From gastro-tube to gastro-nomy

I love to eat! The taste of food in my mouth gives me such a feeling of satisfaction, I can hardly describe it with words. If my parents didn’t stop me from time to time, I would eat all day. But truth be told… it hasn’t always been that way. As a matter of fact, I have come a very, very long way when it comes to eating. Stick around, cause here is the story of my feeding journey.

People say, the most important thing a baby can get just when it is born, is the very first breast milk that its mother provides. They claim it contains all sorts of vitamins and good stuff that you need as a baby to begin your journey into life and growing up all together. Well, as much as my parents wanted me to have this, I didn’t get it! I stand corrected… they tried to give it to me but it came right back out.

As a newborn baby, weighing 3,3 kilograms, after a 9 months, perfectly normal, pregnancy, the first signs were not ok. I came out with, what in medical terms they relate to as, ‘a failure to thrive’. Which basically means I didn’t do much. I didn’t cry, I didn’t kick my feet, I didn’t throw around my arms wondering what this strange thing called gravity was and didn’t suck for milk either. I just laid there, perfectly still. My heart was beating, my lungs filled with air and deflated again so I could breathe, all the rest worked as it should… but I just didn’t feel like doing much. It took the doctors a couple of hours to figure out they didn’t really know what to do with me at the local hospital, so they decided to put me in an ambulance and rushed me over to a more specialised neonatal hospital facility a hundred kilometers away. My parents, mom had just been giving birth to me 3 hours earlier and had to be stitched up, had to take their own car and where explicitly forbidden to “follow the ambulance” – which they completely ignored.

When we got there, they put me into a plastic box, which was nice and warm but kind of small for a baby my size. They hooked me up with wires and stuck needles into me and there I was… four hours into the world and time stood still. Very still. As my parents stood above me they tried to suppress their tears. I was thinking “what’s wrong guys, I’m ok… don’t worry about me… I just don’t feel like doing much… but don’t you worry”.

Jerom in the neonatal hospital of Jette near Brussels (1 day old)

As the hours became days, I had to get some food into my stomach. As I didn’t have the sucking reflex, breastfeeding or bottle feeding where not an option. I couldn’t stay on intravenous glucose bags day and night, so the doctors stuck a tube up my nose all the way down into my stomach and they fed me formula milk which they put in a small pump that ran on a timer. Luckily the rest of my system worked fine so the food eventually found its way into my system and once digested, came out the normal way. Lucky break on that one. 

But mom didn’t leave it at that – although I was getting my milk via the nasal tube, she tried giving me the bottle. Day after day she sat in a chair for hours with my on her arm and the bottle in her hand. I didn’t do much with it, but that didn’t stop her from trying.

Days became weeks and the doctors performed test after test, MRI’s, EEG, CT-Scans, Echography, DNA test, endocrinology test, I ran through all of them those first weeks. Test after test but they just could pinpoint what was wrong with me. But most importantly I was eating via a tube and finally gaining some weight again. After almost a month in the neonatal hospital I was sent back to the local hospital in an ambulance again with my nasal tube and pump beside me.

Weeks went by and my mom kept up her incredible courage to try feeding my with the bottle. I still didn’t suck at it but by gently pumping the bottle I got some some milk in the normal way. Timing was everything as mom had to prevent me from taking the milk in on an inhale as that could cause me to breathe in milk and that could give me a nasty lung infection.

Mom trying to feed me with the bottle (4 days old)
Mom trying to feed me the bottle (29 days old)

I was 4 months old when I was finally allowed to leave the hospital. I had been home before that but after two days at home my parents had to bring me back in as I was getting to weak again. They also had to take me to a different hospital for some weeks as they changed the nasal tube into to a real gastric-tube. That is the kind where they give you a second naval to put a tube straight into your stomach. That was my first surgery by the way. And all that time, my mom continued to give me the bottle on the side. 

Every single day for hours on end. Until one day, I started to get the hang of it. Sucking… it finally started to dawn on me how I had to do that. Little by little I got better at it. First 10 ml, then 15, 25, 50 all the way to 200ml. My parents were super excited and I enjoyed the attention. I kept the gastric-tube for night feeding only but during the day, I was able to drink a normal bottle of formula milk in less than an hour. Hurray for me!

Then when I was about 6 months old the yogurt came… my mom started feeding me this strange substance that was cold and sticky. Although at first it were just tiny little spoons of this stuff in my mouth and I hated it. I spit it out as quickly as it came in. I couldn’t help it, my vomiting reflex was all the way in the front of my mouth so everything that was put in had to come back out. So mom practiced with me using a spoon with nothing on it. Sticking it in my mouth until I sort of got used to is. Further and further, still trying the real stuff to but that didn’t go down as well. Sometimes she would take more than an hour to get one small pot of 50 gram fed to me and I would give it all back in seconds. Did I mention I had a nasty case of reflux at the time? But mom fought me, in order to fight ‘for’ me. Every single day she fed me yogurt. She tried all sorts of other new stuff too, like fruit mixes and then after a couple of months warm blended food. With each change in substance, she had to start from scratch with me. But her faith in me never dwindled. “Jerom, you need to eat so that you can become big and strong one day and get rid of the gastric-tube.”

Jerom eating a spoonful of yogurt at age 3

Although I’m still not handling the spoon myself today, I love to eat all sorts of things. Mom still experiments new things on me from time to time and I still need to figure out why you grown-ups like the taste of mustard for instance, that stuff is just plain nasty! But I’ll have fish, meat, mashed potatoes, rice, pasta (even gnocchi’s) an every kind of vegetable there is now. I still prefer it blended or mixed and please don’t forget to season the food with fresh herbs. Oh and gravy… I absolutely love gravy! Doesn’t everybody?

I learned to eat yogurt and hot blended food and fruit mix. I learned the joy of lemonade and orange juice but I’m still not to fond of milk though. So in september of 2008, almost 5 years after I saw first light, the gastric-tube was finally and definitely removed from my stomach and I was eating.

That’s it for this week you all, thank you for reading my story, I’m gone go now as mom told me lunch is ready and man, am I hungry!

Geef een reactie

Het e-mailadres wordt niet gepubliceerd. Vereiste velden zijn gemarkeerd met *

Deze site gebruikt Akismet om spam te verminderen. Bekijk hoe je reactie-gegevens worden verwerkt.