Thursday 30 December 2010

Thursday 30th December

In a perfect world, today is the day Willow and Stanley would have been born. But, as the course of the last 97 days has demonstrated, this world sure aint perfect.

The day got off to a bad start, with the morning call revealing that Willow had two episodes overnight requiring resuscitation. We're not sure how much more of this we can cope with; and how long it's going to take for her to stop doing it. The answer we always get is 'she'll grow out of it'. We know that no-one can really know when this is going to happen, but it's just very frustrating and disheartening.

The day didn't end very well either; Willow had two further episodes, both during feeds. It looks like it's just due to a bit of reflux, combined with other bodily motions, and 'she'll grow out of it'. We're really fed up right now; the last thing I need after a long day at work is for my baby daughter to stop breathing and turn blue while I'm feeding her, then need resuscitating by a team of nurses and doctors. Leela's completely exhausted too; all she seems to do is express milk all day into plastic bottles. Yes, we know it's going to be difficult when they're at home, but at least they'll be with us, and hopefully breathing, all the time. It gets to the point that you want to just cry, but haven't got the energy to do it.

Bloody hell, this is a depressing installment.

Anyway.... on the other side of the cot, Stanley is doing much better; he's been breathing normal air now for a few days, and he's starting to get the hang of bottle-feeding. His sister is actually still ahead of him on that front - she does take a bottle well when she's in the mood.

So, after a late night dinner of spicy refried beans on toast, the roller coaster continues into day 98. Let's make Day 98 a happy one, children.

Wednesday 29 December 2010

Wednesday 29th December

Today didn't get off to the best start - Willow needed resuscitating again this morning. We're wondering when it's going to stop; we certainly can't cope with this when she's at home.

The days are still merging into one long one; it's difficult to remember what happened this morning. The babies were generally okay today, but Willow had a couple of almost-bagging incidents. The fact that she does pick herself up eventually is a good thing - hopefully she is growing out of it. Tomorrow is their official due date, so ideally everything will fall into place on this day. All we need now is for both of them to take from a bottle at each feed, and for Willow to convince everyone that she is not going to have these episodes where she just stops breathing and slows her heart rate to a scarily low number.

It looks like a late dinner again tonight - we haven't eaten our evening meal before 9.30pm in a long time. And it's been a good nine hours since our BP Meal Deal, so I'm starving as usual. I can totally understand why these babies start crying before each feed-time; it's only my slightly advanced maturity which stops me from doing the same.

So, it's a big day tomorrow, kids - 40 weeks gestation. Let's show these doctors what you're made of, so we can move into the nursery before your 100 day birthday.

Tuesday 28th December

I was a bit nervous before the morning call today, after Willow's first night off CPAP for a week or so. She looks so much stronger now that she should be ready for it, but it's still a worry. Anyway, it turns out she coped well all night, with not a bag in sight. I'm getting used to these short but sweet phonecalls - long may they continue. (Well, not too long, we want to be out of here at some point.)

I stayed at home today to use my new 'dad' carpentry skills on a bit of architraving; I didn't even know what an architrave was three months ago. Eventually I went home to NICU to find the wife and kids in their usual corner. They've had another good day, breathing nicely and drinking all their milk.

We just need a few more weeks of days like these, and we'll be taking our babies home for the first time - so the real hard (but nice) work can begin.

Monday 27 December 2010

Sunday 26th and Monday 27th December

It made a refreshing change for a Boxing Day to not wake up with a horrible hangover. We decided to make the most of it and have a lie-in, for the first time in three months - and it was much needed. We went to the hospital in the late afternoon, feeling a lot more awake and alert than usual after a good long sleep.

The babies were also awake and alert - Willow especially has come on so much in the last few days. She handles everything so much better; it wasn't long ago that her oxygen saturation levels would plummet every time we even changed her nappy or picked her up. Now she copes it with it all; even improving her sats with contact. They both seem to be a lot happier since they've been together in the double cot, so surely the fact that they are back together has something to do with it.

Willow and Stanley were both really well behaved for both of these last two days, with only one solitary bagging incident on Boxing Day morning after a feed. The doctors now agree with my theory that the bowels might be contributing to these episodes - maybe I'm in the wrong profession. Or, more likely, maybe they're just agreeing to stop me going on about it. 'Yes, annoying parents, that's right'.

Stanley has a bit of an eye infection again, which looks a bit nasty and is making him slightly agitated. But that doesn't stop him wanting to spread the love - he likes to stick his fingers in his eyes and then wipe it on his sister's hands. We've had to roll up some blankets to make a little barrier between them, while he's feeling contageous.

They were both weighed again today - Stanley is now 6lbs 13oz, and Willow 5lbs 13oz. Their weight gain is very impressive, and it's mainly down to 94 days of their mother's breast milk. The doctors and nurses were commenting again about how well Leela has done to keep up expressing to feed two babies under these circumstances.

During the doctors' morning round, the word 'nursery' was mentioned for the first time. We've been wondering when that might happen since September; when nobody would tell us when we might make it into that room. We know now why they couldn't tell us - nobody could have predicted exactly what course our babies would take, and how different their ordeals would be. But anyway, the only thing that is stopping us moving into the nursery now is that Willow is still slightly dependent on CPAP for a few hours a night. But it shouldn't be long now, they are trying her off it again tonight to see how she gets on.

Sunday 26 December 2010

Saturday 25th December

Well, that was a Christmas with a difference. We got up and drove to Poole hospital, just like any other day. When we arrived at NICU, everyone was jolly and filled with Christmas spirit; and Santa had visited all the babies overnight. There were no stockings this year (NHS cut-backs and all that - well, I'd rather they cut back on stockings than medical equipment), but Willow and Stanley got some lovely presents. Also, as they are long term inmates, they both had an outfit on their cot to wear today. Stanley had a little Santa suit, and Willow was a fairy. They both looked extremely cute, obviously.

Other than a delightful four hours spent at the senior senior Senior household for a traditionally delicious lunch and lots of presents, today was a pretty standard day in NICU. Willow and Stanley both had good days, with Willow especially now growing stronger and stronger. She seems a lot more robust and handles everything so much better. She's also still ahead of Stanley in the milk-drinking department. Willow takes it nice and slowly, remembering to stop for a breath every few seconds. Whereas Stanley just guzzles it down as quickly as possible; as if he is the hungriest man in the world. I have no idea where he gets that from...

We were full of mixed emotions today - very sad to be reminded that our babies are in this condition, and that we are still not at home together; but so happy that we've even got this far. I can't imagine how hard this would've been had they both still been in incubators with no-one really knowing how it would all turn out. There is a new baby in the cot next to Stanley – a 26 weeker, who at 2 and a half pounds is heavier than ours were when they were born. He looks so tiny; it’s hard to believe even now that ours were smaller than that, and looking at his young parents, we just don’t know how they are coping. And perhaps they are not; but when you are landed in this predicament, you really don’t have a choice, and put on this brave face to everyone, including yourselves.

Anyway, we consider ourselves extremely lucky to be in the situation we are in right now; with two beautiful children who will be home and well before we know it (hopefully before next Christmas…..).

Friday 24 December 2010

Friday 24th December

It might be Christmas Eve today, but it's a standard day for our little bundles of joy in the NICU.

This morning I went for a flu jab. I wouldn't normally, but thought I'd better this year; I don't want to risk anything hindering our babies' progress, or any others in the ward. The doctor's waiting room was typically grim; the 'computer says no' lady behind the desk, talking patronisingly to an elderly customer as usual. The room was filled with keen coughers and splutterers, dispersing their germs as far as possible. And to top it off, Cliff Richard's 'Mistletoe and Wine' was spewing out of the cheap, tinny speakers. To make matters worse, it wasn't even the original version - but a panpipe tribute. That is seriously not what you need to hear if you're feeling even slightly unwell. Thankfully, my wait was short - so I got injected with my protection against the influenzas of pigs and birds and whatever else, and left as quickly as possible.

I managed to fit in some quality working from home today, so I can relax a bit more with five continuous days off with the wife and children.

Willow and Stanley were being particularly amazing today. I fed Willow for the first time, and she handled it really well; hardly needing any additional oxygen to keep her going. After she was fed, she was wide awake for a few hours and being more alert than we've ever seen her. In fact, she's so much more lively that she seems like a different baby. Let's hope that this was the final corner she needed to turn.

It was so difficult to leave them tonight; they were both awake and lying in their double cot, checking each other out. It's like they've decided to put this show on for us especially for Christmas. We eventually left the hospital and went for our traditional Christmas Eve meal out, for the last time as just the two of us. We can't wait now for the New Year, when it will no longer by the two of us doing everything together, but the four of us.

Thursday 23rd December

The morning report was a good one. The ratio of good versus bad reports is trending towards the former, although I always expect the worst when calling NICU each day. Anyway, it was good, with nothing to report overnight.

Today was a bit up and down generally, with Willow again needing resuscitating twice with the dreaded bag. I'm getting fed up of mentioning the bag and bagging, so hopefully I won't have to write that word too many more times. It looks like Willow's episodes are to do with a combination of things - including acid reflux and a build-up of gunk at the back of her mouth. So her dose of domperidone has been increased - this helps the gut digest the milk qiucker; plus she's still on the Gaviscon. She's going back on CPAP overnight to give her a bit of a rest too.

Other than that, the kids were good, and doing really well with their bottle-feeding. They were also weighed again today..... Stanley is now 6lbs 6oz, and Willow is 5lbs 9oz, which means they are growing beautifully. The bigger they get, the stronger they become - so every day they are giving themselves a better chance of pulling through this.

Stanley is developing his cry quite nicely; it's already loud enough to wake up the babies down the corridor in the post-natal ward. Willow's voice is still very croaky; the after-effects of the ventilator tube which was down her throat for two months. But I'm sure she'll grow out of that soon; and with her strong will, she will certainly be louder than her brother. Watch out, neighbours, you'll be in for a noisy 2011 with these two.

