Thursday 29 January 2009

2 weeks on

I can't believe it was two weeks ago that we were at the hospital enduring the wait before Jake's operation. All baby related things tend to move pretty quickly and they grow and change in the blink of an eye. I now understand that 'oooo haven't you grown' isn't a cliche, it's just true. Jake is changing before my eyes which is wonderful but I also don't want to miss any of it. He rolled over for the first time earlier in the week and this morning, instead of having to put him in our bed when he was crying at 6am, we had to go into his room to check he was still there! When we went in we found him playing with his cot mobile...the aroma in the room would normally mean that he'd be in a foul mood desperate for a nappy change but he was happily playing and making cute baby noises!

The first week and a half after the op wasn't much fun and sleep was not on Jake's agenda. He would still go to bed on time without much fuss but he would wake almost hourly with the kind of apoplectic rage I usually direct at traffic wardens and people who don't indicate left when leaving a roundabout. Lots of shushing and consoling was required and, on occasion, a second feed was required to get him back into sleepy town.

Now he's back on sleeping through with just the one feed but he's more unsettled in the evening. The evening has always been our sanctuary. I get in, make stupid noises, make him laugh, bath him (sometimes), feed him and put him to bed and then Clare and I are able to enjoy a normal evening like we did before he was born. It's not too bad but we have to endure the controlled crying thing before going to settle him if he doesn't manage it himself. I always go to sleep with my fingers crossed (I actually do this!) hoping he won't be too much of a pain for Clare which will therefore mean he'll be good when it's my all night shift on Friday!

Anyway, he's hopefully over the worst of the pain now and we're reducing his meds daily. The scar is healing nicely but starting to shrink a bit so he'll look different from week to week until it settles down in a year or so.

We started weaning the other day and Jake's first attempt at baby rice went well as you can see below!

More soon.

Monday 19 January 2009

Well, that's that then

So we're back. Jake is my new hero, what a brave little boy. All went virtually to plan but we had to wait an hour and a half on Wednesday just so we could have the 5 minute check over by the doctor to make sure Jake was a.o.k for the operation.

This was caused by the fact that Jake's name was at various times spelt by morons who were employed to ensure the NHS is complying with equal opportunity policies. Jake 'Fernig' perhaps seems a forgivable enough error when you consider g's proximity to e on a keyboard but not so forgivable when you consider major facial surgery. What if there had been a Jake Fernig due for a completely different operation? The poor lad would have gone in for an eye test and come out with a repair to a non-existent cleft! Next he was Duke Barney!?!?!?! WTF? My God, I'm all for equality but you'd think someone might double check...surely the base level for all equal opportunities type policy ought to be basic ability to listen, read and write. How is it 'equal' when people who are plainly, idiots are incapable of doing the actual job, get the job over normally educated people who could do the job standing on their heads?

Either way, the operation went ahead, albeit two and half hours late. Why nothing is ever on time when it's been in the diary for months I'll never know. Also Jake was the only baby and the only one there who'd never had an operation before. We had to starve him from 6am and to his enormous credit he went all the way to 2.30pm with nothing more than some low level grumbles. One of the people waiting was a 15 year old boy in for a lip and nose revision and the other, coincidentally, was a young girl from Guildford, in for palate hole and lip revision. Both of these cases could have understood that the baby would have to take priority as they'd had operations before and it's the waiting more than anything else which is the hardest to cope with.

A note on these other cases. Piet had told us that in 500 operations only two had revisions, yet here were two people in for revisions! What are the chances?! I think that a lot of what we had been told was to keep us calm before the event, knowing that we'd just cope afterwards.

So, that's my only complaint dealt with, the rest is nothing but praise and admiration. Firstly, the hospital was incredible. Only a few years old, super modern, brightly decorated, welcoming and spotlessly clean. MRSA would be scared to step foot in the Evelina children's hospital; we were very impressed. The nurses were fantastic, so kind and attentive. I guess they get huge job satisfaction working with babies but still they work 12 hour shifts on sod all money and keep a smile on their faces at all times. They were great and put as much at ease as possible.

So the hour finally came when it was time to take Jake down to the theatre and it was the moment we were dreading most. Saying goodbye to him and holding him as he was given the gas and air was horrendous; he had a look on his face which just said 'why?'. It occurred to me that he'd never asked for any of this. He thought everything was fine, he was eating and sleeping well, socialising, learning, developing etc, etc and then we go and sedate him and have him operated on. Obviously all for his own benefit but you try to rationalise with an 18 week old baby! Poor was an emotional time but thankfully the anaesthetist ushered out quite quickly so we didn't have much time to dwell and went for a long walk and a drink while we waited.

Time waiting to go into the recovery unit dragged for an eternity but eventually it came. We walked down with nervous anticipation, worried that Jake would be changed and in pain. One of the nurses was cuddling him and he looked bewildered and groggy from the morphine. It was both a shock and not a shock to see him. I knew he'd look different but not that different but what I found upsetting was that the old Jake was gone, vanished into history and it seemed like that's what we wanted. Actually we love the old Jake and we kind of wanted him back. Because of his lip his smile was so much bigger than other babies and to us that made him a much happier baby. His new smile is smaller but that's because his new mouth is smaller so therefore it makes him not as happy? No, obviously not, but it all goes through your mind. Within an hour we were back on the ward and staring at him in all the amazement that we experienced four months ago when he was felt like we were back to square one. Having just got rid of the kid gloves it felt like we needed them again and had to be so much more gentle with him. It's really just because he looked so pissed off and dopey that we felt that. The most upsetting thing is that he wasn't himself and there was no way we'd be getting the smile (old or new version) that we were starting to get on demand.

