive, we doubt that this will be the case for Finn but PPIs also have anti-inflammatory effects and with his diet now for a time being elemental, we have two potential methods that have the capacity and are likely to rapidly bring his EOE and reflux symptoms under control. He will now remain on this regime for a further 8 to 12 weeks before he will undergo yet another endoscopy under general anaesthesia to assess the state of his esophagus and take further biopsies to see if his eosinophil count has decreased- we can only watch and wait and hope in the interim that he gains weight, before the histology report from the endoscopy outlines our next steps.

It is so complex, a path so untrodden (or so varied from patient to patient) that the doctors do not know entirely with Finn (although we had the recent EOE diagnosis) what they are treating. He has left them stumped, not responding to classic first line interventions, his case is very complex, constantly prompting further investigations which make us as parents feel that nobody really knows what they are doing, and question whether they are missing something catastrophic or whether they are in fact doing exactly right by him! This is now our fourth admission at the Royal Free Hospital for Failure to Thrive and upper respiratory infections. He is malnourished, that’s correct. He may have severe reflux, he does have EOE, EOE may have caused reflux, severe reflux may have contributed to the development of EOE or he may have both, and  food intolerances and they exist on one, very aggressive continuum. This is all further complicated by the fact that Finn’s consultant has never diagnosed EOE in a child as young as Finn, he has now referred Finn to the Gastroenterology team at GOSH so that Finn’s care will now be under one roof. It is highly valuable for transparency of test results, ease of communication between departments, and also continuity for us as Finn’s parents to not be bouncing back and forth between hospitals, departments and doctors. We want the best, the very best for Finn and we will continue to strive to get it!

EOE is a new disease, the doctors are making decisions based on trial and error, just as much as we are- they don’t know if he’ll have it for life, if he’ll be symptomatic for years or if at some point with Finn- he’ll just grow out of the majority of all this, and we’ll visit the ward when he’s ten years old and look back and say, ‘what a nightmare that all was!’ 

Danny has had to take some more time out from work; currently Finn is attached to a feeding pump 14 out of 24 hours a day, we are allowed out for walks but our day to day revolves around an opportunity to see doctors, probe and discuss his progress over the last 24 hours, assess Finn’s latest condition. Blessed as I am to be Finn’s mother, it is my duty to remain informed, entirely, with his medical care so much so that in my spare time I read medical journals constantly so that I am equipped with the knowledge to ask the doctors the right questions, so that I understand their rationale when it comes to treatment decisions, methods tried, review dosing of key medications, consider symptoms that perhaps they themselves may have overlooked. It is both empowering, and a curse. I feel empowered that I can engage in intellectual discussion regarding the ongoing decision making around Finn’s next steps, but it’s a curse in the form of a mental prison- inescapable, bordering on the obsessive where I read to the point that I cannot let go, and just be myself, be Finn’s Mum, and be Harriet- the person I thought I was before all of this happened. It’s enough to destroy you, this inability to let go and so I have come to realise that in my spare moments it is also of paramount importance to look after myself, and focus on my health in body and mind for this situation to be remotely sustainable- because we don’t know what’s going to happen, or when it’s ever going to end and it is an important skill to be able to switch off and relinquish control. Although living in hospital, we have had such a lovely weekend and seen so many family members and friends. When we have our darker days, it’s as if the world is closing in- like a suffocating heavy fabric draped over us- we’re fighting and fighting and it’s thick and impermeable and we can’t get out to the top to breathe. I had a day like that just this past Tuesday, but then when things become a little more stable, you see your friends, see your family, exercise, cuddle your dog, nourish your body and soul- read magazines, read books, watch Netflix, message friends on WhatsApp because you so, so need to be human and luxuriate in the ordinary!

For now, in our breaks we’ll go to the playground at the bottom of Willow Road, have an escapist glass of red at The Freemasons’ Arms- walk on the Heath, our finger tips freezing in the bitter January chill as passersby remark on Finn’s sweet backpack. Covered in little rockets, monogrammed and twee, unbeknown to them it holds his amino acid formula in a bottle, inside a feed pump runs, a tube connects to his tummy under his coat to nourish his tiny, fighting little body. Mud on his little shoes, his blonde hair blowing in the wind- he’s a little space man, a jet pack on his back traversing galaxies unexplored. You might expect me to say that I wouldn’t change it for a second, but I absolutely would- I’d give anything to take away just a single hour of the pain he has had to go through, because however hard this journey has been for us, I never expected life to be so hard for him, and so for now we carry on because every day Finn wakes up with a smile, radiating warmth and gives us all the courage to try to do the same.

Troubleshooting and Diagnosis

On 8th June 2016 Finn came home from hospital at 41 weeks gestation, after 118 days in intensive care he was discharged just one week past his due date! His stoma was reversed in another round of open abdominal surgery (he didn’t require it forever, just 7 weeks in fact) and once he got over his sepsis, once his gut was bypassed and had the chance to heal, on sufficient TPN and some milk feeds, Finn was growing, the stoma gone, no bowel was resected and he was on 100% oral feeds within just 7 days. It was simply remarkable! We were told not to be overly optimistic, he may need to lose significant lengths of intestine if it had not recovered, he could have strictures and narrowings that had to be removed, he could take months to reach a point of feeding orally, he could take months to come off TPN, but he didn’t and he was home, for the first time in his life, within a mere 10 days of his reversal surgery at a giant weight of 5lbs! We had gone from the most dramatic and intense NICU journey to Finn being one of the first babies to make it home of the cohort we knew from the time of his birth at UCH, and we just couldn’t believe it. I don’t want it to come across as oversimplified for what actually remained a very difficult time (we still had another 2 months plus in hospital with the daily ups and downs) and has continued into a difficult existence, but this is where I will end my talk of Finn’s newborn life, because I want to transition from this turbulent reflection to what is going on today and the least I can do in the spirit of raising awareness is share our experience of the ongoing implications of being born a premature baby as it’s complex and there is so much to discuss in the post-discharge medical world. The ongoing challenges that babies face after their first few months in hospital tend to fall into  a few categories; some babies have trouble with one or two areas, some none at all, some have many, many complex problems. Most commonly, for those who have done fairly well since birth, the problems tend to be respiratory (oxygen and some ventilation support) and weaker lungs during the winter illness season, developmental (a potential Cerebral Palsy diagnosis or simply support with developmental delay and achieving milestones) and lastly I’d probably say,  feeding and growth.

