You gotta have hope

Apologies to lyricist Benny Van Buren!

But I keep coming back to this thought.
A few months ago I said to a nurse, in the context of something else, if you don't have hope what else do you have?

You have to keep trying, hoping, praying - especially as sometimes when your back is pretty much against the wall there really isn't anything else!

So this is where we find ourselves, again, with T.
He isn't gaining weight, his eating is going from bad to worse, his retching spells can be extremely violent even to the extent that he can't swallow his saliva in between and winds up choking on it, and his on-going pain levels make him miserable.

After a particularly nasty bout of retching he came to me and said that he wishes he'd never been born because then he would never have got the gloopies.
In terms of quality of life we've hit close to the bottom for him right now.

The gastros have no real idea - we've tried medication with no response, possibly made things worse - and when a doctor says that 'hopefully he grow out of the problem but it'll take years not months' it doesn't make you very happy as a parent.

And so T is booked for his 4th surgery in 3 years, the 3rd in 2 years.
The surgeon said we have a good odds on chance that this will work but he's not offering any promises. They will be re-siting his gastrostomy button in this surgery. He will do it laproscopically and so he can have a good look around at the same time. He will close the old hole at stomach level and make a new one appropriate to his growth. We're all hoping that he may be able to use the same hole at skin level to bring the new gastrostomy out but that really depends on what he finds and considering the on-going granulation issues he's inclined to make a new exit point too.
He will try to go straight to a button rather than the long dangly tube which causes so many issues last time - but again the surgeon says things heal better with the long tube and, as always, we will do whatever has the best long term outcomes for T. The long tube is only as the tract heals so about 4-6 weeks.

It means an overnight stay in hospital due to needing an ng tube for drainage post op - and I'm hoping it will only be the one night but knowing T anything could happen. From the little I know about this surgery (last time was his fundo AND gastrostomy) it should only be about 30-45 mins on the table - but again he wants to check things out and this is T. He loves to throw curve balls at people!
Also I want to be sure the tube is working well before we go home because I don't need an urgent re-admission on my hands and with T's eating/lack of drinking he really really needs this tube.

And so I find myself hoping, madly, desperately, that this surgery is a good idea, that it will solve all the gastro issues and that it is the right thing to put him through.

I know that the surgeon simply wouldn't cut if he didn't think it was the best option for T. The gastros have suggested it as a possible answer and certainly a 'rule-out' option. There isn't anything else to try and we have to try everything before we resign ourselves to T leading a life of tube feedings and on-going miserable pain.

But there are always risks - not just those normally associated with surgery but to do with the over all condition T is in. The surgeon commented that at least T has good nutrition. Then he has an appointment with the dietician who expresses her concern over his nutrition as he's really only been getting a formula diet and says she wants extensive blood testing to get his baselines. Then that reminds me that last year the GP commented that T's iron levels were low but he'd be okay so long as he didn't bleed. T's eating has only got worse since then and is inevitably going to bleed with the surgery. So off we go to the GP to discuss that issue.
My file notes had said that his circulating levels were okay, just the stores were low. I was able to give the GP the date of the last bloods and so she got his results up and it turns out the results I thought were normal were only just normal.
So he's now on iron supplementation as a pre-op precaution and we also did bloods to check exact current levels.
All of this leaves T in a more vulnerable situation for going into the surgery.

But you've got to hope!
Hope he comes through the surgery fine, hope that the surgery fixes the whole issue and hope that his eating recovers quickly.

In terms of eating he's right back to square one where he was in Feb 09 when he had his initial surgery. He's getting 1000ml/day of formula all through the tube and his eating is minimal at best and over this past month he has even been refusing his brownies due to pain. He has been through so many periods in his life with under nutrition you have to wonder about any long term effects.

And still you simply have to hope - T doesn't give in, and neither can we.
In Benny Van Buren's song - You gotta have heart, from the Broadway Show "Damn Yankees" the baseball team is totally down on it's luck, can't win for losing and yet they look forward to one day when things improve.
And so we do likewise.

Life's Earthquakes can really shake you.

It's been a while since I posted and so much but yet so little has happened.
The title of this blog post is both literal and metaphorical.
In so many ways I feel I have nothing to worry about or complain about compared to the population of Christchurch, New Zealand.

