Colombe, her parents and her sisters live in France. She was born with a genetic syndrom and cardiopathy which required two open-heart surgeries. Colombe was fed by nasogastric tube, she suffered from the tube feeding, vomited frequently. At the age of seven months, Colombe was signed up for the Netcoaching tube weaning program. Colombe started to drink from a bottle, the vomiting subsided. In September 2015, Colombe’s nasogastric tube has been removed, she is sustaining herself orally ever since.
From the parents
Translated from french
What was your life like before you decided to sign-up for one of NoTube’s programs?
Before we started the program, we had two open-heart surgeries within five months. For each surgery we had to go to hospital, the procedures were very complicated. Colombe was tube fed 20hours/day, she vomited a lot. Regularly, mainly at nighttime, Colombe gagged and vomited her tube, therefore we had to replace it quite often. We needed to get up during the night: Vomiting, which interrupted the tube feeding, clogging of the tube,… I am not even able to list all the reasons.
What were some of your most memorable experiences during the program?
- Colombe covered in chocolate, to bathe her after her meals three times a day
- The whole family participating in feeding Colombe. Even her two big sisters were so proud to show her how to eat.
- When I removed the tube and threw it away.. I did not dare to believe it, but I was full of hope.
- The lovely messages from the Team, always full of trust and encouragement. They were always positive and gave us hope when we we desperate.
Did you feel that your child received good care during the program and was NoTube’s staff attentive to your concerns?
Yes, at all times. They answered all our questions. At the beginning it was hard to trust a new Team which we have never seen. Colombe couldn’t eat anything and we were exhausted after a stressful year we had gone through.
How has your life changed since you participated in the program?
Colombe eats! She drinks her bottle. She doesn’t eat that much yet and still vomits when she is ill, but she keeps her weight stable, it is great. We know how to deal with different situations.
Since some days we are able to sleep at night! (Before we had to get up as Colombe was hungry)…Even when the day starts at 4am, it is such a pleasure to see Colombe asking for food and being angry if we don’t prepare the bottle fast enough. We can sleep without worries about a clogging tube. Colombe is slim, but she is a little rascal and her progress in her psychic and motoric development are enormous. We are able to go out without the machine which peeped regularly.
What’s the most awesome thing that has happened with your little one since completing the program?
To sit with her at the table, to give her a piece of bread. To watch her eating the soup which i prepared for her sisters. That we are able to go out without the … To visit her cardiologist who was stunned about her progress…and to remember the visit one year before when we sat in his office…we wanted to ask him how we could accompany our baby. We thought she will immediately die after birth. What a journey!
A big step has been made through the wonderful work of your Team! Thanks to all, we owe you a lot and we will never forget that!
Guillaume and Anne-Solène