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.