Monday 27 October 2008

January 15th

That's the date. That's the date our surgeon will fix Jake's smile, which coincidentally he used for the first time this weekend. Well, we've seen the smile before but believe it was motivated by wind rather than happiness. The date won't be confirmed until we get it in writing six weeks before the op and any illness will delay it but it is likely to be mid January which was what we'd predicted. Originally we wanted it to be this side of Christmas so all of the pregnancy, cleft news, birth and first operation would be neatly contained within 2008 but this is better, we think, so we can forget about it until after New Year and then it'll upon us in a flash.

We've agreed to enter Jake into the Crane database which is a project that monitors and tracks people with facial abnormalities over time to help further the science of it all. This basically involves having his pictures taken in the hospital studio each time we go. He behaved perfectly today and even opened wide for the palate pics. To be fair he was fast asleep but I am impressed with his impeccable manners all the same. He really is very advanced!

Our friends, Emily and Julia are due to give birth over the next couple of weeks so their babies could arrive any minute now; fingers crossed for nice easy births for Milly, Rob Julia and Mark. We're really looking forward to meeting a couple of little playmates for Jake soon.

Friday 24 October 2008

7 weeks

Jake will be 7 weeks old on Monday and not much has changed but he's moved up a nappy size. Feed size is the same which means that what comes out is the same size but there's more room for it. Nice.

He ought to be around 10 pounds at the next weigh in which is grobag weight which we're hoping will make him sleep longer. Why it will help, we don't know, we just hope. Anything's worth a try....we actually have it lucky but can't fathom how he's able to kip for 4 hours between 6pm and 10pm and then for only 2 hours at a time through the night.

Jake now spends a couple of hours with Clare in the morning on his playmat, just staring around, taking it all in, but awake and not crying which is really nice. His face is changing and his eyes are open a lot more so we're beginning to find out what he'll look like. Out of interest I Photoshopped a picture of Jake last week and cloned in a complete top lip to see what he's going to look like post-op....I felt really bad afterward but then realised that it wasn't bad, I was just interested. Plus I'd just got a copy of CS3 and needed some subject matter. My reaction to the new image (and most professional a job it was too!) was a bit indifferent which is I guess a sign of how little the cleft bothers me, if at all. I know it's there but really it's only an issue for other people who've never seen a baby with a cleft lip before. There's been a handful of times when people, mainly strangers, crane their necks into the carry cot or baby seat to have a look and manage not to react in the wrong way. They all say he's adorable and cute, which to be fair is true. I feel awkward in these situations but not for the reasons I thought I would. I just don't really enjoy seeing other people in awkward situations and feel embarrassed for them a bit I suppose. I used to think the first op, the lip surgery was more important for us so we'd be proud of our 'normal' baby again but that's not true, we're so proud of how he looks regardless of the cleft; the operation is all about him. Helping put back the bit of his lip that nature put in the wrong place so that he won't have problems in later life. We're meeting the prof on Monday morning and will get dates for the operations. Quite exciting I suppose if that's the right word for it. I do think it will be a horrible time when we have to leave him to go in for the operation. I think that will be the first time when we really feel like parents, when we worry about if he's in pain and that we can't fix it. It'll be weird and upsetting but ultimately rewarding.

Here's some more pics.

Monday 6 October 2008

Jake Fernie one month on

So we've done a month and it's been fun. And knackering. The first few days is really just a case of staring in wonder at your boy and patting yourselves on the back at how clever you are and telling your wife / husband how proud you are of them. Then you get some confidence and before you know it life starts to return to 'normal'; you're not on the phone to the hospital every time he cries, you know which positions get the best burp and you can jump out of bed at 4am with alarming enthusiasm. So this is now our 'normal' life, one where we don't really do a great deal other than look after Jake, which I believe is the whole point! The walls do start to close in so it's important to do normal stuff, we had a meal out after a week and although we ate it in record time worried all the while he'd wake up, it was good to try and have a life. Of course I get to go to work which serves a few purposes. Firstly it pays the bills, secondly it gives me respite from any incessant crying, squirming, unsettling which in turn makes me miss him more and thirdly, it allows me to have a separate life. It also has its downsides as it means I can't take over from Clare during the day and babies are very trying at times. The major upside about bottle feeding is that both parents can share the feeds and if there's anything that can make you forgive 3 hours of a baby shrieking at you, it's looking into his eyes when he's getting the good stuff. This is where the NCT network has been so good as well as Clare's friends who are almost all pregnant as it gives distraction during the day and a good reason to go out. We find he sleeps better if he's had fresh air which is same for all of us I guess.
I remember writing about how the thought of sleepless nights were the last of my worries after we found out about the cleft(s) and how insignificant their prospect now seemed. Well, given that the clefts now seem almost non-issues, the sleepless nights have come back to worry me accordingly. During the first week Jake slept for 4 hours, woke for a feed and change and then slept for another 4 hours which is really very doable, especially if you alternate it between mum and dad. An eight hour kip every other night is pretty good. Jake's timing is impeccable though and managed to slip into a wake up and scream pattern every 2 - 3 hours just as I went back to work and this has settled nicely so that we really don't know now when we should go to bed, if at all! We thought it was best to feed and get straight into bed (Friday was 9.05 pm - rock 'n roll!) but then he might struggle about for an hour then wake 30 minutes later as we drop off. So it's tricky but that's what it's all about I guess. He also knows the second I put the dinner on the table. Not the minute or roughly as I'm serving up, literally the second it goes down he starts crying. So we've got good at eating in hurry or one-handed.

The first month is definitely different and hard work but it's also wonderful and fascinating and while you do find yourself longing for when he sleeps through and can be awake without screaming or feeding, it's important to take it all in and enjoy it as it's going by so fast. Everyone I know with a 2, 3 or 4 year old sees him and says how you forget how tiny they are and how quickly time goes. So I'm trying to film it all, photograph it all and document everything so we can remember it.

He's got dry skin and baby spots right now but other than that all the health workers are really happy with his progress and weight gain. I got my first proud-dad moment when he aced his hearing test as he was the first cleft-affected baby in 6 years to do that, which I was naturally not surprised about....I got teased at school for having big ears and it seems now, finally some good has come of these gigantic lugholes!

2 more of the NCT babies have arrived since the last post and Clare is hosting this week's get together at our house which may not be big enough to cope with 5 pushchairs! Jake is probably all of 18 inches long but the stuff which comes with him has taken over the entire house.

Till next time, he's a picture of Jake with his proud Grandad.