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!

Friday 12 September 2008

The Full Update - facts

Well then, after the first four days of Jake's life I thought I'd go back to last Sunday and make two blog posts. This one, is about the facts and the second one will be about the feelings.

Here goes.

So it's Sunday the 7th of September and we're off to my parents' house for a belated birthday lunch for my dad's 65th. En route Clare mentions that today might be the best day to start my baby-watch-no-more-than-two-units plan, which was not meant to start until Monday, two weeks before the due date. I concurred with a grunt and that became the theme of the day thereafter. Everyone said 'not long now' and I kept refusing the bottle of wine as it came around. Clare was quietly having mild contractions and behaving in her usual demure manner.

Clare is no drama queen but I was convinced these were nothing more than braxton hicks, little warning tremors designed to keep us on our toes. My conversations were pretty much all centered around the fact that I wanted baby to hold off until Friday as I had a presentation to give on Thursday and hadn't yet finished the document what with the final all day NCT meeting on Friday and all.

We left at around 7 and by 8 Clare was pacing the living room every 5-8 minutes. I was getting her to blow out the candles (a ridiculous, NCT-prescribed exercise where you hold up your fingers and get her to blow at them as if they were cake candles). Over the next three hours the contractions, as we were now convinced they were, got stronger and started coming more often. Eventually I phoned the maternity ward at midnight for some advice. They asked me if Clare had felt the baby move recently and Clare couldn't remember if she had. So she had some sugary biscuits, freezing water, jiggled about a bit and played some music for chickpea but no movement came. I reported this back to the ward and they said we ought to come in as a precaution.

We grabbed the bags and put the cat food timer on and headed to the hospital, a 5 minute journey at half past midnight on a Sunday. It's a weird time to be in a car, can't remember the last time I was at that time. Anyway the midwife greeted us and hooked Clare up to the baby heart rate monitor and contraction monitor and left us for half an hour. The contractions kept coming and Clare was in more and more pain. The next blog post will go into all of the emotional bits; remember these are just the facts. We were worried that they would tell us that these were the very early throes and we ought to come back later but upon 'examination' the midwife told us Clare was 4cm dilated and we were definitely having the baby before long. So we moved from the antenatal ward to the delivery ward to sit it out.

The gas and air kicked in for me but Clare didn't like it. It got rid of some of the discomfort but made her feel too light headed. I explained that that was the point but Clare doesn't like to be out of control and never gets drunk so she wasn't prepared for it. After almost 8 hours of contraction pain she elected to have a mobile epidural. Royal Surrey try to persuade you to have Pethidine which is a drug which doesn't numb but puts you out of it much like gas and air but then some. Clare didn't want that as it can make you feel sick, so epidural it was.

The anesthetist turned up half an hour later and got Clare to sign the form declaring that she'd understood that if he slipped and gave her a spinal tap she could get a headache which would last for a year, or worse lose the use of her legs. It must have been painful because she didn't flinch and signed straight away. The anesthetist had a good bedside manner, although a little too much of a dry sense of humour. I know he was trying to put Clare at ease but given the disclaimer and the job in hand, I'd have rather no sense of humour at all. Anyway the epidural went it and no headache occurred and within 20 minutes Clare was telling me she was having massive contractions but only because that's what the monitor was telling her! How anyone can do contractions like hers were but for another 9 hours and then push out a baby is beyond me.

Anyway we sat there talking and trying to nod off until seven am when I sent some messages to work so they could finish what I hadn't and we spoke to our parents to let them know it was all happening. The cervix dilates at a rate of one cm per hour and at 10 cms, you're ready to push. Epidurals tend to slow the process down a bit so they leave you for an extra couple of hours to get he head down as low as possible. At 11 am, the midwife told Clare to start pushing with every contraction. Three pushes each time and I was holding her hand and, bizarrely, also pushing!
An hour in, they put up a drip to help the contractions and after 2 hours I was told to get my scrubs on as we were theatre bound. Again, this post is not about feelings but suffice to say it was an intense 30 minutes of getting ready and signing more disclaimers and whatnot while they got everything ready.

I won't describe the position that the apparatus helped Clare to get into as she may not thank me, but it's not a position you'd ever choose. I had my head next to Clare's trying everything to console and calm her but actually she was fine and the advice I was giving was more for me than anything!

