You can reach Rachael using her email address:  rachael.hyde@cognitive-edge.com

CE has had a consulting business ever since its inception.  In our previous life as Cynefin inside IBM, we were expected to use our methods in engagements with clients.  Nothing has changed!

Occasionally clients will approach us directly for work and make it clear that they want designated CE personnel on these engagements.  This business helps us test out new ideas and gives us much needed revenue for more investments.  Typically we only accept strategic or research-based engagements, and if the work is tendered publicly then we don't bid.

More significantly though, we are getting an increasing load from practitioners around the world who need to access experienced practitioners.  We want to improve the service to these people by increasing the bandwidth of CE to assist them directly.

So we'll continue to be on the look-out for good people - keep watching for more additions soon.

For some reason he then gave the example of Britain and how graciousness had emerged there over centuries  ... why he chose the UK is beyond me, surely Australia would have been a better example?  ;-)

However since I moved out to what counts as 'surburbia' in Singapore, I've seen another side.  I live very close to a major road which is famous for bak kut teh (or pork rib soup) and so is lively 24 hours a day.  As a result, we get a lot of visitors to our street.  These visitors have absolutely no concern dumping whatever rubbish in their car onto the roadside, despite the presence of bins in front of each house.  The worse offenders (confirmed by the Straits Times today) are young men who smoke, who spend their time polluting the air and similarly seem to have no compunction polluting the streets with their butts.

The Straits Times advocates the usual solutions - more government inspectors and higher fines for litterers.  This is often the knee jerk reaction by governments and media everywhere to any problem of public disobedience.  Indeed Singapore has had some (numerical) success with such approaches - according to the numbers, fines dispensed for littering went from 3800 in 2005 to 21200 last year.  However, the littering remains as prevalent.  Some of the proposed solutions went even further - like blacklisting litterers from government jobs and big brother style omnipresent CCTV to catch litterbugs!

I think policymakers need to think a little differently about this.  I believe the problem is that people subject to a high degree of control will rebel as soon as they sense an opportunity where they won't be caught.  Singapore can't rely on the government to solve this problem - the citizens themselves need to solve it - and here is where MM's gracious society comes in.  Singapore hasn't developed a culture of graciousness because often the government hasn't given society the space it needs to set its own self-managing boundaries and norms of behaviours.

Admittedly, I can't be 100% sure what MM meant in his mind by the term "gracious society":  the term could refer to a nation which is not belligerent and plays a responsible role in the world; or, it could mean a country in which the people are considerate and in a hundred little ways each day interact in ways which show respect to one another.  I've taken the latter rather than the former for this post.  I don't think this means a gracious society is all about eliminating littering but I'll say its a small part of it.

It can't be socially acceptable to litter.  Citizens need to admonish one another for not respecting the environment.  In other countries, I've seen irate drivers honk horns and harass smokers who dump butts, but never here.  Girlfriends should not stand for litterbug boyfriends.  Mothers need to set the example for children.  A big part of the issue is that many Singaporeans lead "maid-assisted lives" - most grow up in households with domestic help from neighbouring countries and so aren't taught from a young age to clean up after themselves.  Armies of cleaners scour the areas in the city to keep them spotless for tourists.

Time for some safe-fail interventions into society to seed new habits - less reliance please on a control-based approach of government programmes, fines and inspectors.  Singapore needs to accelerate its emergence of graciousness, as it has so successfully accelerated its economic development!

I think its too early to say that he should be elected - I'm looking for to seeing how he performs in a presidential campaign, should he get the chance - but I have to say that Barack Obama is possibly the most gifted public speaker I have seen in politics in my time.

I first saw him speak at the Democratic Convention in 2004, after reading an article on him in the Economist earlier in the year (unfortunately only viewable with a subscription!).  I was sitting in a hotel room in India preparing for the day and was lucky enough to catch it - listening to that speech made the hairs stand up on the back of my neck.

His Iowa speech is in a similar, rarified class.  Impressive ...

2.  Identical twins are identical in appearance only.  If you swaddle both kids and present only one of them to me, i have no better than a 50/50 chance of guessing which one it is ... but in personality, demeanour and habits we can already see that they are dramatically different individuals.

3.  Dave tells me that people cannot tolerate the chaotic domain in the Cynefin framework and will act to exit the space in the quickest way feasible, but I've learned that only applies to adults.  Newborns seem happy to exist there indefinitely!

Apologies for the infrequent posting.  Life has moved well and truly beyond my control and night and day have lost all meaning!  Both girls have been doing very well, putting on plenty of weight and are very prompt in reminding mum and dad that it is feeding time.  We're onto seven feeds a day (having started at eight, we realised we wouldn't make xmas unless we could get a longer stretch of time in there somewhere between feeds).

Next week we're off to the doc for a check-up, but we're not anticipating any issues.

Over Tuesday and Wednesday, both girls were put through a series of scans to check on possible risks associated with their prematurity.  These included eye tests (to further check for ROP) and hearing tests.  Georgia also had a cranial ultrasound to check on the state of the intraventricular hemorrhage, or bleeding on the brain.  The great news was that every single test came back clear for both babies.  Tessa will have her cranial ultrasound next week but we have no reason to think her result will be any different to Georgia’s.

So with green lights all the way, Wednesday truly was the end of the beginning.  We said our farewells to the staff at Raffles and packed Tessa (and Georgia, who had accompanied us on the trip to complete her tests) into a taxi to head home.  How did we feel?  Exhausted, exhilarated, overwhelmed, apprehensive and a little sad to have said goodbye to the hospital staff to whom we have became close over the seven weeks.