A week ago yesterday their world was literally rocked on it's foundation by a 6.3 devastating earthquake. This is on top of their 7.1 in Sept last year. Last time no one was killed, this time it's currently 159 and climbing.
Some times life sends warnings, sometimes it takes no prisoners.
So many still without water, many still without power.
I think about how we'd cope in the same circumstances and can see why they have evacuated disabled children.
Despite our fairly well equipped emergency kit we would have to head to a welfare centre and take our chances or leave town. T needs his day feeds, I need to be able to clean feed containers in clean water and also to mix formula in safe water for him. Never mind the need for power for the pump for 3 feeds a day. The battery only lasts for about 24 hours of feeds.

And as if we needed yet another reminder of life's impermanence our town was shaken by a quake last night. Not a bad one, the kind we often get and it was more noise than movement. But I panicked. I don't normally. I'm good in an emergency as a general thing - just two weeks ago our fire alarms went off for no apparent reason in the middle of the night. P went off to see what had caused it as there was no smoke smell and I executed a text book evacuation of the younger two, incl unhooking T from his pump in record time and getting them out.
But because of the death and destruction in Christchurch and the expectation that our town will be hit by a severe quake sometime soonish it was way scarier than it should have been.
Useful lesson learnt though was we need a torch that works in the kitchen and that some child has purloined one of the torches in a bedside drawers - I thought they didn't know we had them there to prevent exactly that happening.

Those are the literal earthquakes.
But there are other life altering earthquakes which can turn your life upside down.
There are emotional earthquakes as well.

The end of last month was my little micro-prem nieces' due date.
My heart breaks when I think of them and their so short lives.
My heart breaks for their parents' empty arms and broken hearts.
As usual the distance between delivery date and due date is a stark stick in the sand showing clearly the gap of lost gestation and lost opportunity.
Granted the twins' gap is so much larger than any of my children, but the lost gestation, lost opportunity and lost potential are in someways clearer because all of my children live with the impact of prematurity through their everyday lives.

It's the age old thing - is the loss worse because they are absolutely gone, or is it worse to have to continue on with the impacts everyday.
The battle was fought courageously, intensely and then lost for the twins.
But as I write, I was supposed to be doing an annual Needs Assessment for W, I need to chase N with more Fortisip as he was looking green due to lack of eating, and T is currently hooked up to his pump and has been in and out of tears all day due to higher pain levels today.
For them the battle continues to rage, maybe not as intensively, but more enduringly.

I have just seen a paper written with a strong research base which shows some of the longitudinal impacts for kids born prematurely. It looks at the full cohort of prematurity - naturally with a focus on the extreme premature child as those impacts are so much more severe, but also at the 32-36 weeker inclusive grouping.
It makes hard reading, but validating. My kids might be 'late prems' but none the less people are now studying the impacts of that lost gestation too. The battles they have faced and continue to do so are not because I'm 'looking for trouble', not a good parent or any other justification but fallout from their early arrival and less than optimal conditions inside me.

Other earthquakes in our lives recently have been the two crucial appointments for the younger two children.
N has seen his paed and the eating disorders doc. I know and I'd be an idiot not to know, that N has a real problem eating. I've always called it a feeding disorder - one of the dirty dark secrets of the prem world, that when they strike they can be really hard to get rid of and that late prems (if they develop one) can be just as badly affected as micro prems.
But N's paed called it an eating disorder. As she said, it's not anorexia or what we think of when we talk about eating disorders but still an eating disorder. Apparently N has his own little diagnostic box - as he doesn't fit in any category.

After a hellish week trying to force N into eating we abandoned the efforts due to the exponentially increasing stress levels on everyone in the family but N in particular. When the kid is crying in his sleep and calling out that he can't eat something - all while tucked up in his bed, when the kid is so stressed he is biting himself, throwing tantrums left right and centre, and so stressed he's getting almost sick with it then it's time to blow the whistle.
This is not the way I want to parent, all professional evidence points to the fact that force feeding is not the answer to this kind of feeding problem anyway and can actually increase the problems.

N's paed believes he will just get it together with peer pressure, esp in his teens.
She has said that he cannot go to school on Fortisip alone and we want him to go to school for Intermediate (next year) so she has said he has to be eating lunch by then.

