Return from normal

 I will keep this as brief as I can, knowing that going from no posts to full on novella would be irritating as hell.

Hello. Im back.

In actual point if fact I never really went away, but living with a cleft child becomes so normal especially after the surgeries and check ups and everything, that you forget that all the additional incidental things like audiologists, speech and language therapists, dentists and potentially additional help in schools are all part of the journey you were signed up to when that scan happened so long ago.

I have lots to tell you about that I should have told you at the time, and for that I am sorry.  I'll endeavour to catch you up and look forward to hearing how your little ones are getting on.

Much love

A

An Anniversary

A year ago today, this happened....

It seems both a lifetime ago, and just like yesterday. I'll be honest and say that I dont remember a huge ammount of the day. I think I was running on Adreneline.

I remember calling up before we left to check they still wanted us. They didnt have a bed but were hopeful so told us to come anyway.

I remember playing sonic the hedgehog with Mr CD while H slept. 

I remember taking him to theatre. He did NOT want to give in to the anesthetic and fought it like a tiger.

I remember seeing his face for the first time, some how rounder than it was when i'd left him a couple of hours previously.

That's about all I remember of the day. I do, however, remember every sodding thing of the night, and for the 20+ nights that followed. Something in that anaesthetic knocked the sleep out of him, and it took us weeks to get it back.

Thinking about it now its a strange mix of pride and sadness. He is doing really well - so well infact that I have struggled with what to blog about. There isnt much interest in nothing at all. Its the sadness that I struggle with. I must stress that he is fine - day to day you wouldnt know he had had a cleft. But deep down is a latent sadness of what he had to endure and what is still to come. 

I have recently come to the realisation that the sadness I feel isnt actually a feeling, but a memory of the feeling. The fear and uncertainty was so strong that a part of it is embedded in my brain. I am used to it now and it is so deep down that I don't usually notice it. Its only when I think about it too much - so I try not to.

I didn't really mean for this to turn into a sad post. I'm not sad, I am just aware that if I feel these things then others probably do too. Its ok to feel and to remember how you felt, and it is ok to acknowledge it.

H is great. He is walking and vocalising (and singing, oddly). We are expecting an appointment with Speech and Language in the new year which will be interesting. Otherwise, as I said, not much to report.

Reflections on a year passed

This time 12 months ago I was 12 hours into my secret induction.

Well, I say secret. I let a few people know I was going in (Mr CD for example) but I didn't advertise the fact. I was messaging friends as if I was at home, telling them I was watching the Olympics and that L was with his Nan. It was all true, apart from the being at home bit.

By this point in proceedings Mum had arrived with a care package of food because the ward food was dreadful, and I was tucking into my first of 8 or more Chicken and Chorizo sandwiches that I would have before discharge in 5 days time. On subsequent days I would message food orders to visiting family asking them to bring me something edible.

I was still quite upbeat and laid back about the whole thing. The sense of humour failure would hit the following day when they wanted to give my body a rest of 12-18 hours between induction attempts. I sobbed. Actually sobbing isn't the word. I howled. I just needed it over and the pent up fear I had been trying to keep a lid on came pouring out. They only left me 6 hours in the end.

Looking back on this year I have been amazed at how quickly it has gone. I know that everyone says that but its true. Its been a constant whir of dealing with the next thing and (purposefully) never looking at the bigger picture. Its when you look at the bigger picture that the enormity hits you and sometimes you don't want to know. Its all about little victories.

That is all behind us though, for now at least. At H's post op appointment, the nurses were delighted with him and we are cautiously optimistic. Although we can't see the operation site (H is a biter), we have no reason to think it hasn't healed well.

The next stage of the journey will begin in September where we will meet specialists in other areas such and speech and language and dentistry. These are people I suspect that we will get to know very well over the coming years. As for now we are going to celebrate our boy's 1st birthday on Friday, enjoy a well earned week away next week and will see what September brings.

Thank you for being there and reading over the last year. It's lovely to speak to you all.

End of an Era

Its a very quick post today, but one I felt I needed to do. Mr CD and I are going out this afternoon, with Saint Mum kindly offering to have the kids. Its been a standard frantic Saturday with me trying to catch up on a week of neglected housework. I decided that the tops needed clearing, especially the bottle making station we have. H is now only having one a day and not even from a bottle, so it was taking up space that I could really do with.