At one point, I made the mistake of looking up and seeing the surgeon holding a pair of forceps which looked like a nut cracker which was disturbing but I didn't have long to dwell as Clare was being told to push like her life depended on it. They were all shouting that they could see the head and with one more herculean push, they pulled the baby out, seemingly in one go and held him up for us to see. Covered in blood and gook, all I saw was his groin and blubbed shouted,

'it's a boy!'

The next hour is still a blur but Jake was cleaned up and giving to me while Clare was sorted out and we all headed back to our room to gaze in amazement at our bundle of joy.

We had all the usual health visitors over the next few hours including Ann, our cleft specialist who showed us how to feed him. The hard and soft palate are affected, although it hasn't affected his sucking mechanism or swallowing so he's feeding incredibly well.

I send a text to friends and family and within minutes my phone was going berserk. I got over a hundred texts and emails and Facebook comments within just a couple of hours which was very nice, and I read them all to Clare and we spent much of the next few hours with tears in our eyes. Must have been a very dusty room.

At 8 I went home, had a beer and passed out. We were discharged at 8pm on Tuesday and enjoyed the special moment of bring Jake across the threshold of his new home. Then he started crying. And crying and crying. No dirty nappy, fully fed, winded and just wouldn't stop. Then I started singing and he stopped. Most people start crying when I sing, not the other way around! Anyway it worked so who cares. Now Clare and I use harmonies to get him to stop and we're getting quite good at humming the low and high parts of Jerusalem at 4 in the morning!

Since we've had loads of cards and deliveries and people dropping in and it's been great. Last night a few friends came over and cooked us a meal and then washed up and it was all lovely. All babies are greatly anticipated but I think Jake is being extra spoiled as people have followed his journey with particular interest due to his different start in life. I will talk about the clefts in the next post but for now you should know that none of it seems like a big deal any more. We have a wonderful son and I couldn't really care less about a couple of slight issues.

He's been sleeping really well and we've got him so he feeds just before we go to bed and then wakes for a feed and change at 4am and then again at 7.30am....if it stays like this, I'll be surprised and very happy but for now, especially as I'm not at work, it's a piece of cake given the end result. I snuck out yesterday afternoon to give the presentation and it all went well and I think the sympathy card I played regarding how tired I looked might do us some good.

So all in all it's been a busy week. I can't believe it's Friday already.

Wednesday 10 September 2008

Meet Jake

Or rather meet Jake Thomas Henry Fernie. Our boy.

Jake because we've loved the name for a while and is a great for baby, toddler, boy and man. Not too common, not too unusual. It's a manly name; you don't get many ballet dancing Jakes, if you catch my drift. Thomas because it's nice and traditional and I like the idea of him using Jake T. Fernie when his charity and missionary work finally gets the recognition it deserves! And finally Henry after both of our grandfathers. Or as my best mate pointed out now unofficially after Thierry, Arsenal's greatest ever player. Well 2nd greatest ever player after Dennis Bergkamp! Obviously we would never, ever, EVER name a child after a footballer, just so long as that's clear!

Anyway here he is in all his amazingness.

I've just finished the night shift in the lounge which was very successful as it gave Clare 8 hours kip but I need a couple for me now so till later...zzzzzzzz

Monday 8 September 2008

It's a boy!

Our son, who is remaining nameless overnight at least, was born 2 weeks early today at 13.50 weighing 6 pounds 14 ounces. The only way I can describe my feelings are that they are undescribable and moreso given that I haven't slept since the early hours of Sunday morning. Anyway it's not about me, it's about my amazing wife who huffed and puffed and pushed until our beautiful bouncing boy came flying through the air at me, having been propelled by a pair of forseps. The outpour of emotion, I'll remember forever yet forgot the details instantly. An hour went pass in a split second and we were back in the room with our son!

Anyway a full breakdown of the events of the last 48 hours will be posted soon, but for now I'm having a beer and going to sleep!

a waiting game

so we called the hospital at midnight and they asked us if clare could feel the baby and she couldn't remember so as a precaution they told up to come in. turns out she was 4 cm dilated and we were definitely in the right place. so I'm sat here at 4am waiting for chick pea to pop out! crikey! Clare's doing amazingly. hope to have more news soon.

it's happening!

well at least we think it is! either that or Clare's having gut wrenching indigestion every 5 minutes. typical for the little one to decide to start this at midnight! more later...

