Orson's Tube Weaning Journey

I am Laura, and my husband Karl and I have a wonderful, miracle baby boy, Orson. He has fought the odds to be here, born at 26 weeks in April 2016, and has been so brave and strong throughout, but in October he decided to give up on taking bottles. He isn't taking to solids either, and is currently fed by NG tube. Some premature babies can do this, and it's suspected that Orson's problem is a severe oral aversion. These are often successfully treated with the weaning processes employed by no tube clinic.

We all find the NG tube distressing, mainly Orson, who coughs up a lot of mucus, and often vomits the tube up with his gagging and coughing fits. When this happens we have to replace the tube, which he finds very upsetting and frightening. Sometimes this happens 4-5 times a day.

Currently, because of his strict three hourly feeding regime, and all the equipment he requires, we barely ever leave the house as it's just so difficult. He can't go to baby groups or coffee mornings, so misses out on social interaction with other babies, and it can get very lonely and isolating for us too.

We are really keen to get him eating on his own, and enjoying food and drink, like any normal happy baby. It's such a shame to see his lovey face so damaged by the tapes required, and to see him so upset and exhausted by the vomiting and tube replacement.

We are currently hoping to raise enough money to get us to Austria, to the No-Tube clinic for a residential tube weaning course, in the hopes that this will enable him to eat properly again. It's very expensive of course, and there's nothing like it in Ireland to our knowledge, having researched it extensively. The residential in Austria is over €8.5k, and then we need money to travel and stay, but if we can raise even just the cost of the clinic we'll be over the moon.

Thank you all so much for reading, sharing, and if you are able at all, donating. This means everything to us - Orson deserves a stress free existence, one where he can enjoy food, and not be completely tied to machines and regimes.

Any excess money raised will either be used for Orson's ongoing medical costs to do with his tube feeding, or if that is not necessary, it will be given to the Irish Neonatal Health Alliance and/or the NICU at CUMH

There is no time limit on donations, it's just until we have enough to do what we can to get Orson eating again.

Laura and Karl.