As her recommendation is NOT to admit him to hospital for this intensive program (apparently targeted at anorexic teens) we now have her permission to feed him 5 Fortisips a day and up to 6 if he's not eating his usual amount. The 6 will give him his total calorie needs and so hopefully avoid the behaviour problems we have seen when he doesn't eat. The the past week and a half I think he's only had 5 Fortisips once. Many days he's only had Fortisip at all.

We do go back to see the eating disorders doc in 6 months so we'll see what she says then.

And so the tunnel has lengthened once again. But at least we now have a way to control the behaviour which was causing so much distress to the whole family. There's still no real help or hope in getting him to eat other than wait and hope he develops hunger - hard to do on a litre of thick shake equivalent everyday.

And our lives, hopes and plans have been thrown into disarray for T too.
We saw the gastro for him the other week as well.
Essentially they have no idea what's going on. They acknowledge that something is definitely wrong which is reassuring in it's way and that they have seen a few other children like T in the past.
But there is no magic wand, no answers and only guess work.
The current theories are delayed gastric emptying - or dumping syndrome (rapid gastric emptying!). Yes, they are complete opposites!

We are trialing another gastric motility drug at the moment, and like the last one seems to make him worse. He is regularly in pain, retching, sometimes very violently with his feeds, tired, sore and grumpy. And then 30-45 mins after a feed or eating something he's fine again! But often the background pain levels remain.
If this med doesn't help after two weeks we double the dose and then after that try the two meds together.
I'm not looking forward to that at all.
They have no ideas about pain management or a way forward.
They think it's just a matter of time and he'll 'grow out of it'. That grow out of it is physically - longer gut length etc.
Growing is hard when you can't eat properly - and their time frame is years not months.

So I'm going to book T into the surgeon as he's been running most of this and see what he can suggest for pain management. I see the dietitian at the end of this month and I'll see what she suggests in terms of adaptions to his feed regime. If he's got delayed clearance then rapid feeds during the day probably aren't a good idea - if it's all sitting there no wonder he feels sick. If he's dumping it all from his tummy into his gut then again that plays havoc with the blood sugars and other things and could explain the retching, feeling sick, dizziness, needing to lie down after a feed etc. And if it's rushing out of his tummy a fast feed also isn't a good idea!

So apart from looking at years of tube feeds to come, I'm looking at the distinct possibility of him being hooked up to his feeding pump for much more of everyday.
This will turn many options for everyday life upside down and make us more homebound than previously - and no clear hope for a break from it.
We will now have to look at schooling options for T - Health School which can be the referral point into Correspondence School is probably the best option as his pain levels and variability make it impossible to get him into an ordinary school and at an ordinary time.

And so this month has been full of earthquakes - literal, emotional and in terms of changing the fabric of our everyday lives. Various hopes have been snatched away, tunnels lengthened, more adaptions need to be found.
We will get there.
The human spirit is resilient.
These personal disasters are not as large as the devastation and loss of life in Christchurch.
But they are ours and huge to us.

Life on a see-saw

Well, I ended last year intending to up date this regularly but life on the see saw continues.

One thing I hoped for was fewer appointments for the kids - epic fail on that one! Between 10 Jan and the end of Feb we will have had 10 medical appointments and possibly more. That's 10 in 7 weeks.

We really spent January recovering and re-grouping after the maelstrom of events and emotions of December and I, for one, still find it incredible to think we're only 9 weeks out from the twins birth.
It has certainly added poignancy to N's birthday this year.
I commented to someone recently that you think of a month being nothing too much but the kids' birthdays and the gaps between that and their due dates always brings home to me exactly how big a stretch of time that really is.
N's birthday cake is nothing but photos, the cards are still sitting on the shelf but when they blow over I don't put them back up straight away any more, his birthday was 22 Jan - and he's still 7 days away from his due date.

A number of people we know have recently had babies and we're thrilled for them! It's a special and amazing miracle. One that so many take for granted.
I wish for them all that the 'normality' so many go into pregnancy and parenting, the blissful state continues unabated and undented.
I know I went into W's pregnancy like that and it is one of those things I think mothers especially, mourn after a premature birth - even if the baby comes out relatively unscathed, especially if you go on to have more children.
You know crap can happen and you no longer think it only happens to certain kinds of people. That blissful state no longer exists and you will never get it back.

So that's one kind of see-saw life has thrown at us lately.

Another is all N.

