Friday 21st to Saturday 22nd January

A very busy couple of days, what with more oxygen being delivered, lots of work to do and moving into our weekend retreat.

There are still question marks around Stanley's feeding; we don't really know why he keeps de-saturating when he starts his feed. On Monday we'll be taking a field trip over the road to the main hospital, where he'll have a special x-ray done to trace some radioactive fluid as he swallows it. This should hopefully confirm that there is no liquid going to his lungs, which could potentially be causing these issues. The most likely answer is that it's just a coordination issue, but he'll not be going home before determining this either way. It's very frustrating; we'd happily take them both home right now - but, obviously it's best to find out exactly what is wrong in case anything needs to be done about it.

Willow, on the other hand, is pretty much ready to go home - so it looks like she will be released this coming week. Her only problem is that she needs a constant supply of oxygen, but that is all taken care of.

Rooming in is going really well - we actually now have time to properly relax, in the relative peace and quiet of Hotel NICU (give or take the constant grumbling from either or both of our children, and the yelps from the labour ward below.) It's so nice just being able to sit and read a paper for the first time in 18 weeks, and not worrying about our babies because they are right here beside us. We had a wonderfully delicious Chinese delivered too, courtesy of Top Wok.

Sleep is not really something we've experienced since we've moved in - these babies are quite demanding little people. But we have to get used to that anyway, so we need the practise.

So, another couple of nights rooming in to come, and hopefully we'll get some positive news regarding Stanley's insides on Monday. By then, we might know a little bit more about when we'll be coming home.

Thursday 20th January

It's lucky we didn't count our chickens.

It turns out it's most likely we won't be taking our babies home next week. Stanley is still having oxygen de-saturations when feeding, and the docs want to know what is causing it before they discharge him. Rightly so; we don't want to take him home if there is any doubt that he's going to be alright.

It's just a bit of a blow after we'd worked ourselves up into thinking that by Tuesday we'd all be home as one happy family. Right now, it looks like Willow is more ready than Stanley is. We wouldn't have thought that a few weeks ago, when she was still clinging onto life with the ventilator while he was happily breathing away on nasal prongs.

This is the famous NICU rollercoaster after all. Surely though, this is going to be the last dip.

The good thing is, we are still rooming in this weekend. Despite Stanley's remaining issues, we're actually very comfortable feeding both of them now, and are looking forward to having them both with us for the first time tomorrow night.

Leela, as the mother, gets the option of tasting the gourmet cuisine of Poole Hospital while we're rooming in; but after September's post-natal experience, we'll probably give that one a miss. I reckon The Gate Of India might get a call to make a special delivery to St Mary's instead.

Wednesday 19th January

When I arrived at NICU after work, I found our two babies fast asleep, being lovingly gazed upon by their mother. They're getting into a nice little routine now; consisting of an eating period, which is becoming less stressful for both child and parent, followed by a very awake period, which involves burping, filling nappies, looking around and 'talking', followed by a lengthy sleeping period. For so many of their 17 weeks of life, we could only helplessly look at them through the glass of the incubators, as they struggled to even live. So to be able to interact with them as normal babies, as we do now, is amazing.

I need to stop eating so much and so quickly - it's a bad example to our children. I think I've given Stanley the hunger gene. He'd had his full day's milk quota by six o'clock this evening; and he'll eat anything that's put anywhere near his mouth, including his sister's fingers. Willow is actually not far behind either; if she didn't still have the 'ventilator effect' voice, her hunger screams would be just as loud as her brother's.

Although we are still cherishing every one of those cries that both of them are getting so good at, I wonder if we'll feel the same after our short break with them at Hotel NICU this weekend. We'll find out soon enough.

Tuesday 18th January

I only had a short spell at the hospital today, between work and a curry, but my time in NICU was one of my favourite moments of my 32 years so far. Willow was more awake and alert than she ever has been tonight - she's suddenly turned a corner and now looks and acts more and more like a normal baby. We were worried about the long term effects of everything she's been through, but to see her like this really gives us reassurance that she might be alright. She's so beautiful and full of energy, I think she could get through anything. She really looks like her mother, and I'm still sure that it's Leela's stubbornness and energy that has got these babies where they are today.

We're only a few days away now from our next (and hopefully last) stint at rooming in, and with Stanley's always improving feeding skills, we are very nearly getting over that last hurdle.