As, predicted I got to sleep on the floor which made me feel like I'd been worked over by a baseball bat but did manage a few hours. Clare got up to feed Jake at 5am and I snuck into her pull down bed and fell into a deep sleep for a couple of hours and this saved me.

Then by 2pm on Friday we were home. We still cannot believe how successful the operation was and what a massive difference a day makes. The new lip and nose look great and it's just the biggest relief that this part of it is over. The operation includes some repair work to the front of the hard palate (the bit your tongue touches when you use the letter T or D) so this acts as scaffolding for the rest of the palate repair in May or thereabouts.

We're so grateful to the whole team and efficient process that made it as bearable as possible and feel much more assured about the second operation now we've been through this one. Here are some photos of our fantastic brave boy.

Now breathe!

Monday 12 January 2009

The big week

It is a big week, a very big week. It's a week we've been waiting for since 2.30pm, Thursday the 22nd of May 2008. That's 7 months and 3 weeks of research, anxiety, waiting and preparation for the first of three operations that we know about and perhaps others that we don't yet know about.

Since Jake was born and most of the worry about the cleft disappeared, a lot of the original issues have taken a back seat, but now other issues, those about the actual surgery have come to the fore.

Ann, our community specialist nurse visited last week and we bombarded her with questions, many of which she'd already answered when she first visited. The running order is as follows;

Weds 14:00 - we arrive at St. Thomas' and 'check in' to our accomodation which is a shared appartment annexed to the hospital.

Weds 15:00 - pre-admission clinic. Jake will be given the once over to make sure he's fit and well enough for the surgery. If he has even the slightest cough or cold they will postpone the op for at least the next three weeks. Whilst I wouldn't say we're looking forward to it all, the last thing we want is to have to come home without having had it done.

Weds evening - at leisure. Yeah right.

Thurs 06:00 - wake Jake, feed Jake, begin the starvation.

Thurs 07:00 - take Jake to the ward to get him settled and wait. The first surgery slot is 09:00 and we're more than a bit pissed off that he's not first up. The other 2 operations are not clefts and they're not on babies so I think it's a bit unfair to make him wait when the other patients could be made to understand. But I would say that I suppose

Thurs 13:00 - pre meds are administered and Jake is taken to theatre. This part will, without doubt, be the hardest for us. Jake will be fine as he'll be in morphine-induced euphoria but we'll be holding his hand watching him go under and then they will administer the anesthetic. God I'm dreading that. I'm getting bored of crying in hospitals and I'm pretty sure my sissy girl habit will be in full effect at precisely this moment.

Thurs 13:30-17:00ish - we go out, anywhere but the ward we're told, for the long wait while our brave little man has the first op to put the things in the places which nature didn't quite get right.

Thurs 17:30ish - we get the call and go down into the recovery area and watch him come round ready to feed. He ought to be hungry but he's going to seem grumpy and a bit disorientated. Not surprising really. I had a few operations as a boy and although none of them pleasant, at least I was aware of the situation and knew roughtly what to expect. Jake is 18 weeks old and hasn't got a clue of what's happening and will have no idea of where he is or what has just happened when he wakes up. The pain ought not be an issue as the anesthesia will manage that but his new lip line will feel odd and numb. Either way, we'll be braced for this phenomenon which is supposed to cause us to be upset at seeing that his appearance has changed. I can understand it, but I think it's as much seeing him groggy and fed up as much as with his new lip.

Thurs evening - we get to spend it back on the ward with the new Jake and one of us at least will get a pull down bed next to his. If there is a spare bed on the ward then the other gets that, if not, it'll be a night in a chair for me!

Friday - Jake will be monitored for a while and given another once over (I don't mean to sound flippant, I'm sure it's pretty thorough!) and as long as the docs are happy they'll send us home.

For two weeks, pain killers will be necessary and these will be a mixture of liquid paracetamol and ibuprofen and we will slowly wean him off them. We'll have to start applying an ointment onto the scar after this and over the next 18 months or so we will do this every day to help with the redness and general settling down. At first the scar will be perfect insofar as it will be the full length of the lip. After a few months the scar will begin to retract and this will cause the lip to retract a little so the repair will look better at first and then appear to get a little worse but then the scar elongates again. The skill of the repair work is to make sure that when the scar finally settles into place it is the right length and will then just grow as Jake does. In over 500 operations the surgeon has done just 2 revisions have been necessary based on where the lip / scar ultimately finished up.

So there you have it. It's gonna be a toughie this week but ultimately worthwhile. I think the waiting and bit in the theatre beforehand will be the worst but it's not about us, we have to step up and 'be a man' for our little soldier in his first battle.

I may do an mobile update at the hospital but no promises! A full entry with photos will come Fridayish depending on how much sleep I get in an upright chair. In short, don't hold your breath!