As those who have read this blog for a while know N has major eating issues. While I knew it was serious it still hurt when I saw, in print, in a paed's letter, the words food aversion.
We had got to the point, just before Christmas where the kids' surgeon had very very reluctantly agreed to put a g-tube in Nicholas so we could try to tackle the eat problems and get him off his Fortisip habit - now a 5 bottle a day habit.

The proposed date for surgery was today.

Obviously it's passed without surgery.
That light at the end of the tunnel has been snatched away - yet again.

What happened was the surgeon succeeded where the psych had failed and got a doctor who has extra experience in eating disorders to agree to see him.
He told me he'd managed that near miracle between Christmas and New Year.
And a week ago today he saw this doc for the first time.

I'm not going to go into huge detail here as we're still comprehending where we are at and are on a fact-finding mission at the moment, just as she is.
The next appointment in 2 weeks time when we fire all our detailed questions to her will be as interesting as discovering what she has found out about N and us.
But the almighty upshot is she thinks we won't crack this without admitting to the hospital for about 3 months.

This will mean handing him over completely to a large extent - not just health, development - mental and physical, but also educational because over those 3 months, assuming he makes the required progress and doesn't back track at all, he will be living in the hospital. He will come home for ever very slowly extending periods but will continue to sleep and essentially live in the hospital - coming home for meal and snack times and going back in between.

Quite apart from what this may do for/to N, this has profound impacts for the rest of the family - totally upsetting W and T's own education, T's own health needs, but also seriously disrupting P's ability to work. Never mind the costs of all the running around combined with lack of income now that P is self-employed and if he's not working he's not earning.

Our only real part to play in dealing with N's eating will be weekly team meetings, and chats if we happen to be there at the times the relevant staff are.

And so we will be asking searching questions to find out about the programme and how good a fit it is for N.
There are a couple of other options which we can explore before we go back to the surgical option but one of those I seriously doubt we'd manage to sort out and the other is a very long shot and more of the same anyway.

So, in the 3 weeks we have before we see this doc again we are throwing our all into one last ditch effort - we being P and I really.
N has started with good intend but this is hugely difficult for him and much bigger that him.
We are breaking all the rules I ever made.
I feel awful doing it but if we are to keep from major disruption and potentially, maybe curing N, but definitely doing damage to the family socially, emotionally and financially which will take years to recover from then we have to try.

And that is how I now find myself insisting a child stay at the table until he has finished his meal completely no matter what he throws (occasionally literally) at me.
I always swore I would never do this, that food is aversive enough but at least he's happy to sit with us, that you do not - EVER - do things to entrench the negative and feared aspects of food.
But this is the only thing that we haven't tried yet, and what, as far as I can gather, they would be doing in the hospital anyway.

We have extensive star charts - he can earn up to 2 stars just for drinking his Fortisip so unless something goes horribly wrong he shouldn't have a day where he gets nothing. If he collects a star for every meal and snack for that day he gets a $1 in a jar which he can see from the table as a continuing incentive.
The rules laid down for achieving a star are written out and put on the wall where he can see it at the table so he's not arguing with us - it's simply the rules.

On Tuesday we started this 'toughlove' approach - it didn't matter what he said or did, he was ignored but kept at the table.
At lunch, the start of this, he took 1 1/2 hours to eat 2/3 of a slice of bread and peanut butter.
When he finally finished I went down to P's office and he commented I looked shattered.

But that was a walk in the park compared to dinner - 2 hrs and 40 mins over 80g of nachos. Screaming, yelling, tears, threats to throw up - including retching and apparently throwing up into his mouth twice.
It was horrendous.
It was so difficult to remain calm, not scream at him - or give in.
But there is so much at stake here.

Wednesday he actually earnt $1 for the first time in a week.

P kept saying how excited he was, that this time we've really cracked it and it'll be different now. I was counselling caution - I've been burnt too many times by one day wonder N. He specialises in sustaining something for even as long as 2 weeks and then relapsing.

And so P was upset today - 30 mins to eat 20g of ricies for breakfast, 1 hour to eat 1 boiled egg and 1/4 of a slice of toast and 57 mins to eat 100g of pasta and sauce.
The only stickers earnt were for drinking a fortisip for morning and afternoon tea.

I know that when you are trying to change an undesirable behaviour kids will intensify before they decrease - they test your resolve, make sure you are serious.

