First Ever Xmas, and Rough Dates for the Palate Operation

“The best of all gifts around any Christmas tree: the presence of a happy family all wrapped up in each other.” ~ Burton Hillis

I remember the first year that I was absolutely certain that Father Christmas was not true, I was 8. That year I also managed to find my presents hidden in the wardrobe of my parents room and tore the corners off each one so I knew what I was getting.

It was the most horrible Xmas ever, I thought for a long time that it was because I had ruined the surprise by stealing a look a my presents. I have never stolen a look at any of my presents since and I'm now 32.

However, despite my deep love for Xmas (I love family & friends and think Xmas is a great time to spend with them all), it has never been the same. The magic was gone, the spark of my childhood was gone and it never made it way back.

That is until last Friday. Josh awoke at 6am, and thus awoke me and his mother, like the little alarm clock he is. I bounced out of bed with a spring in my step, which to be fair I never do, im a very grumpy person before any time in the morning where the clocks little hand points towards any numbers not in double digits.

Anywho bounce out of bed I did, and scooped up JJ and shook the wife. Its CHRISTMAAAAS!!! The magic is back ladies and gents. 

Im not sure if its because of the excitement of JJs first Xmas, or just because he's now around that everything is that little bit more magical, but either way its back.

JJ didnt have a clue what was going on, I mean I'm sure he had noticed the big fuck off tree with twinkly lights and stuff. He even seemed to enjoy it for a few seconds, but then he shoved his fist into his mouth, gurgled a bit to himself and all was forgotten. 

He had tonnes of presents, he enjoyed the wrapping paper more than the presents themselves, as is a little kings want, but it has to be said I have had great fun with his presents. It has never been, and never again will, be acceptable for me to play with a musical singing toy house....for now it is, lets enjoy it!

Anyway, basically we did all the things a little family should do, we ate drunk and were merry, more than merry, downright happy. 

JJ got to be dressed up as Santa and a reindeer, all was well with the world. 


He loves his ball pit and his walker, although he doesnt walk in the walker, he smashes the buttons on the front of it for now, but little steps.

The ball pit was a winner!

We also got a call from the hospital a touch before the Xmas break. Palate operation will be in March, unless there is a cancellation before hand in which case it will be sooner.

Wifey is worried about this one as all the chat on forums and such seem to indicate this operation is a bit of a bugger for the little nipper. 

Me? Yeah a little, but then I was worried before he was born and he proved me wrong, I was worried before about him sucking a bottle and he proved me wrong, I was worried before his lip op and he breezed through it. 

I imagine he will show me just how tough he is and show me yet again, once more that worrying is an exercise in futility. Xmas may be amazing and magical, but not as amazing as the toughness of these little kiddos.

Merry Xmas and a Happy New Year All.

Joshua, looking like Santa, and looking downright awesome.

Dribbling, Spinning, Drooling and Dragging

"If you were to open up a baby's head - and I am not for a moment suggesting that you should, you would find nothing but an enormous drool gland." - Dave Barry

We think the boy is about ready to start teething. I don't know why really, call it one of those parental hunches, spurred on by the fact the boy is dribbling like some sort of inebriated drunk staring at a hog roast.

I think there must be gallons a minute coming from his chops. He is now getting through at least 10 bibs a day, in fact he gets through that many they even have their own little hand washing schedule, we just cant machine wash them all in time.

Every picture I take, requires several re-posings because they all have little strings of baby dribble running from mouth to floor. 

Its now dangerous to lift him above your head. I have had baby spit drop onto my face more times than I care to count now. It happens in slow motion, and 9/10 the dribble finds its way into your own mouth, even though it was miles away before it fell.

In addition to the homing drool, he is ramming his whole fist into his mouth. Its kind of like watching that Anaconda eat the bloke in the snake proof suit, except my son is braver and actually goes through with it.

So yeah, I think its safe to say hes about to start teething.

In fact a lot of things are happening really fast. We have this toy for JJ which is like a mini musical center that he sits in. It has a big piano, glitter ball and "Record Deck" that when you do different things, like spin the big glitter ball, or pull the record players arm, sings out a lovely tune about counting up to three or your "ABC"s or other such balls.

JJ is 6 months old and a few weeks ago he would just sit in it, not doing much, he now spins the ball. Did you hear me? he actually spins it. On his own. Voluntarily.

If you are a parent you will understand the little stupid things you get excited about and this is one of them. He also loves playing with the record player, which requires a "pull". He does that too. The kid's a genius, absolute genius. Mozart, watch out.

X-Factor winner in 2031?

Lastly I think we are truly on the cusp of something great. JJ now has a firm grasp on the "Head up, knees down, whilst on belly" position. Solid as a little rock.

He positions his little legs and pushes into thin air at the moment, but that doesn't deter him. He has figured out that he can grasp the carpet and drag himself about by his hands. He only manages a few inches at a time, but its progress.... the boy is going to be mobile soon. 