Wednesday 22 December 2010

Wednesday 22nd December

The morning report was not incredibly positive today; but pretty much as expected. Willow had been off CPAP for two nights running, so it wasn't surprising that she needed a bagging early this morning. She's probably just getting tired; although my theory is that her bowels are causing her to have these episodes, as they always coincide with major movements in that area. But who am I to say - the extent of my medical qualifications is the biology element of my Science GCSE from 1994.

While at work I received a call from Leela, who was at the hospital first thing this morning. Willow and Stanley had both just had their eyes checked again for ROP - and they are both in the clear. They've even been officially discharged by the optometrist. This is amazing news, considering the facts - that 80% of premature babies have it to some extent, that it is mainly caused by large amounts of oxygen, and that Willow was having up to 90% oxygen at one point, and is still on a fair bit. The odds have been seriously against them the whole time, but these babies just seem to pull through each stage.

Next on today's agenda, the head scan. And another successful result! Although these scans don't mean a lot in terms of long-term brain development, it means at least that there is no indication of something definitely wrong at this point.

To top off today's excitement, they are now in a double cot; so the cuteness factor has hit a new high. It seems to have helped them out a bit as well; they've been quite happy all day, so seem to be enjoying each other's company.

The vibe of happiness was almost destroyed by a trip to Asda on the way home for some late Christmas shopping. Not sure what's been going on in Poole, but it seems that we've been in NICU for so long that people have started to evolve backwards. Nevertheless, our spirits were not dampened too much and we went home feeling optimistic once again.

Tuesday 21 December 2010

Tuesday 21st December

Today brought with it some good bathing, lots of feeding, and a few transport problems. As for the babies; well, they had another good day.

We were very concerned about how Willow was going to cope overnight. She'd been on nasal prongs since about 6pm, since the new machine that was being trialled had malfunctioned slightly. Because she was doing so well, the docs decided to leave her on the prongs and not put her back on CPAP. So it was with great relief again this morning that we heard that there were still no further bagging episodes.

My transport issues began early this morning with an attempted run to catch the company bus to work. As I turned the corner onto the main road, I saw the gleaming white vehicle in the distance, showing me its red lights as it pulled away. So another Yellow Bus carried me to work, and of course I had to sit behind the most annoying woman in the world, coughing the whole time without putting her hand over her mouth.

After work, I discovered that the trains to Poole had been reduced to one per hour - probably due to the snow which had cleared yesterday - so I sprinted to catch the 17:30. After 20 minutes, the announcer mentioned that the train I was on would be arriving in London Waterloo a couple of hours later - but the last I heard, Poole wasn't on the way to London. So, off I scarpered and realised that my train was actually on the mystical Platform 4, and had left 20 minutes ago. So, another bus for me then. This time, I was sat behind a woman wearing a hat with badges pinned all over it, which annoyed me more than it probably should have.

Anyway, I eventually arrived in Poole and found my wife and children where they usually are - in and around cots 1 and 2. Willow and Stanley had both been very well behaved again today. Willow was still on her prongs, having managed over 24 hours off CPAP, and had expertly gulped down another full bottle. Stanley was also nice and stable, and he too had managed another bottle. They'd also had some quality bathtime with their mother.

They were both having some lovely episodes of being wide awake and alert, and having a look around. It's so heartwarming to experience these moments of joy among the rest of the storminess of life in the special care unit. While we are still very aware that our babies are by no means out of the woods just yet, our feelings of hopefulness are starting to increase with each day that passes.

Monday 20th December

We were welcomed this morning by some proper snow outside; which might look nice, but is more of a hindrance than anything else. At least our babies are safe inside the warmth of NICU; their lungs probably woudn't appreciate the icy cold weather in their condition.

Another good start to the day today; there were no reports of any upsets overnight, and Willow was coping well on the new machine.

They've both been weighed again - Willow is now 5lbs 4oz, and Stanley is 5lbs 14oz. So they're almost normal weights for nearly-full term twins. All that milk has done them a lot of good. The nurses are extremely impressed with how Leela has managed to keep expressing for three months, under such severe emotional strain, and produce enough to feed both of them. It's by far the best thing they can have, and is probably a big factor in how well they are doing right now. Despite the traumatic start they've had in life, at least we are now able to do everything we can from this point on, to ensure nothing else is compromised - and this is a very good start down that road.

Other uplifting news came in the form of Stanley having his first successful bottle feed. He gulped down a full 60ml - albeit sometimes forgetting that he also has to breathe while he's sucking and swallowing. With Willow also managing another bottle, this is great news in terms of their development. Our main worry now is when they're going to reach all their normal milestones, so this is one of the first major boxes ticked; another positive step in the right direction.

Monday 20 December 2010

Sunday 19th December

Not a bad Sunday really. It started well, with another pleasing overnight report. Only Stanley was playing up slightly, with his saturation fluctuation. Willow was pretty stable all the way through.

There was a major breakthrough today in the cot by the window. We decided to give Willow a go with feeding breast milk from the bottle. It's been a bit of a struggle trying directly from source, with both babies dropping their sats, stopping breathing and changing a navy blue colour during every attempt. Ideally, of course, Leela would be happily wandering around with a baby on each breast, feeding merrily away. But ideally, the babies wouldn't have been born at 26 weeks, without any ante-natal steroids, and been ventilated for two months. If we go down the purely breast-feeding route, it will be at least March by the time we're out of NICU, and that's not going to be good for anyone. They'll still be getting breast milk, just out of a bottle instead. By the time we get out of here they'll probably be on solids anyway.

So, Willow gulped down 40 ml in about two minutes on attempt number one. It was another one of those rare, precious moments where Leela really felt like a mother; being able to feed her like that while she was gazing up at her, followed by her first burping session. She hasn't quite got the Senior burp nailed just yet; but there's definitely a few people around who could give her some pointers, especially at this time of year.

I tried feeding Stanley with a bottle a bit later on, but he wasn't having any of it. He was concentrating too much on his Sunday afternoon snooze, so we'll try that again tomorrow.

Another big moment for Willow today was that she was the first baby in Poole to try a different type of ventilation. Rather than CPAP, which she was on when resting her lungs while not on the nasal prongs, she will now be using high-flow nasal cannula. This is used in other hospitals around the country and they are trialling it here. It does the same job as CPAP - maintaining a continuous positive airflow to the lungs - but without the nasty mask squashing her face. Hopefully she'll get on with this a bit better.

So, we're into the last week before Christmas, and we've never felt so un-Christmassy before. Every day will still be the same as the last, no matter what else is going on outside. But at least the days are slowly becoming easier, and the light at the end of the tunnel is growing brighter.

Saturday 18 December 2010

Saturday 18th December

Today was very long and very tiring. It started off well; the morning report did not contain news of any bagging, which was a welcome surprise.

The drive to NICU in the snow was a bit hairy, but even a massive two inches of the white stuff wouldn't stop us seeing Willow and Stanley. Driving past the park gave us a glimpse of our happy future, where we'll all go out sledging and throw snowballs at Mummy; but we still have a long way to go before any of that can happen.

The children were both well behaved today, but we were having a frustratingly worrying time with Stanley's new monitor. It was going off constantly, his oxygen saturation levels swinging all over the place. We had a chat to the doc, who put our minds at rest with some straight talking, as usual. Stanley's lungs are still in pretty bad shape due to his chronic lung disease and all he's been through, so they're still not working properly. These fluctuations are nothing too much to worry about though, it just means that we have to sit through the most annoyingly loud beeping noise for a few hours a day. We should be used to annoyingly loud beeping noises after 85 days of them, but this one even more annoying, a bit louder and definitely beepier.

After a treacherous journey home (the majority of that treacherousness coming from our visit to Asda, not the increasingly icy roads), we'll do it all again tomorrow.

Friday 17 December 2010

Thursday 16th and Friday 17th December

The week has ended in a more positively-facing direction than in which it started.

Stanley's blood cultures came back from the lab nicely negative, so his anti-biotics have been stopped. His eye-gunk sample did contain some kind of bug, but the eye-drops took care of that anyway. He was still not 100% Stanley today, but very nearly there - he even managed his best breast-feed to date.

Willow had yet another blood transfusion on Thursday, her seventh so far. It should be her last, as her bone marrow is just about starting to create new blood now. She needed this one though, to boost her red blood cell count to improve her whole lung-breathing-living problems that she has. It seems to be doing the trick - by today she was more stable, with no major incidents. She'd been on CPAP constantly for a couple of days til this morning, to help give her lungs a bit of a rest after a rocky start to the week. She did have a good period of five hours on the prongs today, so let's hope she's starting to turn that corner.

I've got four days off work at the moment, which means I can concentrate purely on the family, and not have to worry about trivial matters which might be going on in the outside world. That's a lot more hours to spend in hospital, watching our babies growing all the time. Talking of growing, they are now out of 'Micro' sized nappies, and into the smallest 'New Baby' size. I'm sure neither of them will have any problems filling those up though.

The babies are twelve weeks old today, which means they are sixteen days away from receiving their '100 Day Cake' from the NICU nurses. We were hoping they'd never get that cake, and would have been home with us by Day 100 - but on the bright side, at least we won't have to worry about dinner that day.

Wednesday 15 December 2010

Wednesday 15th December

Well, that day wasn't quite as bad. It didn't start too well though.

The morning call revealed a total of four episodes serious enough to require resuscitation with the bag. Good to see Willow and Stanley sharing things already though, with two each. Stanley was started on anti-biotics as a precaution - his bloods didn't show any signs of infection yet, but it's generally too late whenever these results actually come back with anything; so it's better to kill any bugs before they take hold.