What’s in front of us?  A lot of sleepless nights!  The girls are bottle-fed breast milk on a strict three-hourly regimen.  It would be impossible for either Stace or me to do it alone (one baby screaming while you’re trying to feed the other …) so we do all the feeds together, at 9pm / midnight / 3am and 6am.  Because of the girls’ age, the doctor expects we’ll be on a three hour schedule until Christmas, when we can stretch it to three and a half hours … we’re sure you’re envious.

Next week we take Tess back for her check up and cranial ultrasound (Georgia did so well in her check up that she’s been given three weeks until her next).  She’ll also have an echocardiogram to check if her PDA has well and truly closed.

We wonder how we’ll ever show our appreciation to the staff at Raffles Hospital.  They have been everything we could have wanted them to be.  Our neonatologist, Dr Tan Mein Chuen, has anticipated everything along the way and his dedication has been inspiring.  Over the seven weeks Tessa was in the NICU, he visited her every single day – with the exception of three days early on, when he had to go to a medical conference.  The nurses were reassuring, empathetic and wonderfully personable.  We got to know them all very well over long hours in the NICU – when we left the hospital there were a few tears!  We’re looking forward to staying in touch to share the girls’ progress with them over the coming years.

Finally thanks to everyone for the emails and phone calls ... it became an emotional release to sit and write these posts and I never thought so many people would read them.  The positive feedback gave a little more motivation to continue posting and I hope that one day the girls will be able to read them and understand more about their beginnings.  I also hope that maybe one day they may be useful to another couple with a similar experience - a story with a happy ending can make a big difference on some days.

The good news is that Georgia is home, and Tessa will be joining her sister at home on Wednesday this week.  Things are not quite as apocalyptic as the title of this post may suggest!  Although managing two newborns I expect will feel a little like the end of the world ...

It’s a funny thing – since we had little Georgia at home, we’ve been proudly showing her off on Skype video calls with family and friends all over the world (as you do) – inevitably the first natural reaction is “oh, she is so small!”.  And she is small – the average weight of a newborn baby is about 7 lbs, or 3.2 kg.  So even now, Georgia at 2.09 kg is probably the smallest baby most people have seen.  Its hard to believe though that she is about 60% bigger now than when she was born.

Meanwhile Tessa has been doing very well.  Last Tuesday she downgraded her humidicrib to a more modest nursery cot, which was a significant milestone.  She hit the magic 1.8kg mark on the same day and they slowly introduced bottle feeds.  Due to her setback with her PDA re-opening for the third time the nursing staff had to be a little more cautious with Tessa, but the consensus by the end of the week was that she took to bottles even better than Georgia.  By yesterday (Sunday) she crossed 2kg and was completely feeding from the bottle, meaning that she had hit all the prerequisites for discharge.  Given her PDA though the doctors decided to keep her to this coming Wednesday, when we’ll be able to reunite the girls.

Taking Georgia home was bittersweet as we had to separate her from Tessa for the first time.  It was probably one of the most difficult moments thus far.  Stacey and I were so excited to finally be bringing a baby home, but it has been emotionally hard since.  Daily, one of us will go to the hospital to visit Tess while the other stays to look after Georgia.  Tess is in the nursery (she moved from the NICU yesterday) amidst all the other newborns who receive 24 hours of attention from proud new parents, but the best we can do is cuddle for an hour or two because we need to get home to help the other (all parents know what managing a first baby is like) or to work.  Thankfully, this all comes to an end on Wednesday, when after seven difficult weeks, we’ll finally get both babies home.

This week began with the usual mixed bag of news - I'm happy to tell you this time it has ended on a positive note .. (touch wood!).

But talk about mixed emotions.  Georgia was continuing to grow, and on the same day for the first time she tried bottle feeding (only 5 mLs but hey you have to start somewhere!).  As I mentioned previously, the staff all expected that she would lose weight as a result of the extra effort - we'd have to wait to the next day to see if this was the case.

Tuesday was much like Monday.  Tessa's PDA was confirmed with the echocardiogram.  This time we learned that her PDA was 2.2mm  in diameter - the first time it had opened, the hole was 2.8mm, whereas the second was 2.6mm - maybe this was progress?  Because the Indocin was no longer an option, the doc's advice was to try to let her grow and close it herself.  Apparently prem babies with PDAs have a 60-80% chance of closing it themselves, if drugs are not an option.

In contrast, the news on Georgia was again good - despite the expectation that she would lose weight, she actually put on 40g overnight.  By Tuesday afernoon she was taking a whole feed (22 mL) in a bottle feed, and doing three of her 12 feeds through the bottle.

But the big news of Tuesday was that both babies had their ROP examination and had sailed through - the first time they had passed an exam!  There was no damage to their eyesight as a result of the oxygen provided early in their life, although they need to be re-examined in two weeks.  We learned though that because they are premature, there is a higher than normal possibility of short-sightedness - this of course though is treatable.

Wednesday and Thursday were (thankfully) quiet days.  Georgia graduated from her humidicrib (which the nurses called her 'condo') and moved into a baby cot.  The cot was nothing special - its a plastic tub on wheels that all full-term babies get put into in the hospital - but we were so proud you would have thought she had bought her first car.  By Thursday night, Stacey and I were wiped out.  Throughout this experience, we've just pushed and pushed ourselves, to get on with life but also to spend the maximum time with the girls in the hospital, and every now and then exhaustion just hits and we collapse.  Thursday was one of those days.