The figures are decreasing but I can't hope yet.
We have 2 more weeks before we have to go back to this specialist so that's time to test Mr 2 week wonder and see how we are truly going.

But it breaks my heart to do this this way. It goes counter to everything I do in my parenting practice. To hand a box of tissues to your sobbing child but refuse to let them leave the table - it feels so wrong.

I wish there was a gentler way but he's had a year of psych help and only got worse.
This has to be gentler than surgery.
I just hope with all my heart I'm actually not entrenching behaviours, adding extra negative stimuli and actually making the whole issue infinitely worse.

I don't like 'breaking' a child. But if we don't solve this then his whole future is 'broken'.

So wish me strength, determination and a stronger will to fight than N's not to eat.

He is truly scared, he's scared when you talk about food, visibly anxious when you start asking what his problem is, this really is beyond his choice range.
I can only hope that by making not eating a more aversive situation than eating he will eat.
But I have been shocked - watching him I have seen he pockets food in his cheeks and then doesn't seem to remember how to move it round and control it with his tongue. I'm hoping someone can wave a magic wand on that front and either he'll remember by muscle memory or they'll find us a SLT specialising in eating.

My gut screams this isn't the way.
But as far as I can see this is what they would do in hospital - and they reckon they'd get him ready for a meal and snack at home after about 2 weeks in hospital.
And so I have another 2 to see if it'd actually work.
This is the only thing we HAVEN'T tried so far.
And still my gut screams no.
But, like dealing with child tantrums, if you cave in after a bit then next time you come to crack it it will only be harder still - so we must continue.

Please send me wishes this works, strength to continue - and resilience for both N and I that the collateral damage, of which there has already been some, won't significantly damage our relationship.
But most of all, hope with me that my pretty well tuned parental gut instinct is wrong this time!

Navel gazing - or THAT time of year again...

And so how many of you actually make New Year's Resolutions?
And more significantly how many actually manage to keep them?

Looking back on 2010 I realised that in fact we leave behind a whole decade tomorrow.
What a decade it's been!

I've had 2 children in the past decade, run the gauntlet of multiple health problems with them all, had special needs diagnosed in all of them and technically got them all to school age!
At least 2 of them have had a crack at dying but we've managed to pull them back, we've had 6 surgeries - soon to be 7 and I've developed my own filing system to keep all the medical info straight and things progressing.

The kids have lost 4 great grandparents, 2 great uncles and 2 cousins.

2 cousins have also been born in that decade.

It's been an amazing, frustrating, scary, wonderful, full on decade.
I've learnt and changed so much from a mum of one little 18 month old to where I am now. My parenting, management skills, medical skills have changed out of sight.
The path we have walked has been mindblowing.

And so I also look back on this current year just ending.
2005 was not a kind year to us with so many issues with T.

2009 started and ended with surgery for kids.

2010 started well and I went into it positively and hopefully.
My own resolutions of 2010 being the year where we got T off the pump and N eating as well looked reasonable aspirations. We had the medical support people in place, we were finally totally reflux free thanks to W's surgery in Dec 2009.

And the pressures just grew and grew.

Late April/early May T started to have his eating difficulties and by July he was seeing the surgeon again.
July we started this, by now completely ridiculous, litany of deaths.
Other family pressures grew and grew.
T continued to deteriorate and N started circling the drain as well.
W has had a few issues but nothing major really - thank heavens for that or some of my parenting confidence would have been significantly shaken!

And so where am I on my New Year's Resolutions for 2010?

Well, far from having his "Bye Bye pump party" T is totally dependent and the freedom from home and his blossoming energy levels that we enjoyed for a year have vanished.

Far from having N eating normally and being free from those wretched purple Fortisip lids which pop up everywhere and those plastic straw wrappers which embed themselves in my washing machine, stick to people's feet and travel the length and breadth of the house we are now at the point of surgery to put a tube in.
So epic fail on those two aims!

There were the standard aims of losing weight - which I did only to put it back on with very late nights, sleep deprivation and chocolate cravings.

I also had the aim of putting the best of the kids' photos onto Flickr and setting up albums for each of them so you can find the pics quickly and easily. I have achieved about 1/3rd of that aim!

And so what are my aims and aspirations for 2011?

Fewer doctors would be a lovely start but exceedingly unlikely! So better not aim for that one!!

I do want to get all the pictures backed up. So that will continue.

