The end of November

I'm going to start writing more in here. Little and often. Or that's the plan anyway.

Stanley has been amazing this week. He's really starting to crawl, in his own special way. Each of his limbs can move almost normally in their own right, it's just when he tries to coordinate all of them that he doesn't get the desired effect. This can make him very frustrated, uncomfortable and angry sometimes; but this last week he's improved so much. Today, in fact, while Leela was in the kitchen, she turned around to see Stanley's smiling face peeking around the door frame. This is the first time he's ever managed to travel that far from the play room - and it brought tears of happiness to his mother's face.

Willow's also amazing. She's still not walking on her own, but it can't be long now. She spends most of her time destroying things, ripping books off shelves, taking stuff out of boxes, putting stuff in boxes and being a little monkey. Watching a 'baby hospital' programme on TV last night brought it all back. Just over a year ago the docs were working through a list of things to try to basically keep her alive. Each time one option failed, they'd try the next. We just can't believe how well she's doing - just remembering how ill she was; we don't even associate that poor baby with the little girl we see today.

Both Willow and Stanley inspire me so much in everything I do. There's no way they got all this motivation and determination from my side, so I think we all have Mummy to thank for that.

November-ish.

I can't remember when I started writing this. Probably when I had a few spare seconds last week.

Overall, this month has been much more pleasant than the previous November. Last year, it was the time that we hit rock-bottom. Willow had just had her operation and it was touch and go for a few days at least. On Sunday, it was 12 months since she had finally freed herself  from the ventilator, which was the first major step on the road out of NICU. This year, she's very nearly walking on her own. She stood with no support for three seconds yesterday, so it won't be long at all. She's going to be dangerous when she's worked out how to move on two feet, that's for sure.

Stanley's had a really positive few weeks too. His sitting up is coming along slowly but surely. He still can't do it completely without the support of his own arms, but every day his back is getting straighter and stronger. We're just hoping right now that he'll be able to sit up nicely on Christmas Day to immerse himself in wrapping paper. He's now doing physiotherapy and hydrotherapy every week, both of which he's responding well to. It definitely helps that there are young lady physios for him to look and smile at while being floated about in a pool. We were also told by doctors that they're pretty sure he'll be able to to walk without aids. It's the first time someone's actually told us a rough outcome we can expect. Obviously it could still be much worse or much better than that - but this is the 'average' result for a child doing what Stanley is doing right now.

At that same meeting, Willow was effectively signed off - they told us they don't want to see her again (in the nicest possible way). Also, she's now been off oxygen for nearly two months - so hopefully we can now put that episode behind us. We still need to keep it around the house in case she gets ill. However, in the last two weeks both Willow and Stanley have had a bad cold. We were quite worried when we woke up one morning to them wheezing badly. But they managed to get through it without even needing any additional oxygen; in fact, they coped a lot better than Daddy coped with his man-flu.

 

One year and counting

So, a year has gone. On the 24th of September, we celebrated the first birthday of our two favourite little people. That day last year was one to forget in many ways; the only good things to come out of it were, of course, Willow and Stanley. The rest of the day was horrific and frightening.

I occasionally think back to the person I was before that day - an expectant father-to-be, relishing the prospect of the birth of a baby or two and full of excitement about what was to come. At the point when the doctor said those words 'You're having these babies now', all those hopes and dreams were smashed to pieces. Not, of course, due to our children being born, but because they were born fourteen weeks early. Fourteen weeks that they should have been growing and developing in the comfort of their little coccoons. A lot of people still don't seem to understand just how premature that is. I'll tell someone they were born fourteen weeks early and they'll say 'oh right, so you had to stay in hospital for a few days then'. 'Yeah, just a couple of days, until they grew some skin, quadrupled in weight, learned how to breath without the aid of mechanical equipment - you know, that kind of thing.'

It's only been the last few months that we've really been able to enjoy parenthood, despite the cerebral palsy, multiple daily doses of medication, continuing oxygen administration and monitoring. I think, because of all these things, we're appreciating every little milestone even more than we would in a normal situation. And on the subject of milestones, we're getting along very nicely in the most part.

Willow is now crawling - and when I say crawling, what I mean is running on all fours. There is no stopping her once she gets her eye on something at the other end of the room. And that something is always a prohibited object - like a mobile phone, the stereo, a plug socket; anything expensive, breakable, noisy or dangerous. She's also now using a walker to walk without any parental assistance, and is cruising between different items of furniture - all the while nattering away and making funny noises. Considering everything she went through, and the fact that she's only really ten months old - she's doing pretty well.

Stanley's predicament is still holding him back a few steps, as expected. Only in the last few days has he managed to sit up for more than thirty seconds. Today in fact, he sat unsupported for over five minutes; he's still a bit wobbly though, and needs plonking in the right place, but we're pretty confident now that he'll be officially sitting up on his own by Christmas. The fact that he's got CP really does mean that every milestone is even more amazing.

Both the babies have still managed to avoid any form of illness since coming home - mainly due to our extreme strictness with germs and hygiene. We just need to get through this winter without getting any major colds, and from next spring we might start to be able to be a bit more normal and let them get a bit ill now and then. If they were to contract bronchiolitis or something similar at the moment, they'd still be in trouble - Willow especially. They've got plenty of time to build up their immune systems, when they're no longer at risk of hospitalisation.

So anyway, life is good right now - it's never been better, in fact. Willow and Stanley couldn't be any more perfect, and we still appreciate every minute we spend with them. Just wish I had a few more of those minutes each day.

September 2011 - Adventures in France

September 2011 saw the first holiday on foreign soil for Willow and Stanley. We originally had grand plans for this summer’s little trip; to fit in a total of six countries, in order that we added a few to our list while we’re at it. But then we thought we’d make it a bit easier on ourselves, and just do one country instead.

The notion of staying in the same place for seven nights was all a bit different. But when you have two babies, approaching a year in age but really only nine months old, one still reliant on oxygen and the other suffering from a condition which means he’s often very uncomfortable, you have to go for the easy option sometimes.

So after hours and days and weeks of searching on every European holiday lettings website in existence, we settled on a gite near a town called Bauge in the Loire Valley. We also thought it would be a good idea to try out an overnight ferry journey on the way.

Leela spent a couple of days packing and organising, and we managed to fill up the spacious boot of our car quite quickly. Babies require a lot of equipment – sterilising units, bottles, a double buggy, four oxygen cylinders, sat monitors, a high chair, a bunch of toys, Stanley’s special physio chair, and all the usual paraphernalia.

The news that Hurricane Katia was approaching the UK wasn’t all that welcome, but luckily it sounded like it would only really affect the north west and would be arriving a day after we leave. Still, the forecast of weather on the English Channel looked a bit too windy for our liking. Not much we could do about that though.

Anyway, after a short drive to Portsmouth and a customary pre-holiday Zinger Tower meal, we boarded our vessel. The babies behaved impeccably on the boat. Even after having to wait an hour and a half before boarding, they only whinged for a little while before sleeping soundly all night. Which is more than I can say for Mummy and Daddy.

One nasty ferry crossing later, we arrived in Le Havre, still alive. The ‘long’ coffee I went to fetch on the ferry for our breakfast was a reminder of how small coffees are in France. With that tablespoon’s worth of dark caffeine liquid in our stomachs, we set off to find out what this country would hold in store for us this time around.

It was early on Sunday morning, so the roads were empty. The four hour journey took less than four hours, including a pit stop at a service station for the babies’ breakfast, and torrential rain for fifty or so miles on the motorway. We found our place of residence quite easily, without the need for sat nav or any of that jiggery-pokery. All you need is a map, some incorrect directions and a few roundabouts that didn’t exist when the map was printed.

The gite itself was a luxurious converted barn, which looked even better than the pictures on the website. If we had to stay anywhere for a whole week, then this is the place. With only one other residence anywhere near it, and no shops for a good five or six miles, this was a proper retreat – just what we wanted. The private garden backed onto a field, complete with eight cows which came and visited a few times a day.

On the day we arrived, all we wanted to do was settle in and enjoy a glass of wine on the terrace. Trouble was, it was Sunday, which apparently means that there is nowhere open to get any wine, even in France. We managed to find a boulangerie which had a bit of food to sell, but nothing even remotely grapey and alcoholic. Luckily though, we’d smuggled two cans of Carlsberg and half a bottle of Pinot Grigio onto the boat, which we were going to have in case we got desperate. Well, that time had come. What good is a beautiful sunset on the patio outside your cottage in the Loire Valley, if you haven’t got a couple of tinnies of British-brewed Danish lager and some Italian wine from the Co-op which has gone off a bit.