With hindsight it was lucky we got some sleep, because Friday was a big day.  Dr Tan told us that Georgia was progressing so well that she would be home with us by the end of the next week.  Oddly, for parents that had spent the last five weeks waiting and waiting for this news, it came as a shock and suddenly doubts flooded in - were we ready?  Originally I told you there were two criteria for coming home - 2kg and 35 weeks.  Over time, the staff at the hospital had pointed out a third.  The girls need to be feeding from a bottle at three hourly intervals, and completing these feeds within 20 minutes.  Stacey and I also needed to demonstrate our competence to the staff in feeding and caring for the babies - they are more careful with parents of premature than full-term babies, because these babies have less-developed systems and so are more vulnerable in every sense.  We went home, our heads swimming with the idea that our little girls might be coming to an end of this first, tough phase of what we hope will be happy lives.

By Saturday, Georgia moved to three hourly feeds starting at 8am.  Her feeding tube was removed at 5pm on that afternoon because she was taking all her feeds by bottle for the first time, and as of this afternoon had still not been reinserted.  Dr Tan told us that discharge day had now moved forward to Wednesday - our swimming minds started to paddle a little bit harder, and we rushed out to buy all the things we realised we suddenly needed.

Today (Sunday) we went in and the intention was for me to prove my competence at feeding (Stacey gets her chance tomorrow).  Georgia had moved up to 37 mLs every three hours.  The first bottle from me at the 11am feed took nearly an hour, and I think secretly the nurses thought they may be stuck with Georgia for good.  Happily the second bottle I fed at 2pm took 8 minutes - I have a sneaking suspicion that Georgia was messing with me for the first feed - that doesn't bode well for when she gets older!

Meanwhile Tess has been showing signs of instinctive sucking when she is fed.  Today the nurses starting giving her 1 mL or so of milk, to taste and to swallow, in order to get her ready for a move to bottle feeding as soon as she crosses 1.8kg.  Tess put on 200g over the week, and now weighs 1.75kg.  Georgia put on 220g and weighs 1.97kg.  In terms of weight gain over the last two weeks, Georgia has averaged 35g daily, while Tessa has averaged over 22g.  The doctors have been been very happy indeed with the rate of growth of both babies.

So the next week will be another busy one.  Georgia will be coming home on Wednesday – I’ll be taking a couple days off at the end of the week to stay at home to be ‘dad’, so if you email me and don't get a response, don't worry I'll get around to it! 

Part of our trepidation of bringing Georgia home comes from the knowledge that it will make things that little bit more complicated.  Two babies in the NICU has been tough, and we expect that two newborns at home will also be tough.  However managing the week or so of having a newborn at home with a second in the NICU will be very difficult, logistically and emotionally.

Tessa will be getting bigger and moving to bottle feeding, hopefully sometime in the next two days.  She should be graduating from her ‘condo’ to a normal baby cot too in the next few days.  Her PDA remains open but the doctors are prepared to discharge her if it is not having any negative effects on her breathing, with regular monitoring.  The doctors and nurses think she could join Georgia in her new home in the next ten days or so.

Tomorrow Raffles Hospital is having an Infection Control Day – all the nursing staff from the various departments have to prepare a song and dance about one aspect of controlling infection.  The maternity unit staff have a song and dance about proper washing of your hands, to the tune of ‘My Humps’ by the Black Eyed Peas (“my hands, my hands my hands my hands …”).  We found this out when the nursery was erupting in laughter as the predominantly Filipina nursing staff excitedly got their song and dance routine down pat.  Stacey even got a special invitation to go along tomorrow to watch the performance, and she’s threatened to put their efforts on YouTube where it could match the popularity of the Filipino dancing prisoners.  There is heavy press constantly about superbugs in the US and UK, but I wonder how an organised education event, requiring karaoke efforts from staff that they rehearse in their own time, would go down amongst hospitals in a Western country?

Tessa & Georgia hit one month yesterday and the last week was in some ways just so reflective of our journey over the last month as a whole - an emotional rollercoaster of extreme ups and downs ..

On Monday we headed to the NICU to check on her progress.  Tess was back on the Indocin - she had completed the first dose overnight and was due the second dose over the course of the day.  It was horrible to see our little girl hooked up to the drips again - we thought we were through that - but we knew how necessary it was.  Dr Tan also reduced her feeds, from 20 mL every two hours to 12 mL.  The idea here was to reduce the fluids in her body, in the hope it would reduce the pressure on her lungs.  The last thing we wanted was for Tess to return to the CPAP.

On the same day, Stacey began kangaroo care with Georgia, which involves skin-to-skin contact between mum and baby to help stimulate the baby's growth (I've put in a couple photos on this post).  I cannot find words to explain what this meant to Stace and me.  For a month we'd been watching our little kids in the capable hands of the staff at Raffles Hospital, but feeling helpless throughout - there was very little we could do to help them, and I think every parent understands how that would feel.  Kangaroo care offers parents a chance to get directly involved in supporting the progress of their babies, and after a week I am a strong advocate.  One of our doctors is less keen on account that he is concerned about the oxygen saturation of the babies, but overall I can't fault it if it is timed appropriately.