By this time next year I do want to have made significant strides in N's eating.
I'm under no allusions that this is a very long term project and will probably take a couple of years to achieve. Even if it had gone according to plan with T we would only now, 2 years post op, be comfortable in taking the tube out I think.
But if we're taking this drastic step then we need to see movement.

By this time next year I want, no need, a diagnosis as to what's going on for T and a medical plan to get us back on track - and to be progressing down said track.
We have managed to maintain eating skills so far and certainly maintain interest and desire to eat so once he can, yet again do it without pain we shouldn't have too hard a road to regain the lost ground.

Personally - better health and finances would be good. I still lust after an ipad - would make things masses easier keeping the kids' medical records sorted, food diaries etc if I could do without clear files and paper records. But I'd like to be at the point where I lust after one because it's a cool thing to play with! Instead of lugging folders to specialist appts!

But most of all I want a happier year, fewer downs and more highs for my immediate and extended families.
2010 has been a roller coaster year to rival the NICU - calm and control is where I aim for 2011!

Wishing you all a merry go round year rather than a roller coaster!

Collective noun for mass death, destruction and loss?

This post is one that has been filtering through in my mind for a while now but hopefully isn't too rambling!

People who know us know we have had an incredibly tough month this month with twin nieces being born and dying as well as an uncle dying rather more rapidly than expected. Burying 3 loved ones the week before Christmas does NOT make a good run up for the kids!

It leaves you will a lot to process too - too much emotion to do in any kind of progressive way I think, just a kind of total blanket of grief which keeps jumping out and putting it's arms around you at unexpected times. You don't really know what sparked it, or even which person you are crying for - you just are.

With the twins there is so much mixed in with the grief - they fell victim to the evils of prematurity. There but for the grace of God go we.
Our own children's lives have been at stake a number of times over the years.
We may have been on the wrong side of the stats many many times in our parenting lives but we were on the right side on the most crucial stat of all.

Watching the pain and terror of someone we care about riding the NICU roller coaster brought back strong memories. While we never rode it in such intensity, with such a drawnout life and death struggle we have ridden it unrelentingly over the years instead.

But thrown in with all of this is other grief, other loss.
W had an assessment done recently and the results came through in the middle of the maelstrom. It is very clear from this that going back to a mainstream school will never be on the cards. His need/deficit profile is such that for him to have any chance of succeeding in life that he will need very specific conditions - and thankfully we can largely supply them in the family environment.
But once places re-open next year we will have to start the process of getting him assessed by the Special Education psychs and getting paperwork in order for an enrollment in Correspondence School.

In addition to this we had another appointment with the kids' paed surgeon - largely discussing N this time but touching on T too.
The last appointment we had with the surgeon he had changed his mind on the approach to N's eating difficulties and was not going to place the promised tube.
In the interval between appointments we saw the endocrinologists at the hospital and had various tests done. Other than some bloods which were sent to another part of NZ thanks to our lab techs being on strike and the results not being back nearly a month after the blood draw - all came out fine.
We personally had written a letter to both the paed and surgeon and had W's key worker write a letter about what she has seen of N's behaviour when eating and not eating. The two combined, added to by the endocrinologist letter saying tube feeding would be a reasonable option to deal with the current situation - were enough to cause a change of plan.
N is now to have surgery on 10 Feb.

The surgeon is clearly unhappy and had clearly wanted to avoid it.
I don't like him being unhappy, I don't like essentially forcing someone into something, particularly one as drastic as this and most of all I don't like needing to do this either. If there were any other way left I'd grab it with both hands before trying this. I HATE the fact we've had to throw in the towel, lost the battle, that reflux history and feeding difficulties have triumphed.
The surgeon is of the opinion if we just wait long enough it'll all come out in the wash. We have waited and tried everything for 3 years and it has now got to the point that the behavioural, social and learning impacts and the added stress to the whole family are such that yes, waiting might get us there in the end but the cost will be too high.

I grieve this loss. As a parent, right from the very start of your child's life your role is to nurture them, help them grow and thrive. Feed them physically, emotionally and mentally. We, as a society, use food to show love, celebrate special occasions, to support one another through hard times.
When you can't feed your child it hurts - badly.
Then you start collecting titles like Failure To Thrive and the sense of failure is compounded.

People talk about artificial feeding - meaning bottles and formula. There is nothing much more artificial than connecting tubes to your child's stomach and feeding them that way.