On Monday morning we checked out the local supermarket to stock up on some proper French booze, so we would never find ourselves in last night’s situation again. We filled up the kitchen with Kronenbourg, some local wines, a good deal of cheese and a bag of pain au chocolates, and set off for the nearest town of Bauge. We went to a café and made sure we got a ‘large’ coffee. It was, of course, small – but very tasty. While we were at the coffee shop, we fed the babies their 11 o’clock bottle; after which, Stanley’s customary burp appeared to be directed at a local lady who was walking past at that moment. Even his cheeky smile couldn’t prevent the sour look she gave us. Perhaps she thought it was Leela burping at her.

Our week was spent in delightful towns like Saumur, which are mostly famous for their chateaux or their wines. Due to our new roles as responsible adults, our holidays have taken a more relaxed, less excessive turn. Evenings are spent doing sensible things that parents do - like chatting over a couple of bottles of wine and eating a lot of cheese.

Because we stayed in each night, we ate out at lunchtime instead; which was usually very pleasant. However, at one particular restaurant in Villandry, it was anything but. I opted for a dish called 'andouillettes'. I knew I'd heard of this before, but couldn't remember where. The waiter said that it was like a sausage, so I thought - what could go wrong? Well, everything, it seems. It turns out an andouillette is made up of the crappiest bits of a pig that no-one in their right mind would ever eat; it actually tasted like a farmyard. Then I remembered where I'd heard that word before.... it was someone telling me "whatever you do, don't eat andouillettes". I should learn to listen more carefully.

 I think Willow and Stanley enjoyed their first holiday. They were extremely well behaved, and managed to sleep nicely most nights. Only the first couple of days were a bit fretful.... probably because they were waking up in strange surroundings. At least they'll be getting used to sleeping somewhere different; they'll need that for when we do our first proper bit of adventure holidaying with them. Now, I have this crazy idea about travelling overland to Nepal.....

August 31st, 2011

Time is really flying now. It won't be long until it's a whole year since our beautiful babies made their ridiculously early arrival into the world.

Things are going as they were. Willow continues to be developing at an amazing rate - she's rolling about all over the place, grabbing anything which comes into view and rarely showing any signs of tiredness. She's extremely near to crawling, and can sit quite confidently.

Stanley's still some way behind in terms of physical development. It's much more noticeable now that Willow is so mobile. Their corrected age is now 8 months, so they'd be expected to be at least sitting up by now. Stanley is not really near that milestone yet; he lacks the core strength and balance to do so. It's all down to the CP. At times, it makes us so sad to watch him struggle to do what he wants to do. Coming to terms with anything like this is difficult; just knowing that the perfect life that one dreams about for their family is just not going to happen. But most of the time, we're so encouraged by Stanley's attitude, and the fact that he really is struggling shows us that he's not going to give up. We're hoping that he's inherited my positive mental attitude and Leela's determination. The other way round wouldn't be so good.....

What we do know, is that it could still have been so much worse. He can use both of his hands, both legs, he can smile, he can eat, he can make very cute noises when trying to talk. The most difficult thing to come to terms with is the fact that we just have no idea how severe this affliction will be. We've been told that if he can't sit up by 2 years of age, then he probably won't be able to walk unaided. It could be a long road ahead.

Anyway, since Stanley's first few physio appointments, he seems to have really improved. Until the first week in August, he hadn't rolled from his back to his front. Since then he's doing it all the time, hopefully motivated by a good deal of encouragement from both parents. It's amazing how something as small as rolling over can bring tears to your eyes; something you can only really understand once you've had children. I can't imagine what state we'll be in when Willow and Stanley go to school for the first time or appear in their first play.

In terms of eating, they're both doing really well. For their corrected age, Stanley is on the 98th percentile and Willow is on the 94th, so no worries there at all. It must be down to Mummy's concoctions of fabulous fresh fruit and and vegetables that I'd never even heard of.

So, we're eleven months in, and each month is getting better; despite the obvious issues which are loitering. Hopefully we'll get some more answers soon, but generally it's still a waiting game. The most important thing, though, is that our two not-so-little bundles of joy are happy.

Friday 22nd July 2011

Life really sucks sometimes.

The four of us went to the hospital on Tuesday for another appointment at the Child Development Centre. This time, the focus was only really on Stanley. Willow had already proved herself last time; showing the doctors that she had no adverse tendencies. We were back this week to check how Stanley had developed since a month ago, when it was established that he was likely to have a mild case of cerebral palsy.

This time, a neonatologist, a physiotherapist and an occupational therapist examined our son closely to see what they thought about his predicament. He was being his usual self .... very happy and interacting with them, but with stiff muscles, coordination issues and occasionally unusual postures. After half an hour or so, the medical professionals left the room to discuss Stanley, and took slightly too long for it to be an uplifting diagnosis.

So, they think he's definitely got CP. To what extent, they don't know yet. The term 'cerebral palsy' covers a huge range of conditions, from the very mild to the very severe. We asked where they expected Stanley to be on that scale, and they think it will be 'moderate'. What that means, we have no idea. The doc said he 'should' be able to walk.... so that's a start I suppose.

Although we were expecting this, it feels a hell of a lot worse when you actually hear it. All we want is for Stanley to be happy in life, and be able to do what he wants to do. It may now be the case that he won't be able to do everything he wants to do, but we'll make damn sure that he's given every possible chance to deal with whatever problems he has, and is given the opportunity to do anything he wants to. One thing the docs did point out, was that he's definitely motivated. You can see it in his eyes and face that he really wants to move in ways that he just cannot physically manage at the moment. Also, there are no concerns at this point about him intellectually - the fact that he's 'talking', interacting with people, and obviously so alert and happy, are really positive things.

It could be that the CP turns out to be mild, and no-one other than Stanley and his family notice anything. But we need to be prepared for the worst case - that way, it can only turn out better.

So Leela and I have had a few breakdowns each this week. We haven't had any of those for a good few months, the last time probably being after both Willow and Stanley caught that nasty infection which kept them in NICU for an extra two weeks.

It's times like this, when life throws this kind of shit at you, that you realise it could be a lot worse. Back in NICU, we were expecting all kinds of stuff, and if we could've fast-forwarded to this point, knowing what we know now, we would have snapped it up right there and then. So again, we just need to take a step back and appreciate everything that we do have - which is two amazing, happy, adorable babies.

Friday 8th July 2011

Today is a pretty significant milestone in Willow and Stanley's journey through life so far. They've been home for 144 days. What this means is, they've now spent more than half of their lives outside the hospital.

On the whole, those first 143 days were horrible. There were moments of joyousness in there, but the over-riding feeling was one of torture. Every morning, I still appreciate all the things that are normal and good about our little lives back home.

Not waking up after a restless sleep, wondering what's been going on down in NICU. Not calling the unit to ask how the babies are, to see how many times they turned blue last night.
Instead, waking at 5:30am to hear Stanley babbling away to himself, followed by Willow waking up and banging the bottom of her cot with her feet. Lying in bed, smiling about those noises I'm hearing; knowing that Leela is lying next to me smiling about exactly the same thing. It still seems incredible that we're even in this position, and we'll be forever grateful that the whole show didn't turn into a tragedy.

Willow and Stanley are both doing amazingly. Willow weighs just under 20lbs, Stanley just over - so they're both looking extremely good on the scales for their corrected age, and not too bad even for their real age.

Following another check-up at the hospital, Willow is still looking perfect. There are still some concerns over Stanley's movements, and the report from the hospital states that 'the likelihood is that he has a mild form of cerebral palsy'. That sounds bad, and not the kind of thing you want to hear in any report about your children. But he is as perfect as Willow is; it may still be the case that there is nothing wrong anyway, and he does appear to be improving as each week goes by.

Their personalities are showing through more and more all the time. Willow is extremely stubborn. We've always known this, since she refused to be beaten by that ventilator, which, although it was keeping her alive, was damaging her tiny lungs so much that we thought on a number of occasions that she wouldn't make it. We can tell she will always do what she wants to do - no matter what anyone tells her. She is very dextrous, and closely examines every object which she picks up. Which is basically, every object which exists within the same room as her.

Stanley is very different. He'll sleep anywhere, and will eat anything that's placed within a few inches of him. No examinations involved first - just straight for the taste test. He's recently started babbling a lot more, and the other day, there was definitely a 'mama' in there amongst the bababamamambablabla.... After his teething episode a month or so ago, he's really chirped up a lot and is very happy for the majority of the time, just like his big sister.

Although we don't have a spare five minutes per day between us, we're having a fantastic time now as real grown-ups, and we wouldn't want to change anything. Every night when I go to bed I look forward to waking up again. Not just for that fresh cup of coffee, but to spend some more time with Willow and Stanley before having to go off to work. There is something about these babies that just makes me forget everything else in the world that's annoying. There's a lot of stuff in the world that I find annoying, so that's a pretty impressive achievement. I'm sure there's plenty more of those to come, soon enough.