As soon as it began it was clear Georgia was loving the experience.  She was cooing and nestling, and this behavour was understandable.  For a month these kids have been lying in humidicribs, and while the nursing staff have been fantastic and hands on in caring for them, they have received very little of the human touch that most newborns receive.  For the first time they have sustained contact with their mother, and it is absolutely apparent that they know Stacey is the one holding them.  Amazing stuff.  Every day since, Georgia has enjoyed time with mum in k-care (as we call it) - over that time frame she has put on 270g, and now weighs 1.75kg.  Even if the kangaroo care had negligible effect on this growth (and there are plenty of contributing factors, lets face it) the positive effect it has for mum alone is worth it.

However, while Georgia was benefiting from the kangaroo care, Tess was still on her Indocin medication through the drip which meant she couldn't join in.  On Tuesday Stacey headed in, hoping to hear that the course was finished and all was well, but that wasn't the case.  The doctor told Stacey that overnight there had been evidence of internal bleeding in Tessa's intestines - different from the gastric bleeding that Georgia had suffered from the earlier treatment, and not what he expected.  He feared it was Necrotizing Enterocolitis (or NEC), an infection in the intestine - if it was, he advised that would be bad indeed and could even be fatal for Tess.  Stace called me with the news in tears and once again I headed for the internet for a speed course in yet another frightening medical condition.  All food to Tessa had been stopped immediately which of course halted all growth.

The only bit of grim humour in my day came when I found this site, listing all the common health problems for premmie babies - our little Tessa seemed intent on working her way through the list, checking everything off, some of them twice ...

For the first time in three days, Wednesday brought better news.  X-rays had confirmed Tess didn't appear to have NEC - and Stacey and I began to breathe easier.  The bleeding was likely to have been caused by the Indocin, which meant it should repair itself over time.  Tess was cranky like we had never seen her - she hadn't eaten in a two days or so which explained it!  But the doctors planned to bring her back to food on Thursday if there was no more evidence of blood in her stools.

By Thursday morning, Tessa was back on her milk.  To ease her into it and to check if her intestines had repaired, they began her on 3 mL every two hours (compared to the 20 mL she was on before Indocin treatment).  Once it was apparent she was handling that, they increased it to 6 mL, and then 9 mL for the 2am feed on Friday morning.  Our little kid was back on track.

By Friday she was well enough to be taken off the drip, and to join Georgia in the kangaroo care (the other photo you can see in the post, with the two of them with Stacey - its a tight fit!).  This was important to us because we wanted her to get the benefits of the skin-to-skin contact, and she needs to re-bond with her sister and with mum.  As was the case with Georgia, Tessa immediately settled with Stace.  I'd love to tell you that there was recognition from each of them of the other, and some big reunion, but they seemed to spend most of the time jockeying for space inside the shirt!  We're guessing they spent months doing the same thing inside the womb, and old habits are hard to break ...

Over the weekend, both girls have continued to grow.  Tessa reversed the weight declines she suffered during the week and is now 1.55kg, compared to Georgia's 1.75kg.  Over the seven days, Tessa put on 110g compared to Georgia's 270g, which is remarkable considering what she went through.  Georgia will be moving to bottle- and breast-feeding in the next week which will be another major milestone.  Her growth rate will taper off over that time (believe it or not, the mere effort of swallowing is enough to consume the extra calories they've been getting so she's likely to drop weight for a day or so).  Hopefully Tessa will join her bigger little sister soon.

A junction is approaching - now that Georgia is 200g ahead, she is likely to be able to be discharged earlier than Tessa, by maybe a week.  The doctors all advise to take one baby home and settle it before bringing the other - it makes the adjustment easier for both, and for the parents.  We don't really like the idea of separating the girls but understand the rationale, so we're likely to follow the plan.  It will make the day-to-day a bit tricky though, with managing one newborn baby at home whilst still visiting the other in hospital twice a day ...

If you read the last post you may have wondered what happened to the test for ROP - because of Tessa's setbacks this week, it was considered that both babies weren't up for it.  The test is now scheduled for Tuesday and Stace and I are hoping for the best.

After my last post, the following day (Monday) brought the first procedure for the girls.  As I mentioned in that post, Dr Tan had been watching Tessa’s blood count for some time because her haemoglobin count was bordering on low.  Since she had had some trouble with her lungs, it was thought that perhaps a low haemoglobin count was making her work a little too hard to move oxygen around her little body.  The more energy she expends on breathing, the less she can devote to getting bigger and building the muscles that make all these processes more manageable for her, so it was felt that a blood transfusion would be necessary at some point and earlier was better than later.  The blood transfusion took place on Monday, after they had completed the necessary tests, and they gave her 22mL of blood to top her up.

Tuesday brought the ultrasound brain scan, to monitor the progress on the intraventricular haemorrhages in both babies that had been detected the previous Tuesday.  Here was some good news – the bleeding had largely resolved itself in both, though small cysts remained.  Dr Tan assured us that the cysts were expected, were very small (less than 2mm) and would resolve themselves.  Even better was the progress later that day – the blood transfusion had good effect.  Tess came off the CPAP, her body colour was much better and her oxygen saturation was holding.  We hoped that maybe that would be the last time she needed assistance with her breathing.

Stacey and I headed to the hospital on Wednesday with a little trepidation – could Tessa hold onto the gains she had made the previous day?  We were delighted to see she had. Her colour remained good and she was off CPAP.  The nursing staff were very happy with them and made it clear that the challenge now was to see the babies grow.  To help the girls with this effort, their milk was being supplemented with proteins and vitamins in addition to the MCT oil.  They slowly increased their milk, until they were taking 19 mLs each every two hours.  After the first week or so, when they regain their birth-weight, premature babies are expected to grow on average at 1% a day, or 10g per kilo.  And sure enough, in the last seven days both Tessa and Georgia had gained 110g, leaving them at 1.44kg and 1.48kg respectively.  (It is interesting that despite her breathing challenges, Tessa had gained more weight proportionally.)  Based on this and all going well, if they keep growing at that rate we're looking at discharge for both babies in early November.