Only three sleeps now til our stay in Hotel NICU - and we're counting every minute.

Monday 17th January

We entered NICU with a feeling of excitement today, as we were having our discharge meeting. This involved a consultant doctor, health visitor, community nurse, dietician and a NICU nurse, and we all discussed the babies and the plan for their release. Originally this was only going to be Stanley's escape we were talking about; but as his sister has pretty much caught up with him, it was for Willow too. It was good to meet the people who would be around to help us should we need any assistance when our children are released into the community.

We've also booked in for another 'rooming in' session this weekend, for three nights with both Willow and Stanley. Hopefully, this will be swiftly followed by the departure of all four of us. We just can't believe we've finally (nearly) made it this far; but perhaps we should not count our chickens just yet - as the last 115 days have taught us, you never know what is around the corner.

Stanley's feeding has been much improved today - hopefully he can just build on that and be the perfect feeder his sister is already. He was weighed again this afternoon, and is now a rather colossal 8lbs 4oz. He'll be too big for his car seat at this rate.

Willow is still coming along nicely, feeding beautifully and letting out wind in a much more lady-like fashion than her little brother. Her oxygen requirements, which have been pretty steady the last few weeks, have even started to come down. She'll still most likely be dependent on oxygen for a few months after coming home though, so we'll put the family visit to Everest base camp on the back burner for a while.

We're not sure what we're going to do with ourselves when we leave; with no nurses to talk to all day, no smashing the car up trying to find a parking space, no capp-americano-latte-ccinos from BP, no tutting and glaring at the locals as they hang out smoking by the hospital entrance, no running after (and generally missing) buses and trains. It's going to be a whole new experience; and the best part of it is that we'll be sharing it all with Willow and Stanley.

Sunday 16th January

Another good day for the junior Seniors.

We may have found a miracle solution for Stanley's feeding issues. It looks like he just needs stimulation by way of a flow of oxygen in his face or up his nose, to remind him he needs to breathe. He's such a guzzler, he'd keep drinking until it came out of his ears if we let him. Hopefully this technique will work anyway, so feeding times will be slightly less stressful.

Willow is still sucking, swallowing and breathing magnificently. She's now moved to having all bottles since last night, and already today, she's coping well with on-demand feeding. This means that the nasal gastric tube has been removed, hopefully for good. So she only has her oxygen prongs obstructing her beautiful little chubbiness. At this rate, we'll have them both sleeping for at least six hours each night by the time they come home. That's one good thing about going through this rubbish; at least they'll be in a good routine. We should think ourselves lucky.

One thing I forgot to mention, is that Stanley had another heart scan the other day - and it looks like his ventricular hypertrophy has disappeared. That's one thing to take off the worry list - let's hope the rest of their potential problems follow suit.

Back at the Senior ranch, a new washing machine and tumble dryer found their way into our kitchen today. The house is coming together nicely, in preparation for those babies arriving home within a week or two. We have a discharge meeting tomorrow, when we'll discuss the plan for the big homecoming. We should find out a date for attempt number two at rooming in - hopefully this time with both of our children.

Saturday 15th January

Today was a positive one, just when we needed one.

It was all getting too much yesterday. Just as we thought the end of the tunnel's light was not too far away, it swiftly slipped out of our sight again.

Willow and Stanley's cuteness hit a new high today. Willow was more alert for longer periods than we'd ever seen her; a sign that she's starting to overcome her tiredness. She's still classified as having chronic lung disease, and is still on a fair amount of oxygen to keep her going; but everything else she's doing is moving her in the right direction. Stanley did some of his best feeding today; a new technique which we were trying seems to be working.

They were both weighed yesterday - Willow is 7lbs 4.5oz, Stanley 7lbs 14.5oz. Both growing well, with cheeks getting chubbier.

Yesterday, the Air Liquide van pulled up outside to deliver some oxygen to our house. We have one cylinder of it in gas form upstairs, and a container of the liquid stuff for downstairs and to re-fill the portable bottle. If we were to think a year ago that right now we'd have to bring children up on oxygen, we'd be terrified. But now, it doesn't faze us at all - it's just normal.

Last night's beer and curry didn't work out; the colonel's chicken came out on top with his offer of zingery towers and hot wings. But tonight, Dosa World delivered Indian food at a level not often seen in this town, to finish of a rather splendid week of culinary finery.