He can also stand holding on to something, you have to position him there as he cant get up on his own, but those little legs are solid!

Joshua looking awesome

The Important Bits In-Between

The most important things in life aren't things - Anthony J. D'Angelo

So I have been writing this blog for over 4 months now, and have published many posts. The earlier ones have less views than the first, that is to be expected. In addition, the higher viewed are the posts that are clearly about Joshua's operation, or to do with the pre op assessments.

However, the most viewed post, by a country mile, was the one about strangers and stupid comments.

I think this is a good sign, because it makes sense. This blog was to be my feelings and to share my families cleft experiences with the world, in order to make the readers journey that little bit less worrisome. 

I'm fairly certain if you asked the majority of families of a newly diagnosed cleft babies what the biggest worry is, the operations and other peoples opinions on their child will come top.

But in itself it highlights something that, even though I write about it and document it, I'm still in danger of losing sight of a little. The bits in-between the ops, in-between the assessments and the recovery. The positive comments, not the bad, the encouraging progress, not the setbacks. 

Talking of progress, this is what the boy look like now, 3 weeks after the op:

I promised myself that when I wrote this blog I would be as honest as possible, I've stayed true to that I think. I've laid bare my feelings of worry, but also I've said again and again, that a cleft "isn't that bad". Its something I still stand by. 

Now obviously I'm only 4 months into JJs journey, so I cant be sure, but I'm pretty certain the boy is going to be ok in life, despite his initial "setback".

The reason is, because of the little things in between the "important stuff". I think that is more telling. Now I can only speak for JJ's progress obviously, but this little boy does everything you would expect him to do.

He first smiled at around  6 weeks old, he laughed a few weeks later. He holds his head up when on his tummy. He likes fruit puree, hates butternut squash puree. He cry's, he laughs, gets angry when hes tired, gets excited when he sees his mum first thing in the morning.

He loves his singing ladybird toy, not too fussed about about the expensive bear, but his most favorite thing is a flannel dangled above his head, boy that boy loves the dangling flannel.

He laughs....a lot. Jesus this boy laughs a lot. It makes me laugh, it makes his mum laugh, it makes anyone who hears it laugh. His laugh is infectious in such a good way.

Need the sound on!

He suffers from reflux, and is sick a lot. It makes him shudder and have a little whinge. It makes me and his mum whinge because we have probably only just changed him when he does it. He loves to piddle as soon as the nappy is taken off, he smiles when he successfully piddles on me, its totally planned.

He loves, and I mean loves his changing table. The little dude could sit on it for hours. I would leave him there and watch The Walking Dead In peace, if it wasn't so dangerous. I don't leave him there, because it is dangerous....he hates that.

He cries. Oh my god does this boy cry. Hes so good at crying he can laugh and cry at the same time, its truly amazing to watch.

He loves his mum and thinks she is the best thing in the world, I try to copy the faces she pulls which make him laugh so, and he looks at me like I'm boring. That said, he smiles at me as soon as he sees me every evening after work....he cries shortly after.

Hes trying to get ready for crawling, is doing well with weaning and generally makes my life much better just by being in it. I love him more than I can express.

But more than everything, JJ has a cleft, but he is so much more than just a cleft. I wish I worried less about the one stranger and stupid comment, about the lip assessment and the op. I wish I could worry less about the upcoming palate op.

I would tell us all not to worry about anything in that last paragraph, and try to focus on those great bits in-between more. I wont though because I know its tough......but maybe we should, surely the bits in between are more important to focus on?

Josh Thinks So....

Josh, looking Awesome

Cleft Lip Operation

I’ve never seen a smiling face that was not beautiful. ~Author Unknown

Been a bit absent with the blog posts recently, mainly because the Cockburn household has been exceptionally busy with a certain future leader of the free worlds cleft lip operation and the moments that followed.

Ok so lets get down to it, tell the truth and shame the devil and all that. I was terrified of this operation. Deep pit of stomach churning terrified. The thought of little JJ being knocked out and going under the knife has been nagging at the very front of my man brain since the day his cleft was diagnosed at the 20 week scan.

You know its a somewhat irrational fear, you know its for the best, you know it must be done, but I swear to god there were points where if someone had given me and the wife the option of not doing the operation, we might have said not to.

I was mainly worried about my little dude being in pain after the operation, about how it would affect him eating and affect his general happiness in the weeks after the operation.

But weirdly another huge worry of mine was the fact that we couldn't feed him for 8 hours before the operation time. Now JJ likes his grub, and normally kicks off in a huge way after about 3 hours. The thought of having to force him to go 8 hours made me feel downright cruel, and I had visions of the little man literally screaming me deaf.

But of course, as I am fast learning, Joshua James Ian Cockburn is full of surprises, and is one tough little cookie.

The morning of the operation he didn't even wake up for a night feed, not a peep, not a murmur, He slept right through until we woke him at 5am. Surely he would now kick off? Nope.