All going well.  Of course with premature babies its never that easy.  Stace and I reflected today that things seem to happen on weekends – the PDAs of both babies on their first weekend, Tessa returning to CPAP on the third.  Today just before we left for the hospital my phone rang, and as soon as we saw it was the NICU at Raffles Hospital our hearts sank.  Dr Tan seems to have developed a habit – when the news is good, he’s happy to call Stacey – my phone seems to ring with mediocre news.  Sure enough it was Dr Tan, calling to let us know that the heart murmur had returned for Tessa.  In his view, the most likely cause was a recurrence of the PDA that we thought Tessa had beaten.

We returned to the hospital this evening, and by that point Dr Tan had already used an ultrasound imaging device (for those interested, Raffles uses an Agilent Sonos 4500 for this task) to confirm it was indeed a PDA.  Tessa was back on an intravenous drip, they had cut back her fluids to reduce the pressure on her circulatory and respiratory systems, and began treatment with Indocin (the same drugs as used to previously treat both babies’ PDAs).  At least her oxygen saturation was holding – as I mentioned in the earlier post, a PDA puts pressure on the baby’s lungs by flooding the lung cavity.  If the PDA isn’t fixed in short order, then Tessa will go back onto the CPAP to relieve the pressure on her lungs.  She hates it, and we hate to see our little girl struggling with that machine although we know it does so much good.

Its interesting though – Stacey and I feel more confident this time around with Tessa’s PDA than we did last time.  She is two weeks older, bigger and has stronger lungs.  We’ve seen the medical staff treat it before and we believe it will close permanently this time around.  There are three doses of Indocin in the course over the next 24 hours, so we’ll know by mid-week at the latest if they have been successful.

The end of the week will bring the next hurdle for the girls.  Both girls are at risk of retinopathy of prematurity, or ROP, which is a disease of the eye that affects premature babies.  The history of ROP is actually an interesting story and an unfortunate illustration the law of unintended consequences – it is another example of celebrated progress that seemingly delivers so much but ends up doing enormous unforeseen damage.  That test should come before next weekend – it is quite a difficult test for the girls and so the doctors will wait until they are strong enough.  Because the girls were both reliant on oxygen to assist their breathing early in life, the doctors are expecting a Grade 1 or at worst a Grade 2 finding; we’re certainly hoping that’s the case.

I haven’t had an opportunity to talk much about Georgia today – maybe that’s a good thing!  Tomorrow is another little milestone that we are looking forward to.  The nursing staff at Raffles are believers in kangaroo care of premature babies – the idea that premature babies should be held in skin-to-skin contact with their mothers as soon as possible, to aid their growth.  Kangaroo care was developed in Colombia, as a naturalistic response to the issues they had around lack of resources for dealing with premature babies, in particular an absence of incubators.  It had wonderful outcomes and it is being widely adopted in many countries now.  Georgia has progressed to the point where Stacey should be able to spend some time with her tomorrow in kangaroo care – in our view it can only do good for all concerned.

So another up and down week – more ups than downs as we like to say, the babies look better and better.  We’ll overcome Tessa’s PDA and keep her off CPAP so she can join Georgia in kangaroo care, and deal with the ROP test when it comes.  Early November can’t come soon enough.

An update on where our little girls are at, for those who have been following the story to date!

I left the last post about the girls on 22 Sept, which was the day Stacey and I left the hospital.  I hope you had a chance to watch the videos - its a weird thing, the first moment that a mum holds her child is almost never captured on video unless you are filming the whole birth (and we never had that as part of the plan!).  In our case, the doctor told us we could hold them, and my first reaction was "just a sec, I'll grab my video!" - its one of the few advantages of having your kids in the NICU from birth.  I'm sure the girls and mum will love revisiting that short couple of minutes for years.

There was one piece of not-so-good news early in the week.  Both girls had brain scans on Tuesday last week (25 Sept) and were discovered to have Grade 1 Intraventricular Hemorrhages, or bleeding on the brain.  The doctors expect it to heal itself and could well have been due to their treatment for the PDAs, so accordingly told Stace and I that we shouldn't be overly concerned about it.  Of course, we find it very difficult to be so rational.  We do trust the doctors at Raffles (they have been excellent to date, and with recent media reports from Australia I feel very lucky to have them on our team) but it is impossible as new parents not to have sleepless nights on this rollercoaster.  Their next brain scan will be on this coming Tuesday and we are hopeful no evidence of hemorrhaging will be found.

Once the babies got to full feeds for their size (13 mLs every two hours) they removed the central lines.  From that point the girls were only tethered by the ECGs, which they will continue to keep as long as they are in NICU.  Thankfully, they seemed to get through the experience of having a central line without any infection which was our major concern.

We started to relax - the good news was starting to be more regular.  I'm happy to say that for Georgia at least that has continued to be the case.  The main focus with her is to put on weight.  She is now at 1.37kg (up from 1.33kg at birth), breathing on her own and generally behaving!  The doctors have now added a little supplement to her milk in the form of medium chain triglyceride (MCT) oil, which is designed to help them with a few more calories.  She is now taking 17 mLs every two hours and everyone is pleased with her progress.