Tuesday 14th June

The Honda wasn't the only member of our family having an MOT today. Willow and Stanley were also due for a bit of a check-up, at the Child Development Centre at Poole Hospital. As they are now almost six months old (corrected age), it was time to assess where they are in terms of development milestones. We weren't expecting any surprises, as we've been observing our babies very closely since they've been home.

Like the Honda, they almost passed the test with flying colours. The docs couldn't fault Willow in any way; she's doing everything they expect her to be doing right now and more, and isn't showing any signs of anything untoward. Which is a complete miracle, really, considering everything she had to deal with.

For Stanley, it wasn't quite as unanimous. We've been noticing the last few weeks that he displays some awkward movements, particularly on his left hand side. This means I've been doing some excessive Googling, and everything points to cerebral palsy. The docs obviously noticed these things too... but couldn't give an answer either way. It's still too early to tell, but there's definitely some cause for concern. It may be a form of cerebral palsy, or it might be nothing to worry about at all - just a bit of stiffness left over from being born far too soon. In every other aspect, Stanley, like Willow, is doing absolutely fine - and the docs think that if anything is wrong, it should be limited to a bit of a funny walk. It could have been so much worse than this after everything that they both went through - we're extremely lucky to be in the situation we're in right now, with two perfect little children.

Still on baby-health news, Willow is now living without additional oxygen for about half the time. This trend started about a month ago, when I accidentally forgot to turn on her oxygen one morning. When Leela noticed an hour and a half later, I was completely distraught. In the last seven months, she hadn't been without oxygen for more than 20 seconds. The fact that her monitor wasn't turned on didn't help matters, as we had no idea what her vital signs were. But as it turns out, she would've been completely fine.... the next day, we tried her again while monitoring, and her oxygen sats didn't drop below about 94%. I breathed a huge sigh of relief (as Willow had been demonstrating so nicely), and I inhaled some of her oxygen for good measure.

The last few days, she's been off the oxygen all through the day, and just back on for the night-time. She still needs it when sleeping, as that's the time when oxygen saturation is lowest. It's good to know that when she starts crawling, she won't have to drag a cylinder around with her.

Aside from hospital visits, we've all been very busy these last few weeks. Every weekend, we go out on a day trip somewhere. As we're up at six o'clock every morning, the days are nice and long so we can make the most of them. We usually go out to various different parts of the coastline and countryside, where we show the babies all the good stuff that nature has to offer. Along the way, we feel compelled to try out some of the nicer beer gardens too, to assess them for baby-friendliness. It's a hard job, especially as it means I sometimes have to endure a pint between feeding. We're feeling that they may be wanting a bit more excitement though, and they want to increase their 'countries visited' count to at least five before their first birthday. We'll have so see what our September holiday has in store....

It's June already...

No idea where May went, but it was all good fun. Willow and Stanley turned 8 months old on the 24th, and have now been home from hospital for 108 days. This is still quite a way off the 143 days they spent in NICU, which just illustrates how long they were in there for. Although it really is becoming a distant memory, sometimes it hits home just what we all went through - and it's pretty hard to deal with. Every time we stop and think about where they are now, we appreciate that they're not clinging onto life with the aid of machinery, and how we're not at those double doors every day, waiting for the buzzer, before dropping off a load of expressed breast milk in the fridge, washing our hands rigorously and walking up the corridor to find out how many times our children needed resuscitating last night.

Talking to people, I still don't think everyone understands just how seriously ill these babies were and how close they were - particularly Willow - to simply not surviving. We still may seem like neurotic parents, not letting many people handle them or cough their germs all over them. But who cares - they're our babies and we don't want them back in hospital.

Anyway, the positives far outweigh the negatives. The four of us are having a great time at the moment; from the moment they both wake, smiling and laughing at us with intense excitement, each day is a pleasure. Leela has the toughest job out of us parents; I go to work on Monday morning for a bit of a sit-down and a rest. But she also has the most rewarding job - Willow and Stanley are such an inspiringly delightful little pair of people, and it's mostly down to what their mummy has done for them.

They're growing up fast, and are both now approaching 20lbs in weight. This means they're way over the 90th percentile for their corrected age of 5 months. In fact, they're even a good size for their real age, which is pretty amazing.

For all their developmental milestones, we have to look at their corrected age, not their real age. And they appear to be doing everything they should be now; in some respects even going above and beyond that. There is still the worry that they may have some kind of problem, such as cerebral palsy. Chances are there will be something wrong, after everything they went through. If they come out of this with nothing but a couple of scars and some lingering chronic lung disease, it will be a miracle. We have an appointment at the Child Development Centre in a couple of weeks, where they'll be thoroughly checked over by an assortment of medical experts, from paediatricians to physiotherapists.This will give us a very good idea of how they're getting on and any concerns there may be at this stage.

Willow and Stanley are still enjoying eating. Their current favourites are Weetabix and banana, pear and apple, and a variety of vegetables. We're starting to increase their solids intake and wean down their milk. Although the aspect of nutrition is, unlike all other development, based on their real age rather than their corrected age, there is is still a slight hindrance in that they are not physically as well prepared as a normal 8 month old. At 8 months, most babies would be sitting up nicely which would assist the act of stuffing food in their mouths. Although ours are definitely a lot more stable now, they still slide about quite a bit in their high chairs.

They're still generally sleeping well, all night from 8pm til 6.30am. However, those little teeth are starting to make an appearance, which can result in one or the other shouting quite loudly early in the morning. A bit of teething powder and a few rounds of 'Twinkle twinkle, little star', and they're usually back to sleep in no time.

Some more Aprilness

This month is going nicely. The babies' spirits have been reflecting the sunny weather, and their parents are following suit most of the time. Willow and Stanley enjoyed another trip to the beautiful Dorset coastline at the weekend. We're actually getting out and about a lot more nowadays, rather than wasting our Saturdays and Sundays in hungover oblivion. In fact, the 2011 London Marathon was the first one I've watched without feeling sick and needing a pizza. These babies have given us so much more motivation to get out there and appreciate everything.

They're still getting on really well, and starting to look a lot more grown up. Stanley sat up unaided for 12 seconds yesterday, and he can pretty much stand if we hold his arms. Willow is still not as strong physically, but she seems to have more accomplished co-ordination skills. They're both smiling a lot, and react to each other more and more when they're lying together on their play mat. They're sleeping much less during the day, and have been going through the night since Saturday. This means we've got our evenings back, and just having two hours or so to relax and talk to each other in a normal adult voice, feels like ages. I really don't know what we did with our time before Willow and Stanley made their appearance.

Willow's oxygen requirements are very slowly coming down, but it's taking longer than we expected to wean her off of it. She's on 0.125 of a litre an hour now, compared with usually 0.5 litres when she came home - so we are getting there. We can't imagine what it's going to be like to have neither baby needing additional oxygen - it's going to be an amazing day when that finally happens.

After a day of *working* from home today, I now have eleven days off to enjoy the lovely weather with the wife and kids. Wahoo!

The first half of April, 2011

Spring is always a positive time of the year; and this one has been no exception. After a nasty autumn and a very long, tortuous winter, it was just what the doctor ordered (so to speak).

Willow and Stanley have now been home for two months, and have so far escaped any colds and infections. We've stuck to our strict policy of baby-handling by immediate family only, and it's paid off. We're sure a lot of people think we're being overly cautious, and that the babies need to get illnesses to help their immune system. Well, that's true to a certain extent, but if they were to catch a bad chest infection at this point it would probably only make their lungs even worse. I'd rather not see Willow back on a ventilator again, thank you very much - it's bad enough that she still needs oxygen 24/7.

They went for a check up at the hospital on the first of the month, for a once-over by a NICU doc. He seemed very pleased with the progress of both of them, and couldn't really find any faults. Of course, we are still not out of the woods at all, but all the signs are still good. We were so proud to show off our babies - we must be doing something right anyway.

They've also been weighed again this week. Stanley is now 16lbs 8oz and Willow is 14lbs 14oz, so they are both approaching the 90th percentile for their corrected age of three and a half months. They're really starting to appreciate the world of 'solid' foods, having three meals a day. A 'meal' being a yoghurt, or half a banana, or a pot of liquidized vegetables. Each of these is of course still complemented with a bottle of the white stuff, but they are certainly getting to grips with the fact that solids will satisfy their hunger as much as milk does. In the early days, there was no way we could get Stanley to go for a spoon of yoghurt when he was starving; we had to take the edge off with half a bottle first.