By the time I got to NICU after work, Leela was holding Stanley and he was looking much better. His eyes had cleared up quite a bit and he was whinging and moaning, which meant he was getting back to his old self. Willow was still on CPAP and she'll stay on that all night, as she needs a bit of a rest.

So, some sleep would be nice now, and to not hear about any more dramas in tomorrow's breakfast report, please, children.

Tuesday 14th December

Today officially turned out to be pretty rubbish.

I called NICU this morning as usual. I can always tell how well the kids have behaved by the enthusiasm of the nurse on the other end. I could tell today's report was going to contain the word 'bag' at least once, and indeed it did. My heart sinks every time they tell me about Willow's latest episode. I think what makes it worse now is that we are always comparing her to Stanley, who is doing so much better. A few weeks ago, he was doing pretty much the same thing as Willow, but we didn't think as much of it because Willow was still fighting for her life on the ventilator.

When I got into NICU after a day of painting ceilings (bathroom ones that is, not Michelangelo-style Italian frescoes) and working in the office, I had a feeling something was going to go wrong. Stanley didn't seem quite right, and Leela said he hadn't been crying before his feeds, which he'd been doing like clockwork the last few days. The doc had a look at him; and squeezed a load of yellow sticky stuff out of his eyes. He gave Stanley a quick MOT and everything else seemed ok, until he then decided to stop breathing and needed resuscitating with 'the bag'.

He's obviously got some kind of eye infection, so the doc stuck a needle in his arm to take some bloods to test, to rule out anything more sinister. While all this was going on, his sister then thought she'd test out her monitors by doing what Stanley had just done. So, a couple of extra nurses were called over and bagged Willow too.

Although, on the whole, they are so much better than they were five weeks ago, it really hit us hard today. We should be used to seeing all this happening to our children, but it seems worse now in a way. This is because they are no longer just very small, helpless creatures; but they are now our son and daughter, who we've really grown to know and love in these past few weeks.

We needed some junk food on the way home, so we went for the only thing that would cut it today. And KFC did the trick, supplying us with its finest ever offering of a Zinger Tower meal and a portion of Hot Wings. Comfort eating at its best.

Tuesday 14 December 2010

Monday 13th December

After yesterday's day of ups and downs, the midnight report brought with it another down. Willow needing bagging again at about 10 o'clock, so they put her back on CPAP a couple of hours early. That was the third such incident she'd had in 24 hours, and it's just getting us down a bit at the moment.

This morning, the reports were slightly better - there had at least been no further bagging overnight. But another potential problem had cropped up, in that Willow is sometimes now having very low blood sugar levels. This could be a number of things - but most probably an ongoing effect from the steroids. Hopefully nothing more sinister than that anyway.

Throughout the day, things were getting better, and we left NICU feeling more positive than when we arrived. Stanley is now at a level where, if he were on his own, he'd have graduated to the nursery. However, as long as there are no more needy babies arriving, they'll keep Willow and Stanley together, which is nice. They might even get the double cot if they're lucky.

Sunday 12 December 2010

Sunday 12th December

A mixed bag of a day today. Stanley was being rather good, now off CPAP for 4 days, and not even on nasal prongs for the majority of the time. He also had a very good go at breastfeeding, and is looking more and more alert when he's awake.

In the cot next door, Willow was not being as good. She had another bagging incident this morning, which is becoming more difficult to watch every time it happens. I had to turn away this time, just worrying that one day she just won't come out of it. The docs aren't totally sure why she keeps doing it, but think it's probably just because she's so tired. So she'll be back on CPAP for 6 hours twice a day again, to give her lungs a bit of a rest.

We're starting to think about what our Christmas Day and New Year celebrations are going to be like this year, in the confines of the Neo-natal Intensive Care Unit. It certainly won't be a festive period we're going to forget anyway, and will ensure that every year from now, we'll appreciate just being at home with our little family. But, at least we know that the BP garage is open continuously, so getting hold of coffee or a £3.29 Meal Deal is certainly not going to be a problem.

Saturday 11 December 2010

Saturday 11th December

This week we've learnt a lot about bowel movements, and what effect they can have on small babies. Stanley is building up quite a reputation with the nursing staff for being rather good at this type of gut activity. I won't go into it in too much detail, but he does seem to forget about the rest of his vital organs, particularly his lungs, when he's concentrating on filling his nappy.

Today, both of our beautiful little babies were behaving very nicely. There's been no sign of a bag to rescue Willow for a few days now, and  her reliance on additional oxygen is dwindling very slowly in the right direction. She's now on nasal prongs for 7 hours twice a day, and coping well. Stanley has been on just his prongs for 3 days running now, and most of the time they are pretty much redundant with no oxygen coming out of them.

So, we certainly haven't made it home with the children before the X Factor final, which was one of our original (optimistic) target dates. I'm quite glad about that in a way; it's not something I'd want to expose them to at such an early age. They've endured so much already in NICU, I think watching a few minutes of that might just tip them over the edge.

Friday 10th December

Eleven weeks old today  - three weeks until the official due date. We're definitely approaching the right end of this experience now.

Another positive day in NICU today. Stanley was weighed again, and is now 5lb 4oz; he's really piling on the ounces now. Both the kids had some really alert periods, which is so nice to see. But it does make it even more difficult to leave them when they're like that.

With Stanley being on pretty much no oxygen, and Willow still lagging quite a way behind, it looks like Stanley will end up going home before his sister. Not quite sure how we're going to deal with that, especially as the boy won't be allowed back in NICU after being exposed to the outside world. But we'll just wait and see what happens; Willow could suddenly 'turn the corner' and drop her O2 and CPAP requirements. She's shown us already that she has her mother's fighty stubbornness - we just need one more push.

Friday 10 December 2010

Thursday 9th December

It was a good day today in the hospital. Willow had her first bath, which was a shared experience with her brother. It was slightly stressful - more for us than the babies - due to the fact that it was the first time both of them had been off their monitors completely. They both seemed to enjoy it though, and Willow was particularly alert for quite a while. Now that she is not using up all of her energy on breathing, she's starting to wake up a bit more.

Also, we had another first - we saw Stanley with no tubes in his face. He's breathing completely natural air for a lot of the time, just like a proper normal baby. We're feeling like we're getting closer to the nursery section now; hopefully we should at least be in there for Christmas dinner. It's not quite as noisy in that room, wth less babies - so should be slightly more pleasant.

Our bathroom is coming along nicely. The avocado suite is where it belongs - in the driveway behind the gate, under a pile of rubble. We are being very well looked after at the senior Senior household, where there are far too many Swiss biscuits to even contemplate starting a healthy eating regime until after Christmas.

Wednesday 8 December 2010

Wednesday 8th December

Had a bit of an upside-down day today. We went in to see the babies before going to work for a change, after some stress-inducing bathroom design investigations.
We arrived at NICU to the news that the children had been well behaved overnight. Also, earlier this morning they had their eyes checked again for ROP. This procedure had in store for us good news and bad news. The good news is that Stanley is still in the clear, and Willow's grade 1 ROP has actually diminished slightly.

The bad news is that the eye-drops that are used to dilate the pupils can sometimes cause apnoea. Willow showed us that this is something that affects her more than we'd like. Just after I got her out of her cot, her heart rate and sats dropped to nearly nothing, she stopped breathing and I could see her face turning blue. So 'the bag' was used to get her breathing once more. We really don't want to see that happening again; it's becoming very tiresome.

More positive news comes in the shape of Willow now being on 3 hourly feeds like her brother. They've also both been weighed again - Willow is 4lbs 3oz and Stanley 4lbs 10oz. Keep up the good work, little fellas.

Tuesday 7 December 2010

Tuesday 7th December

Woke up in our temporary holiday home (at Willow and Stanley's Nanna and Grandad's house). We're staying here while our bathroom is being kitted out with a replacement for our much-loved avocado suite. (Thank you, Mr and Mrs S - next time we'll bring the grandchildren).

Didn't really want to be at work today - we have too much to do and two babies to see. But someone's got to, I suppose. I called NICU from the office for the morning status report, over a stale muffin and a cuppa. Probably didn't need the muffin after shoving a big bowl of Coco Pops down my neck before I left - but desperate times call for desperate measures. Anyway, there was good news all round. Both the kids had been sensible overnight, and had remembered to breathe the whole time.

Eventually I decided I'd had enough at work so made my way to Poole to see the family. Stanley's doing really well today - he's now on his nasal prongs for 13 hours a day, and for 3 of those hours today he was on no oxygen at all. Willow's coping well with 5 hours on prongs twice a day; her oxygen requirements coming down slowly. However, it looks like she will certainly be coming home on oxygen; so we'll have to get our house converted into an O2 machine and we won't get away from those bleeping monitors for a while yet. But we don't care, as long as those babies are home with us.

Monday 6th December

We're tired and fed up with it all today. 73 days of going to the hospital, 73 times of having to say goodnight to our children and going home without them. It's getting more difficult leaving them each day, now that they are growing bigger and showing their own little personalities.

Roll on 2011..

Sunday 5 December 2010

Saturday 4th December & Sunday 5th December

It's now over ten weeks that NICU has been our second home - we've probably travelled to Poole hospital and back about 100 times. Can't imagine what it will be like to not have to go there every day, but hopefully we'll find out soon.

Had a good day on Saturday, generally. Willow had another routine head scan, which revealed that the stuff that they saw last time had diminished slightly. I say 'stuff' because the docs don't even really know what it is, if indeed it's anything. A baby can have what seem to be major bleeds in their brain but still be completely unaffected in their development. Or they can have a normal brain scan and still have serious issues. So these scans don't really tell us much. But the good thing is there are no 'swiss cheese' areas, which would certainly indicate a problem.

