Saturday 29th January

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

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

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

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

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

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

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

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

Friday 28th January

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

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

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

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

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

Thursday 27th January

Well, that was a crappy way to start our stay in the nursery.

I called this morning to check on the kids. They'd had a perfect night, until poor Willow had one of her episodes and needed bagging again. We were just so totally fed up after hearing that; wondering if this really is ever going to end. Each time this happens, it adds at least two weeks to our departure date.

We're hoping there is a reason for it though. Willow was started on the same new formula as Stanley yesterday, to see if it would help her reflux a bit. It seems to have had the opposite effect though - she is de-saturating quite a bit while feeding and is having more bradycardias. She's now back on what she was on before, so hopefully this will restore her exemplary feeding skills. Tomorrow's morning status report should give us an indication as to how that's working out.

Other than all that stuff, both of our perfect little bundles of joy seem to be enjoying their new home. Let's hope they don't get too used to it though; we don't want to be here forever, thank you.

Wednesday 26th January

Big day today. By the time I eventually got to the hospital after work, I discovered my babies had moved house. They were finally in the nursery, so slightly closer to the exit. It's taken 17 weeks and 5 days, but we got there eventually. We're now officially no longer in 'intensive care'; now merely 'special care'.

Hopefully we're not going to be in there for too long, but I'm sure that while we're there our babies will be just as well looked after as they have been until now.

Willow was looking so beautiful today - when she opens her eyes and looks around, she can melt anyone's heart who is in the room. And her little brother Stanley has got such a cheeky chubby face to match his character - we just can't wait to see them develop. The sooner we can get them home, the more we can get to know them and appreciate every minute before they grow up too soon.

It was nearly 10pm when we finally had dinner tonight, after which I had to finish working. So it was KFC again that provided us with much-needed fodder. The service wasn't too good tonight though; probably the slowest fast food we've had in a while. They generally employ two non-English speaking students to serve customers - one at the front, taking orders, and another one to stand behind, looking frightened. Despite these problems, they do still manage to serve up some tasty chicken.

Tuesday 25th January

Well, that was better. On the first day into their fifth month of life, both Willow and Stanley behaved impeccably. Stanley's switch to a different formula has apparently done the trick; he has been feeding almost perfectly since starting on the Enfamil.

They're really starting to show more of their personalities now, both of them wanting a lot of stimulation during their awake, alert periods. It's a shame we're not always there to be with them at those times, especially now that they're giving us proper smiles too.

They were both weighed again today - and showed more phenomenal growth. Willow is 8lbs 3oz, still just behind Stanley at 9lbs 4oz. They're almost too big for the double cot; it's definitely nearly time to get them out of there and home. We're not even going to speculate about when that will be now; it'll just be a nice surprise when it does finally happen.

Monday 24th January

Just when we thought our weekend couldn't get any worse, that's exactly what it did.

We'd been completely deflated by Stanley's little hiccup at Sunday lunchtime, so all we needed that night was a nice smooth transition into Monday. But that was too much to ask. At one in the morning, Willow had one of her classic episodes, where she stopped breathing and needed resuscitating. We just hit rock bottom after that - realising that this would add another 2 or 3 weeks until either of them would be coming home. It really feels like it's just never-ending. But we've got to keep going, because that's exactly what Willow and Stanley are doing.

Today, we escorted Stanley over to the main hospital for a bit of a 'barium swallow'. This procedure involves swallowing barium, funnily enough, and it's used to examine the upper gastrointestinal tract via an X ray. We were hoping it may shed some light on Stanley's feeding issues, but at the same time we really didn't want there to be anything fundamentally wrong with anything.

So Stanley, being Stanley, produced a faultless display of perfectly coordinated sucking, swallowing and breathing. He'd never done it so nicely before, but decided to perform in front of an audience while being filmed. The images showed the liquid going exactly where it should be going, with no signs of any trickling into lungs or anywhere else where it shouldn't. The results were therefore inconclusive, but that is much better than being terrible. The plan is try giving him different formula, and try other drugs to combat any reflux.

Willow was perfectly fine today after last night's shenanigans, and looking super-cute as usual. So, the nurses of NICU are lucky enough to be looking after our babies for a good few weeks yet; until hopefully, one day this century, they will be released into the care of their parents.

Sunday 23rd January

Day 122 started pretty well, but soon turned out to be completely rubbish.

The focus at the moment is all on Stanley's feeding. After another change of tactic, his night-time feeds were fantastic, even rivalling those of his sister. But this morning, it all went wrong. Again.

He had another choking episode, turned a frightening purple colour and needed resuscitating. We were completely gutted. This is going to add at least another couple of weeks to our stay here - there is no way he's coming home if there's any chance of this happening.

So right now, we're exhausted from a weekend of non-sleep, and really fed up with everything. 17 and a half weeks would be too long to spend in your favourite holiday resort, let alone in a hospital. We could totally handle the non-sleep, and are not fazed in any way with the thought of having two babies to look after. It's just we really don't want to have to use any skills learned at resuscitation training if we can at all help it.

So, it's a big day tomorrow. We're not sure what the best outcome of Stanley's test would be - but to find nothing sinister would be nice. Hopefully it really is just something 'he'll grow out of' - we could handle that for this one. Just so long as it doesn't take months; I think the BP garage might run out of coffee loyalty cards soon....

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.