Our son Ethan has only just got rid of his tube at 7 months old and had you asked me 2 weeks ago if I saw him being without the tube now, I would have cried thinking "if only"! He has however done it!! Ethan has a cleft of the soft and hard palate and also suffers from reflux. He has had the feeding tube in since day 1 as they were making a plate for him to wear in the roof of his mouth. Once the plate was made and we were feeding him, he never really got the volume up of his oral feeds so that the tube could be taken out (dont think the reflux helped and he was on the most amount of medication/thickened feeds he could have). We had seen the dietician and speech therapists at the hospital who made up the feeding team and were told to keep doing what we were doing but it didnt seem to be getting us any further forward. Ethan was on 700ml a day (with extra calories "28" so that he didnt need as much milk to get the benefit actually taking more volume wise if you know what i mean?) made up of 4 x 150ml feeds during the day and 1 x 100ml feed overnight. Of this, he was only sucking 20ml of each of the day feeds so 80ml a day. I saw a website for a hospital in Austia that specialises in getting babies who have feeding tubes out of babies that have no other medical explanation as to why they may not be able to feed. The website is www.notube.at/ They say it takes approx 3-4 weeks to get the baby/child to be able to feed without the tube and they have a 92% success rate. Their program can be run by either going over there and being an inpatient, being an outpatient or doing "netcoaching" which is what we were considering. Depending on your financial situation, it can be expensive, costing around $2,000 for the net coaching + any tests if you need them. If you do not achieve your goal that is set at the beginning of the program, they refund 50% of the fee. They beleive that babies who are tube fed dont know what hungry really is and dont know that it is associated with food. We didnt actually do the program but their program model actually gave me the confidence to see how Ethan went when he pulled his tube out (yet again!) last Friday night. We thought we would wait and see how he went without the tube and put it back down if he showed any signs of dehydration etc thinking we would need to put it down that morning. He took more then usual on the Saturday and 245ml on the Sunday, and then jumped up to 465ml on the Monday. He initially lost weight (he was 7.25kg to start and got down to 6.89kg) but today when i weighed him at day 11 he has put on 100 grams since Thursday so things are looking up. We were going to enrol in the program but because Ethan did so well on his own, we have not had too. Obviously this program is not for everybody but if you are in the same situation that we were and have done everything that the medical professions tell you and seem to be getting no where, it may be worth a look. Ethan seems so much happier without the tube. His reflux isnt as bad, he seems to have come along so well development wise in the last couple of weeks and is a much happier baby all round. There is a support group set up by a lady in Tasmania who has done the program and a lot of the mums on that website have either done the program or are doing it at the moment. All the best xx
Thank you. He is now 2 1/2 weeks tube free! He had his grommets put in today. I weighed him on Friday and he had put on anothe 100 grams in the 3 days so I will try to take him again tomorrow to be weighed. I hope other families who have babies with NG Tubes read about the above website and it helps some of them, as sometimes the "normal" tactics used for feeding dont work on our little babies