I was harsh, I was strict, and it all went in the bin and I didn't think anything more about it, until I went to put something else in the bin 10 minutes later.

There they were. The bottles we've had for nearly a year. The ones we struggled with, swore at and eventually got our heads round. And those teats which I swore at at least 3 times a day for leaking or spurting out of the valve and over the wall. The splatter patterns on some of our walls look like an episode of CSI.

It hit me that he doesn't need them any more. His palate is fixed, he can form a seal with his mouth and suck. My cleft baby is very much not a baby any more.

I took a bottle out of the bin, washed and sterilised it and put it at the back of the cupboard. One day I will find it and remember. One day I will show H. That day will come around very quickly, I know that now.

I'm not sure why I feel odd about it, but I do.

Ok?

This time next week it will be all over.

Hopefully.

Or will it?

Probably not.

Leaving aside unavoidable cancellations, this time next week H will be back from surgery on his soft palate and on the ward. People have been asking how I am feeling about it and my honest answer is that I don't know. Haven't a clue. What I am feeling changes so often it is somehow undefinable.

Am I scared? No.

Am I worried? Not really.

What then? I wish I knew.

Since coming back from holiday last Sunday I have felt unsettled. Nothing I could put my finger on exactly, but I found it hard to concentrate or be around people generally. The feeling increased throughout the week, especially in work, until today I started to force myself to be social. I didn't find it this difficult at the weekend, maybe I didn't have the thinking space.

I maintain that I am not scared or worried. H will be wonderfully looked after and will be fine, I know that. The best way I can describe it is a wish that we didn't have to do this any more. I understand how childish that must sound but its true. I wish we didn't have to. Its like a shadow following me around, the regret that H has to go through something else at a time when he is so happy and growing so beautifully. He is happy as he is. His three favourite things in life (eating, sucking his thumb, teething toys) will be severely restricted for the next few weeks. I remember the pain he was in last time, and although I am confident he wont be like that again, I still remember. Although the operation will be over, the recovery will not be. Maybe that is what I am dreading - the recovery.

There is also the guilt. Not just knowing that I am 'consenting' to this pain, but the other guilt I have - knowing that I can't imagine what some families in that hospital are going through. It feels wrong to feel like this about a relatively minor op. But I do.

We have a pre-op appointment by telephone tomorrow, and then I will start making a list of things I need to get. Socks for hands. Calpol. Gin. Caffeine to get me through the next few weeks if he stops sleeping again (what DO they put in anaesthetics these days?) Its one thing being a parental zombie all day, but quite another if you have to work through it.

He'll be ok.
I'll be ok.
We will all be ok.

But its ok not to be ok all the time and today no matter how I try to hide it, today, I'm not ok.

It takes a village - Cleft Awareness Week

You never know how many people are affected by something until you are. All around the world, people are connected by common experience, putting friends in touch with friends who can give advice or comfort. It's from these connections, these strands of knowledge and empathy running through humanity, that great things can happen. I don't necessarily mean world peace, or the elimination of hunger (although that would be lovely), but people who thought themselves alone in an experience can find that they are not. That someone knows what they are going through, have been through it themselves, and can offer advice on what worked for them, is a powerful thing.

A saying that is often bandied about, usually by politicians trying to prove a point, is that "it takes a village to raise a child". I think that is true, although instead of the advice coming from the local wise woman and village elders, it comes from friends of friends or groups and connections online.

When we first found out about H's cleft, we didn't have a bloody clue. The first thing we both thought was 'hair lip.' That isn't the right phrase for it, but we didn't know. We'd never really heard of anyone having a 'hair lip' except one girl in high school who we'd rather not have thought about.

Except we were wrong. We knew lots of people who had been affected by cleft lip and palate. Maybe not directly or closely, but they were there. A second cousin of mine. 2 students at the school my brother taught at. 1 at the school his girlfriend taught at. 2 in a colleague's family. The granddaughter of a colleague of my mother in law. Suddenly, within a week or two, we had the email addresses or facebook details of half a dozen people who had been there and wanted to help two expectant parents who were scared out of their minds.

