I love food,
bacon sarnies,
muesli and yogurt,
fresh bread and butter,
marmite,
over the top salads,
fish and chips,
meats,
egg pie,
soup,
Sunday roasts,
veggies,
chilli and rice,
curry,
pastry,
fruit bread,
and a good homemade seasonal crumble with lashings of cream.
Just thinking about all these glorious foods is making me feel a little peckish.
In 2018 I acquired a new lease of life for food.
In the form of weaning Billy.
Like most things in life, it’s nice to share your love with another and Billy didn’t disappoint on enthusiasm.
Over the next few months we spent hours researching, cooking, and tasting many new foods together.
Somehow, we created a rolling buffet where one meal rolled into another.
Often our living space looked like a banquet hall with plates of food scattered everywhere.
Billy would often stop at the plates and indulge on a tasty bite before carrying on with the task at hand.
This baby led weaning approach was incredibly messy but satisfying on the senses.
You couldn’t help but smile at the live art work that Billy had painted all over his own naked body.
Throughout this period, Billy lived in a nappy and would often have multiple baths a day to remove the murals he had created.
This free-spirited approach, promoted fun within this otherwise dull existence.
Billy was 9 months old when the hospital deemed it was safe enough for him to start weaning.
The delay was caused by Billy being small and his neck being weak.
Billy’s growth had been impacted by his liver condition.
By having Biliary Atresia, meant he was at high risk of becoming malnutrition.
Which is hard to comprehend, when you have watched him devour a days’ worth of milk, 3 meals and snacks.
But instead of the scales going up, they move down.
Billy’s little body was struggling to break down and absorb fats, then convert food into fuel, which in turn made it hard to consume the required number of calories per day.
In Billy’s case we never experienced a poor intake, but I do know this is a common factor within Biliary Atresia children.
In the first year of Billy’s life nutrition consumed all the medical team at Southampton.
As a team we all believed that good nutrition would aid Billy to fight the daily infections and then be fit enough to met his final challenge, the transplant.
If Billy had nothing in the tank, the transplant battle may have been lost or even not considered.
A devasting thought that I’m glad didn’t become a reality for us.
A long side Billy’s broken digestive system, he gained ascites.
In simple terms, this is a build-up of fluid in the abdominal cavity that leads to swelling of the tummy.
This puts great strain on the body as there is limited space for the organs to move, which makes certain body positions uncomfortable to be in.
Also, the sheer weight and size of the ascites would often make him unbalanced, which in turn made it hard for him to sit unassisted
We found his happiest position was propped up with pillows to support him on both sides and one behind his back so he could lean backwards to reduce the pressure on his tummy against his legs.
Or alternatively just lying down on his back or side gave him great comfort.
At times it was hard to find a comfortable position or intervene effectively with medical treatments to be able to stop Billy from having breathing difficulties and chronic pain.
By making Billy comfortable this meant his gross motor skills became delayed.
Which affected his neck strength, which is a key component within eating solid foods.
Over this first year, Billy’s methods of food intake varied.
When Billy was diagnosed, he was changed from oral breast milk onto specialist formula milk.
This specialist milk was already partially processed to help Billy absorb and gain the nutrition easier.
The down side of this formula milk was it smelt and tasted like curdled milk.
For Billy this smell took hold of his skin and stayed with him until this milk was stopped.
When oral feeds had limited impact on Billy’s weight, it was agreed with a lot of debate that nasogastric (NG) tube feeds would be tried.
Billy had a narrow feeding tube inserted from his nose to his stomach.
But sadly, this bought an end to Billy tasting food.
First, Billy had 5 bolus feeds a day, this method uses gravity to allow the flow of milk to get into the stomach over a short period of time.
Even that this option was perceived to be better, Billy was often sick
So, we went back to the drawing board and decided to try combining the NG tube and a feeding pump.
This allowed the milk to be given slowly over several hours and could be adjusted easily when Billy deteriorated.
This method helps the digestive system to process food more successfully as there is less stress on the system the slower it goes.
As Billy’s condition deteriorated the feeding time became longer to the point he was feeding for 20 hours a day.
This feeding pump became an extension of Billy which meant we all had to learn to accommodate it.
In the early days, it was often forgotten and the once fluent movement turned into a tangled-up mess.
The adjustment was painful but no one wanted Billy to suffer due to our incompetence, so we persisted.
Even with perfection mistakes still occurred, manly frequent tube pulls, which ended in pain for Billy or the NG tube becoming dislodged out of place.
Also, at times Billy would help with this process and enthusiastically play with his NG tube which also had catastrophic results.
Looking back, I’m not quite sure if the line being dislodged or the reinsertion was more traumatic, either way it meant the day was written off and Billy was pushed to breaking point.
After much distress for Billy, it was agreed that a nasal bridle would be inserted.
This device is a secondary cord that can be attached on to the NG tube to secure it in place.
The cord was passed up and back down both sides of Billy’s nasal cavities and linked together just below the central exist of his nose.
Not pretty, but affective.
This made it nearly physically impossible to remove, but damage can still occur.
On one summer day in 2018 when Billy and I were on day release from hospital.
We decided to cuddle up on a garden chair.
As we moved from the garden chair, there was a little downward resistance.
As this feeling was unnatural, I continue to push against it until I heard the screams coming from Billy.
As I looked and moved downward simultaneously, it registered.
The end of the NG tube was caught in the legs of the chair.
Before I could react, the stretch of the tube eased and pinged upwards into Billy’s mouth.
Instantly blood poured out all over us.