I love and loathe T's tube in pretty much equal part. I love what it has enabled T to achieve in the nearly 2 years since he got it but I hate that he still needs it, that he needed it at all, and that it may be part of his current problems but that it's, in the surgeon's words - highly dangerous to contemplate removing it now as he's so dependent due to the other GI issues.

The idea we'll be juggling two on tubes, two lots to hook up each night, two lots of supplies to keep straight makes me feel so incredibly sad.
But I can only look forward to seeing the improvements and added learning for N that we saw with T.

And so there are many forms of grief, many ways your vision and life plans can be altered and changed, many forms of loss for your child not just having them actually die.
There are different forms of the rollercoaster and the long version is no less intense and painful than the short. The long version though does have increased chances for those fleeting moments of achievement, 'normality' and peace.
Those moments are what we have to hang on to, to give the strength, courage and perseverance to keep on, fight the next fight, jump the next hoop, make the next plan.

I would like to close this post with what I wanted to say at the twins' funeral.
I couldn't speak then, in large part because T was asleep against me at the time. It is yet another example of our life and our losses that a 5 1/2 year old didn't have the stamina that day for an hour long funeral in the middle of the afternoon (we'd delayed his tube feed due to timing and he clearly can't handle that.)

Names of course are removed.

J and M,
Over the past few weeks I've worked hard to rationalise and explain these events to my boys. But there is no way really - it's totally and completely unfair.

My mind keeps going to the concept of love being stronger than death - we all know from experience that we can continue to love those no longer with us. The grave is no impediment to that.
But if love could conquer death then we wouldn't be here today.

But the evil reach of prematurity is long and unrelenting. S and A can now be at rest.

If I could have waved a wand to stop the roller coaster and rewind time I'd have done that just as fast for you as I would for my boys.

J and M - remember that regardless of what has happened you are parents.
You may not have the day to day duties you dreamed of but you were, are and always will be parents.

J - it was a privilege to watch you grow into a mothering role in what has to be the most foreign and alien environment in the world. I was privileged to be there when you got to touch S for the first time and honoured when you invited me to touch A. The memory of how she stretched out to continue contact with my finger as I took it away will be treasured for ever.

Rest assured that none of us will forget S and A - my boys already talk of their angel cousins.

S and A - so tiny, so loved, so missed.

You know you are a Prem Parent when...

- you have your GP on speed dial on the home phone and it's one of the first in your mobile!

- you are on first name basis with the GP's receptionist.

- you know the receptionist at the hospital paed outpatients by name.

- you get recognised by hospital nurses and theatre staff.

- you get lost in a mall carpark but can navigate round a hospital like you have an inbuilt GPS.

- you have your local pharmacy number in your phone too!

- your calendar has more medical appointments than playdates.

- in discussing your child who is crying in pain and saying he can't breathe when he lies down, you comment he's clearly moving air so we don't need an ambulance for THAT!

- you know your child's own normal temperature - W runs a bit low, N runs a bit hot and T's in the middle!

- your Christmas preparations have making sure you have repeats dispensed, a final weigh in with the GP booked, and that you have about a month's worth of specialised formulas in stock because of the Christmas close down at pharmaceutical warehouses on the top of your list - oh yeah and presents had better be organised...

- when you have the re-opening date of your GP written on the calendar - and the first appt of the New Year already booked.

- when you know the coming year will simply start the medical round about all over again...

Just so tired...

Well and here we are again.
I remain convinced that if my life was written into a soap opera plot the writers would be told that it couldn't possibly be screened as it's simply too unbelievable!

My family and I must have truly annoyed some cosmic being this year - death and disaster have flooded in in the last few months.
On top of P's grandfather dying in July in a traffic crash we now have my uncle rapidly approaching death. In the same week he has been deteriorating rapidly we have had the paradoxical situation of the boys finally getting cousins - W is 12 so it's been a long time in coming!
But it's paradoxical in that the twins are very very small, very premature and even though they are now 2 days old and doing surprisingly well their survival will remain in doubt for some time to come.

I've found witnessing the dramas and emotions of a premature birth from the side lines very difficult. It's brought up a huge number of emotions for me and, knowing what I do about the path ahead for my sister in law and brother in law, and their girls, I wish with all my heart I could protect them, stop this in it's tracks, somehow shield them from all I know is heading their way.
There is so much joy in the babies' arrival, and yet so much sadness in the future and even their current circumstances. They too will be running an ultra marathon, after they step off the roller coaster of the NICU.