The wonderful thing about organisations such as CLAPA is the network of reassurance they supply. The 'cleft community' (for want of a better phrase) are without exception the kindest, most welcoming, least judgmental community online. Everyone is so supportive and there is none of the 'mumsnet-y' judgemental rubbish that seems to accompany every parenting opinion online. You are all awesome. Give yourself a pat on the back.

It is important to celebrate all that we, as a 'village' do right, I think we also need to shout from the rooftops about what we are doing. 1 in 700 births are affected by a cleft.

That's 8 in my village.
836 in my county.
129 in a capacity Wembley Stadium
Even 2 in my place of work.

That is a lot of people and yet, judging by the comments on ITV's 'Benidorm' this week, it's still a very misunderstood condition.

We are all proud of our kids for what they have been through, our kids are bad ass. They are strong and stoic because its all they have known. It's harder for us as parents and families because we know what could have been. We see what our children go through and we need the support because we know it's not like this for every child.

That's where our 'village' comes in.

We need to be the people supporting the new diagnosis. We need to be the people supporting families who aren't as far along the road as we are, but we also need to be the people talking and educating everyone else so that when their friend goes "my baby has been diagnosed with a cleft" they can reply "I know someone who had that, don't be scared. Talk to them"

1 Year On

Things may have seemed quite quiet from us since I last posted (shock horror) at the end of January. The truth is, like any family with kids, it's never really quiet. If I can't hear someone singing/shouting/crying then something is very badly wrong and my eldest is up to something he shouldn't be. That's just life. Silence isn't golden anymore - it's suspicious.

There has been a mixture of reasons for the drop in posts. Partly it is because I have returned to work and so am trying to squeeze a days worth of chores and parenting into 2 hours of an evening, but mostly it's because there genuinely isn't much to report. We have a couple of months until H's palate op so I have stopped stressing and am taking things as they come.

The weaning is going really well, he loves his food and we are starting to make things more textured for him. Hes not really into finger food yet, but it's coming. He is still on a bottle but Mr CD and I made the semi conscious decision to give the sippy cups a rest for a few weeks and come back to them when he's a bit more confident. I think we are at that stage now.

So, you may reasonably ask, why is there a post today. Well, I think the title says it all.

The day this post goes up, Thursday 23rd March, marks one year since our cleft diagnosis. One year since my husband, mother in law and I were sat in the tiny scan room and the sonographer said "I think I can see something".

I am writing this two days in advance, so I can't tell you how I feel today. Generally, I am feeling contemplative. We have been very lucky with the advice and support and the care we have had. We are lucky that it is 'just' a cleft. At my brief time at BCH I saw children who were much sicker, whose parents were trying to hide their grief for the pain their child was going through, and that they could do nothing to alleviate it. We are lucky.

But...

The memory of the fear is still there. The memory of the searing pain of not knowing, the anxiety, the sickness. It's all still there, buried deep down. I remember the pain of that Easter weekend more vividly than I remember the pain of labour.

I don't talk about it much because I feel like a fraud. Who am I to still feel these things? H is a happy and healthy little boy. The first operation was a success and I have every confidence the second one will be too. Who the hell am I to still feel sad sometimes.

But I do.

Sometimes I wake up at night gripped with the sickness and fear that kept me awake those first few weeks. I have to remind myself that H is here, that the fear is gone - or at least should be.

I try not to think about the future. About dentists, and speech therapists and more operations. About school and other children and their reaction to my brave little boy, who genuinely only stops smiling to eat. I don't want to think about things I cannot control

A picture that kept me going throughout the pregnancy showed the silhouette of Hagrid, the Hogwarts gamekeeper, with the quote "What's coming will come, and we'll meet it when it does". I try to keep to that as much as I can.

I don't want this to sound maudlin - it's not meant to be. It has taken a lot of thinking and accepting for me to admit that the pain is still there. The fear and anxiety was so much that I think it will take more than a year to recede.

So contemplative it is. I actually think that I will feel it more around Easter because that was what was happening in our family and community while we waited. And waited. And waited. Easter will always be linked with that feeling of pain, uncertainty and fear for me. Even if I don't feel it, I will remember it.