Another Sunday tomorrow then - and hopefully one of the last few Sundays we'll have to spend in a hospital. It won't be long now.

Thursday 13th January and Friday 14th January

Well, that didn't really go according to plan. It turns out that Stanley is just not ready yet to be going home; he still can't co-ordinate his feeding. While having his bottle, he doesn't breathe, de-saturates badly and was choking again today. The Speech and Language team came to visit, and they had no magic solution. Like everything else, 'he'll grow out of it'. Not a lot we can do about it.

So, it's probably going to be another couple of weeks. There's no way we can take him home while there is any risk that he's going to need resuscitating. Because of that, there's no point in us rooming in yet. It's all a bit heartbreaking; we were all geared up for a lovely stay in Hotel NICU, and now it's back to business as usual.

At least this way, Willow might be ready at the same time and they might both be coming home together. Willow is fantastic at feeding; her only problem is that she still has a tendency to stop breathing for no apparent reason. Only when she's had a good period of not doing that, can she be considered as ready.

So, not a great couple of days. Sixteen weeks of spending endless hours amidst the beeps, noises, stresses and strains of an intensive care unit, and it looks like we may have another couple more to go. We're going to have to try and de-stress to prevent distress. At least we have a nice clean house courtesy of a Nanna and a couple of aunties, who we are very grateful to.

Ok, so.......Friday night traditionally means beer and curry. Sounds good to me.

Wednesday 12th January

Today was a big day - we were moving in to the NHS funded luxury of Hotel NICU.

But unfortunately, the big day didn't start all that well. The midnight call after our lovely evening out revealed that Willow had needed the bag treatment once again. It was twelve days since her last one, so we'd thought we'd left that era behind us. Hopefully this was the very last - she had teetered on the edge a couple of times since New Year, but never to that extent. This time she just needed that extra bit of help.

Unfortunately, the big day didn't continue all that well either. It was Stanley's turn in the evening; he choked on his milk, and stopped breathing for a minute or two. Our friend, the bag, was pulled out again to bring him around. It was really just a one-off though - he just needs to learn to drink more slowly, and calm down a bit. The 'Speech and Langauge' team are having a look at him on Friday to see if they can suggest anything to improve his co-ordination.

Anyway, the important thing is, this event did not impact our stay in the 'rooming-in' suite, so we checked in and had a look around our room. The view is hardly Hong Kong harbour, but it's not all bad. You can clearly see the corridor to the ante-natal unit across the courtyard, and from the ground floor, you can hear the piercing screams of ladies in labour. Who needs champagne breakfasts, rooftop swimming pools and complimentary bathrobes and slippers; all those luxuries fade into insignificance if we have our babies with us.

We were very excited as we wheeled our son into the room, but sad to leave poor Willow behind on her own in the double cot. Once in the room, where Stanley was nice and asleep, we thought...'right, what do we do now then?' So we just looked at him, and waited for him to wake up and want some food. He behaved very well all night, only waking at 03:30 for a feed and not again until 07:30. We would've slept rather well were it not for the lack of a duvet, so we'll bring our own non-NHS issue covers tonight.

It was so nice just relaxing with our baby boy as he grumbled away, having a good look around this strange new environment he found himself in. It won't be too long til we can bring Willow into our little world as well.

Tuesday 11th January

Today is our last day before 'rooming in' with Stanley. Although we'll probably come home again for a few days without a child, we decided to make the most of this occasion by going out for a nice dinner. So, only Isabel's would do the trick, and do the trick it certainly did. A faultless experience as always; some glorious venison, lamb, and countless other impeccable items to savour, washed down with a lovely bottle of vino.

Before we enjoyed all that self indulgence, we took it in turns to visit the babies while our respective other halves had other thngs to do (like work). Willow and Stanley were superbly behaved again today, and extremely pleasant to be with. It gets harder to leave them every day; but of course, we know that soon we just won't ever have to leave them. And we can't wait for that day, when we can say goodnight and walk a few feet away, rather than saying goodnight and driving six miles away.

Anyway, it's only 11:30 for a change, so plenty of time to get to sleep before getting up at 6am again. So, we'd best continue where we left off and crack open another bottle....or just go to sleep.