Thursday, 27 January 2011

Wednesday 26th January

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

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

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

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

Tuesday, 25 January 2011

Tuesday 25th January

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

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

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

Monday, 24 January 2011

Monday 24th January

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

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

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

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

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

Sunday, 23 January 2011

Sunday 23rd January

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

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

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

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

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

Saturday, 22 January 2011

Friday 21st to Saturday 22nd January

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

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

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

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

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

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

Thursday, 20 January 2011

Thursday 20th January

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

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

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

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

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

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

Wednesday, 19 January 2011

Wednesday 19th January

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

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

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

Tuesday 18th January

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

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

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

Monday, 17 January 2011

Monday 17th January

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

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

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

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

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

Sunday, 16 January 2011

Sunday 16th January

Another good day for the junior Seniors.

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

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

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

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