Hello again, Southampton

We knew we'd have to come back to Southampton General again, ever since Stanley's check-up back in December revealed that he still had a PDA (patent ductus arteriosus), which was not likely to close by itself. 

To put it simply, a PDA is an open duct in the heart, which causes blood to take a different path than what would be ideal. Before birth, all babies have this open duct -which is okay, because they're not breathing yet. Once they're born, it's supposed to close naturally; but in many premature babies, this doesn't happen. Willow, of course, had a procedure to close her PDA when she was about six weeks old and two pounds in weight. That was the most horrific half an hour of our lives. On the consent form which we had to sign, one of the main risks was, quite simply, death. If anything went wrong, it was an all or nothing scenario - there is not enough blood in a 2lb baby to lose any at all. Anyway - it went pretty well, as it turns out, due to the amazing skill of the surgeon. I get stressed in my job as a business analyst (whatever that is - it's more interesting than it sounds, believe me). How these people manage to hold it together to perform tasks like that, I'll never know. However they do it, there must be many cups of tea involved, and a substantial quantity of biscuits. 

For Stanley, the risks weren't anywhere near as great. Rather than cutting into his back and collapsing a lung to get to the right place, he was going to have a catheter in his main artery instead. It's a much safer, more straightforward procedure; however, that really doesn't make it any easier for the parents. The consent form was much nicer - not even a mention of the word 'death' on it - but to see your child being put to sleep and whisked off somewhere for a couple of hours is never a good thing. 

It was a very long two and a half hours. A trip to Costa for our customary hospital coffee helped us on our way; although since we invested in a proper espresso coffee machine at home, nothing can beat the 'Leela-Special-Americano-or-is-it-a-Flat-White' which has got us through the last few months.

The first 90 minutes were spent worrying about the procedure itself, and the next 60 minutes worrying about Stanley waking up. The consultant came to see us after the procedure was done, to tell us it went very well and was pretty standard. But he then mentioned that Stanley's oxygen saturation wasn't too good when they were trying to wake him up, so it would be a while longer before we could see him. 

Eventually, we were taken down to the 'Cath Lab' to see our son in recovery. And there he was, grinning at a couple of young nurses, as he does so well. It was such a relief - we were both thinking the worst, and that we'd have to see him on a ventilator again, and he'd be taken down to PICU. That didn't happen, and it made us so grateful for him to be okay. Every little thing like this still makes us appreciate everything we've got. There are many sick children on that cardiac ward - we are the lucky ones, who only had to go through a relatively standard procedure. 

Stanley was back to his hungry self in no time, and he's staying the night in Southampton with Mummy while I came back home to look after Willow. 

There's been a lot more happening recently in the lives of Willow and Stanley, including another visit to Brainwave. It's too late now though, but I must try and write something about that before the next six weeks disappears.

Therapy ...

We've all been a bit up and down during the last month. Most of the downs are caused by Stanley's disabillity, unsurprisingly.

We're still trying to come to terms with the fact that our son is disabled. Hopefully it will sink in one day, but at the moment I'm still jumping between feelings of denial and sadness. It's all really because we still simply do not have any idea of the long term prognosis. No professional can give us any inkling as to the end result. Obviously this is because they don't really know, plus they don't want to give us false hope or make the situation feel hopeless. But surely they must have some slight idea of where we might be heading. Through years of experience of similar children, there must be at least a range within they can expect him to be. Anyway, being stuck in limbo between the two extremes - ie thinking that either he might end up walking slightly wonkily, or he'll be bound to a wheelchair forever - is sometimes too much to bear.

This time last year, there were no obvious signs of anything wrong. A month later, there was a slight possibility that Stanley may have a very mild case of cerebral palsy. Two months after that, it was more definite, and had moved from mild to moderate. For the next six months, we were thinking it was the mild end of moderate (whatever the hell that means), and no-one gave us any reason to think otherwise. Come January at Brainwave, they told us it was more like the medium to severe end of moderate.