My favourite part of the day is the morning; it always has been, but now it's even better. We all wake up at 6am, and while Leela goes downstairs to get the nutrition ready (bottles for Willow and Stanley, coffee pot for Mummy and Daddy), I change the babies. They are both particularly cute first thing in the morning, and always seem to have grown an inch or two. But most of all, they are extraordinarily happy, smiling up at me and wiggling their limbs about because they are so excited (about something, I don't know what). They're such happy babies, and only really whinge at the same time each day - just before their evening kip when they're over-tired. After that, they still sleep til we wake them at 10pm for their 'dream feed', and sleep again until 6am. This weekend, we're going to try and stop the 10pm feed, and see if they'll go all the way through.

That all makes it sound easy - but it's not, by a long shot. There is always something to do, whether it's washing, sterilising, washing up, cleaning, playing, feeding, bathing. I had my first day on my own with them on Sunday, as Leela went up to Somerset to visit her other neglected family members. I'm only just about convinced I'm responsible enough to look after a hamster, let alone two babies. But I just about coped on my own for a full day, and got a taste of the job that Leela does every day when I'm at work. I've definitely got the easier deal being at work, that's for sure. Just a shame I can't be with my three favourite people all the time.

There will be an update on here soon, as soon as I get five spare minutes...

Monday 28th March

Another check up today, this time for Stanley only. He was booked in to see the cardiologist at Poole Hospital. Back in about November, during a routine heart scan, the docs found that Stanley had something called 'left ventricular hypertrophy'. This basically means that the muscle of the left ventricle is thicker than that on the right. It could be a hereditary problem, or just due to the heart working too hard.

Anyway, the good news is, there was definitely no sign of any hypertrophic left ventricles today. So another item to tick off the list.

The slightly less good news is that he still has a PDA. Not a personal digital assistant, nor indeed a public display of affection, but rather a patent ductus arteriosus. This is the open duct between the two main arteries; the same issue for which Willow needed scary surgery back in October. However, Stanley's is not causing him any problems, so at this point he doesn't need any treatment. It will hopefully disappear on its own, but if it doesn't, there is a keyhole procedure that can be done to close the duct. We'll find out about that in another nine months.

Back at home, the sat monitors are driving us around the bend. Willow's tends to go off when she rips the nasal prongs off her face, and Stanley's goes off because he wriggles around like crazy. We can't not have any monitors on when they're sleeping, because if Willow does pull out her prongs, we need to stick them back in her nose pretty quickly. If it wasn't for the beeps, we'd both easily have six hours sleep a night. It's particularly infuriating for Leela as she's had to hear them 24 hours a day for six weeks. Anyway, it won't be for too long hopefully....

In other news, our caffeine addiction has hit a new level. We both need at least twelve cups of coffee to get through the day, and there must always be a pot of coffee ready to brew for the 6am feed. It's one of my jobs, after the midnight sterilisation session, to prepare the morning hit.

The babies are getting on amazingly. Every time we wake up in the morning, they both smile and giggle at us for a few minutes before we feed them. I've never known anyone to be that happy in the morning, especially when starving hungry. But then I've never known any babies like Willow and Stanley before. No matter how little sleep we might have had, it's instantly forgotten when we see these two little faces beaming at us.

Sunday 27th March

Lovely weekend with the family; all went a bit too quick again!

We had breakfast on the beach on Saturday morning, and we had our first experience of feeding Willow and Stanley in public.

We've been getting a few comments while out and about.... the usual story.

"Ooooh, are they twins?"
"Yes"

"Ooooh, are they identical?"
"No"

"Ooooh, you've got your hands full, then."

On hearing them scream loudly: "Ooooh, nothing wrong with their lungs then."
"Yep, they're fine, apart from the chronic lung disease."

Thursday 24th March

Big day today. Not only did the babies have their six month birthday, they also had a trip to Boscombe to have their hearing checked out. They'd both had a hearing test back in NICU, but Willow failed in both ears, and Stanley failed in one ear. However, they're pretty unreliable in NICU because it's not really quiet enough to do an accurate test. The chances of having hearing problems increases substantially with premature babies, so this is another item on our worry list. On top of that, Willow once had a high level of the antibiotic gentamicin, of which one of the side effects is hearing loss. So, this has been an area of concern for us for the last six months .

We all went off to Boscombe in the lovely warm sunshine, and checked into the audiology department. We were in there for a good couple of hours, and both Willow and Stanley behaved impeccably while the audiologist performed some tests on each of them, lasting half an hour a piece.

Anyway, the upshot of it all was...... they both passed in both ears! We weren't amazingly surprised, as we were pretty sure they react to loud noises and to our voices anyway. But to find out for sure that it was all functioning properly was a major relief.

In other news, the kids were weighed today - Stanley's 15lbs 7oz, Willow is 13lbs 9oz. We're definitely still feeding them enough then.

Thursday 17th March

We've been home now for over a month, and it's been by far the best month in a while - certainly the best out of the last six anyway. Although the previous five wouldn't have been too hard to beat.

We are acting a lot more like a normal family now. I'm going to work every day, and still get excited each time I leave the office to go home. The babies change so much on a daily basis - I notice something different every time I see them. The change in Willow particularly has been amazing. She has so much more energy now, she's smiling for longer periods, and just looks like a happy baby. We keep thinking back to when she was looking at us so sadly with the tube down her throat for so many weeks. Looking at her now just makes us realise how lucky we are that she is the perfect, beautiful baby she is today. Stanley is still being Stanley; he basically smiles continuously, until hunger sets in.

Every day, the babies get some time on the play mat where they just lie there and look at each other. Stanley gets so excited when his sister turns up next to him, and they can spend a good hour just wiggling their limbs and googling to each other. This is one of the many benefits of having twins I suppose - instant playmates.

Feeding is still generally going well; although last night we had a bit of a moment with Stanley. It looks like he coughed, burped and vomited at the same time, which meant it all came out of his nose. We were terrified he was going to choke; I actually called the hospital while Leela masterfully calmed him down with some strategic movements and oxygen administration. After a while he cleared it out of his nose and throat himself, so the panic was over with no intervention. Six weeks ago, that would have been a definite 'bagging' incident. So on the one hand, it's very reassuring that he came out of that on his own - but on the other hand, it shows that we're still not totally out of the woods.

We recently received another benefit from our fifteen minutes of fame. During our week as celebrities, we were contacted by the makers of 'Babyglow' sleepsuits, who wanted to offer Willow and Stanley a couple of outfits each. They're basically baby grows which start off as pink or blue, and will change to white if the baby's temperature rises above a certain level. Luckily we've not experienced them turning white yet - but it definitely adds peace of mind if we're ever a bit worried that they might be getting ill. With sat monitors, apnoea alarms and Babyglows, I think we've got it covered.

We're really looking forward to the weather getting warmer now. We still don't want our babies mixing with the general public and their germy germs, so we're trying to avoid enclosed spaces when we're out and about. One only has to stand in a queue in Asda and realise that this is not the place for a baby with chronic lung disease.

We attempted to go for an outdoors lunch in Poole Park at the weekend, so walked past the warm people inside the cafe, and sat in the cold wind with an overpriced panini and the worst cup of coffee in Dorset. It wasn't long before we were sat in our nice warm car watching the boot of a Citroen Picasso while finishing our food. The babies seemed to enjoy their little excursion in the fresh air anyway, and it was just nice to be able to even take them out like that.

It's still an hour or so until we give the babies some more food to last til the morning. So, it must be about time for the parents to have some more food to last til the morning too. Food, in this case, being Quality Street and a bottle of wine. 

Friday 11th March

Another busy week - and not a lot of time for blog-writing.

I became 33 years old on Tuesday, and couldn't have wished for a better birthday present. Just waking up and being able to see a couple of babies smiling up at me was much more than I could wish for. As a special bonus, I also received a lovely piece of projectile vomiting from my daughter, and a couple of manly burps from my son.

The kids had their weekly weigh in - Stanley is 13lbs 9oz, Willow is 12lbs 4oz. I could do with losing a stone in weight; so that's basically a whole Stanley. Makes you realise how heavy custard creams and Zinger Tower Burgers are. Our diets have actually improved somewhat since we've all been at home. The incredible wife/mother combo package named Leela manages to whip something up most days, so I arrive home from work to the smell of something delicious bubbling away in the slow cooker. We've had Greek lamb shanks, Hungarian goulash and Malaysian beef and aubergine curry, to name but a few. I'm a very lucky man.

Willow and Stanley are still enjoying living at home; their personalities are developing every day. Stanley is a very laid back little boy; unless he's hungry, when he is a maniac. Willow is very patient, but knows what she likes and doesn't take any nonsense.

