We started tube-weaning Jansen since 1st December this year and oh my the journey is tougher than I thought it is.
(If you want to know more about what happened to Jansen, my 2nd son, I posted about it on my 1st blog on Steemit. Well, he is also one of the reasons I started here in this amazing community)
This is how being tube-fed looks like. Food must be smooth in blended form and being pushed in by syringe into the tube then to stomach
He is tube-fed since birth till now learning to eat. Picture for cuteness and cheekiness
Basically feeding-tube-wean means we stop feeding him via tube for one or few meals and encourage him to eat from mouth. However it is not as easy as "Jansen, today we don't feed you from tube so you eat from mouth" and then you magically see him just take the spoon and eat from mouth onnomnom.
Children like him have never been trained (or they don't have the chance) to eat from mouth due to medical reasons. And when it is about to wean them, it can be challenging if they are of older age with willpower and ability to say "No" plus smart enough to negotiate with you. Also they have never been really using their jaw, mouth, cheek, throat and esophagus muscle. Not only that, there must be reasons why they are tube-fed in the first place so most of them have some past experience that caused oral aversion. For example, many are NG-tube-fed (meaning tube being inserted from nose to stomach) which is certainly uncomfortable, some have to be suctioned (suction tube being inserted from nose to the inner airway near lungs and followed by inserting tube into mouth to the back of throat to suck out phlegm or secretion) daily once a day or 2-4 times a day, some has severe reflux which worsen their appetite, and due to severe reflux, most of the children would have gone through fundoplication surgery to tighten their stomach making them not able to burp hence cause tremendous discomfort and bloatedness after feed. All these might have been brain-programming the child that eat/food/mouth equals pain/suffering.
So our tube-weaning journey is appetite-based, with trust and joy, and hopefully to reboot his mindset towards eating; that eating and food means pleasure and comfort, provided he is medically safe to eat. We started to take out his lunch's tube-feed for few days to see whether was he hungry. We set the table with food in front of him and let him decide whether to eat or not, and how much to eat or not at all. Also preferably no bribe, cajole or threat to eat, which I confessed on some occasion I failed and I did soft-threaten him abit. Repented and restarted the correct way!
Hmmm...nope! No sign of hunger from Jansen. Only wanted to play whole day (someone tell me where does his energy come from with no food?!!!). So I took the step of faith (with alot of crying out to God and surrender worry to Him) to take out his breakfast tube-feed also. Every single day from Day 1 till Day 13, he didn't show interest at all to eat breakfast and ate few tiny mouthfuls of his lunch AND THEN didn't swallow but kept the food in the mouth first at the cheek. The rest of his meals which are at 3pm, 7pm, 10pm, 2am and 5am, we still tube-feed so that he has some calorie and nutrients for growth.
His tiny mouthful is really super tiny
Few tiny mouse-bite of yogurt pancake and he could call it a day.
Another day, took 2 bites of the sandwich, licked the jam and said "I am done!"
The best so far. Alot more mouthfuls of pumpkin soup
Not bad, able to self-feed the pasta and looked pro. So far he could cope 4 mouthfuls then will whine about some discomfort inside.
The pumpkin soup & pasta before being offered to Jansen by his grandma.
So chubby right? Nope, it is not. It was him keeping food at both inner cheeks.
On Day 14, I decided to further cut down his tube-feed to see whether would it help to promote his hunger. We took away his 5am overnight feed. But still not much difference as far as his appetite is concerned. Day 19, we did something extraordinary to bring him out for lunch while celebrating daddy's birthday. Not only did he have a chance to go out (we minimise his exposure outside and totally avoid crowded shopping mall to prevent infection while his lung is still growing), he had a chance to see the hotel's buffet's food spread with so many selection of food although he just ate a little bit of pumpkin soup, rice, ice-cream and watermelon.
Jansen and his last food at the hotel - watermelon
Enjoying himself doing other stuff than enjoying eating. Anyway see him happy is a bliss
And the rest of us family enjoyed our food to the max
With his brother and his cousin
The tall Christmas tree at the hotel's lobby
(If you are interested in the food spread of the hotel, please feel free to drop by 
Today is Day 20 and Jansen does eat through mouth but not enough for him. He definitely has lost some weight and mummy is worry and constantly need to focus on God for hope and faith and joy. Tomorrow we will further take away his 2am overnight feed so that his stomach gets to feel empty for more hours.
Till then, we will take a day at a time at home. And praying hopefully he will feel the hunger soon, and able to verbalize out his feeling, then associate hunger with food AND lastly enjoy eating without discomfort or complication.
Thank you for reading and support. Have a great blissful day! 😍