Despite that bombshell being really bad news, we felt so much better. Simply because someone gave us their honest opinion. I know that health professionals are not allowed to give us their own opinion, but it really is the most frustrating thing about it all. Just give us worst case scenario, please - that would be better than nothing. Tell us it's a severe case, then at least anything else will be a bonus.

Anyway, at least Stanley is oblivious to both his parents having their weekly breakdowns, and for most of the time, he's really happy. The rest of the time, he's uncomfortable, not happy and moving in all the wrong ways which we need to encourage him to stop doing. This makes it so much harder to look after him, and it just makes us sad that he can't do things that he should be doing.

So, there's a lot of therapy happening at the moment. Physiotherapy, occupational therapy, hydrotherapy, music therapy, speech and language therapy, hippotherapy. The latter - hippotherapy - is a relatively new thing we're trying out for Stanley, and it has nothing to do with a hippo. It's all about horses, in fact (from the Greek hippos, meaning horse). There's a theory that the therapeutic movements of a horse (or in Stanley's case, a mechanical version of one), can be used during physiotherapy to help strengthen his trunk - which is the part of his body which is most affected, and holds the key to doing stuff like sitting and walking. In other words, everything that you and I take for granted. I'd never realised just how much goes into walking - it's just something that you can do. But when you think about how a baby can go from doing not a lot, to properly walking on two feet in roughly a year, it's pretty amazing. The day that Stanley achieves that goal - assuming he will - will surely be the best day ever.

Other than the obvious physical ailments, Stanley is still winning over everyone he meets with his glorious smile and his cheekiness. He'll definitely have no problem charming his way into anything he needs in life.

Willow, meanwhile, is getting along just as she was. She's really clever, and is ridiculously determined. She's got such an amazing little personality, and makes Leela and I laugh so much every day. We can see already that she'll be helping her brother whenever he needs it. She'll take him his toys, his shoes, and stroke his head. It's so nice seeing them interact, play and laugh together.

When they're like that and we're all having fun, everything is perfect. It's just this stupid bastard niggling little bit of brain damage that is getting in the way of us having nothing to worry about and enjoying every moment as a family.  

18 months and counting...

So, it's been a while since the last post. Spare time is one thing I just don't have anymore - but that's probably a good thing. I only ever used to waste spare time anyway.

Since the start of the year, things have generally been on the up in the Senior household. Along with Stanley's cerebral palsy, the main focus has still been to keep away from germs and illnesses for as long as possible. Our aim was to start being 'normal' from the end of this winter. (By 'normal', I mean interacting with other people, going inside public places, not dipping the children's hands in alcohol gel every time someone brushes past them, that kind of thing...)

Willow was still receiving synagis injections until February. These are to give protection against a bug called RSV. To any normal adult or child, this would just manifest itself as a bad cold - but to a baby with chronic lung disease, or those with a history of lung problems, it can be much more serious. The images of Willow's last lung x-ray back in October 2010 are still etched in our minds, and will probably stay there forever. It's not worth the risk of having to go back through another hospital stint.

So, we managed a whole year since the release from hospital without having to go back in; no-one in NICU would ever have believed that if we told them that last February. If anyone was a dead cert to be re-admitted, it would be Willow. It just so happens that Willow is the most amazing little girl we could ever wish to call our daughter, and she's not going to let anything like that happen.

As well as keeping healthy, Stanley's physical development is still a main priority at the moment. Since our visit to Brainwave, we've been doing a half-hour physio routine with him six days a week, along with general physio throughout the day. He seems to be responding to it really well - and has been noticeably much happier since it started.

He still can't sit up unsupported. Our target of being able to sit up by Christmas was wholly unrealistic, it seems. We'll now be happy if he can do it before his second birthday. The rule of thumb is, if a child can't sit independently by the time they're two, they won't be able to walk. This is the 'corrected' age of two - so Stanley does have until the end of the year, but we're hoping it will be sooner. It's getting to the point now where he's just too big for us to be plonking him on the floor in a lying position. He should be sitting up, or even walking, like his sister. This makes it so much more difficult to look after him. People often say 'at least you haven't got two of them running around in opposite directions then...' like that's a good thing. Actually, it would be a million times easier if that were the case. I just can't imagine how amazing it would be to not have something like CP to worry about.

