Happy little eater

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 ;-)

Almost tube free!!!

The last month seems to have flown by and Vinnie has made progress in leaps and bounds. A few weeks ago his oxygen was turned down to 1/8 litre (lowest setting) and around the same time I discovered a great website for parents with tube fed children. It was a huge source of information for me and has given us the confidence to try weaning the little guy off the NG tube.

Although pediatric nasogastric and gastric feeding tubes are relatively common in NZ/Aust/UK/US (and most westernised countries with a high standard of medical care) the plan for weaning infants/children off them is almost non existent, and the knowledge for how to do so is lacking. Since we have been home we have had a community Speech and Language Therapist working with Vinnie as he was on an NG tube. In the past when I had asked about getting Vinnie to eat orally (bottle/solids) she had provided some info, but the general feeling was 'he will eat when he is ready'. I was told to offer him solids after a tube feed, the idea being that once he had built up sufficient oral skills they could then reduce tube feeds accordingly.

I wasn't entirely satisfied with this approach but at the same time wasn't sure how else to get him to eat. Then I found the website referred to before: http://tubefedkids.ning.com/ This site has been set up by a woman in Tasmania who had a son with an gastric tube and weaned him through a hospital in Austria with a specialised weaning program (after lack of support in Australia and frustration with her local medical team). The site is a forum for parents of tube fed kids (past or present) to share experiences around tube feeding, weaning and provide support for each other.

The principle for tube weaning commonly supported on the site by most parents is a rapid wean (rapid reduction in tube feeds) often referred to as the 'Graz Model', and was developed by the Graz Children's Hospital in Austria (the one with the tube weaning program). When you read through the graz model of tube weaning it starts to make a lot of sense. Tube fed children have no motivation to eat as they are constantly full from tube feeds. They often experience a lot of discomfort from the tube itself and are overfed (on the advice of the dieticians/doctors who calculate feeds based on body weight). Then there is the gagging/reflux/vomiting issues that the majority of tube fed children experience. Hmmm.... sounds a lot like Vinnie I am thinking at this point.

After a few weeks of researching tube weaning and the graz model of rapid feed reduction we decided that we wanted to go ahead and try this ourselves at home. If the home attempt fails we thought we can register for the online coaching program done through the Graz Hospital in Austria. We made an appointment with Vinnie's paediatrician to discuss our idea and plan and he was extremely supportive (much to our surprise and relief!). Some of the other medical team (particularly the speech and language therapist) have not been so fond of our idea but are 'interested' to see the outcome.

Anyway, that was last week and we decided to start the wean on Saturday. The plan was to reduce total feed (1030ml formula per day) by 20% per day over a five day program. By day 5 we imagined we would have a ratty, grizzly, HUNGRY child that hopefully wanted to eat. Some of those symptoms happened a bit earlier and by day 4 we decided to cut out feeds completely ahead of schedule (off our own back.... hey, we are the parents after all, trust your instincts!). I am so happy to report that Vinnie has started to drink from a modified bottle (he can't suck so the milk free flows from the teet) and is having small amounts of pureed fruits/vege/baby rice. He is currently having enough to remain hydrated but we imagine there will be some weight loss initially until he gains enough eating skills/appetite increases. I called the SLT this morning to report our success so far and had to make a real conscience effort not to sound too smug!

At the same time that this has been going on we have also taken Vinnie off the oxygen during the day time (again, off our own back... naughty naughty. Expecting a stern look from the respiratory specialist when we see him tomorrow! We were well aware of his oxygen saturations before we did this though so not completely careless parenting on our part). It is so nice to see him tube free finally! If only during the daytime... I am sure the oxygen will be gone for good by the end of the year.

Aside from trivial stuff like feeding and breathing, Vinnie is also teething. No teeth yet but lots of grizzling and crying (which we hadn't experienced a lot of until recently!). He is still a happy, contented little boy for the most part though (as much as you can be when you are teething and your parents are basically starving you in order to get you to eat!).

Anyway, that is all our news and looking forward to hopefully reporting back on a successful wean in a few weeks time. Enjoy the pics!!!

Growing up fast...

It has been ages since the last entry so have lots of photos for you! Vinnie is now just over 5 months corrected and fast approaching 8 months old. It is extremely cliched to say that time goes fast and they grow quickly... but it is so true.

It seems as though Vinnie has learnt a whole lot of new tricks in the last couple of weeks. He is spending a lot more time on his tummy lately and is just starting to push himself up on to his elbows. Apparently this was always going to take him a bit longer as he isn't as strong through his chest due to his lung condition... he is getting there though. He is almost rolling over from back to front; rolls on to his side at the moment. He is also getting a lot more stable in his high chair and is enjoying standing on his feet (naughty naughty... we are doing exactly what the books say not to do!).

Vinnie continues to make progress with both his oxygen and oral feeds. He is currently on a quarter of a litre but we are hoping that he will be reduced to an eighth of a litre of oxygen flow by the end of October. We have been trying him on solids for the last 3-4 weeks and he is slowly starting to show some interest. Yesterday he swallowed about 2 tsp of pureed fruit and then vomited it right back up! He is still gagging a lot but is making progress.