Monday 1 September 2008


While we waiting for one of our scans I read the Clapa newsletter and quarterly mag (last version Christmas 07!), neither of which are very well designed, but interesting all the same. There's a few articles about groups of 'affected' children going abseiling or horse riding or whatever and fund raising which is all quite uplifting. I do fancy doing something for charity for Clapa or the Smile Train and they do bring hope and information to people in the early stages but Clare and I have deliberately stayed away from any sort of parents groups or societies. Mainly because we don't feel that it's necessary going forward; people can't stop themselves telling you about people they know who are perfectly fine now, so why would we want to join a club for people with a birth defect? I think that these things are massively important for people with babies born with something that will affect them forever but a cleft, once sorted, will fade along with memory of it.

I don't want to belittle the 'condition' as it is a big deal and has spoiled the second part of the pregnancy but to me the worry and distress is nearly over, which is crazy when you think it hasn't even begun yet. I remember writing on the first or second blog entry about how weird it was to not be able to get over something which hasn't happened yet. It's actually been true; the last four month have been incredibly difficult and although the news obviously sunk in a long time ago the 'why us?' thought has mostly faded away, it's still there every day. The end I think is in sight and the end isn't the operation but the birth. I have a feeling that whatever the state of the cleft all this ridiculous rhetoric I've been spouting will seem totally unnecessary. I'll wonder why it ever bothered me and what the fuss was all about. Well I hope that's how I feel anyway; maybe a mix of how I feel now and how I want to feel will be more like it. Remember you never get a 100% result as my old man always tells me.

There is a tea party coming up which Ann is organising for parents in the area with kids ranging from not yet born to 2 or 3. Having said that we didn't want to get involved for all the reasons previously discussed, Piet mentioned that these events were the most important part of the whole process. Not for the people who had been going along for ages but for those who were going for the first time. Then the penny dropped. The idea of helping never actually occurred to me, more that I didn't want anymore help. Perhaps when the baby arrives and we've gone through it all we'll realise how important all the help we got was and then perhaps we'll muck in.

The last scan

Today we saw Ms Hutt for the last scan and there's still no build up of liquid which still points to potential good news in terms of the extent of the clefting of the palate, or at least the soft palate. Then we went to the orthodontics department where all the outpatients seem to know each other which might be because they spend a lot of time there. We've definitely seen a lot of that hospital over the last 4 months and for the sake of the car parking fees alone, I'll be glad when can stop going back for a while.

Anyway our original cleft specialist, who came to visit us the very next morning after the 20 week scan (but who hasn't been in touch since((despite having said that she would))) saw us first and then took us into see 'Team Cleft'. They all have their specialist roles, Ann, the community cleft woman, Sue, the orthodontist, Piet the saviour and three others who we didn't talk to but were there. One of them is a clinical psychologist which I believe is to help with the child's self image, bullying and well being etc. These others all looked a bit young to be of any use but what do I know.

Piet knows his onions that's for sure. He's done 140 of these ops, either cleft only, palate only or cleft and palate, every week for the last 5 years. He's definitely our man. There's only been 2 ops which went back for a second go and a lot has happened during his time in terms of how clefts are repaired. It used to be that a few hundred surgeons in the UK repaired cleft lips and palates up until just a few years ago, now there's 2 or 3. They also do other facial surgery as it's all related and staying on top of all areas of the face is good as they are all related and a breakthrough in one area could well affect another. The general feeling is that with only a small handful of very specialist surgeons handling the whole cleft remit for the entire country, the average results are getting better and better.

Babies used to come home with arm restraints to stop them pulling at their stitches a bit like the cliche sketch show with someone with both arms in plaster. Apparently it's no longer necessary for the lip repair which is a relief as I think it would be a bit heartbreaking to see a 3 month old baby restrained in such a way. After the palate repair they still put sock like gloves on (mittens, perhaps?!) just so they can't put their fingers through the newly repaired roof of their mouth.

So that's it, the last time we'll be back at a scheduled time (unless to be induced). The next time should be in rather a hurry to say hello to the one we've all been talking and worrying about for the last 18 weeks! Oblivious to all this, in blissful ignorance, I hope CP has been enjoying him or herself readying for a timely and pain free birth. The baby now weighs 7 pounds with 3 weeks to go so Clare's naturally wincing and hopefully the next growth spurt will be on the outside.

I saw a couple of brand new babies in their Maxi Cosies on the way out of hospital carried by knackered looking Dads ready for their journey to begin and realised that it'll be me next time I walk out. Can't wait!