Lotta and her parents are from Germany. Due to her prematurity she was tube fed since birth. In February 2016, at the age of six months, her family decided to attend the Netcoaching program. In addition, they decided to participate in an Eating School in Graz to help their daughter getting finally rid of her feeding tube. Lotta made great progress, she learned to accept pureed food and liquids orally and to swallow food/drinks safely. Her tube could be removed in September 2016 once and for all! Lotta is able to sustain her nutritional needs fully orally ever since and enjoys her tube free life.
From the parents
Translated from German
What was your life like before you decided to sign-up for one of NoTube’s programs?
Daily life was always quite chaotic. We knew, that Lotta wanted to eat and that she would learn it, but we couldn’t find the right way to support her learning. We were constantly searching for a solution… G tube? New speech and language therapist? Are we capable of going all the way to Graz?
Due to the nasogastric tube, Lotta had great problems in swallowing her saliva. Therefore, breathing was difficult. She hated her tube and pulled it out frequently. So we had to watch her closely, always having a new tube and supplies ready, begging doctors and health insurance for their help.
Constant weighing, how long can the tube stay out? How much food can she tolerate? Sometimes we had to put in the tube a few times a day, besides that, we offered puree. Sometimes we couldn’t leave the house for days as breathing was so hard for Lotta because of the tube. Our whole daily life was dominated by the tube.
What were some of your most memorable experiences during the program?
Oh, there were so many wonderful moments.
Did you feel that your child received good care during the program and was NoTube’s staff attentive to your concerns?
When we came to Graz, we had already completed a few months of Netcoaching. The close exchange was encouraging for us, although Lotta did not make the progress we wished for. So, after careful evaluation, we went to Graz. When we arrived, Lotta was not considered as an “all will go well”-candidate, it was uncertain if she would be able to eat and drink after the two weeks. But as soon as we got there, after talking to the therapists and doctors, they could see Lotta and we felt in good hands. I could just get rid of my worries and care for Lotta. There was a positive atmosphere – no reproaches, no fuelling of unjustified fears, no “we don’t know if this will work” as we knew it from home. So much appreciation and real devotion. And encouragement.
One could burst out crying or start giggling, someone always took part.
The contact to the other families also made us feel good.
How has your life changed since you participated in the program?
Lotta is very happy since she got rid off her feeding tube.
Sie is much more confident and calm.
Now, we can go out. We can visit dad at work, friends, hang out with other kids, dance together while she is in the baby sling, go to the café, drive with a car or bicycling,…enjoy the beautiful little things in life.
… and on street, there are no pitiful smiles anymore. It sounds trivial, but it is a huge relief.
What’s the most awesome thing that has happened with your little one since completing the program?
Our wedding.It already was really exciting and a special day, but when we sat at our wedding table and fed Lotta orally and did not need to tube feed her anymore, all our relatives and friends were totally happy.