Well, today was supposed to be the rush, rush day with T seeing both the speech therapist who is going to work with his eating, and getting the biopsy results from the surgeon.
However....we have a junior doctors' strike today and tomorrow and I got the call from the surgeon's office yesterday to put off T's appointment until next week - I guess it's all hands on deck!
I don't mind really because I was going to have to watch the clock carefully and this way I could make sure we got basic info right. The therapist was really good and thorough. She said that kids who have things like reflux which make feeding unpleasant often learn to self-limit eating and won't increase volumes.
T is apparently eating a good range of textures and his mechanics are fine - it's just the volumes.
We really need to sort out his reflux and then she sees a definate need and real role for her after that. She's going to talk to her seniors about T's feeding post op and the pros and cons of a feeding tube for a kid like Thomas. She said she'd get back to me in a few days and that she'd write a detailed report on T and include a plan for him. She's going to talk to the dietician too and make sure everyone gets a copy of the report. I had my list of contact details for everyone involved with T so she can easily circulate everything. I also gave her a copy of the sheet with our concerns for T. She took photocopies of all of this month's food diary as well.
She did say I was already doing everything she'd recommend I do - including getting him involved in cooking (not that he eats it afterwards!) and that he is still fairly positive about food which shows how well we've done over the past 3 years. She also laughed at the surgeon's idea that once we operate he's just going to start eating - not a chance! Once we've fixed his reflux we've then got a long road of trying to fix his attitude to eating and volumes.
But I feel like we might get somewhere finally with T's eating - which is nice since he's eaten stuff all since Friday!
Eleanor.
Our on-going saga with life with 3 prematurely born boys. The fun doesn't end at the NICU door, even for 'late' preemies.
Showing posts with label tube feeding. Show all posts
Showing posts with label tube feeding. Show all posts
Tuesday, April 22, 2008
Monday, March 31, 2008
To or not To tube...
"To Tube or not to tube, that is the question..."
Apologies to William Shakespeare of course but Hamlet goes on to wonder if it's better to go on fighting or basically call it a day. That pretty much sums up the situation at the moment with T.
We got our samples of the Vivonex formula on Friday and I got sooo excited to discover that if T could drink 1 litre of the formula a day then he'd be covering his daily levels of protein, vitamins and minerals. Yes, that leaves fats and carbs but I figured a couple of 'doses' of cake a day would see to that issue.
He was drinking around 600-700mls a day already with no major 'fall off' in his food intake. Trust me, I'd be able to tell if his eating went from abysmal to non-existent! So maybe we could do 1000 mls instead, not too huge a jump really???
They recommended that you use milk shake syrup to flavour the formula - as it's so revolting but no one will tell you that! So I achieved the almost impossible and found two different flavours of milkshake powder which were free of dairy and soy - who makes dairy and soy free milkshakes anyway??!
What I didn't count on were 3 different factors -
T basically eats homemade food only. Even the 'natural flavourings' of these powders seemed too strong for him. He drank about 30 mls of each flavour before declaring his 'mouth blurch'. A weakened solution simply meant he could taste the formula!
I did try him with the flavourings in his current formula so I'd know it was the flavouring he was reacting to not the formula itself. Strawberry and banana both had the same result. I managed to find an actual syrup today at a different supermarket and it was chocolate so I bought that too, with the same result.
The other factor I didn't take into account was the fact that the Vivonex formula itself is really nasty! Poor T - one mouthful and he's spitting frantically on the floor (poor Mummy too!!) and then racing off to the bathroom with a cup. That's where the only tap is that he can turn on!
The face he made each time we tried it would have been hilarious except that I was looking at this formula as the Holy Grail to save us from the tube.
The last factor I forgot to consider is that his normal formula consumption is around 400-500mls a day. The hot weather suddenly disappeared over the weekend and his consumption dropped equally suddenly. 400-500 mls to 1 litre is a huge jump and pretty much impossible to0 ask him to do - and we're heading into winter...
I felt quite desperate about the situation over this weekend but as P said "This is T we're talking about, of course it's not simple!"
And so I'm back to the drawing board to see if I can pull a gradual change in formulas, 10 mls in 190, 20 mls in 180 etc. I'm not holding my breath - and all of this has pretty much scraped the bottom of the barrel in terms of remaining tricks to try to avoid needing tube feeds.