The thing is, if neither of them were affected in any way, I know that I wouldn't appreciate how good we had it. In a way, it's only by having a child with a condition like Stanley's that makes us realise just how lucky we are as it is. I just keep thinking, it could be so much worse.

But some days, it all just dawns on me again - that Stanley is disabled, and he always will be. He'll need physio every day for the rest of his life. I just wish I could take it all away from him.

Despite all this, we just take every day as it comes. There's no point dwelling on how things may or may not turn out - we just have to do everything we can to make sure he's as comfortable as possible and the outcome is the best it can be.

We all have a lot of fun together, and make the most of every minute of every day. One thing's for sure - it's exhausting being a parent, and I'm only an on-duty one for a couple of hours a day and the weekends. Apart from the small issue of our son having a still-to-be-diagnosed form of quadriplegic cerebral palsy - everything is perfect right now.

Errr...hello?

I'm planning to have a spare one and a half minutes next month sometime, so I might write something in here.

'It's too early to tell....'

We've heard that statement more than enough times in the last fifteen months, and it looks like we'll be hearing it for a while longer.

This week, we took our little family to a place called Brainwave in Somerset. Center Parcs would probably have been more fun, but this centre for brain-injured children was where we decided to take a short break. Stanley has been receiving physiotherapy on and off for the last five months, since being diagnosed with cerebral palsy in the summer. Unfortunately, as good as the quality of treatment that the NHS provide is, at only once a week in six-week blocks, it's just not enough.

If we had an infinite money supply, we'd pay for as much treatment as would be beneficial for Stanley to be given the best chance to live a normal life. That's obviously not the case, but we've been looking for anywhere that could help him a bit more. We came across Brainwave, based in Bridgwater, who have extremely good reviews and have been known to work wonders with children suffering from similar issues. Although it's quite expensive, we'd regret it in five years time if we didn't just give it a go.

So we checked in for a couple of nights, and the physiotherapists got to know (and love) Stanley after spending two whole days with him. They assessed him more closely than anyone has yet, and they've given us a daily routine of exercises to follow, specially designed to help Stanley where he needs it most.

We now understand the underlying problems in a lot more depth, which is going to help us come to terms with Stanley's predicament and how we're going to help him get through it. The prognosis is not great. Although no-one can really give us a definite end result, because things can change so much in the next year or so, the realistic outcome for life at this point is that he should be able to just about walk. It's never really sunk in before, mainly because we've never had enough information to be able to understand the severity of his problem. Despite now knowing this slightly depressing prognosis, at least we can get to grips with it and start thinking about how best to make sure that our son is as happy as he can possibly be.

Although Stanley has his cerebral palsy against him, he has everything else fighting for him. Most importantly, he's extremely motivated. Like his big sister, he's a stubborn little fighter and he's not going to let this bastard affliction get in his way. He's so determined to get to toys and objects that he wants, even if it means dragging himself all the way across a room to get it. He's pretty sharp upstairs too - his intellect appears to be unaffected. These two qualities mean he's got as good a chance as anyone in his situation to get the better of it.

The only thing that really matters in life is that our children are happy. Right now, Stanley has no idea of all the fuss that's going on around him. Life inside a body that doesn't work quite as well as he wants it to, is all he knows. So when we see him smiling and laughing, we know he's genuinely happy. It's just when he gets old enough to understand that it will be harder for him.

The outcome could of course be much better or much worse - no-one knows yet. As we've heard hundreds of times before, 'every baby's different'. We just need to do everything we can, which means, at the moment, making sure he's happy and helping him with his daily workout.

Although all the focus was on Stanley during our visit to Somerset, a little girl by the name of Willow didn't go unnoticed. Stanley's sister is amazingly well-behaved for a one year old. She never made a fuss the whole time, almost as if she knew why we were there and she was supporting her brother. She also won over the hearts of the physios, with her mischevious smile and her delightful disposition. We couldn't wish for more perfect children - we just hope they're on the receiving end of some good luck soon.

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.