I am not sure why I haven't posted about Vinnie's successful tube wean yet - I think I have been caught up in normality and too busy enjoying our little man...Two months have passed since we started weaning Vinnie off the feeding tube and it has been a great success. It was definitely tough the first couple of weeks but we stuck to our guns and starved our child in order for him to eat. That sounds really callous but it is basically true.
After almost 9 months of tube feeding Vinnie we decided (against professional advice) to pull out his NG feeding tube to make the little guy hungry in order to get him to eat/drink like a normal baby. It's not rocket science right? Sounds logical? We thought so anyway.
We spoke to Vinnie's health care team before going ahead and had a pretty mixed response. This form of tube weaning is not common practice in NZ so doesn't have a lot of local support. The Speech & Language Therapist wanted Vinnie to 'demonstrate oral eating skills' before slowly reducing tube feeds (but he isn't hungry because he is constantly tube fed! Frustration!). The Dietitian was largely concerned with the calorie reduction and potential weight loss (but what about the developmental milestones he wasn't reaching because the feeding tube was holding him back?). The Respiratory Therapist was informed after we started the wean as I was too scared that Vinnie's Chronic Lung Disease / oxygen requirement would be a valid argument to postpone until a later date (he was actually very supportive though once he found out... phew!).
Our paediatrician was behind our plan 100% which made it a lot easier. He did ask me afterwards if we still would have gone ahead with our wean plan if he didn't support it, and quite frankly, yes we would have. After researching the subject of tube weaning and learning about the Graz model (rapid reduction of tube feeds to invoke hunger) from the hospital in Austria, I felt that this was absolutely the right thing to do. Initially I drove Cam insane with the hours spent online speaking to other parents that had successfully done this and reading and re-reading medical papers on the subject. I was like a dog with a bone and there was no way in hell I was going to let it go. Cam supported the idea completely and together we were a formidable force (well, mainly me, Cam is good cop).
So, we reduced Vinnie's feeds over 3 nights; by day 4 he had no formula given via the feeding tube. On day 4 we managed to syringe a small volume of formula in to his mouth - approximately 1/3 of the requirement to remain hydrated (constantly checking for wet nappies and monitoring energy levels). So I was freaking out a little. The following day we modified an Avent bottle and poured milk in to his mouth. We had been told by the SLT that Vinnie had lost his suck reflex (use it or lose it apparently) and that he would never suck from a bottle. We were encouraged to move straight to sippy cups. We cut a hole in the end of the Avent teat and tried this first. It worked ok but it was a very slow and painful process getting milk in to him. We would lie him on the floor and pour mouthfuls in at a time. This continued for the first 7-9 days. At this stage we also were offering him pureed baby food twice a day with success. Apple custard was an early favourite along with mashed avocado and banana.
In the first week Vinnie lost 280g/4% of body weight. If he lost more than 10% of his body weight we had planned to abort the wean. Luckily by the second week weigh in he had regained 120g and continued to regain weight each week. Each week his eating skills improved and by the end of the second week he was sucking from a bottle (something we were told he would never do by the so called experts!).
Before Christmas we had a follow up appointment with the paediatrician and Vinnie had gained 200g from his starting weight in the six weeks since we started weaning him. Pretty amazing really. Our paediatrician commended us on a job well done and said that it was down to our 'initiative and perseverance' that Vinnie has been successfully weaned from the feeding tube.
Vinnie officially came off the oxygen just before Christmas after being on a small amount at night time only since we started the wean early November. On the 29th Dec I came down with a cold and passed in on to Vinnie (his first cold - somehow we made it through the winter only to get sick in the height of summer!). Unfortunately this developed in to Bronchiolitis and he had a terrible wheeze and a bit of a cough for a little over a week. Although we tried so hard to avoid this it was bound to happen at some point. And he coped with it a lot better than he would have done during the winter. It meant a little bit of oxygen at night time but he actually seems to be over it now. Although he was quite wheezy he was perfectly happy and not distressed at all.
In the first week of January we went on our first family holiday up north and camped for a week with friends. It was great to be able to take Vinnie away - our normal baby - finally. I never thought that he would be off oxygen and eating/drinking in time for Christmas and summer. It was much more than we had dared to hope for.
I've added a selection of pics of Vinnie enjoying his food over the last couple of months. Teething rusks (he now has six teeth!), chop bones, and bagels are all favourites to chew. On Christmas Day Vinnie ate the pork with apple sauce, gravy, potato, broccoli and cheese sauce (blended) and loved it! He also likes Christmas cake, ice cream, yogurt, chocolate, watermelon, and anything with custard and fruit. Oh, and beer (like father, like son).
I will sign off from this rather long post now! I need to go and start planning a 1 year olds birthday party ;-)