We’re very lucky that Finn’s development has been excellent, not that I didn’t panic as each appointment with the OT approached, but I felt more and more at ease as I saw him behaving the same as all of the other babies around me, full term, completely healthy and in reality as the months passed and he got older, it was clear to see for myself his obvious engagement and emerging personality. That said, I was consciously aware of the time frames of baby developmental milestones- what to look forward to (or out for) and what to help him work on- for anyone interested, a great book is ‘Your Baby Week by Week’ (by Simone Cave and Dr Caroline Fertleman) and while it is very good to keep track of these things, it is also important to note that most mothers of healthy babies read these books as interested parents, not parents panicked that their baby has a high likelihood of perhaps never meeting such milestones. It is also so important to stress that however many baby books you buy, no matter how many peers you (however accidentally) compare your child to- they do things at their own pace, they are all individuals and Finn, with his head too big for his body, didn’t roll over until he was 7 months but walked at 13! I have mentioned before, too, that Finn got off rather lightly as his lungs were concerned, we have had 2, one night admissions in 2 years for acute bronchiolitis where he required 3 hourly inhalers to help clear his chest, but we have Salbutamol inhalers at home now and start to administer it when Finn shows signs of a cold or cough and it helps keep potential hospitalisation at bay. Many ex-prem babies are in and out of hospital frequently throughout the year as they get sick with bronchiolitis, RSV and pneumonia and sadly this ongoing risk is increased exponentially the earlier your baby is born but also depending on the respiratory complications experienced by your child in their time in the NICU (weeks of ventilation support etc.) regardless of gestation. And so since Finn came home, we have had our share (a lot) of follow up appointments- opthamology (for ROP and vision in general), hearing, general paediatrics, kidneys (for damage from TPN), haemophilia (for poor clotting), neuro-developmental and lastly, surgical. But as our ‘ex-prem’ issue came to light with growth and feeding soon after discharge, lots of follow up has been ticked off the list while new referrals have been made. Our most important medical support now lies with gastroenterology, general surgery and allergy and the other appointments, now faded into the background, arise perhaps now once yearly as a necessary but minor inconvenience to be ticked off the list.

So we are relatively fortunate, feeding is our issue. I say fortunate because as I’ve explained in terms of life-impacting and long term implications it could have been so, so much worse. I have done my best to explain and make sense of Finn’s feeding issues in my last few posts, this will now become the ongoing focus of the blog as we navigate a way forwards. Sadly I was wrong last time about feeling we may have turned a corner, hence the gap in posting as life has become yet even more complicated. Now our NEC days are behind us, the NICU stories distant memories, we now have a new challenge to face which came as an unwanted Christmas present in the form of a rare diagnosis that might, actually,  have happened anyway if Finn hadn’t been premature. Finn has been diagnosed with EOE. EOE, Eosinophillic Esophagitis is a chronic allergic inflammatory disease of the esophagus, it occurs when a type of white blood cell, the eosinophil, accumulates in great numbers in the esophagus causing inflammation and injury. This, in turn, makes eating difficult and uncomfortable resulting in frequent vomiting, difficulty swallowing, chronic pain and in children, food refusal, poor growth and weight loss. EOE as a diagnosis is relatively new and so it is not all that well researched or understood- there is no cure, but it is caused by an immune response to certain foods. These foods are not always those easily identified through standard allergy testing but instead any food can act as an EOE trigger and can only be identified by trial and error through diet elimination and repeated endoscopy (under general anaesthesia) to check on the eosinophil count present in the esophagus and by monitoring external symptoms. The disease is diagnosed with an eosinophil count of 15HPF and above, Finn’s count was 40HPF- not crazily high, but very high considering he is already on PPI medication and his known allergies are already eliminated from his diet- clearly we have a lot more work to do. A trigger can be anything from mushroom to beef, gluten or white potato or even environmental triggers such as pollen or pet dander (we have six dogs in our extended family). So, it will be a very lengthy and difficult process to reach a point of remission, but once this state is established, those with EOE can lead a healthy and normal life and feeding tubes are not required- once the triggers are eliminated, one should be asymptomatic and the eosinophil count, a healthy zero.

The struggle before this point has always been getting any medical professional to give an opinion as to exactly what the problem might be and we should have done an endoscopy many months ago but as always with babies, one needs to eliminate risk as much as possible. In the absence of any data to suggest anything more concrete, reflux has been mentioned frequently as the most likely cause for Finn’s vomiting and not wanting to eat, but everyone said that he would grow out of it by the time he was walking, and he didn’t. Allergies (of which Finn has many) were the next most logical explanation, but despite cutting out Finn’s known allergens and putting him on an elimination diet, despite the initial improvements, in fact, over time his nutritional status has actually become worse, and his oral intake has continually decreased- the removal of these key allergens saw a reduction in Finn’s vomiting, but not an eradication and it only makes his diet more narrow and less calorific.

