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.