Tess hasn't faired as well and seems to be progressing a little slower.  She was the first born and her lungs were less developed from the start, so although it is worrying it shouldn't be surprising.  We thought the HMD had cleared up for both babies, but late last week her oxygen levels began to flag.  After watching her for some time, the doctors put her back onto the CPAP to support her, so that she expended less energy on trying to breathe and more on developing the muscles that will help her breathe independently.  As of today, she is still on CPAP - they tried rotating her off however she hasn't been able to hold her own just yet.  We are hoping that another day or so should do it.

Tessa will also have a blood transfusion over the next day or so, because her haemoglobin count is low.  It appears that she hasn't been able to replace the small quantities of blood that the doctors have been taking for tests (very small amounts incidentally - only 3 mL or so at a time - but she didn't have much to begin with) and so they are going to give her a little extra.  Apparently such prem babies have on average three or four transfusions - to date Georgia has avoided the need, probably because there were less tests done on her at the beginning.  Tessa is at 1.33kg (up from 1.25kg at birth) and is now also getting the MCT oil as supplement.

So a couple targets at least for this week - we want to get through the brain scans on Tuesday with green lights, and we would love to see Tess finished with CPAP once and for all.  That particular device is a miracle in itself and we are all forever indebted to its inventors, but as soon as I see it turned off I will be celebrating a small win ...

There are many schools of thought and ideological positions about best practice in the design of questionnaires.  We have experimented with different ways of presenting filters in the past.  For example, we’ve used sliding bars to indicate the degree of presence of AVTs but there are concerns about whether or not it can be assured that the indexer has actually moved the sliding bar from its resting position when first presented.  We think this can be countered by using new technologies so the slider does not appear until touched by the indexer and will be introducing that shortly (though I don't think it will resolve the argument!).

The best way to design the multi-choice questions in a SenseMaker™ questionnaire though is probably under-considered.  This was pointed out to me recently when I met with one of the talented analysts in the Psychological Assessment and Research Branch of the MOE in Singapore.  As an example, he said that multi-choice questions should never have an odd number of answers, because it increases the prevalence of people choosing the ‘middle’ answer from those presented.

Is this a valid point? I’m not sure but I’m certainly prepared to entertain it.  If you have evidence of this, and of any other recommended practices in questionnaire design, I would certainly appreciate it if you could pass them along.

http://www.youtube.com/watch?v=SXHAW_VR38o
http://www.youtube.com/watch?v=Bsmt57N0Z2g
http://www.youtube.com/watch?v=jUNn74e-bs4

We woke the next morning and met the neo-natologist in the NICU to assess the status of the girls.  Georgia was in surprisingly good shape.  At 1.33kg, she was breathing on CPAP but they hadn't needed to tube the surfactant into her lungs.  Tessa was the bigger worry.  She was born at 1.25kg, and they had immediately put in the surfactant.  The immediate concerns for the doctors were respiratory development for both babies, and to check that the excretion systems were working.

We found out some basic ground rules.  In Singapore, a baby can't leave hospital until it satisfies two conditions - it needs to reach gestational age of at least 35 weeks and it needs to weigh two kilos.  Our babies were not yet 30 weeks, and babies are expected to put on 10g per kilo of weight per day.  We learned they would be in hospital for at least 6 weeks, probably more like 8.

Day 2 (Friday) was a little more sobering.  Georgia hadn't yet passed any meconium, and her kidneys didn't seem to be working.  They started to stimulate her excretion system with glycerine.  Plus, she was needing more and more oxygen support through her CPAP as her lungs seemed to weaken.  By Friday evening they'd made the decision that they would have to retube Georgia and give her surfactant directly into her lungs, as too much oxygen support would jeopardise her eyesight.  Tessa on the other hand continued to improve.

Saturday began to look up.  We met the neo-natologist in the morning for an update.  Tessa had further improved and they were even thinking of taking her off the CPAP.  The surfactant had taken hold in Georgia.  He mentioned a new concern though - a PDA.  There wasn't any evidence yet and he mentioned it in passing.  With hindsight I should have paid more attention, because on Sunday morning we heard that both babies were suffering from PDAs.

Every baby is born with an artery that is not fully closed.  After birth, the blood pressure forces this artery to close and the cardiac system works normally.  In some cases though, usually with prem babies, the hole doesn't close and blood begins to flood the lung cavity and pressures them.  Sunday morning we got this news early.  They had detected very strong heart murmurs in both babies which suggested the problem, cardiac scans had confirmed it.  It would have to be treated with drugs but there could be many complications.  Both kids had to go back to CPAP because of the pressure on the lungs.

So Sunday was probably the roughest day.  We spent the whole day waiting for news.  We heard that the babies were responding well late in the evening, with only some gastric bleeding from Georgia.  Good news to go to bed on.

Monday was again a pretty good day.  The gastric bleeding had stopped and they again were trying a little bit of mum's milk (this was fed to the baby though a tube from their mouth into their stomachs, as they don't know how to swallow).

Tuesday was more mediocre.  The docs advised us that 'shadowing' was evident on the babies' lungs in the x-rays - this could be Hyaline Membrane Disease (HMD), or possibly the start of an infection.  We couldn't tell either though and had to wait out the day.

