Friday 18th February

Things are still going well in the Senior household. It now feels like we've always been a family; I can't imagine what it would be like without Willow and Stanley around.

We're slowly getting into the flow of everything, and our sleep amount has increased from three quarters of a minute on Monday night to three quarters of an hour last night. The babies are getting a lot more sleep - and are generally very settled, quiet and happy. The only time they really cause a fuss is when they're hungry. Stanley can go from fast asleep to screaming his face off in about six seconds. And Willow's voice is getting louder all the time, so she's not far behind her brother in volume.

We can see they've come on so much in these last few days since being at home. Both of them are feeding a lot more nicely; probably helped by the fact that only the two of us are now doing it, and we're both a lot more confident and know exactly what they want. What's really nice is to be able to hold our babies without wearing gloves and aprons, and to not have to share living space with other people.

Today we had a bit of a surprise photo-shoot. The Echo wanted to do a story about us after Leela's school sent in a press release about some money they'd raised for NICU, and they wanted some pictures of us all. We made sure the kids were well fed before the photographer arrived, and they were very well behaved, even giving a few smiles at the right time.

I can't believe how quickly this week has gone; only ten more days off and I'll be back at work. Leela's going to have her hands full, that's for sure. She copes unbelievably well though, dealing with us three hungry whingeing babies all day. She's a real natural mother; the way she calms down both Willow and Stanley when they're both screaming at the same time is amazing.

Going by the noises coming from the moses basket in the corner, someone's a hungry boy again. Time for some more dinner....

Tuesday 15th to Thursday 17th February

So, we're now three days in to (relatively) normal family life, and it's been a real baptism of fire. We haven't really left the house much since arriving home on Monday; and why should we - for the first time since September, we have no reason to go anywhere. Everything we need is under this roof.

We've experienced some worries; perhaps now more akin to the kind of worries any new parent would have. There are no nurses or doctors providing 24 hour support, so we have to just use our instinct a lot of the time. I suppose this is where we have the advantage over normal parents; we have known our babies for nearly five months after all, and will therefore know if they're acting differently in any way.

We also still have the heart rate/oxygen saturation monitors, so we're not away from all the beeps of NICU just yet - not until both of them are completely free of additional oxygen. This makes manoeuvring around quite difficult. Willow needs to be attached to oxygen all the time, so when it's time for bed we have to detach her from the downstairs supply quite quickly and run upstairs to plug her in there. We have a portable bottle to carry around if we do venture outside, and we did have our first outing today. We walked around the block to try out the buggy, trying not to keep our eyes attached to the monitors but looking at the babies instead.

One thing we have learnt, is that having two babies to look after is a full time job for two people. There's not a lot of time for sleeping, eating or anything else. But who cares about any of that. It's so amazing having them at home; being able to know exactly what they're doing all the time. They're doing really well too - generally going four or five hours between feeds, and doing a lot of sleeping. We just need to get them - and us - sleeping at the same time.  Not sure how easy that's going to be though.

Willow's diarrheoa has now disappeared; her stools are well and truly solid. Maybe she just wanted to come home. We've had some lovely moments as a family; just sitting in the lounge, listening to music and smiling at each other. Just normal things that we've dreamed of doing for so long.

Today we're making a trip back to Poole, but this time as out-patients. Stanley needs to have some more immunisations so we'll be popping back into NICU for a while. We might even do something normal afterwards, like go for a walk around the park. How about that.

No time for writing just yet - here are some pictures....

Chillaxing on the sofa..

Willow's fist showing Stanley who's boss

Willow being very inquisitive as usual

             


                                    

Monday 14th February

Today was officially the best day of all time. Things were going well from the start - the new Bright Eyes album was released today (and it's amazing), the sun was shining, the morning NICU phonecall was another good one, the bus was just pulling up to the stop as I got there, and I had the exact change for it in my pocket.

More importantly, we arrived at the hospital this morning knowing that we'd be coming out of there as a family of four for the first time. In fact, we'd known since the doctors' round last Tuesday that today was to be the day of our release, on the condition that neither Willow or Stanley got up to any funny business in the meantime. We didn't tell anyone about this, in case it didn't happen again. We couldn't be dealing with explaining to everyone why they're still not home.

So, as I had some things to tie up at work before I could have two whole weeks off, Leela went in on her own again today and I followed on the number 15 a few hours later. Just as I arrived, the doc was about to start doing the final check of our babies to tell us if they were allowed to go home or not. Both of them passed the test, and were given the all-clear.

So that was it then, we were free to go. After 143 days, over 2,000 miles, a parking fine, a car crash, 65 train tickets (only three of which even got checked), two hospitals, ten different cot locations, a PDA ligation, about fourteen blood transfusions, two rounds of steroids, 45 americanos, 32 BP meal deals, 300 phone calls to NICU, a whole Christmas silly season, far too many Zinger towers and 143 sleepless nights, we were finally all going home, together. It was an exciting and scary, but most of all unbelievably happy moment.