At least the taste won't matter if it's tube fed!
And in the meantime - anyone for a milkshake? We can now do strawberry, banana and chocolate!!
Apologies to William Shakespeare of course but Hamlet goes on to wonder if it's better to go on fighting or basically call it a day. That pretty much sums up the situation at the moment with T.
We got our samples of the Vivonex formula on Friday and I got sooo excited to discover that if T could drink 1 litre of the formula a day then he'd be covering his daily levels of protein, vitamins and minerals. Yes, that leaves fats and carbs but I figured a couple of 'doses' of cake a day would see to that issue.
He was drinking around 600-700mls a day already with no major 'fall off' in his food intake. Trust me, I'd be able to tell if his eating went from abysmal to non-existent! So maybe we could do 1000 mls instead, not too huge a jump really???
They recommended that you use milk shake syrup to flavour the formula - as it's so revolting but no one will tell you that! So I achieved the almost impossible and found two different flavours of milkshake powder which were free of dairy and soy - who makes dairy and soy free milkshakes anyway??!
What I didn't count on were 3 different factors -
T basically eats homemade food only. Even the 'natural flavourings' of these powders seemed too strong for him. He drank about 30 mls of each flavour before declaring his 'mouth blurch'. A weakened solution simply meant he could taste the formula!
I did try him with the flavourings in his current formula so I'd know it was the flavouring he was reacting to not the formula itself. Strawberry and banana both had the same result. I managed to find an actual syrup today at a different supermarket and it was chocolate so I bought that too, with the same result.
The other factor I didn't take into account was the fact that the Vivonex formula itself is really nasty! Poor T - one mouthful and he's spitting frantically on the floor (poor Mummy too!!) and then racing off to the bathroom with a cup. That's where the only tap is that he can turn on!
The face he made each time we tried it would have been hilarious except that I was looking at this formula as the Holy Grail to save us from the tube.
The last factor I forgot to consider is that his normal formula consumption is around 400-500mls a day. The hot weather suddenly disappeared over the weekend and his consumption dropped equally suddenly. 400-500 mls to 1 litre is a huge jump and pretty much impossible to0 ask him to do - and we're heading into winter...
I felt quite desperate about the situation over this weekend but as P said "This is T we're talking about, of course it's not simple!"
And so I'm back to the drawing board to see if I can pull a gradual change in formulas, 10 mls in 190, 20 mls in 180 etc. I'm not holding my breath - and all of this has pretty much scraped the bottom of the barrel in terms of remaining tricks to try to avoid needing tube feeds.
At least the taste won't matter if it's tube fed!
And in the meantime - anyone for a milkshake? We can now do strawberry, banana and chocolate!!
Tuesday, March 18, 2008
Just Starting out
So here I am!
I've tried to set up a blog elsewhere but something's gone wrong so I figured if others can do this then so can I!
Hopefully I'm going to find time to blog fairly regularly...but typical of life with my prem kids, setting up this blog was interrupted by a phone call with T's dietitian!
Who am I?
I'm a full time mother - truly full time with this lot!
I homeschool, largely due to the kids not getting their needs met in our wonderful educational system here in New Zealand, but also due to bullying problems - which seems to be a universal problem. But I have found that the homeschool lifestyle is good - so much less stressful than dealing with school crap everyday!
I also have a little company called Little Tom - www.littletom.co.nz which sells properly sized clothing for premature and small new born babies.
I have 3 wonderful boys - W aged 9 and a half, N aged 7 and T aged nearly 3.
I also have a great and supportive husband - P. He does hugely long hours at work and sings as a paying hobby so often it's just the kids and me 24/7 or very nearly.
Apart from the obvious reasons to blog I decided to do this because my kids are the 'invisible preemies' or prems. They are 'late' prems. Still prems and they still struggle, just in different ways than say a 24 weeker but struggle none the less. They get ignored and forgotten in research, by doctors, by teachers (even though it has been shown that kids born even as late as 36 gestation are hugely more likely to have reading, writing, maths and fine motor skill problems and delays). My boys will carry their prematurity through life with them just as much as any other premature child.
W was born at 33 weeks gestation and weighing 3lb 14 oz or 1795g. He got through the NICU okay but once home the shit hit the fan. We dealt with reflux, failure to thrive (FTT), food aversions, apnoea episodes (where he stopped breathing in his sleep), developmental delays and eventually a diagnosis of Asperger's Syndrome - a form of high functioning autism.
