8 Months Post Palate Operation

My son's the most precious thing to me; he's changed me from being selfish to selfless - Ricardo Antonio Chaveria

Been a long time since my last post, that's partly due to an error on my side (i wrote a post after the palate op, but didn't click "publish") and also because I've been frantically busy with a walking talking, getting into everything young man!

So, the operation. It was a total success, so much so that Josh doesn't need to see anyone for another 2 years.

The immediate aftermath was a bit less pleasant. JJ certainly felt this op more and was very uncomfortable for a few days after, and also it threw out his sleeping massively. I'm afraid something he hasn't fully slipped back into.

Pre-op Josh was sleeping a solid 8 hrs a night right through. Immediately after he was about an hour a time before waking (urgghhhh me and the wife nearly died!), and even now he hasn't settled into a proper sleeping routine.

That said, we do have a very happy little boy when he is awake, who now, on top of walking and running fully (from 9 months old), now says several words. And these are:

"Bye bye"

"Mumma"

"Dada"

"Pear"

And of course "poo"

There is practically no difference at this stage between our son and any other child of his age, apart from a small scar visable on his lip.

That and the fact Josh is for some reason a giant baby, and towers a head above any other child his age. But I dont think that is cleft related. More to do with his dad's strong man genes I would guess....he also loves kicking a football, and as anyone that went to school with me will tell you, being sporty 100% comes from me. 

Cough, cough, dodges lightning, cough.

I promised this blog would be honest, and I hope I have been. I also hope this series of posts has helped at least a few people for theirs and their child's cleft journey.

I doubt I will post much more after this except for important cleft related updates much further down the line. As much as I love writing about the boy and how he is developing as a little man that wasn't the blogs aim.

If in the meantime between posts anyone would like to ask any questions, to me, or the wife, please do and we will be happy to answer.

Otherwise, enjoy your little one and please, try not to worry......It's only a cleft.....and me and JJ promise, it will be fine.

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