Wednesday was the best day we've had yet.  The shadowing was still there but it appeared not to be infection, so was more likely HMD (more easily treatable).  The girls' colour was good and they were up to three mLs of mum's milk every two hours (all that their little stomachs could handle).  For the first time, the nurses gave us chairs to sit on while we said hello to the babies in the humidicribs - maybe they felt a little more relaxed to have us spend some time with them.

The major concern now is that the docs need to put a 'central line' into the babies, because they had pretty much exhausted all the usable veins for IVs, drips, etc etc.  A central line would run from probably their leg and then into the body close to the heart.  The tubs itself is 1mm in diameter so slowly inserting up these little babies' arteries is a delicate process, but by having it in place they will be able to use it for far longer than a regular drip.  The downside (there is always a downside) is that inserting any foreign body such as a tube into the babies increases the risk of infection.  We have to wait and see.

This morning the babies are one week old, and the emotional Snakes and Ladders continues.  We haven't yet visited the NICU for an update but we're hoping for back-to-back good days.  There seems to be more ups than downs, and Stacey and I are optimistic and confident in the support we've been getting.  One day occupies our thoughts - soon, the babies will get stronger and they can remove some tubes.  At that point, we'll be able to hold these kids for the first time.

I'll get back to blogging about Cognitive Edge-topics over the next week or so, but I will include a few updates here and there.  Thanks for the good wishes and the support we've had over the last week.

One rough, exhilarating, and exhausting week ago, our twins decided they had hit the end of the line on the inside, and it was time to enter the world ... there have been times in the last week when I wondered if we would make this day!  Today, to mark this very big day in our lives, I am going to indulge with a long blog post, to record what happened ... so forgive me.

On Friday 7 September, we came in for a CTG recording.  That was in the 29th week of the pregnancy.  Completing 28 weeks was a milestone for us - our docs (Dr Joan Thong and Dr Tony Tan) had told us that once we hit 28 weeks,  the babies were "viable".  Stats say that at 28 weeks, the survival rates of babies starts to improve, but before that it is a bit dicey.  Getting to 28 weeks suddenly vastly increased our emotional investment in these kids, in a way we could not have conceived.  Stacey and I had been celebrating each day since, but with increasing trepidation (for reasons I'll share below).

Starting from 28 weeks, our docs asked us to come for CTG recordings every two days.  The reason was pretty straightforward.  Having MCMA twins is a bit like putting two kids in a swimming pool, and separately tying both to one of the sides of the pool.  They swim round and round, but to be safe they never tangle their lines, because with kids in a pool, tangling lines could make swimming difficult.  With MCMA fetuses sharing a sac, blissfully unaware of concepts like "dangers", they swim round and round - and here, the very real risk is that they could tangle umbilical cords.  Entanglement in this way could lead to cord compression, which will cut off the flow of oxygen to the baby, and one or both babies will demise in a sudden acute event.  The mortality rate of MA twins runs at about 40% as a result.  We knew this from the counselling we received from our excellent hospital staff early in pregnancy, and had worked to stay somewhat detached, just in case - but reaching 28 weeks radically changed that.

We found out at 22 weeks using a Doppler scan that the cords had been entangled.  This was evident because we could see blood flowing in different directions in the cords, and could hear what they call "galloping" - you could hear one heartbeat, and a second heartbeart shadowing the first (like the sound of a horse galloping), telling us that they cords were bunched together.  The babies though were alive - meaning that although they were tangled, they weren't tangled tightly enough to compress the cords and cut off oxygen to the fetuses.

At 28 weeks, the docs asked us to come in for CTG recordings every two days.  CTG recordings will monitor a baby's heart rate, as well as for possible contractions.  Usually they are used to look for distressed babies when their mum is in delivery.  In our case, we were looking for a sudden deceleration of the kids' heart rates, which would indicate that perhaps the cords were tangled badly enough to compress, pointing towards emergency extraction if it happened repeatedly.

The first couple of scans were 100% clear, problem-free.  The heart rates of both babies ran at between 140 and 160 beats per minute, and were strong throughout.  The third scan was the one on Friday 7 September.  Near the end, it showed an inconclusive blip.  Our doc was appropriately concerned and admitted Stacey for the night, for eight hours of CTG monitoring.  The next morning though, after reviewing the results (I took a crash course in reading the trace that comes from the CTG machines) it was again perfectly clear.  They let us go but asked us to change to daily monitoring.

The next week, the first two scans on Monday and Tuesday were again clear.  We began to relax. On Wednesday 12 September, we came in again for what had become our routine.  Looking back, it literally brings tears to my eyes when I realise how a few lucky coincidences combined to bring our two kids into the world, and how close we were to missing that.

On the Wednesday, the labour ward was packed - mums and dads delivering in every room - and the nurses (who by now knew us very well and considered us competent enough to let us get on with it) put us in a back room, usually used for storage, but with a bed.  The CTG scans go for 30 minutes - but that day, because of the crowds delivering, they left us for an hour and a half.  That day, just over an hour in, there was a clear deceleration.  Unlike the previous Friday though, this time the deceleration was accompanied by a very weak contraction - so weak that Stacey felt nothing.  Clearly though the contraction had distressed the baby.  Her heart rate had plummeted from the usual 150-160 beats to 100 beats per minute for the duration of the contraction (about one minute).

Our doc took one look and admitted us.  She was concerned enough that she wanted twice daily monitoring, starting that same afternoon.  Stace and I were trying to keep it in perspective - we'd been in the same place last Friday - this was clearer evidence, but not solid enough to take the babies out.