Deadlines

“I love deadlines. I love the whooshing noise they make as they go by.” - Douglas Adams

I like a deadline. They give me something to work towards, something to aim for. When I have a deadline I can plan accordingly. I like counting down to things so that I can quantify the time I have left to prepare.

For example I can tell you that its 19 days until I go away with Mr CD. 41 days until I turn 30, 107 days until I go with L to see Harry Potter accompanied by a live orchestra and that its 10 days until H's next appointment at BCH. 

Baby Led Weaning

The appointment itself holds no fear for me - its just a standard Cleft Clinic appointment. We will see the nurse and H's consultant and see how we are getting on. It is then we will get the date for H's palate op. This is what is bothering me. I am trying to wean H to an indeterminate deadline. 

Over the last week I have posted some videos to the Facebook page showing me feeding H, and from them I think you can guess the constant swings and roundabouts this had become.

Last weekend went something like this:

Friday: Ate masses of broccoli. Loads of it. Couldn't get enough.

Post Raspberry:
A cute little ball of fuzz & a rabbit.

Saturday: Wouldn't eat broccoli. Or Sweet Potato. It was like I was trying to poison him.

Sunday: Carrots. The old faithful.  Not now though - not interested then tried a bit and choked on them.

Monday: Carrots again. Screamed. Apples: 5 spoons then screamed. Then proceeded to sneeze most of those 5 spoonfuls out of his nose.

Since then, he has been eating the purees a lot better. He does seem to prefer the pouches but, at the moment, I am just pleased he is eating. As the purees have been going down better I have been trying him on other things, whole raspberries in a weaning net and porridge for him to play with in a nod to *shudder* baby led weaning. Not too much went on the dog so I'm calling that a win.


No, the puree thing is going okay now. What we are still struggling with is the whole 'milk in a sippy cup' thing. He just isn't interested beyond a few sips. I think our record is 10ml. I can't say I blame him if I'm honest, just the feel of the mouth piece bouncing against his gum notch gives me the shivers - its like grinding teeth.

So, you see my problem. We will go to this appointment and they will ask how the weaning is going and I will shrug my shoulders and say "I have no idea." And as the weaning is integral to his next operation, it makes me nervous. They could turn around and ask to operate within a couple of weeks - I doubt they will but I am an inveterate planner, and not having a fixed deadline is concerning me.

First thing on Monday I will call the cleft team for some advice. We should be further on with the cup than we are for 4 weeks in.

So, that's where we are. I would be interested to hear what free-flow cups you use for weaning and if you are having any more luck.

Octopus

Happy New Year!

I have tried to write an update several times over the last few weeks, but have always come to a stuttering halt around the second paragraph. Not being a writer, I can hardly call it writers block so I've gone with bloggers block - although that does have the disadvantage of sounding like a drainage issue.

I think the main reason I have been struggling to write anything is that I have been, to put it mildly, fecking knackered. I don't know what they put in anaesthetics these days but whatever it is did something to H's sleep pattern that I am only now breaking him out of. I'm not a superstitious person, but I did go hug a tree on typing that. Please God let me not have put the clappers on it!

Christmas is always a busy time in our house. Aside from the general merriment of the season it is my elder son's birthday just before new year so he has been doubly excited and Mr CD and I have been doubly busy.

H is now completely healed - a little red but it just looks like he has a cold. His lip has now started to hitch up slightly so we are trying to massage his lip daily to break down the scar tissue. This has turned out to be a lot trickier than I had expected. You need to make small circular motions rubbing down the scar line, pressing firmly. This is all well and good in theory, but the scar is smaller than the finger you are using to rub it so you find your finger falling off the lip before you've done much rubbing at all. Add to that a baby who does NOT want to have his face touched in that way and it's like trying to put a wetsuit on an octopus.

The other big change is that we have started weaning. This is not going so well. We have been trying twice a day and used various food and textures but he still isn't keen. I think he quite likes the food but doesn't like the spoon. I know that sounds mad, but once the food is in his mouth hes quite happy, but when that spoon gets near him its like trying to force a snorkel into the wetsuited octopus's mouth. It doesn't matter what spoon I use, he isn't having any of it. A couple of other parents have suggested 'baby led weaning'. I'll be honest I'm not entirely sure what that is, but the look of horror on my friend's face when she mentioned it means that I know I'm not going to like it. I am seeing our Cleft Nurse next week so I'll talk it through with her.