The next answer from my endless research was post-traumatic food aversion- medical intervention as an acutely sick neonate (multiple tubes shoved down his throat, poking and prodding all over with needles and scalpels) and discomfort from allergies and reflux caused a fear of eating – a very real possibility that a lot of ex premature babies deal with and can lead to exclusive tube feeding whilst the children work with feeding therapists to overcome their fears.

In the months since the summer, post weaning from the NG tube where we seemed to have a period of rapid and dramatic progress, Finn was enjoying his food- he was shovelling it in, in fact (he’s learned the word “more”) and we optimistically awaited the next gastro appointment (consciously without having weighed him as a marker of progress) to see how he had managed to get on by himself since coming off the tube. Then it started again; the vomiting, the bronchiolitis, the tummy bug and throat infection that came out on the first day of our holiday to Barbados and again, over a period of a few weeks Finn had gained, maintained and then finally lost weight, all over again to knock him back to below his final weight on the tube, back into the state of malnutrition just as winter was getting underway. His eating journey had gone from 8 weeks in the summer receiving 100% of his nutrition, for the first time in his life, through elemental formula via tube, to eating everything and anything and lots of it, to a gradual decrease in interest and poorer and poorer intake in the weeks leading up to Christmas. This coincided yet again with concurrent increase in vomiting and obvious signs of discomfort. Something else, all this time, has been going on, something had been missed and I always had it there, fuelling my endless research, in the back of my mind.

Now it makes sense to me why we must have had a period of a few weeks of such excellent eating, why I thought we’d turned a corner! After 8 weeks on purely amino acid, elemental, hypoallergenic formula (Neocate Junior) and meeting Finn’s calorie requirement, he not only grew, but he wasn’t actually eating any other foods- therefore even though at this point we did not know Finn’s EOE diagnosis, because he was exclusively tube fed for a couple of months, he was on a total elimination diet and we had unwittingly removed all possible EOE triggers. It makes sense, then that in the couple of weeks where he began eating again, his esophagus (the eosinophil count) must have healed and dropped down to within a normal range only increasing again as Finn got back into normal oral eating habits and therefore coinciding with vomiting starting again and a gradual decrease in appetite until we had gone right back to where we started!

On returning from Barbados in the first week of December, I arranged a meeting with Finn’s gastroenterologist. On holiday, my husband and I discussed at length that we did not feel it was safe for Finn to continue without a feeding tube for caloric support- despite Finn’s and our best efforts, we are unable to keep the vomiting under control and we are powerless to increase his intake of food. He has got to a point where he is so thin that he is highly susceptible to illness, and when that illness hits he has no reserve to fight it off and maintain his weight, not forgetting the fact that when any child is ill, they don’t want to eat anyway and so we have simply witnessed Finn becoming thinner and more frail by the day. So after much deliberation and advice and consultation with different doctors we felt we had reached the point where it was the right decision for Finn undergo surgery for a gastrostomy tube- at least for use to get him caught up in growth, and to assist us in keeping Finn well while we and the team continued to investigate the cause for his poor growth and poor intake of food.  Within fewer than 10 days we had an urgent slot at Great Ormond Street and it was decided that whist under the anaesthesia, and because a PEG tube is inserted by endoscopy- Finn’s surgeon, as part of the next line of investigation, would take biopsies from Finn’s esophagus- it was these biopsies which finally gave our answer just last week, an EOE diagnosis two days before Christmas and 2 months before Finn’s 2nd birthday.

It was not an easy decision, a year of failing to thrive in the making, to put our malnourished (and sick with bronchiolitis, heightening risk), trusting, walking, talking, loving toddler through his sixth anaesthesia- stroking his little face and holding his tiny body as he drifted into a heavy, dangerous and artificial sleep. It is his third significant abdominal surgery- another scar added to his already-covered torso, but we felt we had no choice and it has been getting to a point of begging for someone to do something, that we might lose him without significant help to turn a corner and there will, sadly, be more surgeries to come.

Two weeks in, and the tube has come rather now as a blessing, a tube on his tummy going through his abdominal wall directly into his stomach- not very pretty but hidden under his clothes, it’ll help him thrive while only now can we work to undo the damage of countless interventions, misdiagnoses and almost two years of pain, vomiting and inflammation. The initial round of treatment begins now, Finn has been referred for feeding therapy and he is being trialled on a maximum PPI dose of Omeprazole before we do a repeated scope to check if his eosinophil count has gone down and responded to the medication. If not then we will begin, one by one, further food elimination and a potential round of oral steroids to act as a kind of cream for the esophagus until he scopes ‘clean’. There will be setbacks, I’m sure, but as we enter 2018 we now have an answer, and a focus.


When people ask, I often describe the journey as the parent of an extremely premature baby as like being hit by a lorry several times over, without the opportunity to get up and recover in between! I think that’s why you’re affected by the emotion and the trauma of it even some time later when you least expect it- it’s like a delayed shock response to something that you never had the time or the opportunity to process, you were never able to grieve, be sad or build yourself back up again before you were pummelled by the next.

Great Ormond Street Hospital- the place where Finn spent the majority of his early life was a place feared most by parents on the NICU as it was well known that you were only transferred there if something was seriously and life-threateningly wrong. Going back to the NICU days and Finn’s NEC diagnosis; after Finn’s X-Rays at both the Whittington and UCLH showed that NEC and sepsis was highly likely, we were transferred to the NICU of Great Ormond Street Hospital and Finn was placed in an isolation room because he had also contracted CMV (Cytomegalovirus). By now, GOSH was our third hospital, our third set of doctors and nurses, our third set of surroundings to get used to- we were so lucky to be living so close to central London in Hampstead, NW3 which enabled access to such major and world leading hospitals for Finn to receive the best possible care, nevertheless, the constant change was difficult when everything else about our life was agonisingly unfamiliar and uncomfortable.

