No tube? NoTube!

Why Nova did not want to learn to eat and how we solved this

Before Nova was born (and some time after), I assumed that the association “eating=defeating hunger” is congenital. Just like sleeping or defecating. Logic.

But that is not how it is. When babies are born fully developed, it usually takes a few days before their oral intake of food is satisfyingly high. Either through nursing or bottle-feeding. In the optimum case, during this period the mother’s milk production starts and during this time also a weight loss of about 10% of the baby is tolerated and even expected.

Nova, who was born in week 41, received a nasogastric tube a few hours after birth, out of reasons that I until today do not fully understand. A nasogastric tube is a very thin tube that is placed through one nostril down the esophagus into the stomach. The tube sits there permanently and the end, that is on the outside and about 30 cm long, has a lock. That is where one can attach a syringe filled with liquid diet and feed directly into the stomach. And that is what we did. I was in a state of emergency and did not question what we were told to do by the neonatology department: I pumped my milk and fed it to Nova via the tube. From day one, Nova always has been well-fed. She never learned to feel hunger and definitely not, what to do about it.

After we’ve come home, we wanted to get rid of the tube of course and I was told, that I had to get  a certain amount of food orally into Nova, otherwise I was not allowed to remove the tube. So I started to sit with her on the sofa up to ten hours per day, pressing the bottle on her. Incessantly. She did not fight it really but she swallowed a huge amount of air and it took ages to feed her. The comment of the medical staff here in Sweden: She does not have the right technique.

Somehow, with a lot of effort, we got the requested amount into her orally and after 2 weeks we removed the tube. So, the next 4 months went by with continuous pumping and feeding. From week 6 of Nova’s life, I made an excel sheet where I registered every feeding. Every SINGLE ONE.

When Nova was 4 months old, she suffered from an infection of the upper airways and her nose was so blocked, that she refused to take the bottle completely. We drove to the emergency room, where they placed a nasogastric tube again. Without any explanation that it was indispensable to continue offering the bottle. I was just glad, that I could get nutrition into her the “easy” and fast way. After a while, I offered her a bottle again, but she utterly refused to take it and she never has accepted it since. The weeks went by, Nova turned 6 months old, I tube-fed her and offered 3 times per day puree or mash, which she never ever touched. This was also a period of nearly daily, violent and cascade-like vomiting, sometimes Nova was screaming while throwing up like crazy. After those attacks, we refilled the syringe, refilled Nova and hoped, she would keep it this time. It was a seriously stressful time.

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With time it became clear, that a so called Percutaneous Endoscopic Gastrostomy, or short G-tube, would be necessary. This is a kind of outlet, that sits on the outside of the upper tummy and has a connecting tube into the stomach. On the inside there is a small balloon, that gets filled with water from the outside and in this way keeps the G-tube in position. The G-tube needs to be replaced every 4 months, the water in the balloon every 2 weeks. On the outside a tube can be attached and in this way nutrition or medicine can be supplied.

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Nova received that G-tube when she was 8 months old. Dieticians and doctors assured me, that Nova would start eating as soon as “the uncomfortable feeling in the throat from the nasogastric tube” had disappeared. That sounded logic, again.

The following 2,5 months I spent 3 times 1 hour per day by the dining table with Nova and offered her food. Nothing. Sometimes she would dip her lips into some puree, but she would not swallow a single drop of water or any food. That is why I tube-fed her 5 times per day 120-150 ml of a special tube-formula. Someday I lost the patience and started to ask professor Google for advice and slowly but surely I came to the conclusion that Nova has become tube-dependent. Tube-dependency is defined as a refusal of oral food intake in tube-fed children due to the lack of hunger. Logic again: If I get constantly filled up with high calorie formula, I won’t be hungry, right? So, what now?

After a little more Google, I stumbled upon NoTube.

NoTube is a medical team, that is specialized on children with early childhood eating disorders and particularly tube-dependent children. NoTube is worldwide leading concerning the success rates, which are over 90%. During the last 25 years, over 3000 children from all over the world could be helped. And the best thing: The team is based in Austria (where I originally am from), the method was developed at the Childrens Universityclinics in Graz – I did not need to know more, I was ready instantly. The immense frustration over Nova’s lack of interest in food and at the same time the total helplessness of the Swedish health care system, had nearly driven me mad. Even though I had shouted out for help several times (through emails, phone calls, visits), hardly anybody wanted to listen to me, let alone knew what to do. The doctors reckoned, that she would start eating eventually, most of them start around the age of 4 or 5 years, they told me. I was so perplexed and angry, I even started to show symptoms of stress, like palpitations and tinnitus. But just then I found out about NoTube (notube.com) and after the first contact and a little bit of persuasion of Linus, we knew: we want to work with these guys. Nova’s team here in Sweden was not convinced, but advised strongly against it.