There was a momentous moment happening around the Stanley Senior cot this afternoon. His first bath! He's now been on a normal mattress (ie not heated) for a few days, so has proved he's able to regulate his body temperature enough to be dipped into some water for a good wash. He appeared to love it, much to our surprise. He kept his sats up and was wide awake during the whole ordeal, even during the behind-the-ear washing. So his hair is now clean for the first time, and I reckon there's definitely some Daddy-style mousy blond in there, much to Mummy's disagreement.

The weekend was going really well until it took a small downward step on Sunday lunchtime. We came back from our field trip to B&Q and tile shops, where we did some important research on our impending bathroom re-fit, to the news that Willow had had another bagging incident while we were out. She'd done so well since Friday night - so we were gutted, again. It was nothing major but does put a downer on things.

After that though, they were both doing really well for the rest of the day. The trend is definitely still moving upward in the baby-health department, which is the most important thing right now.

Saturday 4 December 2010

Friday 3rd December

Today's morning call reported that Willow had another incident in the early hours of this morning. She needed resuscitating again with the dreaded 'bag'. There doesn't seem to be any real explanation for her doing this other than her still being premature. Of course, we are used to a lot worse than one incident per night - just a few weeks ago she was needing that treatment as much as hourly. That doesn't make it any easier now though - if anything it's worse, as it seems to be the main thing which is holding her back.
While I was at work I got a call from the kids via Leela, and she told me that not only had Willow had another bagging incident, but Stanley had one as well! After a few days of moving forward, something always happens that punches you in the head to remind you what is actually happening to your family.

I learnt something new today on the way to the hospital. Bournemouth station apparently has a 'Platform 4', which I'd never noticed before - probably because it's about six miles towards the Westcountry. There wasn't much point in even getting on the train, because by the time I reached this mythical 4th platform, I'd already walked to Poole.

Anyway, when I finally got to the hospital, the babies were nice and stable, and looking more adorable than ever. Also, they got weighed again and have put on a good amount of chubbiness - Willow is now 3lbs 15oz, and Stanley is 4lbs 7oz. So, our son and daughter definitely helped me get over my railway concerns. And the delicious Godfather kebab on the way home definitely helped us get over our hunger concerns.

Thursday 2 December 2010

Wednesday 1st to Thursday 2nd December

Been a bit busy again the last couple of days. Work tends to get in the way every now and then, and I can't really use snow as an excuse as I can work from home.

The children have mostly been well behaved this week. Willow does tend to have a profound 'moment' once a day, where her heart rate drops, her oxygen saturation levels go right down, and she needs 'bagging'. Athough we're used to it now, it's still horrible to watch and we wonder when it'll stop happening. On the whole though, she is looking more like a little chunky baby every day, and generally improving.

They both had their eyes checked for ROP again yesterday. Stanley is still completely clear, but Willow has grade 1 retinopathy. This isn't surprising, as the vast majority of premature babies have it to some degree, and Willow in particular has been on stupid amounts of oxygen, which increases the chances. We're not too worried just yet, as it doesn't always develop further and they're being checked every week.

The boy Stanley is still a few steps ahead of Willow; he's now on 3 hourly feeds and seems to be tolerating them. And today when he was off CPAP, he was on zero oxygen - so basically just breathing air with no help at all. It's only taken ten weeks to get there, but we're getting there!

The original expected release date of New Years Day is looking less and less likely, but we're hoping it will be some time in January.

We used to wonder when the babies would come home compared to other world events. Back in August we were hoping that the babies would stay in the womb for longer than the Chilean miners were trapped underground. That didn't  happen.

Then, we wondered if the home date would be before the X Factor finale, or The Apprentice 'You're Hired'. That's not going to happen either.

Surely though, we are not going to have to wait until England get to host the World Cup...

Tuesday 30 November 2010

Monday 29th to Tuesday 30th November

A very busy couple of days.

For me: work, hospital, eat, sleep. For Leela: express, hospital, express, hospital, express, eat, express, sleep (briefly).

It's all pretty exhausting; it'll just ne nice when we can do the above, without the 'hospital' bit in the middle.

That bit though, has been almost enjoyable for the last couple of days. Willow and Stanley are both growing bigger and stronger; the boy still slightly ahead with his breathing function but his big (little) sister right behind him.

I wasn't there for the doctor's round this morning, but it sounds like it was a good one. They started with Willow as usual, as she is in bed #1. The doc had a look at her and said, 'So, here's Willow and she looks...... well, she looks amazing really.' He had a tear in his eye as he looked at Leela with tears in her eyes. All the staff here are so good, they really care about these little babies and they want, as much as anyone, to see them do well. We'll never complain about the NHS again, that's for sure. Apparently it costs £1000 per day to keep one baby in intensive care - so that's our taxes well spent anyway.

Another milestone was reached today - Stanley managed to drink some milk straight from the source. Leela's been trying for a few days with both of them and today he really went for it. It won't be long til Willow's doing the same - she was trying to find some milk in my chest this evening. I think she'll have some trouble finding any in there.

We decided to not go to a take-away or restaurant for dinner tonight, opting to see what we had in the fridge instead. Well, that was a mistake. All that was left was a tub of spinach and ricotta sauce, and a packet of tortellini. Trouble is, it was spinach and ricotta flavoured tortellini. It was alright if you like warm, spinach and ricotta flavoured lumpy milkshake.

So..... where shall we go for dinner tomorrow night then?

Sunday 28 November 2010

Sunday 28th November

Another long day today. I started painting the new skirting board at 6am while Leela was doing her usual early morning express. We're having a new carpet fitted in the lounge tomorrow, which should hopefully help contain the icy blasts which currently shoot up through the floorboards. Don't think Willow and Stanley would appreciate those drafts when they come home, so we'd better make it nice and snug.

Talked to the doc this morning during the daily round. He actually said the words 'Not much sign of any respiratory distress' while listening to Willow's chest. This is incredible, considering that this time three weeks ago, we had a conversation with the doc about how 'crummy' her lungs were, as he showed us an x ray showing that they were completely cloudy and one was collapsed. Back then, we seriously thought that she might not even survive. Now, she's very nearly on a par with her little (big) brother. Just shows how quickly things can change in this place.

It shows how much progress we've made that the doctors no longer have grave conversations with us every morning, where they used to list the babies' current problems, what the risks are, what the worst case scenario was etc etc. The 'current problems' list on their daily sheet is now shorter than the 'resolved problems' list. It now only contains a few items like: Pre-term, chronic lung disease, respiratory distress syndrome, PDA, ventricular hypertrophy, conjugated hyperbilirubinemia, edematous, cysts in the brain ventricles, all that kind of standard stuff.

We're really appreciating every minute we're spending with the babies now. It could've been so much worse. I was reading on the news the other day about two 27 week old twins who both died while in hospital a couple of weeks after being born - I can only imagine what their parents are going through. It just shows, whatever crap we think we're going through at the moment, there's always someone a lot worse off.

Saturday 27 November 2010

Saturday 27th November

I was quite happy to see some snow last night. It means winter has definitely arrived, which means that we're getting closer to our babies coming home.

Our house needs to be made warmer in preparation for that event, so I stayed at home doing some DIY with Grandad while Leela went in to NICU for the early shift. In the afternoon we both went back in to spend some quality time with the kids.

Willow and Stanley were both very well behaved today. Willow's really starting to fill out now, and she's becoming more alert. Her eyes are so big and beautiful, it melts our hearts every time she looks at us. Stanley's filling out his nappies like a professional; sometimes filling his cot as well, and occasionally even giving the floor-cleaners a bit of extra work to do.

Friday 26th November

Willow and Stanley Senior are nine weeks old today, so they're 35 weeks into the full 40. We're still optimistically aiming for the original due date, New Year's Day, for the homecoming; but it will most likely be after that. It will certainly be an NHS turkey sandwich for our Christmas dinner, washed down with a frappe-mocha-mericano-cino from the BP garage.

The kids have both been weighed this week, this time without any additional swelling in either of them. Willow is now a quite substantial 3lbs 5oz and Stanley is a rather humongous 4lbs 2oz.

They're both looking perfect in every way, and we enjoyed holding them again today - despite a number of 'special' moments that Willow was having. We were expecting a lot worse though this week - she has done amazingly well since stopping the dexamethasone.

The days are still slowly ticking by, in a very gradual upward direction. The dips and backward steps are becoming smaller, but we're still very aware that any infection or other ailment could put either of them in trouble again.

We're now just looking forward to tomorrow for another family weekend in our Poole holiday home.

Thursday 25 November 2010

Thursday 25th November

NICU was almost pleasant today. The head-scan lady came and did the scans, and couldn't see what the doc was seeing last week in Willow's head - the dodgy 'areas of high density'. All she saw was some bi-lateral flaring. Apparently, bi-lateral flaring in the brain is a hell of a lot better than seeing proper bleeds or areas looking like Swiss cheese. So our growing fears were pretty much unfounded - there is nothing definite to worry about in the white or grey matter department just yet.

The doc was saying how well both the kids were doing, particularly Willow, considering all the crap that their little bodies have had to endure. I put this down  to the amazing job Leela did of taking care of them for the six months they were in her womb. Absolutely nothing was done to compromise their situation in any way - and it's definitely paid off. (Plus also, I'm sure the genes on both sides might have helped a little bit.)

Stanley was looking even more like a proper baby again today, and Willow is starting to fill out as well. For the first time, it feels like we have a little boy and a little girl, rather than two poor babies in plastic boxes. They're definitely showing their personalities now, and we're starting to imagine our lives together as a family.

We started this next phase of life with a curry on the way home at the Gate of India. Bloody nice, actually.

Wednesday 24 November 2010

Wednesday 24th November

Happy Birthday, children. Two months old today! Looking back at those 61 days, it's more like one very long day rolled into a blurry mess.

One of today's expected tests didn't happen; the head-scan won't be til tomorrow. So, another sleepless night tonight, worrying about what news that will bring. No news would be good. Just to know either way would be nice.