That little boy didn't even cry once, until he was due to go down into surgery. And that was only because the operation start was 20 minutes late. Its like he knew.

So there he was, kitted out in his tiny teeny little surgical gown, and I was taking as many pictures as I could of his "wide smile" before it was gone forever. I will tell you now for all those mums and dads whose kiddys operations are looming, or for those whose children are yet to arrive. You will miss that smile.

I remember in the months before Josh was born seeing tonnes of posts about how they missed their child's cleft. I remember thinking how weird that sounded.

Well I get it, I totally and utterly get it. I miss his old smile heaps. Its what made Josh, Josh, and of course I love his new smile, but to me it was just as perfect before as it is now.

Anyway, the nurses came to collect us and we went down into theatre. The surgeons explained that they were going to put him out using gas first, and then anesthetic after we had left.

Now you have probably guessed from my previous posts, I like to think of myself as a bit of a blokey bloke. And blokey blokes don't cry or kick up a fuss.

I think my wife has seen me cry about 4 times in total in our decade of being together......well now its 5.

The sight of the little gas mask going onto his face and his little whimpers as he slowly fell to sleep was too much for me! But that's ok. We are all allowed off days.

We went back upstairs and went for a coffee and some breakfast and after what seemed like an eternity (it was two an a half hours) The wifes phone rang and we went into recovery.

This was the worst part of the whole day. Josh was very much in distress, obviously in pain and absolutely bloody starving. This is what as a parent I noticed first and foremost. I didn't even notice the lip repair for about 10 minutes whilst the wife tried to soothe our baby boy.

Josh eventually calmed down a little, and latched onto a bottle, a few sucks here, a few sucks there, With a little bit of frustration as he tried out his new laughing gear. He sank half the bottle and then stared up at me. That's when I noticed the repair.

These surgeons truly do amazing things.....and I cried a little again.

Josh fell asleep and we took him back upstairs to the ward, and I swear to god when he woke it was like a different child. The little guy was laughing, babbling and most of all smiling. It was his way of telling us he loved his new look.

That was it, Josh was off and nothing was going to stop him, he took back to his feed absolutely as normal, sinking a full 210mls and this trend continued for the full day we were there. He acted like nothing had ever happened.

In fact after the operation the worst episode we have had was a bit of tummy ache, which we are certain was brought on by the Ibuprofen solution, so we stopped giving him that after 3 days.

Josh has been fine, actually more than fine, hes been an incredibly happy little boy. The way he bounced back into his normal self has amazed me. But of course it shouldn't, because Josh continues to allay my fears at practically every turn.

After just over a week this is how it looks

These cleft babies are strong little things, whatever life throws at them they continue to smile. I think we could learn a lot from that.

JJ Looking awesome as ever....

The Date for the First Cleft Operation

Making the decision to have a child is momentous. It is to decide forever to have your heart walking around outside your body ~ Elizabeth Stone.

So there I was, laying on my back, JJ in hands above my body, flying him around like an airplane He looked like he was enjoying it, well as far as a clearly terrified child could. The wife had just spotted this and was about to tell me to land him, before she landed me one when her phone rang.

From what the wife was saying to the unknown person on the other end of the blower, it became quickly apparent that she was being given dates for his lip operation. I had stopped flying Joshua so that I could listen, but had stopped him still in my outstretched arms directly above my face. When a stray bit of baby drool hit me in the eye I brought him back to earth.

The wife walked back in the door.

The Wife: "So that was the dates for his operation, he needs to go in on the....."

The sentence stopped there whilst my wife burst into copious amounts of tears. Then ladies and gentlemen, I did the only thing I could in order to console my clearly bereft wife. I mean there she was, visibly distraught at the fact our son and heir needed to undergo an operation. 

I laughed. I laughed a big belly laugh. 

At the time the thought of my wife crying over something we have known was going to happen for nearly a year was fairly amusing. At the time I thought my wife to be silly. But there again, at the time I was being a bit of a prick.

Now, almost a week after that phone call, I find myself getting very anxious about it all. Whilst I have known that it was going to happen, I had pushed it back in to the pits of my man brain and not really given it much thought as to what it entails.

I had only really thought of the operation itself. All really above board and straight forward. A group of extremely experienced surgeons are going to be doing the operation that they practice every day. I've seen the after pictures of hundreds of cleft babies on the forums I frequent, they all look amazing. Nothing to worry about. The boy wont even remember it.

Just look at this little face! LOVE!

What I didn't think about too much, was the thought of having to watch my child be knocked out, or starving him for 9 hours before the operation, the obvious pain my little champion among men will be in after the event or more to the point how different the little dude will look after the op. I mean he looks just bloody awesome as it is!

Now I find myself thinking about it a lot. I watch him smiling at me and giggling and feel awful about the fact we are going to consent to have him operated on and put in pain, despite the rational behind it. I feel like I am betraying his trust. 