I am trying not to get too disheartened with the weaning. We've only been trying for a few days and H is only 21 weeks. As much as I believe you shouldn't compare your children, my elder child was so ready to go onto solids at 6 months that he picked it up fairly quickly. I am also aware of time looming. I had aimed to get him pretty much weaned by February half term as his next operation is due around March. I think the 'deadline' is weighing on my mind, even though its a self imposed. Its as much about managing my own expectations as anything else.

Keep an eye on facebook and twitter for weaning updates. I am also now on instagram @Cleft_Diary.

Op + 2

Firstly, a huge thank you to you all for your messages of support and love. I know I have been rubbish in replying to you all, but I have read every single one of them and they have helped immensely.

Since coming home yesterday H has been doing really well. He struggles to eat only if the pain relief is wearing off so we try and work around it. Last night was disturbed but not as bad as the night before. I am hoping tonight will be better still.

Funny thing just happened. I was flipping through my phone and came across a photo of H from a couple of weeks ago. It was only 2 days ago he looked like that, but it was a bit of a shock to see how big the cleft was. I'm not sure why I was shocked, I'm just surprised that I was. I sent the photo to a friend and she, unbidden, said exactly the same thing so I know it's not just me. It's amazing how quickly you forget.

I'll do a full blog about the op day when I get a bit more time. For now though I'm going to try and relax with Mr CD. If you're going to the CLAPA West Midlands Christmas Party on Saturday I hope you have a wonderful time. We can't be there sadly, but will try next year. If you are local to Warwick, Happy Faces is on tomorrow. I'll see you there!

Smile

Last weekend was sponsored by Day Nurse and Dettol. Starting on Friday I managed to develop a heavy cold and my eldest spent Sunday battling a horrid sickness bug. This was not what we needed with less than 10 days until the operation. Skip forward to today and things are much better. Thanks to quarantining and liberal quantities of alcohol gel, we seem to have managed to keep H and the bugs separate. If we can keep this up until Tuesday then we will be happy.

Lots of people have been asking me how I am in the run up to the operation, and the honest answer has been 'fine'. I haven't been worried about it, or dreading it. In fact, in a perverse way, I have been slightly looking forward to it. Or if not looking forward to it, looking forward to getting it over with and putting it behind us. Its something we have been talking about for months and it feels like its time has come.

The last couple of days, however, I've had a new feeling. Its hard to explain what the feeling is, only what it isn't. It isn't fear. I am not scared for H, he will be in excellent hands, and although he will be in pain afterwards and that will be horrible he will be given painkillers so he can be comfortable. It's not apprehension, or worry. The closest thing I can get to it is sadness.

I'm sad because I'm going to miss him. Miss him as he is now, with his cleft making his wide smile that much wider. Miss him sticking his tongue through the gap in his gum when he's hungry. I'm going to miss the little boy he is. All babies grow up and change, but they do so gradually. This change will be big and sudden, and I'm not sure I'm ready for it. Then again I'm not sure you are ever ready for your child to change and grow. It tends to happen when you aren't looking.

I know this is for the best, that it needs to be done. I know that the surgeons will do an excellent job and that in a few weeks/months/years you may never know there was a cleft there. But that cleft is part of who H is, and its a part of him I will miss very much. I never thought I would feel this way but I do. I am looking forward to seeing what he will look like, but I will miss him for what he is now more than I can say.


 _________________________________________________________________________________

After many conversations with Mr CD we have decided to 'live tweet' the day on the twitter & facebook to give a true account of our experiences on the day. You can follow us on @cleft_diary or https://www.facebook.com/CleftDiary - #HCleftOp

Countdown

Tuesday of this week was an important day in our house in a couple of respects. Firstly it was my brothers birthday, but before you go thinking how lovely it is that I hold that day in such esteem you should know its less about the anniversary of his impinging on my status as only child, and more about that now it's out of the way I am allowed to get excited for Christmas. More importantly however, at least for the purposes of this blog, it marks 2 weeks until H's operation.