The other test, for ROP, was done first thing in the morning. And a good result! All four of our babies' eyes are still clear; no sign at all of this disease. One less thing to worry about - well, until the next check in a week's time.

Today was another one of those up-and-down days. Or more down-and-up, actually.

We were both feeling really negative about everything today. Not one thing in particular, just the accumulation of all the worries in our heads, especially those long-term questions which don't have any answers yet. Will our babies ever actually come home? Will they have brain damage? Will their eyesight be affected by all the oxygen they've been given? Are they going to be able to hear anything? Will Stanley's heart condition actually amount to anything? Will his PDA come back and need surgery? Will they have to go home on oxygen? Are they going to get any more infections? How long will it take for their lungs to fully recover?

After some therapeutic eye-leaking and a good chat on the way back to the hospital in the afternoon, things started looking up.

Willow and Stanley both came off their CPAP again and we had one each to cuddle for a few hours. This was the first time we'd really seen Willow being alert - her eyes were wide open. Seeing her like that really gives us hope that she's going to be alright. I had the same overwhelming feelings that I'd had a couple of weeks ago with Stanley - like I imagine the first time a normal parent would see their baby.

I'm really believing now that they're both going to come home. This year would be nice, please.

Tuesday 23 November 2010

Tuesday 23rd November

Another long day at work today, and straight to St Mary's to meet up with Leela and our little bundles of joy.

Today, they were quite well behaved children again; only a few little 'moments' and they're coping well off the CPAP. And still, no sign of Willow getting any worse.

Tomorrow is quite a big day. They're having their eyes checked again for what's called ROP (Retinopathy of Prematurity), which is basically 'disorganized growth of retinal blood vessels which may result in scarring and retinal detachment'. It's what Stevie Wonder had, to make him blind. (Thanks, Google - as usual, you make me more paranoid. Must stop Googling.) They've already had two checks for ROP though, and were both clear. So chances are, they will be okay. In the vast majority of cases it's mild anyway, and even if it's more severe, it can be fixed with a bit of laser surgery.

Also, tomorrow they're having head scans. This is another normal occurrence, but we're a bit more worried this time because Willow had some 'areas of high density' in the white matter of her brain last week. These may just be absolutely nothing, an imperfection with the ultra-sound image, or it could mean there is some bleeding. Naturally, us as parents are drawn towards the latter as our conclusion - but hopefully it's just nothing.

What is surprising to me, is that I haven't turned to the demon drink during this trying time. It could so easily be a way out; but in fact, I drink hardly anything now. You need a clear head in order to take it all in, to be able to talk things through with each other, and to be there for the babies.

And besides, spending a day in NICU with a raging hangover would be even worse than spending it in Dunelm Mill on a Sunday looking at curtains.

Monday 22nd November

After a long day at work, I survived another bus journey to go and see the wife and kids in our 2nd home. When I got there, Leela was holding both of our little babies, which brought a certain amount of warmth to my insides and a big smile to my face.

Willow is already showing Stanley who is the boss, sticking her fingers in his face while he just chills out, ignoring her. I'm sure this trend will continue for the foreseeable future.

Another milestone was reached today - Willow is now in a cot, just like her brother. She's now big enough to be able to maintain her body temperature a bit better.

On the whole, they are both getting more stable, but it is still not relaxing in NICU. They will both have episodes where their heart rate drops, they stop breathing and their oxygen saturation goes down. Although we get used to it, we're quite looking forward to not having to poke our children to remind them that they need to breathe, worrying each time that they just won't start again.

The midnight status call was better than I thought it would be. They both had good blood gases, and Willow's lung situation still doesn't appear to be affected by her stopping the steroids. Hopefully her little lungs are now strong enough to just grow on their own. 

Sunday 21 November 2010

Sunday 21st November

Not a lot to report today. It was a nice Sunday - well, as nice as it gets in NICU. Both babies doing well, with Stanley looking slightly less puffy. Both of them off their CPAP for six hours in total.

Willow had her last dose of dexamethasone (steroids) - so we should see within the next couple of days whether she will start going downhill, without that extra help. She's certainly put herself in a good position though - and we have every faith in her.

We're just waiting for that ascent on the roller-coaster which doesn't have a descent following it. Hopefully we're getting closer.

Saturday 20 November 2010

Saturday 20th November

It was a long day in NICU today, and we're both completely exhausted. The general theme, though, was one of positivity, including my first double trouble cuddle - probably the proudest moment of life so far.

Both Willow and Stanley were still being nicely stable most of the time, although the boy is still a bit on the chubby side. He's now started on diuretics to get rid of the excess fluids. Towards the end of the day, Willow's oxygen saturations started to waiver so her requirements were increasing. This may be the beginning of the steroid-weaning having an effect - which we were expecting anyway. We just can't cope with her going backwards too much.

Today, we had what was supposed to be a break in the town centre. I don't think that's even possible in Poole though - particularly in the Dolphin Centre, at the start of the Christmas shopping season. Isn't this what the internet was invented for - to not have to go to shops anymore? We only wanted to go somewhere for a quiet sandwich. So, for tomorrow's lunch then, it looks like it's back to the BP garage for an incorrect coffee and a Kit Kat Chunky.

Friday 19 November 2010

Friday 19th November

Another week gone. Eight down, six to go (best case scenario).

Another few nappies gone, too. Stanley was up to his old tricks, playing up for Mummy and Daddy with his assortment of bowel antics. Just as I'd finished changing him and giving him a nice new nappy, I heard a noise that could only mean one thing - the Colman's Mustard factory had reopened its doors again, straight into a Pampers Micro. So he got another fresh one, and guess what happened? Nappy number three in as many minutes. I gave that one to Mummy to fix - I was worn out after all that.

We had a relatively nice time again in NICU today. Willow was being especially stable, and looking a lot less stressed than she had been - enjoying a good cuddle with Mummy. At the moment, we're just worrying what she will be like when she's finished her course of steroids at the weekend. The docs expect her to go back a few steps, but are very happy with how she's coped so far off the ventilator.

Stanley was looking slightly too chubby today. He's got a bit swollen all over, but still looks like a very cute baby. He's been on antibiotics and had his milk cut back by a few ml an hour, and seems to be improving.

So it's about time to watch some more Children in Need; this time on the telly, rather than our own. But actually, there's only so much of Susan Boyle and Pudsey we can watch - so we'll just donate some money and stick Jack Bauer on instead.

Thursday 18 November 2010

Thursday 18th November

Well, that was a better day. We're both a lot happier right now, and not only because we've just tried out the newly opened Chicken and Pizza Delite, replacing the old favourite, Chicken Delite, which hadn't changed since 1991. I'm pleased to say that the chicken still gives as much delight as it always has done.

But anyway, back to the babies.....

They were both a lot more settled today - Willow was a much less angry little girl, and Stanley wasn't having as many episodes. We had some quality family time, and all four of us were more relaxed than we have been in the last 55 days.

While I'm looking forward to our next visit to Chicken and Pizza Delite, perhaps to try out their half-price lunchtime specials, I'm a lot more excited about visiting the babies again tomorrow.

Wednesday 17 November 2010

Wednesday 17th November

That famous NICU roller-coaster had us crashing downwards again today, without anything really bad actually happening.

Yesterday was obviously a major high point of the journey so far. We'd reached such a big milestone, that we must have just relaxed a little too much subconsciously. The nervous emotion and adrenaline had been keeping us going for so long; then suddenly it kind of stopped, and it just dawned on us again where we are and what is actually happening.

It hasn't helped that Stanley was starting to have more bradycardias (stopping breathing, heart rate dropping etc) yesterday, so much so that he's gone back onto his CPAP machine overnight. He's probably just tired after five days off, or it could be a sign of a slight infection. He's been started on anti-biotics anyway, just in case. Oh, and he's got a few hernias as well, which will probably need an operation.

Our babies have come so far, but there is still such a long way to go. We both just feel completely drained again; which is a feeling we're getting used to, but it seems to be worse than ever right now. We don't really have a choice though, so just need to keep strong like Willow and Stanley are demonstrating so nicely.

Tuesday 16 November 2010

Tuesday 16th November

These good days just keep coming now. Makes me a bit nervous.

Went to work all day today - well, until about 4pm anyway. I opted for the train to Poole this time; because my thinking is, surely there are less germs to catch on the train than on the M2 bus from Boscombe. Plus, it was a mere 8 minutes late - there was only a spattering of leaves on the line by Winchester. Although, who knows what will happen to the delays when the sleet starts floating down in February. Hopefully we won't still have a second home in Poole by then, though.

Anyway, when I arrived at NICU, I could hardly believe my eyes. My wife was sitting in the comfy chair with not one, but two babies engaged in full cuddle mode. This was the moment when it really sunk in - that I actually had a whole family here. It was really happening.

Soon after I got there, I held Willow for a first proper cuddle. So, we parents were sitting next to each other, with one baby each. This is what Leela and I had been thinking about since April - albeit maybe in our own lounge, rather than a hospital ward with bleeps and lights and incubators for company.

Willow was still quite angry today - probably due to coming off high doses of morphine and being given caffeine and steroids. She can't cry properly, because of the tube that was stuck down her throat for seven weeks; but her voice will come back soon.

Now that they're both doing so well, it would be easy to start getting complacent. But, now that we've got past this stage, the next worry starts seeping in - which is, what effect all this will have on them over the next few years. There is no real way of knowing, but they've been through so much, and been exposed to so many different drugs and treatments and problems. We just have to hope that they'll carry on getting through it, like they've done so bravely up to this point.

So today was quite a momentous day - the day that all four of us were really together as a family for the first time. Here's hoping for many more of those days to come.

