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.

Thursday, 25 September 2008

How I / we feel

This post has been a long or relatively long time coming. There are a couple of reasons, the first being that we've been a bit busy of late, looking after Jake and everything and the second is that I wanted to make sure that how I felt was actually how I felt and not post-birth euphoria.

Jake is 2 weeks and 3 days old today at lunchtime and it's gone in a heartbeat yet feels like he's been a part of the family for ever. Odd, if understandable.

Anyway I think that the emotional roller coaster which we started in earnest back in January when Clare told me she was pregnant and which took several twists and turns along the way, has, I believe made its last turn and is slowly coming to a halt. Sure, we will be getting off of the 'pregnancy with a twist' roller coaster and and climbing on board the much faster, scarier 'the next 18 or so years' roller coaster but we can now do it with much clearer heads.

Between the 20 week scan and when he was born, I saw cleft(s) first and our child second when I shut my eyes. It was almost all consuming and evoked all sorts of emotions both positive and negative. It was a bit of a battle between staying positive and without sounding overly dramatic, breaking down at regular intervals. As I've mentioned we had up and down days, normally separately and each would cheer up the other or rationalise with them until it was their turn to get on the therapy couch and the situation would reverse. I remember way back at the beginning of this blog worrying about other people's reactions to the cleft, now that just seems completely selfish. I was worrying about what other people think because of how it would make me feel! What a difference a day makes!

The birth itself was a stressful time, although we look back and feel lucky that it came two weeks early as it didn't give us too much time to work ourselves up. The most significant part, for me at least, was the bit we went from going in for a cautionary check to being escorted to the delivery suite. There wasn't much time to freak out but if there had've been I would have. It was like the denial of the birth got stronger the closer we got to the date and it was only at the very last moment did I actually realise we were about to have a baby!

I remember looking out of the window in the delivery room watching the world go by and people going about their business. People waiting at the bus stop, drivers on the A3, visitors coming and going and all the while Clare was trying to push Jake out. I'll always remember to look up at the maternity ward when I pass the hospital from now on as a nod to the significant events unfolding for the people inside.

Of every feeling I have or have had in my life, I'll never forget the emotional outpouring when they pulled Jake out and held him up for us to see. Throughout the birth and in fact the latter part of the pregnancy I'm not afraid to admit to being somewhat more emotional than normal. I'm not a typical alpha male and happily wear my heart on my sleeve to a point but I had turned into something of a girl of late. Anyway when Clare started pushing the midwife seemed very happy with the progress and I calmed down. I was even beginning to worry if I would be emotionally affected when the baby was born. Well suffice to say, I was and needn't have worried as I was probably 7 or 8 years old the last time I cried uncontrollably like that!

They put him in my arms after they'd cleaned him up and swaddled him and obviously I looked at the cleft to see its extent but didn't dwell on it for more than a second or two. Given the distress and worry the cleft(s) caused before we'd even seen them, it seems incredible how little they cause now we can see them. Incredible in a good way, a brilliant way in fact. I wrote an entry about how I wanted Jake to change me and it happened just as I wanted even though I thought it was a pipe dream.

Jake has a cleft lip and cleft hard and soft palate. We knew about the lip but not about the palates. They told us that the palates were affected in the delivery room and it was no more significant news than them telling us the colour of his eyes. Seriously, all that we were worried about in respect of the 'defects' disappeared as insignificant detail.

I don't mean to be flippant, obviously these are major things which will need to be fixed by reasonably major surgery, however we can deal with them with clear, level heads as opposed to messed up, neurotic, overly emotional heads.

Jake sleeps well some nights and less well others. He feeds, poos and sleeps just like any other baby and we're so grateful that there are no other issues (touch wood). Clare's been getting used to her new life, seeing visitors, hooking up with the NCT girls (a great decision it was to go to NCT, highly recommended, despite my misgivings!) and enjoying the moments of quiet while he sleeps in the daytime. I get to go home every lunch time and chill with my boy and then spend some time with him in the evening and it's very, very cool.

I am committed to this blog and will continue to document Jake's journey at least until his cleft palate operation which will be sometime in Summer 2009. We are meeting with Professor Haers on October 17th and we'll get a date for the lip operation but it's likely to be in early January.

I feel very lucky to have had such a wonderful son. I wanted a boy all along really!