We really didn't want to take the babies out.  Taking babies out at 29 weeks is not an easy decision.  They are at a critical period of system development, in ways that we don't fully understand and can't predict.  The babies are viable, we knew that, but it is going to be a long road.  To help them, one of the things you can do is give the babies a steroid to help their lung development.  This gives them a short term boost and means they *may* be able to breathe unassisted when they come out.  Problem is, you only get one shot at this and it last for about seven days.  Beyond seven days, the babies return to the curve of expected development.  If you give the steroid again, it leads to all kinds of issues down the track.  So, to be effective you need to give the shot less than one week before delivery.

Because of the previously clear scans, we had all agreed to give the steroid at 31 weeks and hold out to deliver at 32 weeks (beyond that, the risk of cord compression just got too great).  On that day though, our doc said we really had no choice but to administer the steroid.  I mentioned earlier that there was some luck - in some respects though, the successful arrival of our babies had nothing to do with luck.  Here was experience and expertise, a professional correctly reading weak signals and making the right calls.  We agreed to the earlier-than-planned steroids and had them at noon, and with hindsight it was a great call from the doc.  Two doses are required though, and they had to be taken 12 hours apart - they didn't really take effect until 24 hours after the first dose.  Again with hindsight, it was unfortunate we didn't have them any earlier.

The second scan for the day took place at 6pm or so, a little later than planned.  Dr Thong came in on her rounds and looked at the scan, and the anomaly in the scan had re-occured.  A very weak contraction, and one of the babies heart rates had plummeted for the duration.  For her that was enough - she put us straight into the labour ward for 24 hours continuous monitoring.  The best case was that we would hold on until 2pm the next day, to give the steroids a chance to work.

Stacey and I were still hopeful that everything would settle down.  They started to give her drugs to stop the contractions.  We turned on the television and settled in to wait.  Stace's mum was in town (mother's premonition had caused her to fly up to Singapore only two days previously) and she joined us in the hospital.

At about 7.30pm we were in the delivery room, waiting, waiting.  If you asked me everything that could possibly have happened next, I would not have predicted an earthquake, but quake it did.  An 8.4M earthquake off the coast of Sumatra rocked the towers in SIngapore.  We were on the 8th floor (very auspicious to have your babies on the 8th floor!) and the whole room was shaking.  Evacuation wasn't necessary, but I can tell you it did nothing for my nerves.

Again, luck was on our side later that night.  Dr Thong was delivering a baby naturally next door.  That bub was expected earlier in the day but was refusing to come out.  Eventually the mum was induced, and afterwards at midnight Dr Thong came by to check the CTG trace before heading home.  She took one look, and immediately made the call that we had to deliver without delay.  The contractions had been happening hourly since 6pm, and by now both babies were now in distress.  The drugs to stop or slow the contractions had had no effect.  Dr Thong felt that was enough evidence to suggest that the cords were increasingly tangled, and as the contractions took place, more and more pressure was being placed on the cords, tightening the tangle.  It had become very real very quickly and we realised that these babies were in grave danger.  There was no time for the second dose of steroids - Stace was rushed to the OT and the babies were to be pulled out.

People have asked if I cut the cords, kept my scrubs, enjoyed the birth experience, so on and so on.  But it was nothing like that.  Because they had no idea what they would find inside when they went in, Stace was put under GA.  I wasn't allowed in the OT.  I'm sure it must be wonderful to have a regular birth and to participate in the process, but for me the experience was two lonely hours with Stace's mum outside the OT in an empty waiting room, from nearly one to three AM.  Not fun.

Sometime after 1am, two teams of docs came out pushing trolleys with the two tiniest human beings I had ever seen.  It was Tessa and Georgia.  They said both were alive and ok but had to be rushed to the neonatal intensive care unit.  Stace's mum and I resumed our wait.

About 2am, a nurse came out to show me the placenta.  Two umbilical cords were connected very close to the centre.  Right above where they were connected were two true knots in the cords.  Beyond that, the cords were braided.  Those knots would have been terminal for the kids.  The right decisions had been made.  Never had I seen anything that scared me as much as those knots.

Around 3am, the docs came out with Stace.  She was just revived from the GA and asking about the babies.  I had very little news.  We went up to our ward room and waited.

Sometime later, our neo-natologist (Dr Tan MC) called me into the NICU (Stace was unable to come in as she was recovering).  The babies were ok he said, and a good size for 29 weeks.  One needed tubes to the lungs so that surfactant could be put put in; the other was beathing with CPAP alone.  They had other tubes going in everywhere - mouths, arms, feet.  It was overwhelming, I was exhausted, but the doctor was reassuring.  He suggested rest, the next day would be a big one; I didn't argue and passed out in our ward.

Mind you, its not just any Year of the Pig - once every 60 years, the Golden Year of the Pig roles around, which is even more auspicious - in China they are expecting an increase in the birthrate this year of 20%.  Think of the implications, all because of a belief in a little bit of extra luck ...

The biggest obstacle we have from now on in is the risk of an acute event (namely umbilical cord entanglement, which would be very acute indeed).  The best way to mitigate against that risk would be to have Stacey hooked up to a CTG scan 24 hours a day, with someone watching the monitor continuously ... but, since we all know we don't live in an ideal world, we settle for something which balances practical considerations with a desire to minimise risk.  She'll be going in every two days for CTG scans, starting tomorrow morning ...

The docs did confirm that the latest they will deliver these babies is 33 weeks.  So, within five weeks they'll be here and no doubt all hell will break loose!