I received a message this week from John White, whose daughter Leah was born at 26 weeks 6 days on 1st March. She's in the care of Poole NICU, and her parents John and Sarah are going through the same rubbish that we went through five months ago. John's doing a blog too - http://leahvivianharleywhite.weebly.com/daily-blog.html. Just reading what's happening to Leah reminds us that just because we are fortunate enough to have made it out of hospital eventually, it's all still happening to other people behind those double doors. We'll certainly be following their journey and hoping that they start having an easier time soon.

Monday 7th March

Today was pretty good. I left work heading in the direction of home for the first time since Friday 24th September. Normality had never felt so refreshing. This is the kind of thing I probably wouldn't have appreciated enough before; the simple act of travelling home, knowing that my little family are all there waiting for me.

The kids are now on double helpings of 'solids' a day. They had apple and baby rice for lunch, and sweet potato for dinner. Slightly more nutritious than the lunch of caramel KitKats and Penguins that their father had at work. It was my first day back in the office though; and the bananas I left in my drawer three weeks ago didn't look all that appetising.

Last night, all four of us had five and a half hours sleep in one go, so today we were feeling surprisingly refreshed. It's now a quarter to midnight, so fifteen minutes til their late supper. The grunts and groans coming from the baskets in the corner are like a countdown to food o'clock. Who needs atomic clocks to tell the time when you have Willow and Stanley.

Sunday 6th March

All is still going nicely here. We've fully recovered from our time as sub z-list celebrities; even surviving a surprise appearance in the Advertiser.

It's been a busy week for the four of us. Leela is relishing her role as a proper mummy at last; and I wasn't called upon at all in my back-up position while working from home. We had a lovely weekend together, including a walk in the spring sunshine along the beach. It's getting a lot more relaxing leaving the house, and we're not relying on watching monitors constantly anymore while out driving or walking.

We're definitely starting to put the whole NICU experience behind us, and hopefully Willow and Stanley are too. Going by their smiles and how happy they always seem to be (except when hungry), it looks like it's already a distant memory for them.

Wednesday 2nd March

This week, we've mostly been forgetting what sleep is like. Although that, and the tiredness created by the lack of sleepy time, are the only negative elements to come out of the last few days.

Willow and Stanley are still coming on in every way. Each morning they seem bigger and smilier, and it's always a real joy to meet them again every time they wake up. They were weighed again today - Stanley is 13lbs, Willow is 11lbs 10oz. They're moving their way up the percentiles, Stanley nearing the 75th and Willow on the 50th (for their corrected age of almost nine weeks, of course).

I've been working from home this week, pretending to not be at home at all - only interacting with family members if I hear an adult scream from downstairs. Leela has, amazingly, been coping superbly with the double full-time job she's got. On an average of three and a half hours sleep each night, it's not easy dealing with two extremely demanding little humans all day, particularly those that require oxygen, sat monitors and a cocktail of drugs. The day we get rid of Willow's oxygen and both the monitors will be like another escape - our final (material) ties to the legacy of premature birth will be left behind us.

For me, it has been like a break getting stuck back into work. I can concentrate properly now, knowing that everything I need in life is just downstairs, and not in a hospital on the other side of town, where I don't know what's happening. It's still an amazing relief every time the phone rings, knowing that it's not NICU.

The weaning is still going well; it looks like Willow is the more accomplished spoon feeder. Stanley still needs to calm down a bit, and realise that the food is not going to run away from him unless he shakes his head around like a madman. At this rate, we'll be liquidising jalfrezis before we know it. Might give those nappies a miss....

Saturday 26th February

Yesterday was all about Weening. Today, we've moved onto weaning.

Willow and Stanley both made their first steps into the world of solid foods this morning. It does seem very early to start weaning, as pretty much everything else in their development will be based on their 'corrected age' - which is the age calculated from when they should have been born (which is currently eight weeks). But, as their little stomachs have been digesting milk for five months, ie since day one, they will be able to start consuming solid foods earlier than their corrected age.

Not surprisingly, Stanley relished the opportunity to guzzle something other than liquid. And Willow wasn't shy either; I think we can call this experiment - the initial test anyway - a success. It gave us a lovely glimpse into the next few months, where they're going to be smiling away whilst covering their faces with all sorts of multicoloured foodstuffs.

Unbelievably, I only have one day left before going back to work. This has been the quickest two weeks of my life by far; I can understand now when other parents say to make the most of this time as kids grow up so fast. So I'm going to spend most of the time I have left feeding, changing, sterilising, talking rubbish and not sleeping. I'd happily swap work for all of that though - this is definitely the most rewarding job I've done.

Friday 25th February

So, it looks like our fifteen minutes of fame are over. Not before one final nice surprise though. Word had got around to Dean Ween, guitarist of one of our favourite bands, Ween, that I was wearing a Ween t shirt in the photo on the Telegraph's website. So the link was posted on their Facebook page and we got over 150 messages from well-wishing Ween fans. Also, they are sending Willow and Stanley some autographed baby-grows, which they'll be able to treasure forever. Some good has come out of all of this, after all.

Back home in the Senior residence, all is going nicely. The kids are getting into a routine now, with awake playfulness and long sleepy periods at the same times each day. It looks like Stanley's reflux is coming back, after a few episodes where he's done a bit of choking and turned ever so slightly navy. Nothing like what was happening a few weeks ago, but we've started him back on some Domperidone anyway. Another syringe to add to the regular drug administration schedule.

We're noticing the difference in both of them every day, particularly Willow. She's always been a few weeks behind Stanley after the rougher ride she's had, but she's making great strides to catch up with him all the time. Her smiles have gone from small unsure smirks to huge full-faced grins. No matter what time of day or night it is, seeing either of them smiling right at you just wipes away any problems there might be in the world at that moment.

Thursday 24th February

Wednesday was another day of craziness for the four of us. We awoke to the news that our story was now not only in the local Echo, but also in the Mail, Telegraph, Express and Metro newspapers (with only a little bit of sensationalisation, courtesy of the Telegraph). It's all a little bit embarrassing; we don't really feel worthy of all this attention. The kind of thing that we went through goes on every single day in this country, we are by no means the only people who've suffered and there are a lot others who are so much worse off than us. At least it does raise awareness of the work that goes on in intensive care units on a daily basis, and it's nice to be part of a positive news story amongst all the misery out there in the world today.

I don't think Willow and Stanley noticed any of the fuss going on around them. They've had another good couple of days and continue to thrive. Willow was giving us some real smiles, reacting to both of us as we talked rubbish to her, as parents do. They slept for nearly six hours last night, which is more sleep than either of us have had in the last five months. If we can just stretch that out a bit we'll be more than happy.

We've been for a nice walk down the beach in the glorious spring sunshine, but are still a bit on edge and can't help but keep looking at the monitors all the time. I think we need to start weaning ourselves off Stanley's monitor at least, so we can get used to having a baby with no wires attached at all.

The physio from the Child Development Centre made a visit today to have a look at how Willow and Stanley are getting on physically. One of the main worries of everything they've been through - like being extremely premature, and all the events that occurred since their birth - is that they might have some form of cerebral palsy. It's impossible to tell at this stage just what exactly the outcome might be, but from today's examination there was nothing obvious with either of them which would necessarily indicate any problems. So, although inconclusive, which is all it can be at this stage, we'll happily go with 'no news is good news'.

The last few nights, both babies have been fast asleep all evening, from around 7pm til midnight. Hoping this will also be the case tonight, we are planning to sit back and watch a blu-ray with no disturbances. The good thing is, we can have the surround sound as loud as we like; because they're so used to the racket going on in NICU, they can sleep through anything.

We'll see how that goes...

Tuesday 22nd February

Today was rather different. We almost felt like minor celebrities, expecting the papparazzi to be bashing down our door at any minute. The house phone rang at about quarter to nine. For the last four and a half months, that would always fill us with dread, as it could only generally mean one thing. Today though, after a quick glance at the two beautiful babies we were holding, we knew it wasn't NICU on the end of the line. Anyway, we missed the call as usual - we've always got our hands full these days - but there was a message from someone at Bournemouth News Service. Apparently we were on page three of the Bournemouth Echo, and our news story had gone national. That's the only time I'd like either of the two ladies in my life to be on page three of any newspaper.

By four o'clock this afternoon, we'd made it into the Daily Mail website, had an offer from a woman's magazine, and turned down the chance to appear on Channel Five. Not something that happens every day, and not anything we expected. We haven't really done much to deserve the attention; just had a couple of lovely little babies. All this fuss from a press release from Leela's school about the money they'd raised for NICU. If we do get any money from any of this, it will all go to NICU anyway, so it can only be a good thing.