And I would be a liar if I didn't admit its upsetting me the more I think about it. I've said before that Joshua needs the operations that lay ahead of him. Doesn't mean I need to embrace it.

But do it we must, some things in life are for the best, despite the pain they cause at the time. I'm sure if JJ had the ability to decide it would be a 100% yes. So I console myself with that. 

So October the 13th, the Cockburns are ready for you

But by god, Im not ready to lose his "wide" smile.

Joshua looking awesome, as ever

Please do comment below and let me and the wife know about your experiences with your childs ops. it would mean alot to get others experiences on the matter.

Sleeping like a Baby

"People who say they sleep like a baby usually don't have one." - Leo J. Burke

So the other day I was sat around a table with my wife, my best friend and president Obama (who had recently lost the US Election). I cant remember what we were discussing, but it must have been important because I was wearing carrot shaped slippers.

Anyway, I became aware of a really loud siren sounding noise which was getting louder and louder. I was just about to voice my concerns as to what it was when I woke up.

Taking a second or two to get my bearings, I realised that the sound in my dream was the sound of my son and your future king, who was having a bit of a tear up with the wife in the living room. I could hear the wife telling him that he needed to burp, and he wasn't getting another drop until he did. His lordship was most unhappy about such insolence, and was letting the wife know his feelings.

I felt very strange, very odd indeed. I couldn't put my finger on it and I hoped I wasn't coming down with something.

We have a strict bedtime regime with Joshua that we have been imposing for about 8 weeks, which is come 9pm, he must have had his last feed and gets put in his cot. Sometimes he kicks up a fuss and the saga drags on a bit, but by and large he is asleep between 8.30pm - 10pm.

That particular night he had gone to sleep at 9pm and so I had assumed the time would be about 1am, as his first sleep of the night is usually around 4 hours long an then about 2 hours each time thereafter until hes wide awake at 7am.

Looking at the clock, it showed some strange symbol. It looked remarkably like a 6. I blinked a couple of times, rubbed my eyes. Gave my head a wobble. Still looked like a 6.

Now, my wife thinks that I sleep all through the night, right through when he wakes. Truth is I just keep my eyes shut so that I cant be coerced into getting out of bed, and then I read for a bit before I go back to sleep. I have to work, so I need my sleep (that's my excuse and I'm sticking to it goddammit). Anyway, normally I wake all 4-5 times he does in the night.

I hadn't done that this time. I walked into the living room. My wife was burping him looking all happy.

Me: Did he....did he.... has he slept right through until now?
The Wife: Yep

Well, I swear to god, I kissed my wife's forehead, bro-fist bumped Joshua and did a little jig down the corridor. Then I realised I wasn't feeling odd...I was feeling refreshed. Oh the joy! 8 hours of uninterrupted sleep!!

I did what any modern man would do faced with such an amazing news. I immediately Facebooked this achievement. I got 14 likes, all from parents. Yeah, they knew the score, they had been here too.

I don't want to get too excited as it could have been a one off, and in the sleeps since he has not done a full 8 hours, but he is most certainly sleeping for longer. 

Sometimes 6 hours or so. It's bloody brilliant so it is.

Whats more brilliant, is that this is the reason we introduced the routine, and it's working. It's actually paying off. 

My hope is that very soon he will be like his old man: Sleeping 10 hours where possible, with his first thoughts when waking being either "5 more minutes" or "Bacon".

One can dream.....one can only dream.

JJ, Looking bloody downright awesome

Lessons Learned (so far)

Before I got married I had six theories about bringing up children; now I have six children, and no theories. ~John Wilmot

Being a parent is the most fantastic thing in the world, but I'm not going to lie, also one of the hardest, and I'm only 3 months in! You learn more about yourself in the first few months of your child's birth than in all the years preceding it.

There are also things you learn about having a baby that no one ever tells you before hand.

Since JJ has only been future leader of the free world for 3 months I'm no expert, but I do feel I can share some findings with the world:

Tiredness becomes your friend: Within the first few weeks you will be feeling so tired that you will wonder what it ever felt like to be alert. I'm not talking slightly sleepy here, I'm talking, micro napping at your desk, "oh shit I just got caught, better wipe the drool from my lip" knackered.

Tiredness for you becomes a way of life. You get used to it, and if you can't get used to it, you had better learn sharpish. Doesn't seem like a good friend does it? Well its not, but the enemy of my enemy is my friend.....

Tiredness also affects baby. When I want to sleep and see JJ's eyes slowly closing, tiredness is not just my friend, its my ally to be embraced. Trouble is....

Babies don't know that they need to sleep: JJ screams his little baby tits off at almost every opportunity. Sometimes you have no idea why he is using his "WAHHHHHH" to such a great extent. I used to think it was just because he enjoyed seeing Mummy Slave and Daddy Bitch flap and nearly join him in extensive tears, but I have sussed him out.

