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.