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!