As it turns out, there were no papparazzi, and we won't be competing with Kerry Katona for the front page of OK! magazine or the News of the World. But it did add a bit of excitement to our Tuesday anyway.

Back to the more important things in life, young Willow and Stanley were again thriving in their new environment of the Senior household. It's such a joy to wake up each morning and be able to see them again, even if it is 4:30am and they're screaming the house down. As soon as some food goes down their necks, the smiles aren't far away and it makes it all worthwhile.

http://www.dailymail.co.uk/health/article-1359503/The-premature-twins-tiny-arms-fit-inside-wedding-ring.html

http://www.bournemouthecho.co.uk/news/8867649.Premature_twins_back_home_after_143_days_in_hospital/

Monday 21st February

We've been waiting for Saturday and Sunday morning lie-ins like this for a long time, and we finally got them this weekend; complete with bacon and egg sandwiches, and our babies on the bed with us. We're still not getting a terrific amount of sleep though, as both Willow and Stanley make continuous noises throughout the night.

We're still appreciating not having to go to NICU every day, and not having to worry all night about what our children are doing all those miles away. Of course, we still worry about how they're doing right beside us, but it's getting much easier. Their monitors are going off a lot less already; they seem to be even more stable than they were when they left NICU.

The health visitor came around this morning and was very impressed with how happy and settled the pair of them are. They were both even giving away a few smiles. They were weighed today - Stanley is 12lbs 4oz, and Willow is 10lbs 9oz - so both are still gaining weight really nicely.

We've been out for a few walks, complete with Infection Control rain covers to protect from prying fingers and germ-filled splutters. We probably look like neurotic parents, but we'd rather look neurotic than see either or both of our babies back in hospital. We're getting used to carting oxygen and sat monitors around with us everywhere, but really can't wait until we don't have to anymore. It will probably be a few months yet; although we are starting to turn Willow's oxygen down quite a bit more now, and Stanley's feeding has improved so much that he hardly ever de-saturates at all.

We still haven't quite got our own feeding regime on track. We tend to not have time to eat, so breakfast doesn't generally make an appearance until the afternoon. There is always a pot of filter coffee on the go and a small supply of cakes for emergency caffeine and calories. The kids are obviously getting a lot more nutrition than we are anyway. 

So, we're one week in to our new lives back home, which means that Willow and Stanley are one week stronger. The highlights of any of our days now is when either of them smiles at us; I suppose it means we're at least doing something right. Hopefully their memories of all the nasty things they went through are already fading, and are being replaced with dreams of a happy future.

Friday 18th February

Things are still going well in the Senior household. It now feels like we've always been a family; I can't imagine what it would be like without Willow and Stanley around.

We're slowly getting into the flow of everything, and our sleep amount has increased from three quarters of a minute on Monday night to three quarters of an hour last night. The babies are getting a lot more sleep - and are generally very settled, quiet and happy. The only time they really cause a fuss is when they're hungry. Stanley can go from fast asleep to screaming his face off in about six seconds. And Willow's voice is getting louder all the time, so she's not far behind her brother in volume.

We can see they've come on so much in these last few days since being at home. Both of them are feeding a lot more nicely; probably helped by the fact that only the two of us are now doing it, and we're both a lot more confident and know exactly what they want. What's really nice is to be able to hold our babies without wearing gloves and aprons, and to not have to share living space with other people.

Today we had a bit of a surprise photo-shoot. The Echo wanted to do a story about us after Leela's school sent in a press release about some money they'd raised for NICU, and they wanted some pictures of us all. We made sure the kids were well fed before the photographer arrived, and they were very well behaved, even giving a few smiles at the right time.

I can't believe how quickly this week has gone; only ten more days off and I'll be back at work. Leela's going to have her hands full, that's for sure. She copes unbelievably well though, dealing with us three hungry whingeing babies all day. She's a real natural mother; the way she calms down both Willow and Stanley when they're both screaming at the same time is amazing.

Going by the noises coming from the moses basket in the corner, someone's a hungry boy again. Time for some more dinner....

Tuesday 15th to Thursday 17th February

So, we're now three days in to (relatively) normal family life, and it's been a real baptism of fire. We haven't really left the house much since arriving home on Monday; and why should we - for the first time since September, we have no reason to go anywhere. Everything we need is under this roof.

We've experienced some worries; perhaps now more akin to the kind of worries any new parent would have. There are no nurses or doctors providing 24 hour support, so we have to just use our instinct a lot of the time. I suppose this is where we have the advantage over normal parents; we have known our babies for nearly five months after all, and will therefore know if they're acting differently in any way.

We also still have the heart rate/oxygen saturation monitors, so we're not away from all the beeps of NICU just yet - not until both of them are completely free of additional oxygen. This makes manoeuvring around quite difficult. Willow needs to be attached to oxygen all the time, so when it's time for bed we have to detach her from the downstairs supply quite quickly and run upstairs to plug her in there. We have a portable bottle to carry around if we do venture outside, and we did have our first outing today. We walked around the block to try out the buggy, trying not to keep our eyes attached to the monitors but looking at the babies instead.

One thing we have learnt, is that having two babies to look after is a full time job for two people. There's not a lot of time for sleeping, eating or anything else. But who cares about any of that. It's so amazing having them at home; being able to know exactly what they're doing all the time. They're doing really well too - generally going four or five hours between feeds, and doing a lot of sleeping. We just need to get them - and us - sleeping at the same time.  Not sure how easy that's going to be though.

Willow's diarrheoa has now disappeared; her stools are well and truly solid. Maybe she just wanted to come home. We've had some lovely moments as a family; just sitting in the lounge, listening to music and smiling at each other. Just normal things that we've dreamed of doing for so long.

Today we're making a trip back to Poole, but this time as out-patients. Stanley needs to have some more immunisations so we'll be popping back into NICU for a while. We might even do something normal afterwards, like go for a walk around the park. How about that.

No time for writing just yet - here are some pictures....

Chillaxing on the sofa..

Willow's fist showing Stanley who's boss

Willow being very inquisitive as usual

             


                                    

Monday 14th February

Today was officially the best day of all time. Things were going well from the start - the new Bright Eyes album was released today (and it's amazing), the sun was shining, the morning NICU phonecall was another good one, the bus was just pulling up to the stop as I got there, and I had the exact change for it in my pocket.

More importantly, we arrived at the hospital this morning knowing that we'd be coming out of there as a family of four for the first time. In fact, we'd known since the doctors' round last Tuesday that today was to be the day of our release, on the condition that neither Willow or Stanley got up to any funny business in the meantime. We didn't tell anyone about this, in case it didn't happen again. We couldn't be dealing with explaining to everyone why they're still not home.

So, as I had some things to tie up at work before I could have two whole weeks off, Leela went in on her own again today and I followed on the number 15 a few hours later. Just as I arrived, the doc was about to start doing the final check of our babies to tell us if they were allowed to go home or not. Both of them passed the test, and were given the all-clear.

So that was it then, we were free to go. After 143 days, over 2,000 miles, a parking fine, a car crash, 65 train tickets (only three of which even got checked), two hospitals, ten different cot locations, a PDA ligation, about fourteen blood transfusions, two rounds of steroids, 45 americanos, 32 BP meal deals, 300 phone calls to NICU, a whole Christmas silly season, far too many Zinger towers and 143 sleepless nights, we were finally all going home, together. It was an exciting and scary, but most of all unbelievably happy moment.

We're quite sad to be leaving behind the NICU family who have looked after and put up with us for the last third of a year. We're not going to have anyone to ask a million questions to every day, and generally look really worried in front of. The support we've had as parents is more than anyone could hope for in this situation; sometimes it's even been a pleasure being there. The nurses always know the right thing to say. One thing I remember someone said after about three days in, was quite simply 'We'll get them through this'. Something in the way she said it made me believe her, despite the fact that so early on, no-one could have known what might happen, or known how joyful or terrible the outcome might have been. But those few words were said with such confidence that they kept ringing in my head the whole time we were in there. There were some moments that were just too awful to comprehend. When Willow came back from Southampton and her lungs were in such a dire state, we really didn't know if she'd make it out of there. But her little fighting spirit was what pulled her through in the end; we really shouldn't have even doubted her. If they can both get through this, they'll get through anything life decides to throw at them.

So we said some emotional goodbyes, and walked out of NICU for the last time as residents. We were now those annoying people coming out of the hospital with the car seats, who we'd been looking at so bitterly since September. It didn't seem quite real, and still doesn't.  We are now actual parents, and have full responsibility for these two precious little humans.