If there is no reason for him to cry, if his bum is squeaky clean, his belly full and you are in the midst of entertaining him and yet he is still foghorning in your lughole, he is tired.

He cries because he is tired and his little baby brain doesn't realise that to eliminate tiredness he needs to sleep. So the cry/tired cycle continues until his head nearly explodes. There is only one way to get the boy to sleep in this situation.

The Holy Dummy: Before the boy entered this world we were given tonnes of advice from other parents, friends, family, friends with friends that are parents and anyone else that stopped Charlene in the street to feel her bump in a random show of personal space invasion.

One piece of advice that we were given was to never, ever give the child a dummy. Apparently it would cause more trouble than good, he would rely on the dummy so much, that we, as parents would be effectively causing the end of his life and he would turn into a serial killer or something to that effect.

Bollocks.

The dummy is your friend. Use it with gusto. I stuck that rubber comforter in my childs face at the earliest opportunity and have never looked back. All hail the dummy, The holy dummy is king. Death to all unbelievers.

Checking the Nappy: Under no circumstance ever, ever, I mean ever, poke your finger into the side of the nappy to see if your child has soiled itself. Its a crap idea.

Changing the nappy: I cant speak for what it is like for a baby girl, but with boys their anatomy means you will want to keep a wee-wee flannel close by when changing the lad. Because he will wait to wee until you take the nappy off.

This isn't just to clean any accidents up after they happen, its to place strategically over the little mans todger mid-change. 

Well actually you may not want to, watching him piss over his head is quite a sight to behold.

"Well you do get to sleep all day, you only have to do anything when he/she is awake"

In the interest of prolonging the ability for the human race to reproduce and continue its existence, I should share (by experience) that if you are a man, never ever say this to your partner. If she doesn't tear your baby making spheres off she will refuse to speak to you for some time.

She means it too, you selfish, selfish two bob bastard. I mean how could you?

Following that revelation that leads me onto another valid point....

Your partner does more than you believe: Sorry chaps, but at first you will think you are the one doing all the work. You go off to work, come back relieve the missus of the baby, then sleep, then go back to work. So you are basically working all day. You therefore do more than she does right?

Yeah but no. You will think that at first, because your man brain demands you believe that. But there will come a day where you will experience looking after your little bundle of joy for a prolonged period of time......if you don't beg for the working week to start you are a sadist.

Babies are funny: Seriously, I get to laugh at things that were only last socially acceptable to laugh at when I was 6 years old. 

Watching my son grunt and gruff whilst trying to fill his nappy still makes me roar with laughter three months in. Its not so much the noises, but the look of sheer determination on his face, and the eventual look of shock and surprise when he succeeds.

Sometimes the end event shocks him so much, he cries, which is one of the funniest things I have ever seen.

And baby farts. Funny because they are loud and are rapid, like little machine guns.

Buy a formula making machine: If you are bottle feeding, get a formula making machine. Seriously, invest in one now. I wish I had been told this before JJ arrived.

It takes the bottle making process away from one that makes you want to kick a puppy across the room, into one that takes 1 minute. Plus you get to push buttons and stuff. Everyone's a winner.

Seriously get one. Do it now.

Bodily fluids dont phase you anymore: You will spend 10 minutes after your baby is born, trying to avoid bodily fluids at all costs. By the 11th minute you will be so covered in puke, pee and poop you will decide to abandon such attempts.

Resistance is futile.

Your child will accidentally beat you half to death: Turns out that babies don't really have the motor skills one would expect from a human being.

One minute JJ is in my arms, holding his head up on his own like a champion, with his arm draped casually over my shoulder. A sneeze and a twitch later and he has headbutted me in the nose twice, karate chopped my adams apple and kneed me in the chin in one swift movement.

he then giggled just to rub it in....it was an accident right?

It isnt as rewarding as everyone tells you....its better So you will be there, covered in baby sick, one eye permanently shut where baby poked you in the eye 5 minutes ago, whilst frantically trying to find the holy dummy that people told you never to introduce.

At that moment you will smell something offensive and think its a great idea to check the nappy with your finger. You wipe it on your t-shirt because its the only thing within reach, and you have no self respect anymore.

You change the nappy but forget the wee-wee flannel, Baby aims straight for you, you leap to one side only to land on your new formula making machine.

Then baby smiles. 

Everything is all ok with the world.

There are more, but this is a fairly meaty post already.

Please feel free to post your own lessons below, especially anything I will need to know in the near future!

Joshua looking awesome.

Strangers and Stupid Comments

We are all born ignorant, but must work hard to remain stupid - Benjamin Franklin

I knew it was going to happen eventually at some point.

Since the day Joshua was diagnosed at the 20 week scan, the wife and I had both worried about it, talked about it, discussed what we would do when it happened. We knew it would happen... Kind of sad, but given human beings penchant for doing stupid or nasty things it was unavoidable.