What is also unique with NoTube, is the kind of help one gets from them: The netcoaching program (there are different programs, but that is the one that we chose) is a form of telemedical treatment. That means that one is in touch with the specialists 24/7 through a so called ticketsystem (a kind of mixture between a chat and email). Everything happens on the internet, you do not have to leave the house during the whole weaning. After detailed introductory talks (also via skype), sending in medical records (diagnoses, treatments etc.) and uploading of videos that showed Nova during the food-sessions, we started. The principle is to reduce tube-feedings quite drastically within a few days down to zero. This is supervised permanently by the team and they also give the orders. Eventually hunger kicks in and then it becomes laborious: the kids do not have a clue what they should do about this uncomfortable feeling in their belly. We were told to offer food always and everywhere, we should place chocolate, chips, Salami, sausages, sweets, soft drinks, ketchup, french fries, literally everything, that should be “forbidden” in that age, everywhere in the house. I was shocked. But after a short discussion with the medical team, that consists of  pediatricians, psychologists, dieticians, physiotherapists, etc., we did exactly as they said. Nova was exactly one year old then.

2 weeks without any considerable ingestion passed by. Nova stuffed a lot of chips into her mouth, but spit out out everything in crumbles. She drank water quite from the beginning, that part went really quick. The lack of calories leads to a big amount of frustration in the kids and it is not easy a as a parent to watch this. The worst is the weight loss. Nova has always been so small, and now another 10% weight down? Phew.

And then, suddenly, one day I come back to the living room and everything is gone, all the chips have disappeared. First I suspected Emil, her big brother, then even our cat, but no, it was Nova! She had actually eaten 5 chips!

After that it went really good. Nova was eating and eating and eating – for about 4 weeks. She nearly reached her weight from before the weaning, but then it became tough again. She ate without much joy, just enough to keep her weight. And that is also normal, it takes about 4 to 6 months after the wean until the kids are stable and start gaining weight again. Unfortunately the big hip surgery got in the way. Because it was important for Nova to recover the best possible way, we decided together with the NoTube-team to go back to full tube-feeding again. That was a good decision, it took away from us the stress and gave Nova the chance to get through this tough phase well. Of course she stopped eating nearly immediately. So we had to wean her again after the cast had been removed, but this time it went faster as Nova had learned to defeat hunger before.

Nova was tube-fed for the very last time on 28th of February 2015. Ever since she has been eating, only the medicine is supplied via the G-tube in the evenings. Right now Nova is trying to find out, if meat is something worth eating, she is not convinced yet 😉 We do not know yet, when we can remove the G-tube.

Right now I am also trying to get back the money, that the weaning had cost us (we financed it ourselves), from the Swedish health insurance. I have been fighting with the insurance company and the administrative court for 16 months now, to get the compensation. Just a few days ago I received a letter from the administrative court that the reasons, on basis of which the insurance did not want to compensate us, do not exist and now the insurance needs to make a new decision. We will see what happens next.

The team of NoTube is worldwide uniquely specialized, perceptive, extremely experienced, empathic and has changed our life. I have learned so much and I am so thrilled, that I offered my cooperation and have become the ambassador of NoTube in Sweden. I try to help Swedish families to get in contact with NoTube and I am one of the admins of the swedish Facebook-group. I am convinced that there are many families in Sweden and other countries that could be helped by NoTube. The problem of children with “early childhood eating disorders” is quickly getting bigger, increasingly more children, even such without any other condition, receive a G-tube. I want to help more families to get back to a more normal life, as life with a tube-dependent child is not funny. All that was written above, does of course not apply for children who have the G-tube of medical reasons. But that is just a fraction of those kids that run around with a G-tube today.

Wow, that was a really long posting and if you made it so far, I have to congratulate you. But it was important for me to describe in detail what has happened to us.

For more reading: www.notube.com/testimonial/meet-nova

I need to go now and prepare food for the kids 😉

 

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