Monday 15 November 2010

Monday 15th November

Wow - if only all morning status reports could be that good. Willow is doing really well, breathing normal air through her CPAP machine, just requiring a bit of extra pressure to keep her lungs open. Normal air is only 21% oxygen - so this is amazing considering this time last week, she was requiring anything up to 100%. She's been having really good blood gases - where they check the PH, carbon dioxide, oxygen levels etc - which means her heart and lungs are efficiently doing what they should be doing.

At this rate she'll be catching up with Stanley in no time, who is still getting along smoothly on his nasal prongs. He is having the odd episode, where he stops breathing for a couple of minutes and needs a bit of a push, but hopefully the blood transfusion he had last night should help that. These babies are still not quite capable of regenerating their own new blood just yet, so they need a bit of a boost occasionally.

This afternoon, while I was at work, Leela called me from the hospital. I knew it would only be very good news or very bad news.....

....... and it was very good news again! Amazing news, in fact. Willow was now breathing without the CPAP machine, needing just a bit of oxygen via nasal prongs. So it seems she has already almost caught up with her brother. She'll be back on the CPAP mask overnight, but this is unbelievable progress. Those steroids obviously did the trick.

More of the same to come, please, children!

Sunday 14 November 2010

Sunday 14th November

Well, what a difference seven days can make. This time last Sunday, all we could think about was worst case scenario. We just couldn't help but imagine that poor Willow was going to be stuck on that ventilator forever.

But, today has turned out to be a much better Sunday.

She's off the bloody ventilator!!!! Wahoooooooo!!!!!

She was improving all last night and today, coping really well as the docs weaned down the ventilation. I wasn't in NICU again for most of today due to my stupid bout of man flu, but according to Leela, the atmosphere in there was vibrant - everyone excited that Willow was doing so well and was finally going to be extubated.

So she's now on CPAP - which gives her a continuous flow of pressure with additional oxygen. She's actually bypassed another setting on the new machine, BiPAP, which would give her additional breaths if she needed it. So hopefully she won't need to fall back to that, but it's good to have that level of comfort.

My man flu gradually disappeared today so I managed to visit - just late enough to miss the big event; but at least I've seen the children again at last. It seems like an age, and I've definitely seen a difference in Stanley after only 3 days away. He's getting chubbier and cuter, and looks even more like a regular baby.

We're on a real high right now, but again, we are not going to get complacent. It's still a long road yet, but after today, we can almost picture that happy sunset on the horizon.

Saturday 13 November 2010

Saturday 13th November

The morning report from NICU was one which left us feeling very positive. Willow had been very stable again, and her pressure requirements on the ventilator had come down from 28 to about 17. This figure really needs to be under 20 in order for her to be extubated, so she's still on the right track. The steroids are obviously doing their job, helped along by her strong will.

Stanley had lasted more than 24 hours off CPAP - so with only his nasal prongs giving him a bit of oxygen. This is brilliant progress - and the docs are very happy with him; amazed at how alert he is when he's awake.

Again, I couldn't go and see them today. I've definitely got some kind of man-flu, and don't want to risk spreading it around the NICU. So, while I've been trying to finish off the nursery, Leela's been giving me frequent updates from the hospital. The general theme is still one of positive progress - Willow's oxygen requirements have come down again to the lower 40s, and her bowels have well and truly opened, for the first time since re-starting her feeds. It's good to know that's all working properly.

This evening we might have to dig into a few episodes of 24: Season 8. There's nothing like a bit of Jack Bauer to pass time quickly.


So, today is one of those 'up' days on the roller-coaster - let's hope that maybe, we won't have to go down again too many more times.

Friday 12 November 2010

Friday 12th November

Willow and Stanley are 7 weeks old today. So we're officially half way to the full 40 weeks, when we would be aiming to take the babies home. We're keeping all our limbs and digits crossed that that might actually happen.
I think I've still got a cold coming, so don't want to go to the hospital again. I might just be a bit run down, but it's not worth the risk. It's just torture not being able to see the kids.

Anyway, it turns out that the surfactant didn't work; Willow is no better this morning than she was yesterday. It was a long shot anyway, but worth a try before going for the second course of steroids. So, she was started on the dexamethasone this morning .... and the initial result is that her oxygen requirement has gone down from 70ish% to 50ish%. So that's a good sign - it really needs to be under 50% before she gets extubated and taken off the ventilator. It's not just her oxygen requirements that need to be reduced, but also the pressure required to keep her lungs open. It normally takes two or three days to get to this point after starting the steroids, so this weekend is going to be a long one.

In the bed next door, Stanley is still thriving at the moment. He was off CPAP for 18 hours yesterday, and today they want to see if he can last a whole 24 hours on the nasal prongs. This is amazing that he's doing so well; but we are still not getting complacent about it - he's not out of the woods just yet.

They were both weighed today too. Willow is now an incredible 3lbs 9oz, but this is mostly due to her holding a lot of extra weight where she's retaining fluids. Stanley, on the other hand, is still 3lbs 4oz, so he hasn't changed since the last weigh-in ... but, in his case, he was retaining fluids last time, and has since been on diuretics to clear it down. So, a very inconclusive mass-checking session that was. Nothing's ever easy, is it?

In other news - my parking ticket, that was issued approximately ten minutes after Stanley was born, has been retracted after I explained to Poole council that moving the car wasn't my priority at that point. I was hoping for more of a fight actually; we could do with the £25 for being Woman's Own's real-life story of the week.

Thursday 11 November 2010

Thursday 11th November

I've had a sore throat building since last night, and this morning feel like I'm getting a cold. This is horrible, as it means I can't go and see my babies today. I hope it doesn't develop, and just goes away.

Leela called from the hospital. Stanley was his usual self, but the docs think that Willow may now have a virus. If it is a virus, that might be good as at least we might know what's causing problems - but it means they can't start her on the treatment for her lungs. She really doesn't need a virus after all she's been through. We should find out pretty soon, when they test the 'snot sample'.

Meanwhile, trying to do some work while waiting for that result, and not being able to go to the hospital, is no good for me at all.

It's been a long day, but just got a call from Leela. Willow has not got a virus, wahoo! I am so bloody relieved. She's also been doing better this afternoon, and they are starting her on the surfactant.

(The science bit (thanks as usual, my friend wikipedia): Surfactant is surface-active lipoprotein complex (phospholipoprotein) formed by type II alveolar cells. Its main functions are 1) To increase pulmonary compliance. 2) To prevent atelectasis (collapse of the lung) at the end of expiration. 3)To facilitate recruitment of collapsed airways. Premature babies have a lack of this stuff in their lungs, as they shouldn't really be breathing until they're due to be out of the womb. Hence they generally have Infant Respiratory Distress Syndrome)

So, Willow is getting a couple of doses of this to see if it helps at all. If it doesn't, then she'll get a second course of steroids. The problem with steroids is that there is a risk of having an effect on brain development, so you have to weigh everything up. Right now, we just want our daughter to have a fighting chance at life. We know that she has the fight in her, she just needs that something extra to give her a chance.

The next couple of days are going to be crucial, as either the surfactant or the steroids will hopefully give her the boost she needs to take that tube out. So, as usual, it's a waiting game.

Wednesday 10 November 2010

Wednesday 10th November

Last night's midnight call to NICU revealed that Stanley had a bit of an episode. He decided to stop breathing for a few minutes and needed what is so joyfully known as 'bagging'. Not the best of thoughts to be going to bed with, but he had been on just nasal prongs for 14 hours, so he was probably just tired. We're used to seeing our kids stopping breathing and starting to turn blue, so we weren't all that worried.

The morning report was much better - they'd both had settled, stable nights, and Willow's oxygen requirements were still not rising much.

After a day's work in the office, for some reason I made the terrible decision of catching a bus to Poole. What a delightful experience that was. I had to wait 15 minutes for a bus that comes every 7 minutes, and then when I got on it, had the obligatory couple of loud alcoholics sitting behind me, breathing down my neck. I might just get the train next time. First class.

Anyway, today's hospital experience was generally positive again. Stanley was wearing a lovely stripey jumper, and spent a long time out of his cot. Willow's respiratory rate, which the ventilator supplies, had gone down from 65 to 50 breaths per minute. This means she is doing more of her own breaths, so she appears to be going in the right direction. If she keeps up the good work, the plan is to give her surfactant to try and help her lungs. We'll see how she gets on overnight and tomorrow.

Tuesday 9 November 2010

Tuesday 9th November

Struggled to get out of bed this morning, after having a couple of hours of half-sleep. At least I don't have to get up every three hours to express milk though, like my amazing wife (I don't think it would work if I tried it, anyway). The rest of the time is taken up with nightmares about what could happen. And then full consciousness arrives and the real nightmare starts again.

The morning report said Willow was still on 70-80% oxygen, and Stanley was still Stanleying about. So - a standard start to the day, and one we have come to expect.

After fitting in a few hours of working from home, we went to the hospital. Willow's oxygen requirement was starting to go down, which looked promising. But then, it was down yesterday, and soon shot back up. Stanley looked extremely cute with a big woollen cardigan and a proper baby-grow. He's looking just like a real baby now, only in miniature. Saying that; he is getting less miniature, at a whopping 3lbs 4oz.

Today in general was more of an 'up' day - Willow's oxygen requirements did stay down in the 60s, and she was looking more settled. She's also back on 1ml of milk an hour after having her feeds stopped due to multiple issues going on. So, all we need is for these positive vibes to keep floating about NICU, kill this infection and get those lungs working. She's still wriggling about like crazy despite being on a vast amount of morphine, so she's obviously got her mother's fighting spirit. With that, she should be just fine.

On the way home we popped in for a quick visit to see Nanna and Grandad, who had with them a great aunt and two great uncles, and who force-fed us lasagne, beer and too much dessert. And to think we just going to have Weetabix for dinner tonight.