Once at GOSH Finn’s X-Rays were repeated, strangely these did not corroborate the images sent by the other hospitals- Finn was not showing classic NEC symptoms, to our relief and surprise the decision was made to conservatively manage Finn with antibiotics and monitor his symptoms in the hope that he may spontaneously improve. After five days, a junior doctor accidentally let it slip that Finn was being prepared for major and urgent surgery (without the consultants having formally let us know and discussed it). Finn was deteriorating rather than improving, we were told that we had a few possibilities, either he would be too weak to make it through the surgery (he weighed less than a kilo still at this point), he would lose a large amount of gut or his gut would be too damaged to save him, he would require a stoma (ileostomy) or the surgeons would examine his gut and it may present as healthy and they would simply continue with antibiotics and give him more time. Finn was taken down to surgery that afternoon, we were left helpless and waiting for news for hours, which form it might take we did not know. I happened to have had a birth reflection appointment booked in at UCLH that afternoon with the Consultant Obstetrician who led my care on the Labour Ward. For the sake of occupying our minds we decided to go ahead with the appointment which we hoped might shed some light on the cause of my going into labour at just 23 weeks- bad luck, I was told, such very bad (and so very sad) luck indeed.

Well he made it through surgery, bloated and swollen from transfusions and fluids, the monitors were wild with beeps and shrieks, the team around him working furiously to maintain his SATs, his temperature, his BP. He had a large bandage over his abdomen,  it was all I could see really from my vantage point standing back behind the doctors and through the fogged perspex and numerous tubes (far more than he seemed to have before). Finn had undergone a full laperotomy, that is, an incision from the left all the way over to the right side of his torso, and he had another incision below that which housed his stoma. Finn’s gut was ‘inflamed’ we were told, luckily there were no perforations present and no dead gut so the surgeon had not had to remove any, instead they had given Finn an ileostomy to allow the gut from that point downwards, to rest as it would not have anything passing through it. Instead, waste would bypass the rest of the intestinal route and exit through the stoma into a bag on the outside of the abdomen for a short period of time- he ended up with the stoma for 7 weeks in the end and had the reversal surgery at 40 weeks gestation, the day before his due date. In the time that he did have it, I had the constant fear that he would require it forever.

I have talked before about the nature of medical intervention and its contraindications. Finn had made it through the surgery but as I stood back watching him the afternoon that he returned, there was a stillness once the team had exited the room and I could watch him as the ventilator made the rhythmic sound of regular breaths, it was then that a consultant burst in suddenly, said nothing to me and flipped open the incubator window and pulled off the muslin cloth covering the lower part of Finn’s body and legs. He did it with such a sudden urgency that I was alarmed and frightened, I scanned Finn’s body frantically to discover what he was looking for and saw that Finn’s right leg, the entire leg from hipbone to toe was a dark navy blue instead of the pale mottled pink of the rest of him. I immediately demanded to know what was wrong. I was told that for surgery Finn had an arterial line in his femoral artery to accurately monitor his blood pressure; invasive arterial pressure monitoring is used often in intensive care settings particularly with neonates and acutely unwell children – it is particularly necessary in theatre, as in Finn’s case. Although absolutely necessary, the use of arterial lines can lead to serious but very rare complications such as limb ischemia, that is, a restriction in blood supply to the limb as a result from the line placement which can lead to (as I was told) tissue loss. Tissue loss? I repeated, what did he mean by that? What did he mean? I was so overcome with horror I could barely formulate a response and leant, weakly, against the incubator. ‘Do you mean he could lose his leg?’ I asked frankly. ‘Yes’, he replied, ‘But I am sure it won’t happen’. Finn’s capillary refill (CAP refill) time in his right leg was 8 seconds or more…2 seconds is normal. His CAP refill stayed this way for days, the colour did not much improve. Whenever I was not at the hospital I rang the NICU room repeatedly asking if his CAP refill was at all showing signs of improvement. I found myself almost Googling baby prosthesis, considering the implications on Finn’s quality of life, the future, if he (on top of everything else we were faced with) would never learn to walk, to run, to kick a ball. If I was not already at breaking point, this was enough to make me feel like I was quite literally about to implode. Desperately, I urged the doctor to pull the line out, pressure monitoring was still very important so close to surgery, the line was another point of access- it was needed, but so was his leg I argued, pull it out! During this time I had a desperately upsetting and exasperating conversation with a NICU nurse in charge of Finn’s care for the night when I called to ask about his leg. I don’t recall her name, but I remember complaining to the nurse in charge about the way that we had been spoken to and I was assured that said nurse would not be allocated to Finn again. She asked me, when I asked specifically about the state of Finn’s leg, why I wanted to know. Why did I want to know? Without listening to what I was saying, she repeatedly asked me what my worst case scenario was, because he might lose his leg but, as if I didn’t know already, she lectured me, in fact, ranted down the phone to me to the point that I had to hold the phone away from my face and Finn’s father was telling me to hang up, on the potentially dire outcomes for the life of a 24 week gestation premature baby and all of the health, disability and learning implications in life he might face, if he made it at all. I to this day cannot tell you what her intentions must have been at a time where every day was so critical and we had very little hope left to hold onto. We had read the Tommy’s handbook, we had spoken to the doctors, we had spoken to other parents…we knew what we were up against- we just needed her to answer us, (how is his CAP refill? What about his SATs? Is he stable?), so we might just get a few hours sleep before facing it all over again in the morning. By the fourth day of agonisingly waiting, focusing on his limb health whilst he also had a stoma, wasn’t breathing for himself and was recovering from sepsis, we finally saw an improvement. The colour started to come back, the CAP refill quickened and all we could do was wait, even longer, to see how the tissue was affected. Remarkably, only the very tip, the slightest tip of the end of Finn’s big toe turned black, a crusty thick black like charcoal but luckily only the depth of a few thin layers of skin so that when it eventually dropped off, there was no sign or mark that it had even happened. On the subject of odds, of percentages, which I now obsess over, the likelihood of permanent ischemic damage is just 0.09% from an arterial line. Albeit a tiny amount of tissue, Finn managed to fall into yet another impossible statistic- we’re just so lucky that the damage was not more extensive but had that line been left there any longer, who knows how much more of Finn’s leg would have paid the price. The surgery saved him, that’s what we had to hold onto, you give your consent and the doctors do what they have to, because there is no other alternative.