There is no family history of Autistic Spectrum Disorders and the psychiatrist who diagnosed him said he had seen this more and more often in kids who were born prematurely, especially when the birth was difficult. W was delivered by emergency caesarian section due to my pre-eclampsia. He was deprived oxygen for a short period around his birth and didn't breathe on his own for a minute and a half. So who knows what actually happened to him...
They told my husband that they weren't sure he was going to make it through his first 24 hours but he can't remember why and I was too ill to be told - or so they decided anyway.
He's a wonderful kid these days anyway!
N was born at 36 weeks and 3 days, again an emergency caesarian section due to my pre-eclampsia and weighed 5lb 12 oz or 2620g. He had only 3 days in the NICU as he had respiratory problems and needed CPAP for a couple of days. He then came to me in the ward and we went home all together! N also dealt with severe reflux, feeding problems, FTT and some developmental delays. He seemed to get through it all but middle of last year he was diagnosed with ADHD and is now on Ritalin. This has made a massive difference to all of us - and again kids born prematurely, even as late as 36 weeks, have a 10 fold increased risk of ADHD - and again we have no family history. N also had a Nissen Fundoplication in October last year to finally deal with his on going reflux.
N is also a wonderful kid if a little challenging at times!
T was also born at 36 weeks - exactly, again and emergency caesarian section due to my pre-eclampsia. He weighed 5lb 11 oz or 2580g. This time I managed to not have a baby in the NICU and he stayed with me all the way through. T has struggled with feeding and weight gain pretty much ever since birth due to reflux. I was convinced he was refluxing at a couple of days old although told all prems reflux and not to wish it into reality - typical pat on the head to a postnatal mother. Never mind all my experience with reflux and the fact that this was my 3rd child and my 3rd preemie!
At 3 months old T got horribly thin and wound up needed nasogastric tube feeding. After 11 days in hospital he came home - plus tube. We managed tube feeding at home for about 3 weeks before he seemed to be doing better.
Due to some research and challenging on my part T's cow's milk protein allergy was picked up around 18 months old - and we discovered an allergy to soy at the same time. So the poor kid can't have any dairy products - or any soy! A huge culinary challenge.
T is now nearly 3 and still dealing with allergy problems and terrible reflux. He's still on meds and still underweight. We are battling on a daily basis to get him to eat anything much at all. He's now just hanging on the 3rd centile for his age, having dropped down the charts all year.
At the moment we have a dietitian, paediatrician, paediatric surgeon and GP involved with his care. We are waiting for 2 different lots of speech therapists at the moment. One lot to work with him on his pretty delayed speech and another lot to work with him on feeding issues.
But feeding therapy is going to have to wait until after we get T through surgery for his reflux as well. It appears, especially after having talked to the dietitian again today, that he is going to need to have a feeding tube surgically implanted after his nissen.
That's a thought which scares me witless and makes me feel like I've failed my child. But realistically, with developmental delays, hugely difficult feeding, all the learnt behaviour from reflux and his already low weight, it'd be irresponsible to go into his surgery without that kind of option and I actually will be failing T if I didn't take all steps I could to ensure adequate nutrition. His diet right now is horribly deficient - the dietitian says that if he weren't on formula he'd be suffering from malnutrition!
He's also a surprisingly happy and fun kid despite all the problems.
So that's me in a nut shell - I'll try and blog weekly if nothing else!
Eleanor.
I've tried to set up a blog elsewhere but something's gone wrong so I figured if others can do this then so can I!
Hopefully I'm going to find time to blog fairly regularly...but typical of life with my prem kids, setting up this blog was interrupted by a phone call with T's dietitian!
Who am I?
I'm a full time mother - truly full time with this lot!
I homeschool, largely due to the kids not getting their needs met in our wonderful educational system here in New Zealand, but also due to bullying problems - which seems to be a universal problem. But I have found that the homeschool lifestyle is good - so much less stressful than dealing with school crap everyday!
I also have a little company called Little Tom - www.littletom.co.nz which sells properly sized clothing for premature and small new born babies.
I have 3 wonderful boys - W aged 9 and a half, N aged 7 and T aged nearly 3.