Monday 8 November 2010

Monday 8th November

I can't believe it's already a week into November. We always said we wanted to make it at least to this month before giving birth. Well, here we are - 6 weeks and 3 days in.

Got up at 6.30 today and logged into work from home. Doing a bit of work is like having a break from the 24/7 emotional torture of having two babies in intensive care, so I don't mind really. The ups and downs faced by a major global investment bank pale in comparison to the trials and tribulations of the lives of our mostly helpless children, but I need to keep working now more than ever, for them.

Called NICU for the start of day status report - and it was reasonably positive. Stanley was busy having a look around and trying to climb out of the bottom of his incubator. Willow had a relatively good night and was settled, and her oxygen requirement was down to 56% at the time when I called. This sounded remarkably better than the 80-85% from last night, but we won't get too excited just yet.

We arrived at the hospital today to find Stanley's incubator had disappeared. He was now in a cot! I couldn't believe it; had to double check it was definitely our son in there. He was fast asleep for most of the time we were there, looking super-cosy on his heated water mattress, but he was quite alert for half an hour or so. We both spent that whole time just looking at him, and he was looking back at us with his big curious eyes, trying to take it all in. It was probably quite confusing for him having these two big people smiling and pointing at him like weirdos.

Willow was mostly comfortable, but her oxygen requirements had risen again. The antibiotics seem to be clearing the infection, and she'll be given another blood transfusion to increase her red blood cell count; this should all help her breathing. It's so hard watching her though - there really is nothing we can do to help, and at the moment she just needs to be left alone.

We had our usual short break, which consists of running to move the car so we don't get a ticket, followed by a trip to the BP garage for a coffee. No matter how clearly we ask for 'one americano and one cappuccino', they will always respond with - 'so, that was two lattes, right?'. One day we'll try asking, 'Seventeen machiatos, four frappe au laits and a bucket of chicken livers, please'. I guarantee they will reply with 'so, that was two lattes, right?'. Maybe we'll try that one tomorrow.

Sunday 7 November 2010

Sunday 7th November

Gone are the Sundays when all we had to worry about was how bad our hangovers were. And the only decisions we had to ponder were which take-away to have for dinner and how many hours of The Wire to watch.

The morning call to NICU revealed that Willow's oxygen requirements had gone up to 70-80% overnight. Being that normal air is 21%, and she was only needing 40% a couple of days ago, this was not sounding good.

We talked to the doc, who filled us in on the latest. Willow has another infection, which is probably contributing to her less than satisfactory breathing ability. The docs have worked out a long list of things that they're going to try in order to help her lungs. These include the usual suspects - antibiotics, different types of ventilation, steroids. Hopefully the infection will be clear by the middle of the week and she can start on her second course of steroids to strengthen her little lungs.

We felt better after talking to the doc, as usual. They tell us pretty crappy things but at least we know exactly what is going on. It's not a hopeless situation, he said; but there are many risks involved. All we can do is hope for the best.

There was a lot more hope in the incubator next door, where Stanley was being Stanley. He's now off his CPAP machine for 12 hours a day, so just on nasal prongs for that time. That means he's only getting extra oxygen to help him, but no pressure to keep his lungs open. Seeing how well he is doing compared to his sister illustrates just how different two babies who were given exactly the same start in life can be.

We just can't wait for Willow to get to this stage - so we can actually see what she looks like without all the tubes and other stuff all over her face, and to be able to hold her like any normal person can hold their baby. It's just difficult keeping positive, without your mind collapsing into disarray every time you stop and think about it for too long.

On the plus side, at least we don't have to go to Southampton every day. I won't complain the next time we have to go to Ikea, that's for sure. In fact, once the babies are home I don't think I'll complain about anything again. Well, actually, I won't hold myself to that.

Saturday 6 November 2010

Saturday 6th November

Well, they talk about this journey being a rollercoaster (without the fun), and that is the best way to describe the weekend so far. We knew Willow was coming back today, and waited for the phone call from Southampton. The phone call came at last, and we were very excited to be welcoming our daughter back to Poole.

As we arrived at the hospital we saw the ambulance outside, and couldn't wait to get up to NICU. There she was, in her old incubator, next to her brother where she belongs. The doc was still with her getting her sorted, so we talked to Stanley for a while. He was being his usual self; turning himself around, brewing something in his nappy, pulling his tubes out. We had him out for a cuddle, and he handled it really well.

I could look at his face forever - the wave of emotion I get when he looks at me is quite overwhelming. I never used to understand it when people would talk about how amazing it was when you see your baby for the first time - but it really is. There are no words to describe it. You immediately just love this little person more than anything in the world; it just doesn't usually take 5 or 6 weeks to even see their face. Up until the last week or so, I've never been brave enough to let go and really believe that our babies might actually get through this.

When the doc was free, he came and talked to us about Willow and her 'crummy' (in his words) situation. He showed us her latest x-ray, which happened to be her 26th x-ray in 42 days. It didn't look good - you could clearly see half of her right lung collapsed, and the rest of her lungs covered in a hazy mist. A good example of bad chronic lung disease, no less. Not only that, but a distended tummy - hopefully just full of air - pushing up against her diaphram and not helping the situation at all.

He talked us through what was going on. The operation had successfully fixed her heart, so that was working nicely. Trouble is, a heart is not much use when the lungs are in a bad state of repair. The longer she stays on the ventilator, the worse the lungs will get. So that was the plan for the next couple of weeks - to wean the ventilation so they can take that damn tube out.

With Willow's predicament now worse than it ever has been, it was time to go home and do the only thing one can do in this situation - ball your eyes out until you can't do it any longer. Which is what we did. Again.

Friday 5 November 2010

Friday 5th November

Went to work today, for a change. Was quite nice to think about something else for a few hours – however hard that may be. While I was in a meeting, the phone rang – it was Leela. I knew it would only be very good news or very bad news; and luckily, it was the former! Willow was booked in to come back ‘home’ to Poole tomorrow. I was quite shocked it was so soon; thought it would be another few days yet. So was pretty overjoyed by the prospect. The happy vibe kept me motivated to work for another few hours, but soon I was ready to see my daughter again.


We went to Southampton for what was hopefully the last time. Willow was looking so much better- the swelling had all but gone, and she was a lot more active.

Apparently, today was Bonfire Night, going by the six hours of constant noise outside. Looking forward to taking our kids to see some fireworks.

Thursday 4 November 2010

Thursday 4th November

Today I had some of the happiest moments of my life. Stanley was allowed out again today, and both Leela and I have well and truly fallen in love with him. He was so awake and lively and looking up at us with his big, beautiful eyes.


As I’ve been writing this page, sitting watching him, he’s turned his head over three times. I’m feeling quite overwhelmed right now – but for once, it’s a very positive type of overwhelm-ment.

Willow was slightly better today and “peeing for England”. So it looked like things were on the up generally.

Wednesday 3 November 2010

Wednesday 3rd November

Bit of a crap day today. I’m feeling really down about Willow. Was very upsetting seeing her today looking all puffy because of fluid retention. Also, I just don’t like Southampton as much and want her to come home to Poole. It probably makes a difference that we started out there so we know how it all works and have got to know the staff.


It feels a bit like we are going nowhere at the moment, and I had some fleeting thoughts that Willow will just never get off this bloody ventilator.

Its times like these that I realize how lucky Leela and I are to have each other. Just can’t imagine getting through this on my own.

I don’t think it helps when we see Stanley in the morning and then go to Southampton – by the evening we are already drained and tired so it’s not going to be good seeing Willow when we’re feeling like that.

On a positive note – Stanley is doing really well, so it’s a real joy when we see him, and are able to hold him like a normal baby.

Just can’t wait to be able to hold our daughter. Cannot bloody wait.

Tuesday 2 November 2010

Tuesday 2nd November

Went to work this morning, where it was a full house. Everyone seemed to be in the Bournemouth office today. I got loads of the same questions and repeated all the answers. My mind wasn’t quite up to fully concentrating, but in a way it was good to try and think about something else.


Got to Southampton and found Willow on her own, looking rather puffy. A male nurse was with her today; he looked, according to my lovely wife, like he’d just come off the street. Willow’s doing alright with her breathing; well, as expected anyway.

Monday 1 November 2010

Monday 1st November

Can’t believe its November already.


It’s going to be a pain going to Southampton and Poole every day. Not good for the sanity.

Sunday 31 October 2010

Sunday 31st October

Started the day in Southampton again today. Willow was with the same lovely nurse as yesterday. She’s one of our top five nurses. It’s quite stiff competition to make it into this prestigious list actually; I could possibly even make it a top ten. I suppose this is a good thing – there are so many nurses that we are more than happy with looking after our babies.


Willow had woken up a bit more overnight, but had not yet made great strides in improving her breathing skills.

The docs got an x-ray done to check there was nothing going on in the lungs which they might have missed and which might be causing additional problems.

The x-ray showed the lungs looking a bit fuzzy, but the docs reassured us that it all looked pretty standard. This was all to be expected; Willow had only just undergone major surgery after all.

We were more concerned that she might be in pain, and Leela was becoming leaky-eyed at this prospect. Our babies are so lucky to have her as their mum. She cares about them so much and I know for certain that there is absolutely no-one in the world who would make a better mother.

The plan with Willow is to take it slowly and get her nice and comfortable before weaning her ventilation. Her little body was still getting used to her new circulatory system, which no longer includes an open duct between her two main arteries.

We left Southampton feeling reasonably hopeful and made our way to Poole to see Willow’s brother.

Stanley was being a very good boy again. He came out of his cot for a two hour cuddle, with just nasal prongs for oxygen. Seeing him like that and being able to hold him makes us feel even more like actual parents. It almost feels too good to be true, even at this stage with such a long road ahead still.

Leela’s convinced that he might have a cleft palate. She mentioned it to the nurse and she’s made a note of it for the doctors to look at. I’m sure it’s alright and Leela just saw the dark roof of his mouth.