I have an appointment tomorrow with a clinical psychologist for my third session where I explain stories like this one as part of my journey towards making peace with it. It really does help, as does the knowledge of Finn, in the next room tucked up asleep, morphing before our eyes from baby to little boy, finally discovering his love for food a month post wean from the NG tube whilst we were away in Greece, and I can’t help but think (although I can’t say it without touching wood) that he may, may just have turned a bit of a corner.


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!


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.


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, soya 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 slim. 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 IgE mediated. 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-75th 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.


On the subject of challenge, as my last post was titled, this has been a very frustrating week. Finn, normally a very happy baby, was beside himself on Friday evening and was inconsolable at bed time and then on Saturday he woke up full of cold. One year on from hospitalisation and a minor summer cold can still knock him sideways. Everybody who meets Finn always comments on two things, 1. how bright and happy he is and 2. how small he is. We have real struggles with weight gain- Finn is only just on the very bottom line of the 0.4th centile on the Boys UK-WHO growth chart so despite being 13 months corrected and developing normally, he still wears size 3-6 month clothes and they’re not tight. I have found it difficult with the comments and questions I am continually faced with, from strangers, about his size. Whenever asked how old Finn is I have always felt the need to justify why he’s so tiny and found myself going into the full story of explaining everything as I feel their questions concerning prematurity are an inevitability. These days I don’t bother, I tell them his age and I stop- I don’t have to make excuses for him, in fact I feel overwhelmingly lucky that we have come all of this way and that our only real issue is that he’s tiny, that said, the day to day reality of it frequently gets me down.

In addition to some food aversion (very common with ex-prem babies) Finn has a cow’s milk protein allergy, he is also allergic to egg, soya and avocado (nightmare) and he has always projectile vomited numerous times a day since the day he was discharged last June. I told every single health professional that I saw in every check up throughout the last year but it took until this June for Finn to finally undergo an allergy test. A cow’s milk protein allergy means that Finn has been allergic to the baby formula he’s been given every single day since he first came home. He was fed expressed breast milk from birth until July where he was then prescribed a high energy cow’s milk formula to help him gain weight and promote ‘catch up’ growth. You can, I am sure, imagine our dismay, then, on finding out he has been allergic, all this time, to the very thing that is supposed to have been helping him and we feel we have long been on a path, always one step forwards two steps back. Feeding, therefore has always been our issue. Finn will not accept anything off a spoon, he will not take Calpol, he will not take vitamins…I gaze in wonder across coffee shops at mothers feeding their babies an Ella’s Kitchen pouch from a plastic weaning spoon as, like little birds, they open their mouths in excited anticipation at the arrival of every morsel. I have never been able to do this with Finn, nor do I have the luxury or convenience of ever having been able to give him any form of shop bought baby food as we have to optimise Finn’s calorie intake with every meal, every snack, every drop of milk. He is, now we know about his allergies, prescribed a hydrolised, high energy formula- that is, a cow’s milk based formula where the proteins have been broken down so that his body doesn’t recognise them as an allergen. Standard over the counter baby formula is 65kcal per 100ml and Finn’s formula is 100kcal per 100ml so it is almost double the energy density. Once we changed Finn’s milk and removed the other allergens from his diet, as if by magic, the vomits stopped! I cannot begin to explain the relief but also the intensely high levels of stress, anger and disbelief when this happened. How, in my mentioning of vomits to so many different health professionals, was a cow’s milk protein allergy (or any allergy for that matter) not investigated in a baby who is so small that he now falls into the category of Failure to Thrive. It was only on my going to the GP (who plays an entirely insignificant role in post-discharge care) and requesting an allergy test because of a small rash that appeared on Finn’s face that a referral was finally made only for the next available appointment to be an approximate 6 month wait. It shows, to be honest, how pivotal you are as a mother in your child’s care in the power you have to influence medical management; if I had not firmly requested an allergy test, he would never have been tested despite him being extremely closely monitored by various paediatric specialists. All the while, Finn’s learned association with food throughout the past year has always been that it causes him discomfort. He struggles to gain weight, so on seeing a dietician, of course the advice is to make his food high calorie. How do you do that? You add cheese to it, cream, give him yoghurt, give him avocado- meanwhile, unbeknown to us, he was therefore having a reaction to virtually every meal he was eating as well as his daily milk feeds.