This week I heard a comment by a stranger about JJs cleft. Actually I didn't hear it first hand, I heard it from my wife, who heard it from my mother in-law, who had actually heard the bloke say it. But when the wife told me, I felt like I was there and had heard it first hand.

Since I knew this situation was going to happen, and since I had mentally prepared myself for it, I had assured myself I would always remain calm in the face of other peoples stupidity.

I failed at this. I failed miserably.

Not only did I not remain calm, I went a little crazy, you see my wife told me in our living room, alone, miles away and several hours after the offence. The conversation went a little like this:

Wife: So my mum heard someone make a comment about JJ today
Me: Who? What kind of comment
Wife: Some bloke, a few hours ago in Wetherspoons, he turned to his friend and said "Did you just see that babies face, what's wrong with it?"
Me: (turning a funny shade of purple) You what? The little cock juggling prick...... His face? His FACE? My son was born that way pal, what the hell is your excuse you ugly little dickhead, you want to....
Wife: James, hes not here is he? Why are you ranting to no one?
Me: Oh yeah... I dunno.

Unfortunately I am nigh on certain that would have been my reaction if I had heard it first hand. So apart from learning I have deep rooted anger issues and enjoy shouting at thin air, I have also learnt that I'm not nearly as resolved in this department as I need to be.

You see, that comment could have just as easily have been a genuine question rather than a nasty remark. The fact is, that not many people have any experience of cleft lip or palate, and thus asking what it is, is acceptable in my view.

Asking "what is wrong with his face?" is not however. In any way, shape or form, and will clearly result in daddy bitch becoming somewhat irate.

But essentially what I am getting at, is its a very fine line between a real question and somebody saying a stupid, nasty comment.

How do you tell? And if you can tell, what in gods name do you do as a response?

Lets say for example I was there, and didn't go all "Ross Geller with his sandwich" when I heard it, because thought it was a question. Do I turn around and go and educate the person? Do I carry on walking?

No idea.

What if it was an insult? Obviously reacting the way I did in my own living room isn't going to end very well, either for myself, or the other person, so what in gods name do you do?

I don't have the answer yet.

Firstly I want to make it clear to any expectant parents of cleft babies that the above isn't the norm. We have taken Joshua out tonnes of times and the above is the first situation of this kind.

There are people that do double takes when we push him out in his pram, but, in my head at least, that is a normal human reaction, despite how annoying it is at the time.

But 99% of the people that have ever said anything about JJ have been lovely, nice, kind comments. So don't worry.

But throughout mankind's history people have proven themselves to be somewhat stupid, and therefore we need to accept that it is highly likely someone will say something stupid at some point. How we react is up to us, but I genuinely don't have the answer to what that is.

This blog is placed on several cleft forums and thus there are a lot of people out there with more experience than I have. So I would like you to comment below if you have time, and let me know what your feelings on the matter are, and how you might deal/ have dealt with a similar situation before?

In terms of a Joshua update, all I am going to say is that the wife managed to get a smile picture, which made my week. Because its the most stunning smile I have ever seen and needs to be shared with the world!

JJ, Looking awesome.

Thankful for Things (Heart Assessment)

You know, all that really matters is that the people you love are happy and healthy. Everything else is just sprinkles on the sundae. - Paul Walker

So Friday was the day that Joshua had his heart scan. Just in case you missed the post that detailed it, JJ was diagnosed with a heart murmur at his general check up and we needed a heart scan to determine what was causing it.

In regards to his lip assessment, I had spoken to a lot of people at work, my family, and my friends about it. Tried to get their take on it. You know, gauge their reaction, take stock of the situation, use people as a soundboard for my own feelings. Take their positive messages and feel better about the upcoming scan.

In regards to the heart scan, I told people it was happening and then didn't bring it up again. I buried it deep inside and tried to even forget it was happening. This scared me. It wasn't something cosmetic, it was potentially something that could impact Joshua's health and well-being in a serious and scary way.

I'm not a godly man. In fact I don't really believe there is one. 

But there I was, in the days before the scan, in my head praying to a god i didn't believe in. That's right. There I was, at night, in-my-head-requesting to a deity i have never asked before, to help me and mine out. Maybe deep down I do believe in a higher power, or maybe I'm just a hypocrite.

I have experiences of scans. At the 20 pregnancy week scan the nurse had flown by all the checks of head, heart, lungs, brain etc. whilst talking to us throughout. Until, that is she did the scan on his face.

At the point of scanning his face, her smile disappeared and she went quiet. I looked around the room at my wife, mother and mother-in-law and all three had the same look of worry as i did. The nurse then turned round and told us she thought he had a cleft and was going to get a consultant to have a look. 

I knew the signs to look for.

At the heart scan, we were called into the scanning room and the nurse applied the same device to Joshua as they did to my wife at the 20 week scan. It immediately found the heart and I found myself momentarily mesmerized at the sight of it beating away.