We're coping reasonably well so far, although it does get quite hectic when both the babies wake up hungry at the same time. It's still a pain having to cart around oxygen bottles and sat monitors everywhere we go, but that's a small price to pay for having them home with us. We're going to spend the next few days hibernating; just the four of us getting to know each other. We're going to have to be extremely strict with infection control. After seeing what happens to them when they get an infection, it's not worth taking the risk. So no-one other than immediate family will be able to handle them for a few months, until the summer arrives and brings with it less germs than winter.

Usually, right about now, I'd be phoning the NICU hotline for an update on how our children are getting on; each time dreading bad news on the other end of the line. Now, we just have to look across the room and see them fast asleep, dreaming of eating and never far off waking.

So today is the start of the next phase in the lives of Willow and Stanley. Their story so far has seen a lot more stress and troubles than most people would think is possible. We're ready now for the next installment, and we can't wait to share all their future adventures with them.

Sunday 13th February

After a very enjoyable stag night in Devon yesterday, Sunday morning welcomed me with something I've not experienced much recently - a stinking hangover. Not the best thing to take with you to NICU, as it would make the bad things a whole lot worse. Thankfully though today, there wasn't any of that.

This evening, while back at home, the song 'Wires' by Athlete came on the radio. It's one that completely passed me by when it first came out, as it meant nothing to me whatsoever. Now, it has a totally different effect. Listening to that, while looking at the first photos of Willow and Stanley, really brought it all back into perspective and it touched us both a lot more than it did when we heard it three or four months ago. If this whole nightmare all happened again right now and we had to see our babies lying helpless with tubes down their throats and wires all over them for weeks on end, we'd crack up completely. The difference is back then, they weren't really our babies, they were just these small creatures who we hadn't got to know yet.

Now, they are definitely our children and there are signs that they may be coming home with us in the not-too-distant future. They were looking stronger than ever today, still growing very nicely and doing everything they should be doing. Willow's eyes were following both of us as we moved around the room; which is very reassuring. Every little normal thing such as this that they do is one small box ticked on our lengthy worry list we have in our heads. We're pretty sure that both of them won't get through what the last 20 weeks has thrown at them completely unscathed; but at the moment they're making all the right moves.

Another Monday tomorrow then, to move us further into week 21. Hopefully this week will continue to throw nice things at us.

Saturday 12th February

It’s Mummy Senior writing this tonight as Daddy Senior is gallivanting in Exeter with Woody Woodpecker – happy stag, Simon!


We are now half an hour into Sunday and I have only just finished cleaning having come home from the babies earlier than normal with the intention of getting the house cleaned up and ready for the (hopefully) imminent arrival home of our babies. About time I say, it was 20 weeks on Friday. When you think that it will be July in 20 weeks time it really illustrates how long it has been. Driving away and leaving your babies behind doesn’t get easier and the butterflies of excitement I get arriving at the hospital each day don’t diminish with time either. If anything all our emotions are heightened at the moment. I feel terrified that something will happen that will mean our discharge is put back again and of course the thought of having them at home without our ‘2nd family’ around is pretty daunting too!

Both babies have now done the car seat test, which is just sitting in the seat whilst their sats are monitored. Willow loved it and had a little grin on her face for most of the time but Stanley was less impressed and looked up at me like I’d gone mad. They both got a tick in the box for that test and Stanley was rewarded with yet more milk.

The babies had an injection of Synagis today. It is designed to prevent RSV which is a nasty cold virus which, should they catch it, would almost certainly see them back in hospital on some kind of breathing support, maybe even a ventilator. Not all babies receive this injection as it is incredibly expensive but due to their Chronic Lung Disease they meet the criteria. The thought of them getting an infection when they are home is scary as, due to their lowered immune system and poor lungs, they will find it hard to fight – as illustrated with their latest infection that saw them back in intensive care. I bought 5 bottles of alcohol gel today and have positioned it all round the house in preparation!

It’s now 12.50am, the tumble dryer has just finished and I have just turned off the radio. The quiet that I am now faced with is such an empty one if that makes sense. It’s funny but although we have been together for 11 years and lived just the two of us for most of that time, it has only been since the 24th September that the quiet is so empty. Something is missing around here and I think it’s about time they came home!

Thursday 10th to Friday 11th February

Progress has continued to be made in NICU this week. Willow and Stanley and their smiles are growing bigger every day. The quarantine is still in full effect, so we're getting quite adept at negotiating babies as they slide all over the place on the plastic aprons.

We parents selfishly enjoyed a lovely dinner and a few drinks at Rhinefield House last night; something that we won't be able to do for a while soon, especially without the highly-trained babysitters of whose services we currently have the luxury. More than anything, it was nice to drive somewhere other than Poole for once. There is apparently more to the world than the assortment of roads between Moordown and St Mary's Maternity Hospital.

We're just hoping now that things keep going as they are. At this rate, the great escape might manifest itself within a week or two; but we're still being very cautious and not getting carried away with ourselves.

"I am very cute"

Tuesday 8th to Wednesday 9th February

Two very busy days for the four of us. Lots of work, baby activities and eating.

Wilow and Stanley have been well behaved again; not much changing with them at the moment, which is good. Stanley is smiling more and more every day, and Willow is very nearly there. Willow is still having the odd de-saturation, particularly during and after feeding. She does seem to be coming out of these epsiodes herself though, so hopefully this is more of a positive sign than a negative one.

The 'poo room' is still a poo room; babies with tummies which are still a bit runny. Nothing has come back from the lab yet as positive for viruses or bacteria; so the mystery continues. What it means for us is that we're using up a lot of latex gloves and plastic aprons. We've almost forgotten what it feels like to touch our babies' skin.

Tomorrow, as it's the 11th anniversary of the day we got together in the glamorous surroundings of 'Ritzy's' nightclub in Plymouth, we're treating ourselves to some fine dining and a night of good old self-indulgence in the New Forest. We're nearly at the end of our lives as irresponsible adults; soon to be entering the next phase as actual parents. And we'll never be more ready for that next phase to commence.

Monday 7th February

This time, Monday morning brought with it a positive overnight report from the hospital. Much better than last Monday's anyway, which was on the other end of the scale. It's amazing how much things can change in a week.

Another good day for Willow and Stanley; a slightly less stressful day for the parents. Things are going well at the moment, apart from Willow's continued 'squits' (which seems to be the official term).

They've both been weighed again - Willow is 9lbs 8oz, Stanley is 10lbs 7oz. So no worries in the weight gain department; that box on the discharge list is well and truly ticked.

We're still not speculating about when they might be home; it always ends in disappointment. So we'll just take each day as it comes. The next big day in the calendar is next Monday - Valentine's Day. As much as we dislike the commercial hell that it has come to be, it would've been quite nice for our babies to come home on the 'day of love'. That is very unlikely to happen though. So, next on the list is my birthday, the 8th of March. Surely, they won't still be in hospital by then...

Sunday 6th February

The parents seem to be having a tougher time than the babies at the moment. Willow and Stanley are coming along quite nicely, apart from Willow's dodgy tummy. All her results have come back negative, which is good I suppose. But it would be nice to have some kind of answer as to what's causing it. Perhaps we're not eating enough curry.

We're still wearing aprons and gloves to touch either child, and no sign of the quarantine zone being lifted just yet. It could turn out that it will remain like this until the babies are released into the community.

We should stop being so negative though - our situation could be so much worse than it is. You read stuff in the news about people losing their babies at 6 or 7 months pregnant. Those babies didn't even have a chance. At least we are where we are now - with two very strong little children who have every chance to thrive in life.

So, perhaps we should learn something from Willow and Stanley. Despite all they've been through, they're able to smile through it all, and they've never given up.

It really won't be long now - we just need to hang in there for another couple of weeks.

Saturday 5th February

Yet another weekend in NICU. We were both pretty fed up and moaning all day today; no doubt annoying the very patient nurses and everyone else. Really just want to get out of there now.

Willow is still in the 'dirty baby' room, and Stanley is in the 'clean baby' room, so we now have to wear plastic aprons and gloves when handling Stanley too, in order to prevent infections spreading between different rooms. Although we can obviously see the need to do this, it was really the icing on the cake today. It's no fun trying to feed and burp your baby while wearing a slippery apron and gloves. It will be so nice when one day, we can just pick up Willow or Stanley, and feed them like a normal person.

So, even though nothing really bad happened today, we've been grumpy and miserable nonetheless. So we took our miserable grumpiness to Willow and Stanley's aunty and uncle for a tasty dinner, and left feeling much better.

Two positive status reports later, it's now Sunday morning and time for a bacon sarnie. After that, we might go to Poole, just for a change.

Friday 4th February

There were no phonecalls again last night, and a positive status update this morning. Maybe, at last, we're on the final stretch.