I write this now as it is only in the last few weeks that things have settled down, we have removed the key allergens from his diet, he has been well the past month and his eating, although still poor, is gradually improving and so we see little wins. Recently his vomits are few and far between but as it does not happen as often any more, it is even more distressing when it does! We know each vomit means a lost meal and therefore minimal calories ingested. It is quite simple: if you want to lose weight, you need to consume fewer calories than your energy requirements. If you need to gain then it’s the opposite- but how do you get a baby to gain weight and grow (no matter how high calorie a meal you have lovingly and obsessively prepared) if he just can’t keep it down? When Finn has a cold, probably because of his past lung issues, it goes straight onto his chest, then he has a lasting cough. He seems to have always had a very strong gag reflex and, perhaps, a weak esophageal sphincter. The cough causes him to gag, if it occurs while he’s eating, every single time, the entire meal will come straight back up, all the while the measly 100 grams he may have gained last month to keep him, by the skin of his teeth, tracking that very bottom centile line has already been lost and he’s back to weighing less than he did a month ago. It is absolutely soul destroying. As a mother, nothing makes you feel more satisfied than being able to feed your child wholesome, good quality food and have them enjoy it. How then, do you cope when your child won’t eat, or when they do, however small the amount, it’s all brought back up at every meal time as he vomits? He’s distressed, he’s covered from head to toe, the family meal is ruined, he needs a bath and then all you can think to yourself in the clean up process, obsessing in your panic, is what else can I give him? This is what we’re currently going through and it’s far from the first time and I find it very hard in these moments to stay positive, so while he’s napping, I thought I’d write it down because what else can I do except wake up tomorrow and try all over again?

I want to go back now to my previous post about the challenge of extubation. After, I think, three failed attempts at extubating Finn, when he turned 9 days old on 21st February a heart murmur was detected.

On the 22nd a PDA was confirmed, but at least his feeds went up to 7ml two hourly and both eyes opened for the first time- such is the dichotomy in the day to day life of a premature baby! Patent ductus arteriosus (PDA) is a condition where the ductus arteriosus fails to close after birth which causes left-to-right shunting within the heart from the aorta to the pulmonary artery causing flooding of the pulmonary vessels and therefore difficulty breathing and poor weight gain for the baby. This increases the risk of intraventricular hemorrhage (IVH), bronchopulmonary dysplasia, congestive heart failure, and necrotizing enterocolitis (which, sadly, I’ve mentioned). The PDA explained why we had such an awful time watching our child being resuscitated- as the tube was removed, he plummeted further and further into a state of almost devastating exhaustion with the huge effort and energy requirement of being tiny and breathing for himself anyway let alone the added, serious complication, of a PDA.

This diagnosis resulted in Finn having daily echocardiograms to monitor the blood flow in his heart and eventually the UCLH neonatologists requested the Great Ormond Street Hospital (GOSH) team to visit and perform an echo themselves to decide upon, if any, the interventional strategy we needed to take. For some, a PDA will prevent a baby being able to breathe for themselves, for others, they may manage and then the PDA may spontaneously close as it should have done- stimulated by the increased oxygen from a baby breathing for oneself. Sometimes, however, surgical intervention is necessary. So on day 10, we were left with the possibility edging in of our less than 1kg baby being transferred to GOSH for heart surgery, because without it he would not be able to make further progress. Every day, it seemed like either nothing happened, or there was the dramatic possibility of something dire happening. It actually worked out that on a shift change, another doctor decided to give Finn one last chance at extubation before the final decision was made to transfer him for surgery- this time, he made it off the ventilator! I vividly remember going into the nursery as the extubation had taken place in the early hours of the morning and the tube was not in his mouth, instead, Finn was on CPAP. Unfortunately CPAP, as a machine, looks rather more invasive and actually hides more of your baby’s face but it was huge progress. Continuous positive airway pressure (CPAP) is a form of lesser ventilator, which applies mild air pressure on a continuous basis to keep the airways open in those who are able to breathe spontaneously on their own. I also remember a journal entry shortly after the successful extubation where I had written that it had been 36 hours off the ventilator and the doctors were positive and felt that perhaps the surgery wasn’t going to be necessary after all. It was a small win, but as far as breathing was concerned, Finn still had a way to go and the PDA was still there, threateningly in the background. Something you can do is administer paracetamol or ibuprofen to babies with a PDA but that carries its own risks and contraindications.

The problem is, medically, the more you intervene, the more problems that may develop due to side effects and contraindications- the sicker your baby the higher their medical interventional requirements, the more significant and extensive the contraindications and so you’re left with a mess of a puzzle to figure out and a lot, sadly, comes down to luck. We won this particular battle though, and Finn in breathing terms actually did very well for a 24 weeker. Many premature babies go home on oxygen, Finn did not require any breathing support or oxygen after the age of around 35 weeks gestation, although he was ventilated for surgeries, and required oxygen in recovery and when other things sadly happened to him as he became very sick. After coming home last June, Finn had a ‘fit to fly’ test at Great Ormond Street hospital in the September, he failed it and then it was repeated this past January and he passed, enabling us to go on our first holiday abroad in the spring. The oxygen percentage that we breath in air is 21%, whilst flying that oxygen reduces to 16% which means those with difficulty breathing, or a history of lung disease or other respiratory illnesses are unable to fly, or able to fly but only with an oxygen tank. The requirement is that the oxygen saturation in your blood stream must remain in the high 90s (out of 100)  in order for you to be able to sufficiently breath with reduced oxygen. A desaturation is when your body fails to maintain sufficient saturation and as the body tries to compensate you take faster, shallower breaths  to replenish the depleting supply. Desaturation is obviously serious, especially when it falls really low as this means that your body, your organs, your brain are not receiving sufficient oxygen. When Finn was struggling off the ventilator in the story that I have told, I remember his saturation levels dropping to 40 and his heart rate was not far from it. He failed his first ‘fit to fly’ test and the lowest his saturation dropped to was 87- to give some context to the severity of sats dropping and staying as low as they did that day, even if it was for a short time. So gradually, over time, you can see that the body is remarkable, and things begin to normalise. Finn was born with underdeveloped lungs, he had a haemodynamically significant PDA, he couldn’t make it off the ventilator and then he did, and then his PDA closed and by a year old he was on his first holiday, abroad, in Dubai. Time is a healer, both medically and emotionally- it’s important to remember that.