There was no smile. The nurse didn't speak. Neither did me or my wife.

Both of us wanted to ask the question "is it ok"? I know I did, and Im positive my wife did, but the nurses reaction made us both think we were not going to like the answer.

So we waited for, I would guess about 5 minutes, it felt like an hour. I think it was at the point that both my wife and I had leaned so far forward that our noses were almost touching the display (you know because we needed to see clearly before, we, ourselves made a diagnosis?) that the nurse noticed our distress and said "oh im sorry, you look worried, there doesn't seem to be anything wrong at all. Perfectly healthy".

I could have simultaneously kissed her and headbutted her in the face.

Turns out Joshuas heart has a tiny, teeny, itty bitty hole about 1mm in size. The majority of babies do and it closes on its own. The boy is, and will be fine. Hand on heart the best news i have ever, ever heard.

So thats all there is on that. We now wait until we get a letter for JJs first operation, it should be earlier than Xmas now that he has been given the all clear.

In terms of Joshua himself, his lordship and the future leader of the world has learned how to whinge. Not cry. Whinge.

I am absolutely positive that he has noticed that when he makes his "WAHHHHH" happen, that daddy bitch and mummy slave come running with cuddles and/or food. I'm absolutely convinced he has figured this out.

Being a clever little baby he now uses his "WAHHHH" at opportune times. Like, lets say, if you stop bouncing him for more than one second, or if you take the bottle out of his mouth for two seconds to clean his chin, or if you......actually he just uses it a lot.

Im sure all babies do this. And this, ladies and gents, is what separates the men from the ladies. I have the resolve to deal with a screaming baby for what seems like days. In reality the male of the species kids itself that this is the case, but in all actuality is counting the time in which he passes screaming baby to his partner.

Being a bloke I can also report that you believe you get less sleep than your partner, because you know, you are the man, and you work and stuff, and you have the inability to sleep at said workplace. Whilst the wife wiles away her maternity leave playing with baby, and sleeping when he does.

It was a bank holiday this weekend in the UK. Joshua "whinged" for the majority and thus I slept less than a pro-plus junkie on an all nighter. I pined for the working week to start.

All of this is a learning process. I learned the wife does a lot more than me. And tonnes more than I realised. I just write about it.

So I'm really thankful. Both to higher power I don't believe in, and the one I'm married to.

The wife and the boy....looking awesome

Laughter and Little Moments

"The first time your laughter unfurled its wings in the wind, we knew that the world would never be the same" - Brian Andreas. 

This Brian chap knew what he was talking about when he said that.

I heard JJ let out a little giggle for the first time this week. Its a feeling I cant describe. A laugh like I have never made came out of my mouth in return, whilst I looked around frantically for my wife (Who was making a shopping list at the time) to see if she heard. She didn't unfortunately. Damn Asda to hell!  

I sat there and tried to make him giggle again, but trouble was I don't even know what it was that made him giggle in the first place, so after 10 minutes JJ got bored of daddy pulling funny faces and stealing his nose and began to cry. 10 minutes is a long time in a babies world I am learning.

But that was it, one little moment. One little moment of a constant barrage of little moments that happen on a daily basis. Whether it is the boy holding himself up on his arms for a few seconds as I lie him down, or swiping his hand on the bottle to move it out of his mouth, the sound he makes when he is really hungry and latches onto a bottle (he reminds me of Gizmo from the Gremlins fame), Joshua voluntarily latching his hand onto my fingers, his vague attempts at making crawling motions, or my personal favorite, when he started sucking my nose. Little moments are everywhere.

All parents get the joys of these little moments, whether they notice them or not is up to them. It would be all too easy to ignore these "firsts" and concentrate on the obvious worries and complications that come with a baby with a cleft. Since the day he was diagnosed at 20 weeks old, I promised myself that I would try to never do that. I'm a positive person, I always try to see a glass half full (Its not my round then). I assured myself that this would be no different. I have stayed true to my word so far. This whole experience is too valuable to miss one single part.

As a parent of a child with a cleft it is far too easy to get caught up in the worry of operations, assessments, choking episodes, reflux and feeding complications. When actually, my thought on the matter is that it "is only a cleft".

Its not that bad, I genuinely don't think it is. And for most of us, we need to be thankful that we live in a country in which the medical facilities are such, that we can, and should, have that attitude as some are not so fortunate.

I'm not saying that we shouldn't get angry about the very rare double takes of strangers, worry about operations, about their future speech, about the prospects of the way other children might be cruel, we are parents, its our job. Im also not saying that we should just dismiss our childrens ailments as "nothing", they are of course deeply impactful on their own lives and ours.

I'm just saying that JJ is a child that has a cleft, but everything about him isn't just the cleft. I want him to grow up knowing that. I want him to be confident and happy in his own skin, and he wont do that if me and the wife treat him like he is different to any other little boy. 