I also have a great and supportive husband - P. He does hugely long hours at work and sings as a paying hobby so often it's just the kids and me 24/7 or very nearly.
Apart from the obvious reasons to blog I decided to do this because my kids are the 'invisible preemies' or prems. They are 'late' prems. Still prems and they still struggle, just in different ways than say a 24 weeker but struggle none the less. They get ignored and forgotten in research, by doctors, by teachers (even though it has been shown that kids born even as late as 36 gestation are hugely more likely to have reading, writing, maths and fine motor skill problems and delays). My boys will carry their prematurity through life with them just as much as any other premature child.
W was born at 33 weeks gestation and weighing 3lb 14 oz or 1795g. He got through the NICU okay but once home the shit hit the fan. We dealt with reflux, failure to thrive (FTT), food aversions, apnoea episodes (where he stopped breathing in his sleep), developmental delays and eventually a diagnosis of Asperger's Syndrome - a form of high functioning autism.
There is no family history of Autistic Spectrum Disorders and the psychiatrist who diagnosed him said he had seen this more and more often in kids who were born prematurely, especially when the birth was difficult. W was delivered by emergency caesarian section due to my pre-eclampsia. He was deprived oxygen for a short period around his birth and didn't breathe on his own for a minute and a half. So who knows what actually happened to him...
They told my husband that they weren't sure he was going to make it through his first 24 hours but he can't remember why and I was too ill to be told - or so they decided anyway.
He's a wonderful kid these days anyway!
N was born at 36 weeks and 3 days, again an emergency caesarian section due to my pre-eclampsia and weighed 5lb 12 oz or 2620g. He had only 3 days in the NICU as he had respiratory problems and needed CPAP for a couple of days. He then came to me in the ward and we went home all together! N also dealt with severe reflux, feeding problems, FTT and some developmental delays. He seemed to get through it all but middle of last year he was diagnosed with ADHD and is now on Ritalin. This has made a massive difference to all of us - and again kids born prematurely, even as late as 36 weeks, have a 10 fold increased risk of ADHD - and again we have no family history. N also had a Nissen Fundoplication in October last year to finally deal with his on going reflux.
N is also a wonderful kid if a little challenging at times!
T was also born at 36 weeks - exactly, again and emergency caesarian section due to my pre-eclampsia. He weighed 5lb 11 oz or 2580g. This time I managed to not have a baby in the NICU and he stayed with me all the way through. T has struggled with feeding and weight gain pretty much ever since birth due to reflux. I was convinced he was refluxing at a couple of days old although told all prems reflux and not to wish it into reality - typical pat on the head to a postnatal mother. Never mind all my experience with reflux and the fact that this was my 3rd child and my 3rd preemie!
At 3 months old T got horribly thin and wound up needed nasogastric tube feeding. After 11 days in hospital he came home - plus tube. We managed tube feeding at home for about 3 weeks before he seemed to be doing better.
Due to some research and challenging on my part T's cow's milk protein allergy was picked up around 18 months old - and we discovered an allergy to soy at the same time. So the poor kid can't have any dairy products - or any soy! A huge culinary challenge.
T is now nearly 3 and still dealing with allergy problems and terrible reflux. He's still on meds and still underweight. We are battling on a daily basis to get him to eat anything much at all. He's now just hanging on the 3rd centile for his age, having dropped down the charts all year.
At the moment we have a dietitian, paediatrician, paediatric surgeon and GP involved with his care. We are waiting for 2 different lots of speech therapists at the moment. One lot to work with him on his pretty delayed speech and another lot to work with him on feeding issues.
But feeding therapy is going to have to wait until after we get T through surgery for his reflux as well. It appears, especially after having talked to the dietitian again today, that he is going to need to have a feeding tube surgically implanted after his nissen.
That's a thought which scares me witless and makes me feel like I've failed my child. But realistically, with developmental delays, hugely difficult feeding, all the learnt behaviour from reflux and his already low weight, it'd be irresponsible to go into his surgery without that kind of option and I actually will be failing T if I didn't take all steps I could to ensure adequate nutrition. His diet right now is horribly deficient - the dietitian says that if he weren't on formula he'd be suffering from malnutrition!
He's also a surprisingly happy and fun kid despite all the problems.
So that's me in a nut shell - I'll try and blog weekly if nothing else!
Eleanor.
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