For the first few days in the NICU I felt comfort and safety in the knowledge that little happened, but upon reflection I realise I didn’t really understand much of what was actually going on. It was naive of me to expect that a baby born, by the Tommy’s definition, ‘extremely preterm’ would have a smooth admission ride with no issues even if that was what I desperately hoped for. I felt that, since he had survived the birth, that was it, he’d made it and now we could watch and wait. An agonising wait it seemed, to get to the point when you felt out of danger, an agonising wait for the something bad to happen. Continually you searched for a conversation with a doctor where they might give you an encouraging smile and assure you that they were not experiencing any problems, but in your desperation you forgot that it was already a problem that he had been born at 24 weeks and there was no possible way any doctor could give you any assurances. Before each post I write I put together relevant sections of Finn’s various discharge summaries and the journal I kept in the first few weeks of his life. When Finn was born, understandably nobody knew how to respond- do you buy a ‘congratulations’, ‘yay’ ‘new baby’ card for a baby the parents might lose? Do you buy a Jellycat bunny or a baby grow or a blanket, or a Diptique candle to offer a tranquil accompaniment to the grieving process, or their rare moments of rest? Or do you, sadly, do nothing? A very dear friend bought me a journal, to write down the daily events, our thoughts and feelings and it was the best idea because it kept me focused- channelling my thoughts through words on a page it gave me something to do every day and something that in the future, like now, I would be able to look back on and read with a renewed mindset and sense of clarity.

Each day the Consultant in charge and his or her entourage performed a ward round. That is, the entire team would visit the cot side of each baby, review and discuss their ongoing care and make a plan for the day. This became our routine, every morning we arrived in time for the ward round having already been to see Finn and scrupulously read every note on his chart. We questioned, and probed, listened and nodded and clung to every word before resuming our day- hands through incubator windows, reading children’s stories, trips three hourly to the expressing room.

To facilitate healthy growth, the job of the team after birth is to challenge your baby. One of the biggest challenges that the team and your baby faces is to breath on one’s own. This process is called extubation (removing the tube), that is, getting your child off the ventilator. You are in a window of comfort with the reliance upon the ventilator, you see your baby’s chest rising and falling and it gives you a warm feeling of normality, the numbers on the screen tell you his sats are good and his resp. rate is normal. But his sats are artificially maintained and the resp. rate isn’t his- it’s the machine. The doctors attempted and failed to extubate Finn 3 times in the first few days of life. I was consoled by the Consultant with the statement it is very difficult to extubate a baby weighing less than a kilo, but the experiences were horrifically upsetting. You wish nothing more than for the extubation to be successful, for you to see your baby’s face without a tube down their throat or up their nose, the removal of each piece of equipment being a step towards normal, the replacement of one thing with another less invasive- progress.

I remember very vividly one specific attempt, a fantastic doctor at UCLH made the decision to extubate, we stood watching as Finn’s sat levels, heart, and respiratory rate started, slowly, to drop, his little abdomen inflating and falling like a weak thin-skinned balloon, his ribs all too visible beneath the surface. She used her index finger to administer chest compressions, the nurse, standing beside her asked with a detectable hint of panic, ‘Do we need more people?’ before pulling the emergency cord for the tube to be put back in place. Failure. Naturally, I was rather hysterical at this point- watching your baby fading before you, desperately but hopelessly clinging onto life was not what I would choose to happen. The doctor who attempted the extubation asked me very directly- what exactly I was upset about? It might sound abrupt and perhaps cold of her but the intention behind it was warm and the conversation that followed actually kickstarted the mindset I would be forced to adopt moving forwards. I told her it was the not knowing, the complete helplessness. She told me that I would have to find the strength to put those feelings to the side because it was impossible to predict an outcome but you have to know what you should and shouldn’t get upset about because what had just happened in that room, it was not bad.  Aside from the obvious, bad would be discovering your baby had had a catastrophic brain bleed, bad would be severe sepsis, bad would be never getting off the ventilator, spending years in hospital and then perhaps, maybe, going home with a child with a tracheotomy. All were possible. She said that so far Finn had done very well, his cranial ultrasounds (brain scans) were normal (although he could still develop a bleed), he was not off the ventilator but then he still weighed far less than 1 kilo…but what we had to hope he did not get, was NEC. Necrotising Enterocolitis is the baby killer.  Quite simply, it is a severe, often fatal infection where the intestines start, inexplicably, to die. Finn got it. This was not, however, until much later when he was around 6 or 7 weeks old so we will get to that. So what the doctor meant was, Finn had many, many challenges to overcome and he was all alone in facing them. I couldn’t collapse into myself, in a pit of despair and hopelessness, we had to just be there, and watch and keep on moving, because whatever was happening for us, it was far, far worse for Finn.

On days less dramatic, to put into perspective how painstakingly slow each day could be, and how delicate these tiny babies are, it was a big deal for us at 2 weeks old for Finn’s feeds to have increased from 1ml- yes 1ml of breast milk through his tube every 4 hours, to 4ml every 2 hours to help him gain weight. It wasn’t until Finn was stable enough at 7 days old that I was finally able to hold him. Skin to skin (Kangaroo Care) is a huge part of preterm care and its benefits are amazing; helping a baby to regulate their body temperature, nurturing the bond between mother and baby, stimulating milk production, pain and stress relief, transfer of good bacteria, improvement in heart and lung function and regulation of blood sugar. It is an amazing experience, it took 4 nurses to manage safely to lift Finn from the incubator, along with all of his equipment and tubes and place him against my chest and then cover him in multiple blankets before keeping an eye on the equipment to ensure he remained stable. Once I held Finn, to maximise the benefits of skin to skin and minimise disruption I would hold him for 2 to 3 hours at a time, simply lay back, with him on my chest- I was elated at the time, sadly though, I could not feel the weight of him against me, only the pressure of the tubing that seemed to just hold him together- skin as fragile as gossamer, skull soft and malleable, his breath not even a whisper.