Stanley was moved out of the main intensive care room again today, into the smaller nursery.Willow is still quarantined in the larger nursery, where we have to wear aprons and gloves when handling her. It makes feeding and changing a rather slippery experience for both parent and baby, but we don't want to risk spreading any potential infections all around the place.

We might be biased, but we reckon ours are the cutest babies in NICU. They have had 19 weeks to perfect their cuteness though, so it's not surprising. Stanley has the cheekiest cheeks, and Willow has the most amazing eyes, inherited from her mother's side.

We've had an almost normal Friday night after finally arriving home, including fish and chips, wine and loud music. All we need now is a couple of babies to share those things with us. Well, maybe not the wine. Or the fish. Or the chips. Just yet.

Thursday 3rd February

It's day 132 in the lives of Willow and Stanley.

We didn't sleep much last night, half expecting the phone to ring at any time. In fact, it never did. The morning call actually brought with it positive news; both the kids had been very good overnight.

While I was spending far too much time at work today, Stanley was smiling away again with his mummy in the main room. Willow was still in the quarantined nursery, but she looked like she's getting better. By the time we left in the evening, her runny tummy was a tummy that was not quite as runny. Hopefully she and her brother will be back together again in the next couple of days.

We think the babies are ready to come home now. We might try and smuggle them out of the unit tomorrow in the NICU pram.

Wednesday 2nd February

A pretty standard day today in NICU, full of ups and downs.

The down bit being that Willow is still in the 'poo room', and that one of the babies in there has now become a bit more ill. It might just mean that the baby is not coping as well with the tummy bug as the others, and nothing more serious than that. But it's enough to worry us anyway. Willow was looking really awake and alert though; other than her nappy contents she looks perfectly alright.

Stanley is still getting stronger again after his infection, and today I saw him really smile for the first time. He'd done it a few times already for Mummy earlier in the week, but today was my first proper one. It's definitely up there with the best moments of the last 130 days, if not the last 32 years 11 months. It's quite an indescribable feeling seeing stuff like that; something you just don't feel until you have children. We can't wait to see Willow do the same now; she's been threatening for a couple of weeks.

Every day now is becoming a real drag - we just want them home with us.

Now that's better, Stanley

Tuesday 1st February

Can't believe it's February already, and here we are still living in NICU. If someone had told us back in September that we'd still be here at this time, we wouldn't have been able to cope.

Today had its ups and downs, as usual. Willow has been quarantined in the nursery with a few other babies, as she has diarrhoea. Hopefully nothing too serious; just a bit of a bug.

Stanley had a lumbar puncture today, which meant another few hours of sweating and shaking, waiting for the result. Again, like his sister's test, it was clear - no nasty little organisms infiltrating his spinal fluid. He was much better again today; back off the oxygen completely and being more his hungry self.

Willow's also been quite hungry of late, which shows in her current weight of 8lbs 8oz. Stanley is still growing nicely at 9lbs 12oz.

Watching Big Fat Gypsy Weddings when we got home made us feel much better. It could be worse - we could be gyppos.

Monday 31st January

After one of the worst weekends of the last 18, and therefore one of the worst of all time, we could have done with an easy Monday. Did we get one? Of course not.

At 8:40 in the morning, the phone started ringing. The only people who would phone us at that time would be a recorded message telling us we've won a yachting holiday in the Bristol Channel if we call them back on their £20 a minute number, or NICU. And it wasn't the yacht.

The call from NICU was about Stanley today. He too has been moved back into intensive care after having a serious episode requiring resuscitation. The assumption was that he had the same infection as Willow, so he was started on the same antibiotics and required some oxygen for the first time in a few weeks. I was actually on the way to work when Leela received the call, so she went in on her own. Stanley was really quite unwell; he had a further couple of episodes and was pretty unstable for a couple of hours. It was bad enough for me at work, staring at the phone, let alone for Leela being at the hospital and having to watch our son like that.

I gave up with work just after midday and went to the hospital. I was no use to anyone in the office. When I arrived, Stanley was still looking quite ill and de-saturating, but was apparently much better than earlier. So it looked like the antibiotics were doing their job. As the day went on, he improved loads and his oxygen requirements had come down to almost nothing. His bloods came back from the lab and it looked like they were growing the same bug as Willow, so at least we had a reason for his poorliness. By the time we left, he was much more stable and acting a bit more like himself.

Willow was doing really well today; funnily enough her oxygen requirements have actually come down a bit since her infection.

Surely this is the last hurdle we're going to have to face - we've had just about enough of the NICU rollercoaster now, and we're going to run out of new cot positions to try out.

Sunday 30th January

The man-flu was still lingering today. I didn't want to just stand around looking at my children without being able to hold them, so made myself useful and went back home to carry on with household alterations using my new 'Dad DIY' skills. The latest piece of architrave went up in a flash; I'm getting used to this now.

Back in the hospital, Leela was splitting her time between the Intensive and Special Care areas, ensuring both Willow and Stanley were kept fed and entertained. Willow was better again today; her CRP (C-reactive protein; rises when there is an infection on board) had come down from 79 to 39. So she seems to be fighting the infection nicely and quite quickly, but will stay where she is for a few days until finishing the 5 day course of antibiotics.

Stanley is getting on very well in the nursery, screaming the house down if his food is 30 seconds late. His feeding is still going well since the formula change; so he really is on the home straight now. We're still not going to speculate about when homecoming might actually be, but it could potentially be before Christmas. 2013. That would be nice.

Saturday 29th January

Bloody hell, I thought it would be getting easier by now.

With my man-flu still just about hanging around, and some DIY to be finished, Leela went in to the hospital on her own again this morning. Not long after she arrived there, she called me to reveal today's latest developments.

Willow had just had a lumbar puncture, which is a procedure carried out to test some spinal fluid for an indication that the infection had reached her brain. Willow's blood cultures came back last night as positive for Strep B, which usually only occurs in babies straight after they're born, or 90 days after. Any other time and it usually comes in the form of meningitis or septicaemia; hence the need for a lumbar puncture.

So anyway, I did some googling after that phonecall. Which was bad. I broke the golden rule of having a baby in intensive care - 'Don't google'. You will always focus on the most negative thing that Wikipedia tells you. After reading the statistics for Strep B infections, such as 1 in 10 babies will die of blood poisoning, and if they survive, 1 in 5 will be severely disabled, my brain went into overdrive as usual. I thought, sod this woodwork, and got a taxi to the hospital so I could be there with Leela when they broke the bad news of the results.

Just as I got there, the news was being broken to Leela. And it wasn't bad.

Another one of those glorious moments you get in NICU when things turn out to not be as horrible as they possibly could be. Willow did not have any infection in her brain; in fact this Strep B bug was probably just on the skin as the needle was going in to take some blood for the initial test.

Our daughter was looking much better today, so the cocktail of antibiotics she is taking appear to be doing their job and killing anything nasty. She was looking as lovely as usual, completely oblivious to all this fuss going on around her. Back in the nursery, her brother had another good day. He appears to be free of any infections, and spent most of the day sprawled out in the big double cot.

Just another family Saturday together then. Could do with a more normal one soon.

Friday 28th January

If you receive a phonecall from NICU in the morning, you know there and then that you're not going to have a nice day. They'll never phone for a positive reason. The last time we got a call was back in October, when they told us that Willow had been put back on the ventilator.

This morning, it was because Willow was moved back into intensive care from the nursery. She'd had a couple of bagging episodes, and a very high temperature. This might indicate that she's got an infection, so she was returned to her former home and started on some antibiotics as a precaution. To make it worse, I've got a cold today, so can't go in to see my babies, and am full of guilt that I might have given Willow some kind of illness. These are not ingredients to make a happy Friday for anyone. Luckily though, I'd bought some custard creams and digestives yesterday, and we have enough Yorkshire tea to last a good few days. Must have known something like this was going to happen.

Anyway, life goes on, so I got stuck into working from home. Can't be dealing with seeing people, having questions about whether we've got a date yet to be coming home. No, we haven't got a bloody date yet.

The day did get better, and not just because of a tea/biscuit overdose. Willow had an x-ray, and it looked clear - no sign of pneumonia or anything of the sinister variety. Also, her bloods didn't show any real signs of infection, and she doesn't seem to be struggling with her breathing. She just occasionally has these bradycardias, and it's all a bit of a mystery. It could be that the infection has been caught nice and early; another blood test tomorrow will tell us more.

So Leela was on her own in the hospital today while I struggled with my bout of man-flu, did loads of work, and cooked sausage and mash for dinner. Hopefully I'll be feeling better tomorrow so we can have a nice family Saturday in NICU, for a change.