I want him to smile and laugh and enjoy his own lifes little moments and I'm determined to make that happen. Cleft or no cleft.

There will be days where I feel anxious, and days where I wonder "Why JJ"? Days where I think its unfair, and days where I wish he could sleep a full 3 hours without being woken by reflux caused by his palate. Thats cool, I can deal with that. Im a dad now, worry and stress comes with the territory, cleft baby or no.

But having a child is the best thing that has ever happened to me in my life, it is without a doubt the single best feeling ever. I don't want to lose sight of that.

So I enjoy the little moments and JJ suggests everyone else does too.

First Cleft Assessment

Tuesday of this week was his Lordships first assessment of the cleft variety. I had remained relatively calm over the weekend and Monday, but by Tuesday morning I was a bag of nerves.

My one big worry was that JJs upcoming heart scan (22nd August - I remembered whoo hoo!) would put the mockers on the whole ball game, and play would be postponed for quite a while. So up at the crack of birdshit me and the wife got, ready to make our way to St Guys and Thomas' hospital for our 9am appointment.

We went by cab, with a really cheerful cabbie (read miserable bastard) and JJ slept for the whole way, except for a slight moment, when he fulfilled his current fave hobby of eating. This was quite a result. Things were looking good.

When we entered the room, there were 5 people there. The cleft surgeon who will operate on Josh, his future speech therapist, his cleft nurse, a registrar and some 12 year old bird on work experience......well she looked about 12, I'm sure she wasn't. All of these people (except work experience girl) will be his cleft team, hopefully for the majority of Joshuas life up until he is 18, but at the very least its the team for the foreseeable future.

Its upon walking into a room of all these professionals that I got the first proper realisation of how big this job is. Its a long term plan, with long term goals and nothing is going to be done overnight. It feels quite daunting to think of it that way.

So what was the consensus? Well, the cleft surgeon had to wake Josh up and have a ferret around his mouth, which it has to be said, Josh was more than upset about. It appears he doesn't like people poking about in his gob, who'd have thought it?

But other than that, the resulting conversation was fairly good. Joshua actually has a bi-lateral cleft of the lip, which just means a cleft on both sides. Previously we were told it was unilateral.

He has the incomplete cleft of the right hand side, and what is called a microform cleft of the left hand side. You have surely noticed the cleft of the right, but probably missed the microform, it basically looks like a scar (as for all intents and purposes that's exactly what it is). In the pic below you can see it clearly.

He also has a cleft of the gum on the right hand side only, although this is slight. As we suspected he also has a full cleft of the soft palate, with a very small, teeny, tiny cleft of the hard palate adjoining the soft. So the back of the roof of his mouth is essentially open in two parts.

You know that dangly bit at the back of your throat? Well that, my friends is called your Uvula, Google says so. Josh has two of them, (Well, one in two halves), one on the right hand side, and one on the left. Cool as penguin piss it is!

As previously mentioned JJ hates mouth ferreting, so below is the best pic I could get, when he was yawning!

The surgeon expects Josh to have surgery to fix the right hand side incomplete cleft before Xmas at the very latest. He expects this to be fairly straightforward, and he is confident of a good result. He wants to leave the microform alone for the time being, as there is no point in swapping a scar for a scar, but may want to do do some revision on it in the future if it gets any bigger as JJs face grows.

He was also confident that the gum notch is that slight, that JJ has fairly good chance of his teeth being minimally affected, but will look closer when he does the lip repair.

The palate repair will happen about 3 months after the lip repair. There is a 50/50 chance that after the operation Joshua will need speech therapy to help him pronounce B's G's D's T's etc, and after that a further 25% chance that he will need further palate operation to help with his speech further.

That was it. That's all we know up until the heart scan on the 22nd, after which, dependent upon the diagnosis we will get an early or later date for the op.

So how do I feel about it all? Well as far as clefts go, Joshua has an unusual combination, but the fact is, he actually has very mild clefts and thus the operations to fix them have a higher probability of garnering better results. So I'm quite upbeat about the whole thing, as is the wife. Lets just see what Friday brings and then we should have a much clearer picture of the situation.

My latest fave photo of the little dude. I will try to do a blog mid week, as the one on Friday will obviously be about the heart scan, so will try for a more fatherly one before then - I think the medical ones, ironically, make for harder reading!

The Blog

This blog has been somewhat of a success really. It has had nearly 800 unique page views since I started 6 weeks ago, much more than I suspected. Viewers from America and UK mainly, but some from Australia, France and Germany too. I have actually received a personal message from another dad who wanted to thank me for writing it as its helping him prepare for the birth of his cleft baby, which really meant a lot.

To help me out, if you enjoy the blog, I would just ask that you give it a little "like" on Facebook below, or +1 for Google+. If you feel like leaving any comments, if you could make them below. It all helps with the Google rankings, and if this blog could be of use to a few more parents, even a little bit, that would be awesome.

Thanks for reading.