The main challenge lately has been his terrible reflux / projectile vomiting / slow weight gain. For the last week we have had him hooked up to a feeding pump at night which drip feeds large volumes of formula over 12 hours. We have reduced the volume of milk during the daytime and it seems to be helping control his vomiting (or the amount he is vomiting). Hopefully this will only be a temporary measure as we don't like having him hooked up to another machine and mummy and daddy have to get up in the middle of the night to change the milk... back to sleepless nights. But if it means Vinnie is gaining weight it is all worth it.

Vinnie has been squealing with delight lately and laughing like a loon. He is such a happy, contented little guy and sleeps like a little angel at night. He really is a perfect little baby. (Apart from the whole prem thing. That was very, very naughty.)

Now that the weather has warmed up and Vinnie is doing better we have started venturing out a lot more. Initially it would take me ages to get out of the house as the checklist I am working through is slightly longer than: nappies, milk, clothes, toys etc. Add: oxygen cylinder, extra nasal prongs, leads, tape, NG tube, syringes etc. But I have it down to an almost fine art now and it is only taking a good 15 minutes to get out the door. (I have always been a bit on the tardy side and now I don't have a hope in hell!)

Aside from the occasional outing to improve my feelings of sanity I have also started making a weekly appearance at work. Grandad ('Bren') has been lending a helping hand with Vinnie each week to make this happen. Dad is amazing with kids and it is great that they get some bonding time each week... sorry Dad, hope I haven't just publicly ruined your 'tough guy' image. It is true that even the most macho men are big marshmallows when it comes to Grandchildren and he is no exception!

More photos...

Following on from the last post here are a few photos taken within the last couple of weeks.

Vinnie will be seven months old next week and is just over four months corrected!!!

Little Mr Chatter Box...

Well, Vinnie is certainly proving himself to be a Gee! The little man loves to chat and keeps me very entertained with his constant babbling/chatter during the day. He is a really happy, content little boy who wears a serious expression much of the time, but quickly disarms you with a smile. We have even had a few chuckles out of him this week!

Vinnie loves sucking on his hands at the moment (discovered these a few weeks back) and has started to show a real interest in his toys and is grasping things now. He is a lot more receptive to being on his tummy (for short periods) than he was a month ago and is building up strength in his neck. We put him in his high chair occasionally only because he looks so cute in it! (Not really able to hold himself up in it yet!)

On Sunday it was Fathers Day and we took Vinnie up to Matakana to see Mum and Dad and Cams parents drove down from Keri Keri. It was the first time we had really taken Vinnie anywhere and he had a ball... of course he would with all his biggest fans giving him their undivided attention!

Vinnie continues to grow, although his weight gain has slowed a bit (most likely due to the fact that he continues to vomit after most feeds... this is getting worse rather than better). The doctors aren't too concerned at the moment as he is still within a healthy weight range. We have started introducing solids again this week and while he is showing more interest than he was a month ago, he isn't quite there yet. He doesn't seem to object to food around his mouth, he just has a problem once it is in his mouth... the gagging/vomiting starts and it really isn't pleasant for the poor little fella.

Vinnie is still on half a litre of oxygen but we will hopefully trial him on a quarter of a litre this weekend... I am fairly optimistic that this is going to go OK and that his O2 will be reduced again soon. He has come a long way since he came home 2 1/2 months ago but still has a way to go. Everyone always asks how much longer he will need the oxygen and we don't really know... I'm kind of guessing another 6 months give or take. As his oxygen requirement comes down we are definitely feeling a lot more confident and optimistic about his long term prognosis. Once the flu season is out of the way we will probably come of out hibernation and voyage out a few places.

Here is a video from today... will also post some recent pics separately!

Vinnie - Six Months / 3 1/2 Corrected

Just a few more pics of the little guy and some updates on how he is doing...

Vinnie's oxygen was turned down to 500ml last week and the respiratory doctor wants to try him on 250ml soon to see how he goes. He is doing very well... his lungs seem to be really improving quite fast, although he may plateau for a while.

Vinnie is completely refusing the bottle and has been for the last month or so (crazy to think he has been home 8 weeks... it has flown by). We have tried offering him solids but he isn't interested at this stage. Hopefully he will show some interest over the next month or so but we aren't exactly holding our breath. One of the paediatricians that we took him to told us that he may very well be off the oxygen before the feeding tube as babies with chronic lung often don't want to eat with all the negative experiences around their face (i.e. the oxygen tube and the feeding tube). Some of these babies even end up having a line directly in to their stomach (through the belly button I think) that you feed them through to give their face a bit of a break... just a temporary measure (I hope!!!), if it comes to that at all.

Luckily for him he is oozing cuteness so it makes the feeding issues (and projectile vomiting after most feeds) bearable! Developmentally Vinnie is doing very well. He loves sucking on his hands, kicking his legs around, talking and seems to be enjoying tummy time - managed to spin himself around 90 degrees on the floor today.

Oh, and he is getting pretty darn good at pulling the tubes out of his nose and tapes off of his face! One morning last week (very early) I woke up and looked over at Vinnie and all the tubes were out. He had only just done it so still had plenty of colour in his face (blue baby not a good look). We thought we'd snap a few pictures of him without the tubes/tapes... only the flash was a little bright and he looks a little stunned in the photos! And those poor little red cheeks :-(

Vinnie's furry friends

The dogs came home about 10 days ago and they have been super well behaved! Very gentle with Vinnie... a few licks but back off pretty quickly when I tell them to. They have also shown no interest in chewing his toys, or his oxygen tubes (thank goodness!). Vinnie seems quite indifferent towards them at the moment but isn't bothered by them at all.