The last couple of nights we’ve been catching up on missed episodes of ‘An Idiot Abroad’. Although I still feel quite guilty doing anything that involves pleasure while our babies are stuck in intensive care, I think we need a bit of light relief sometimes or we’d be in an even worse emotional state.

Anyway, Karl Pilkington made us laugh so much we almost couldn’t breathe. Surely that can’t be a bad thing for the babies – although I am feeling guilty again just writing this. I just can’t wait for the times in the future when all four of us will be laughing together at something; I’m going to savour every moment.

Saturday 30 October 2010

Saturday 30th October

We were still riding on the crest of yesterday’s positive waves today. Although Willow had not made much progress, she was doing everything the doctors expected and she looked very stable. She was still on large amounts of morphine and paralysis agents, so she didn’t have much choice.


The plan was to start weaning her off the drugs slowly and wake her up; by the time we left she was already beginning to wiggle her hands. She has a very feisty spirit and we are so proud of her. I’m feeling quite positive now that she’ll get through this okay.

Back in Poole, there was some real progress being made. Overnight, I had spoken to a nurse who said that Stanley had breathed on his own without the CPAP mask for a few minutes. This was exciting stuff! When we got in we were told that it was actually 45 minutes that he was de-masked for, and she was going to try him for an hour today.

So we had a proper cuddle with one of our babies, able to see his whole face. This really was like having a normal baby, and one of the best moments of the last five weeks.

We just wanted to bring Willow back and give her a cuddle too.

Friday 29 October 2010

Friday 29th October - The Day of the Op

Today was a pretty massive day in the grand scheme of things. Our beautiful little daughter was scheduled to undergo a surgical procedure which should hopefully get her off the ventilator and breathing on her own.


We left home before 7am and made our way up to Southampton. I was becoming increasingly nervous, and was glad that Willow was first on the surgeon’s list. I couldn’t cope with waiting all day.

Shortly after we arrived, the surgeon introduced himself to us. With his floppy-haired good looks and slightly exotic Mediterranean accent, he reminded us of a Greek Hugh Grant. He took us to the parents’ room to brief us on the operation and get the all important parents’ consent. He told us how he was going to do the op and the potential risks of doing it. There are two main risks – 1) that the lungs might get damaged and 2) that she might bleed to death. If the duct was to be ruptured during the procedure, there was not a lot of hope. These babies only have 80ml of blood in them, so it wouldn’t take long to lose it all. “All or nothing” were the words he used. So I signed the form and went to see Willow and give her a kiss. Leela was too upset to go and see her, so I thought I’d better.


We didn’t want to hang around in the parents’ room, so we went out to the car to await the news. The wait for the phone call was the worst twenty minutes of our lives. It’s very difficult to describe how we were feeling, but the overwhelming reaction was that Willow was not going to survive it. Both of us thought this without actually telling each other. It is the most horrifying thought possible – that your child is going to die. Never having children before, this was all very new to us – but it’s amazing how you suddenly just love these babies more than anything in the world.

The minutes ticked by very slowly, and eventually my phone rang. A massive wave of relief and utter joy swept over me as the nurse said that the operation went well. I gave Leela the thumbs up as soon as I heard the positive news and she collapsed in happy tears in front of me. We were so amazingly relieved we couldn’t quite believe it. From the feeling of dread two minutes ago, we were now crying with happiness. Willow was obviously still a very sick little baby, but this was one huge step in the right direction.

We went over to the main hospital for a coffee and a muffin while the nurses made our daughter comfortable again. The rest of the day was spent sitting with Willow and visiting the main hospital again. Southampton General’s weird airport style entrance and main corridor is a very interesting place to visit for people-watching. Patients are wheeled out with their drips as they go outside for a fag, and the swarms of very young doctors and students mill about talking like doctors and students.

We saw Stanley in the afternoon and he came out of his box for a cuddle. All in all, a positive day.

Thursday 28 October 2010

26th, 27th, 28th October - Moving to Southampton

Mostly quite alright days.

Stanley moved to CPAP on Thursday, after getting stronger each day.

Talked to Doc about Willow’s op. He was very good as usual, giving us all the info, but it made us realize exactly how poorly Willow is. Leela was quite upset by it, and had a few leaky-eye moments.

Willow moved to Southampton on the Thursday afternoon. We went on up there to check out our daughter and her new temporary home. We found the hospital quite easily, but it was very easy to find. Didn’t really need all the different travel hints and tips given to us by the NICU nurses. But they were only being nice.

We got to Southampton and found Willow in Nursery 3 in the much larger NICU – she had a cabriolet incubator, which made it much easier for us to see her and hold her nicely. The staff all seemed very good and personable, but their average age looked about 16 ½. I half expected our surgeon to actually be Doogie Howser.

When the nurses were doing their handover to the night shift, we got shunted out of the nursery and directed to the parents’ coffee lounge. ‘Holy shit’, we both exclaimed silently, as we turned into the room. We’d been warned that the chav quota was higher in Southampton than in Poole, but nothing could have prepared us for the specimen that was sprawled out on an armchair in the coffee room. He grunted a few questions at us, which we answered as nicely as possible so as not to aggravate him. A question he asked me gave away a big clue to his positioning at the bottom of the social barrel – “Do you work, then?" rather than the usual question you might get “where do you work, then?” His partner wasn’t much better either, nor was the smell omitted by the pair of them. We were quite relieved when handover was finished so we could leave that room.

Monday 25 October 2010

Tuesday 25th October

Last night’s midnight status was surprisingly good after a bad day, so I could have done with another good one this morning, And it was good! Both junior Seniors had been nice and stable. I was at work when I called so that helped me cope – I find it so hard to concentrate when I am in the office.


I worked until 2.30pm and went to get the train to Poole. When I got to the hospital to meet Leela, I bumped into someone from Twin Club, who was there with his wife who was being induced at 39 weeks. While I am very happy for them to have made it all the way, part of me is pretty gutted and annoyed about how we didn’t make it. Seeing them makes you realize how damn early ours came out. Anyway, I hope it all goes okay for them.


Today in NICU was much better than the last few days – mainly because they were both more stable and it was quite quiet in there. We had a nice coffee and people-watching break at the legendary Costa as well. Leela wasn’t able to use her Costa card though, so she’ll be going on about that for another ten years now……..

Sunday 24 October 2010

Sunday 24th October

1 month old today!


That month has gone surprisingly quickly, but has undoubtedly been the most emotionally draining month of my life. Spoke to the nurse for this morning’s report. Both have had reasonably stable nights, and we were pleased to hear Stanley is still not back on the ventilator.

Ooops – forgot to mention for yesterday – Willow’s PDA. The doc spoke to us about Willow’s condition, and that it was quite likely she would be having the operation to close the duct in her heart. Although they are not sure that this is the root of all her problems, it is certainly there and at least it would rule out that issue for good. We are not entirely shocked she might need the op, but it’s not going to be nice seeing her go off to Southampton and them being separated like that. But, not a lot we can do about it, and if it needs doing, it needs doing.

Today in NICU wasn’t particularly pleasant – but again for no particular reason. The room was very busy again today – lots of babies making lots of noises. I’d much rather ours were the only babies in there sometimes.

I couldn’t wait to get out of there really – which I feel bad about because I want to be with Willow and Stanley. But it’s no good for anyone if we’re losing the plot and need a break.

So, we’re on a bit of a lull at the moment, near the bottom of the rollercoaster.

Saturday 23 October 2010

Saturday 23rd October

Morning report said Stanley had been a good boy. We were worrying it might have said he was back on the ventilator. Just need the little fella to keep it up.


Willow didn’t have such a good night – she needed bagging a few times, and it turns out it was due to the tube not being in the right place.

When we got to NICU we found both our children relatively stable. Willow was basically okay until she fidgeted and moved the position of the tube, at which point she would de-sat again. We had quite a nice chat with some nurses, and appeared to be having a nice day.

As the day went on, I became increasingly aware of all the noise in there today. There were quite a few babies in, and the monitors were going off all over the place. For lack of better words, it was ‘doing my head in’.

Mum and Dad visited just after six and stayed till seven. It started off okay but while they were there, both kids started playing up; having bradys and de-sats all over the place. We just felt like we were in the way, and I know Mum and Dad were getting quite upset, probably because I was obviously upset. It was all building up and I felt like my head was going to explode. After Mum and Dad went home, I could see it was getting to Leela too, and she started crying. Today, which had started so promisingly had gone very downhill – without anything really bad actually happening.


We talked about it, which always helps, and popped into Mille on the way home to pick up another amazing take away. And, of course, it’s Saturday, so X Factor was on. Which almost makes me want to be back in NICU.

Friday 22 October 2010

Friday 22nd October

4 weeks today!


The morning report said that Willow’s CRP had gone up from 12 to 16. This is a check they do in the liver, which is a good indicator that there might be an infection. The number is usually <1, but can go up to 100s. So a 16 definitely indicates that the liver is fighting something – probably an infection.

Stanley had not been quite as stable overnight, but nothing too worrying. We just don’t want him going back to the ventilator - don’t think we could handle that right now.

Since Willow went back on the vent, Leela has not quite been herself - and to be honest I am going through a rough mental patch at the moment. Sometimes I think I just can’t handle it, and almost want to break down and cry. This tends to come and go. After you’ve had a good cry, it makes you feel much better. Anyway, only 10 weeks to go.....

On a positive note, today we went to the doctor so Leela could get sign-off to drive again. He gave her the all clear so she was very happy. I know it’s been hard for her as she does love her driving, plus it must be a nightmare a) relying on me to drive everywhere and b) simply being a passenger in a car that I’m driving. I’ll not be sad to let someone else drive again, that’s for sure. My driving skills appear to be diminishing all the time.