Both in tears, we made a move towards the hospital for assistances.
Apart from the inner guilt, we both survived.
Another lesson learnt and felt, before it was time for Billy’s final move to Total Parenteral Nutrition (TPN).
This nifty food source are given directly into a vein.
The concept of the TPN feed is to bypass the digestive system, which eliminates the broken system that is struggling to process food and absorb vital nutrients.
In Billy’s case the TPN was delivered down a central line, but there are other choices that would work.
For Billy, these feeds were given overnight due to the complexity of the equipment and the restraint it puts on the patient’s mobility.
So, every night just before bed a select number of nurses would come and hang the TPN feed.
Billy loved when Kevin was on duty as he would read the prescription in an enthusiastic voice like he was telling him a bed time story.
In between typing it into the machine he would look at Billy and make animated facial expressions.
Billy would laugh out loud and was mesmerized by his performance.
To many this gesture may seem trivial but to us it lightened our day.
When Billy was being weaned at 9 months old, he was still on TPN feeds for nutritional purposes.
The solid foods were introduced primarily for enjoyment and developmental reasons.
This combination continued to transplant at 11 months old.
After transplant a simultaneous act happened, the TPN feeds ceased and was taken over by NG feeds and solid foods.
This change reduces the strain on the new liver.
As Billy become stronger, the NG feeds became less and food took over.
Which pleased Billy and I no end.
I often contemplated if Billy was affected by this unusual start with food?
On observation I feel it has given Billy certain quirks.
Firstly, on occasions he over indulges.
To the point his eyes are bigger than his tummy.
Often this process is undetected by the big people around him, due to him still being a grazer by nature.
It’s quite surprising how quickly small items add up to a tummy extending amount.
But when I think ‘why would he put himself through this?,’ the answer is clear.
‘Nil by mouth’ or in other words ‘starvation’.
And for Billy he had a high number of these, I can recall one week when he had 5 sedations.
Every day was like Groundhog Day, getting up in the middle of the night to set feeds up, hoping these would be enough to suffice the hunger pains.
Not a fun game with a child that loves food.
Also, Billy was a little to cute for this game.
When Billy was around 10 months old, he decided to enrol the help of a friend.
A junior nurse.
Apparently with a little signing and a lot of pointing, he managed to communicate enough to get this poor bystander to pass him his lunch box.
Billy was very chuffed with himself when I returned from the bathroom, he had managed to take a mouthful of wafer.
After a little giggle, a quick removal of the food, a very apologetic junior nurse and a quick chat with the anaesthetist team, the procedure continued.
Nowadays, Billy’s cognitive understanding has matured and we often talk about the kitchen is always open and reassure him that we will notify him of any procedures.
But still, at times Billy will over eat.
Sometimes with catastrophic consequences, but thank God it is short lived.
I have found my job is to love, reassure and explore.
Not scold, a behaviour that could possibly be a safety mechanism that has become second nature.
His second little quirk is eating savoury and sweet together.
Not just on the same plate put as an integrated dish.
For example: –
Pasta, tomato sauce with cereal sprinkled on top
Ham and jam sandwiches
Tortilla chips crumbled into a yogurt
Jam on the side of a cottage pie like a condiment
Pancakes, tortilla chips and jam
Raw cabbage, orange, and pancakes
Beans, sausage, orange, and banana
Rice crispies, prawns and salad
Bread and butter with a side helping of chocolate buttons
Cocktail sausages, jelly, and fruit
This maybe a logical step within being weaned, but for Billy this has become a long-term preference.
To the point, these requests are not exclusive to our family home.
Often on a day out, Billy will ask for his pudding and his main course to come out together.
Or go rogue and ask for a combination that doesn’t present itself on the menu.
Often Billy’s bizarre choices leave the serving staff speechless.
Maybe his destined for great things like Heston Blumenthal.
As I mull this over, I start to realise that hospital dinners look very similar to Billy’s requests.
Admittedly, the food comes on separate plates, but they do come out all at the same time.
As many would eat them separately and in a logical order.
Billy had no knowledge of such etiquette and I didn’t enforce them.
So maybe also these have been an impression from his environment
A norm within this setting.
Nothing strange, just classic hospital dining.
So maybe he is a product of his young environment, his first home.
Or, maybe the quirk lays with me?
As I read back and consolidate these memories it has brought up a bunch of mixed emotions.
Some known and some I’ve never felt before.
It’s surprising what supressed emotions you can hide unintentionally.
For me, this first year was soul destroying.
Not because of Billy’s Illness, but due to the simple acts of motherhood being denied.
The trivial acts of daily life you don’t show value to or give any importances to, became my hole.
Which dampened the hope and happiness that had been created by bringing a new life into the world.
It slowly removed the essence of my personality and created an institutionalised human being.
Who was totally absorbed by the daily chores of looking after a sick child, which gave little time to think or feel the emotions within.
This robotic motion took over, but at times my former self would spill out into this world displaying the pent-up emotions that was eating me up inside.
The spills lack control and became a turmoil of emotions and hatred for myself.
Over time I started to realise that there is no way of removing denied.
Due to the chronically ill being fragile and life needing to be preserved.
It’s never simple when it is essential.
But I have learnt, I needed people to understand me.
By communicating the inner feelings that where inside me.
Even that it didn’t change anything physically, it helped me stabilise the spills and give the people around me an idea of the trauma that was bubbling up inside me.
In other words, don’t down play the feeling, just own it.
In my case, it was hard but essential.
Remember you may not feel strong but you are
Love
The Rose-Tinted Mum
The Rose Tinted mum 