We're quite sad to be leaving behind the NICU family who have looked after and put up with us for the last third of a year. We're not going to have anyone to ask a million questions to every day, and generally look really worried in front of. The support we've had as parents is more than anyone could hope for in this situation; sometimes it's even been a pleasure being there. The nurses always know the right thing to say. One thing I remember someone said after about three days in, was quite simply 'We'll get them through this'. Something in the way she said it made me believe her, despite the fact that so early on, no-one could have known what might happen, or known how joyful or terrible the outcome might have been. But those few words were said with such confidence that they kept ringing in my head the whole time we were in there. There were some moments that were just too awful to comprehend. When Willow came back from Southampton and her lungs were in such a dire state, we really didn't know if she'd make it out of there. But her little fighting spirit was what pulled her through in the end; we really shouldn't have even doubted her. If they can both get through this, they'll get through anything life decides to throw at them.

So we said some emotional goodbyes, and walked out of NICU for the last time as residents. We were now those annoying people coming out of the hospital with the car seats, who we'd been looking at so bitterly since September. It didn't seem quite real, and still doesn't.  We are now actual parents, and have full responsibility for these two precious little humans.

We're coping reasonably well so far, although it does get quite hectic when both the babies wake up hungry at the same time. It's still a pain having to cart around oxygen bottles and sat monitors everywhere we go, but that's a small price to pay for having them home with us. We're going to spend the next few days hibernating; just the four of us getting to know each other. We're going to have to be extremely strict with infection control. After seeing what happens to them when they get an infection, it's not worth taking the risk. So no-one other than immediate family will be able to handle them for a few months, until the summer arrives and brings with it less germs than winter.

Usually, right about now, I'd be phoning the NICU hotline for an update on how our children are getting on; each time dreading bad news on the other end of the line. Now, we just have to look across the room and see them fast asleep, dreaming of eating and never far off waking.

So today is the start of the next phase in the lives of Willow and Stanley. Their story so far has seen a lot more stress and troubles than most people would think is possible. We're ready now for the next installment, and we can't wait to share all their future adventures with them.

Sunday 13th February

After a very enjoyable stag night in Devon yesterday, Sunday morning welcomed me with something I've not experienced much recently - a stinking hangover. Not the best thing to take with you to NICU, as it would make the bad things a whole lot worse. Thankfully though today, there wasn't any of that.

This evening, while back at home, the song 'Wires' by Athlete came on the radio. It's one that completely passed me by when it first came out, as it meant nothing to me whatsoever. Now, it has a totally different effect. Listening to that, while looking at the first photos of Willow and Stanley, really brought it all back into perspective and it touched us both a lot more than it did when we heard it three or four months ago. If this whole nightmare all happened again right now and we had to see our babies lying helpless with tubes down their throats and wires all over them for weeks on end, we'd crack up completely. The difference is back then, they weren't really our babies, they were just these small creatures who we hadn't got to know yet.

Now, they are definitely our children and there are signs that they may be coming home with us in the not-too-distant future. They were looking stronger than ever today, still growing very nicely and doing everything they should be doing. Willow's eyes were following both of us as we moved around the room; which is very reassuring. Every little normal thing such as this that they do is one small box ticked on our lengthy worry list we have in our heads. We're pretty sure that both of them won't get through what the last 20 weeks has thrown at them completely unscathed; but at the moment they're making all the right moves.

Another Monday tomorrow then, to move us further into week 21. Hopefully this week will continue to throw nice things at us.

Saturday 12th February

It’s Mummy Senior writing this tonight as Daddy Senior is gallivanting in Exeter with Woody Woodpecker – happy stag, Simon!


We are now half an hour into Sunday and I have only just finished cleaning having come home from the babies earlier than normal with the intention of getting the house cleaned up and ready for the (hopefully) imminent arrival home of our babies. About time I say, it was 20 weeks on Friday. When you think that it will be July in 20 weeks time it really illustrates how long it has been. Driving away and leaving your babies behind doesn’t get easier and the butterflies of excitement I get arriving at the hospital each day don’t diminish with time either. If anything all our emotions are heightened at the moment. I feel terrified that something will happen that will mean our discharge is put back again and of course the thought of having them at home without our ‘2nd family’ around is pretty daunting too!

Both babies have now done the car seat test, which is just sitting in the seat whilst their sats are monitored. Willow loved it and had a little grin on her face for most of the time but Stanley was less impressed and looked up at me like I’d gone mad. They both got a tick in the box for that test and Stanley was rewarded with yet more milk.

The babies had an injection of Synagis today. It is designed to prevent RSV which is a nasty cold virus which, should they catch it, would almost certainly see them back in hospital on some kind of breathing support, maybe even a ventilator. Not all babies receive this injection as it is incredibly expensive but due to their Chronic Lung Disease they meet the criteria. The thought of them getting an infection when they are home is scary as, due to their lowered immune system and poor lungs, they will find it hard to fight – as illustrated with their latest infection that saw them back in intensive care. I bought 5 bottles of alcohol gel today and have positioned it all round the house in preparation!

It’s now 12.50am, the tumble dryer has just finished and I have just turned off the radio. The quiet that I am now faced with is such an empty one if that makes sense. It’s funny but although we have been together for 11 years and lived just the two of us for most of that time, it has only been since the 24th September that the quiet is so empty. Something is missing around here and I think it’s about time they came home!