But whatever support I can give them, help as they learn to parent in the parallel universe of the NICU, support as the shoes drop later, encouragement to get involved with Early Intervention BEFORE they drop too far behind, friendship in the different parenting life they will be leading - anything I can offer and give in some small way makes our own path more meaningful, have slightly more point.

Just to add to the fun we have had problems with leaking pipes at home over the past month or so and today one of the mends burst! That's drama enough for any household but with T's daytime tube feeds we have to have water and so has made life more challenging on 3 separate occasions so far.

I discovered a pile of photos in my clearing up last night, some of the boys with P's grandfather, some from this time last year, T's birthday and slightly more current. I was saddened reviewing the photos of P's grandfather but shocked by the clear deterioration in T. He has become so much thinner in the face and you can see tiredness and pain in his eyes that had been such a permanent fixture until after his surgery. Typically the discovery of the photos has coincided with about 3 days of significant pain for T. He has regularly been crying inconsolably and at the slightest provocation. When I ask him what's wrong you alternately get the answer "I don't know!" or "I just hurt all over!"
To say it's heartbreaking is an understatement.

I did have a call from his surgeon today to explain some confusion over an appointment he'd said would happen before Christmas and now won't be able to happen until Feb next year. However he has discussed his case with the gastroenterologist and they have come up with a couple of drugs to try over the Christmas/New Year period. He has also said when he calls to tell me which drug we'll try he will also organise to book T in for an operation to move his feeding tube to a new site in the hopes that might relief some of the pain. This was an idea I'd floated at the last appointment and he was considering - so obviously he's decided that it makes sense.

I'm pleased he's taking action and that there are a few things we can try but my heart sinks at the prospect of more surgery for T. This will be his 4th general anaesthetic in the space of 2 years or there abouts. It will also be my 7th time to take a kid to theatre in 3 and a half years.
But it's all better than the other reality niggling away at all of us - if nothing works then no one has any answers and the probability is that T may be left unable to eat solid food without extreme pain for the rest of his life.

There is also the prospect of N finally getting some help for his eating if we succeed in our final push to persuade the surgeon back into placing a tube for him too. That will be yet another surgery - not a gleeful prospect.
We saw an endocrinologist for N yesterday - a very thorough appointment which took over an hour - and they were running 40 mins late too!
N has had some bloods and an x-ray for bone age done but no one expects any problems with those. The endocrinologist did say, in contemplating our predicament with N, that in his view placing a gastrostomy would be a 'reasonable step to take.'
He did say he would write to the surgeon with his findings and include that opinion and so hopefully that combined with a detailed but clear letter I have written and a letter from W's therapist about what she has noticed in N's behaviour when he does and doesn't eat - we may be able to persuade him back into the surgery.

But I am tired, tired of the stresses of the behaviours, the crying, watching my child in pain.

I'm tired of guiding the children through life and death situations all the while processing it myself.

I'm tired of the appointments, the record keeping, lugging the file I keep on each child to the appointments.

I'm tired of no real answers to the problems.

I'm tired of being a nurse to the kids, being a therapist to the kids, of doling out the meds, doing the cleaning, sterilizing, washing, of doing the research and careful thinking to work with the doctors and specialists.

I'm tired of worrying about the money, the added costs of formulas, specially cooked and pureed food esp for T, the supply of dvds for him to make his feeds a little more bearable.

I'm tired of the chronic, no end in sight, lack of sleep.

I'm tired of the deep, inground worry for their futures, where they are headed and what and how right the next step is medically, socially, developmentally, emotionally.

I watch other parents and while, I'm sure they worry about their kids and have concerns for them - I just wish, just for a short while I could have their lives, where their kid's biggest worry is what's in their lunchbox for lunch, if their friend will be at school today, if they've actually learnt their spelling words.
When they don't have the GP on speed dial, their calendar is full of play dates not hospital appointments and the supermarket shop doesn't include a trip to the chemist next door to get the month's worth of formula, high cal feeds and gauze.
I'm sure juggling a normal household isn't a walk in the park, and I'm sure if I got to do that then I'd very rapidly complain about the small details too - but from the outside, looking in, it just looks so much simpler.