Patient B

I couldn’t see him. That’s what jumps out the most in my memory of the first moment I walked into Nursery 1 of Intensive Care at University College Hospital. My eyes flicked frantically between the four incubators in the room, each visually holding a baby except Cot 3, Finn’s cot- I couldn’t see him. I couldn’t see him because he was not what I expected to see, no matter how much I had read in the short days on the labour ward on what to expect. He was so, so small that the wires, the tags, the leads, the ventilator, the fabric covering his eyes obscured almost every part of him. I couldn’t see my baby. His skin was dark brown, translucent. He was covered in the most aggressive dark purple bruising from the trauma of the transverse positioning of his delivery. He was skin and bone, not a baby but a foetus. It probably sounds quite shocking for me to say that, but our first moment of seeing our child was so clinical, not the emotional, desperately happy feeling of having your curled up pink newborn passed into your arms, a full head of hair and his Dad’s nose. You are presented with a mouse-like, half formed, miniature idea of a baby full of so much promise to become the former but with so far to go for it to be realised. The volume of equipment was the most daunting realisation of how we may never get there, the sheer number of beeps and alarms. I don’t know what I really felt, numb I think, I was so in shock I remember I think I walked into the NICU barefoot from my room in the Labour Ward across the hall and I was asked by a nurse to put some shoes on, I could hardly cope with dressing myself let alone formulate an emotional response to a baby that of course I loved unconditionally, but in a way I couldn’t quite feel yet because he was there, but unresponsive, not breathing for himself, eyes still fused closed.

And so ‘What now?’ we asked as the nurses explained the rules of the nursery, the meticulous cleanliness, the visiting hours, the phone number so that we could call to see how he was when we went home each night, painfully,  without him. Finn was ventilated, he was on antibiotics, he’d had a cranial ultrasound to check for brain bleeds, he had cannulas, an Umbilical Arterial Catheter (I’ll refer to a form of one of these in future as a ‘long line’) so that they had another point of access and a way that he could be fed intravenously (yes that’s a thing). He was undergoing phototherapy for bruising and jaundice so his eyes were covered to protect them from the light. The Incubator was closed and set at 100% humidity for the purpose of thermoregulation, fluid and electrolyte management as well as maintaining the integrity of the skin (which, of course, is an organ) still yet not fully formed. He had TC rings stuck to his legs to measure the CO2 percentage in his blood stream and therefore, along with blood gases, help accurately calculate his oxygen requirement to maintain his saturation level. We had no idea of course, at the time, what any of this was or what any of it meant but it became our every day, managing life support, mitigating risk, waiting for him to grow. There was a duality to the sound of the constant beeping of the equipment. On the one hand you were familiar with its sound but a change in pitch or tone or frequency and your stomach tensed once more as the nurses flitted between machines with an uncomfortable casualness- it was their daily routine.

There was a long time when in the gravity of what has happened to us I felt anger in every day even long after Finn came home, but I am starting to feel at peace with what has happened, and take pleasure now, in the everyday, in the ordinary. Ordinariness is a luxury you never realise you have until you’re firmly thrust into the opposite and as Finn turned one corrected last Sunday, he is so happy, so full of energy, thriving, I feel that I am starting to enjoy life again. It’s important to admit to my anger,  I feel, not that I would put myself necessarily in the bracket of having suffered from postnatal depression, but certainly, quite possibly from post-traumatic stress. You see Finn’s ‘NICU journey’ as they call it was not one of the longest but it was, in contrast, one of the most dramatic. To talk timescales, having a baby as early as almost physically possible we were told that term is approximately when most babies tend to go home. Obviously the earlier the baby the further away from term, the longer your hospital stay. For a 24 weeker, if they go home at all, it is far less likely to happen at term because the earlier a baby is born, the higher the risk of complications and sickness. What I didn’t understand at the time was that having a timescale in mind, was both pointless and cruel. With a premature baby you can’t fixate on a home date, you can’t think about the future at all because every day you go into that hospital, you don’t know whether your baby will make it the next few hours, the next few days, because they are so frail, so vulnerable, that their condition can change dramatically in no time at all. I wasn’t angry that it happened to us and not somebody else, there are many far far worse off, but the anger lies, I realise now, in the complete powerlessness. You have no choice but to be strong, to face what is in front of you that day and make decisions to move forward, and wait- read a bed time story through the incubator so that he can hear a familiar voice, cup his miniature body in the palms of your hands through two perspex doors.

It’s not right that days after giving birth, I’d leave our little sanctuary of a garden flat, walk up Hampstead High Street (past a thousand mums and babies), take the lift down and ride those few stops on the Northern Line to Warren Street. I remember sitting opposite a lady who was pregnant, or looking at the sign to give up one’s seat for pregnant ladies or those less able to stand, and having a sudden gut wrenching reminder – I was no longer carrying our baby, I no longer qualified. Worse still was not only the knowledge of my empty womb, my still-raw stitches, the stark normality of a journey on the tube, my engorged breasts (heavy with milk coming in) but my sickeningly empty flat. The complete lack of anything in our home for our child, no sign that we had even had a baby. We had not even got to the point of ordering a Moses basket, or decorating the nursery or discussing names for that fact… and so every lonely evening when we came home together, we came home, together as two, just the same as before, except not the same, a huge gulf lay in the very absence of what should be there with us.

“You got wires, goin’ in
You got wires, comin’ out of your skin
You got tears
Making tracks
I got tears
That are scared of the facts.”  

Athlete  ‘Wires’ 2005