I genuinely cannot believe how quickly this has come around. The last 15 weeks have been a blur and I cant quite believe we have already passed on the first batch of clothes to pregnant friends. The rocking crib is up for sale, and H's personality is shining through. He is a very smiley boy and loves to play and be sung to. He has also started giggling over the last couple of weeks which is lovely, although he mainly giggles for his dad. His dad says its because he is funnier. I say its because he looks funnier.

The reflux has once again settled. He still has some but not so much he can't deal with it. He is back on the higher dose of Gaviscon and seems to be coping with it well although we do have laxatives on standby just in case.

Thank you for all your lovely messages wishing me well for my PND and my husband well for my constant singing of Evita. That particular obsession only lasted 5 days by which time I think Mr CleftDiary was ready to beat Andrew Lloyd-Webber with a hammer - moods are funny thing. I went from there to another obsession which needed headphones as it involved swearing. This had the added benefit of being much quieter. I am fine though, I caught it early and am feeling back to my normal(?) self.

No?

Well ok, moving on!

If you 'like' the page on facebook (and if not, why not!) you will have seen that last week was full of appointments. On Tuesday H had a scan on his kidneys, this involved having some dye injected through a cannula in his hand. Despite the nurses insistence that H would scream but it would be ok, he barely woke up. He was, however, wide awake while being scanned. This could have been an issue as he had to be very still for them to get the information they needed. He was brilliant though and stayed as still as you could possibly expect a baby to be. This made him the darling of the department as you can imagine.

Wednesday saw a return to BCH for the cleft clinic and pre-op. We were given plenty of information about what to bring, where to go and what would happen on the day. After the appointment we went and had a good nosey around. We found the play and admission centre and had a look around. It has an outdoor area, loads of toys, a sensory room and some games consoles, which Mr CleftDiary had to be steered away from. For my part, I had to be steered away by Mr CleftDiary from the Gruffalo statues. He was immune to my insistence that they would look great in the garden.

Although Wednesday was a little full of information, I think I have at least got the essentials of what I need to take with me. Mr CD has requested hospital accommodation so he can be on hand overnight which he will hopefully get but if we don't we know its because there are people who need it more than we do. Other than that I am trying not to think about it too much, other than getting as much Christmas shopping (or 'elfing' as we call it when in earshot of our oldest) done as possible. If the last 15 weeks has flown, the next 4 will do so even more.

I am considering live tweeting on the day of the operation (subject to the usual conditions of remembering and not being a complete mess on the day). It may have the downside of spamming your facebook/twitter page for the day, but the upside of giving me something to do. Let me know your thoughts.

Up and Downs

Today was an exciting day in our house. My parents, who live next door to us, came back from 3 weeks election-rigging in the USA. My eldest son had missed them terribly, despite being assured that they were 'working' and not on holiday at all (ahem!)

What with them being away, half term, and what seems like endless medical appointments the last few weeks has disappeared in a flurry of school runs, running late and screaming (not all of it mine.) The one thing this last couple of weeks has taught me is that even if we could afford to privately educate our children we wouldn't, as that would mean having to keep them occupied for 2 weeks over a half term and 8 weeks in summer. We barely made it alive after only one week.

H is going on OK. He is 13 weeks now and we are only 3 1/2 weeks from his operation.You may remember from a previous post that he had reflux that had twice caused him to choke, once quite badly. Since then we had been giving him Gaviscon in every feed and it really seemed to help. We had no more reflux and no more choking, and the only side effect was that it made his poo a bit....playdoh-ey. A couple of weeks ago he started to reflux again but we had been told by the doctors that once he got beyond a certain weight we could increase the dosage of Gaviscon in his feed. Unfortunately, this had the effect of locking his poor little bowels solid, going from mild discomfort to screaming pain in a couple of days.  After a quick chat with the cleft team and the GP's we took him off the Gaviscon and put him on something called Renitadine which works in a different way but has a similar effect. Whereas Gaviscon thickens the milk, Ranitidine decreases stomach acid production so in theory shouldn't turn his poo into concrete. Ranitidine does take a few days to get into the system so the reflux came back temporarily but in the end we decided to split it down the middle and give the Ranitidine and a lower dose of Gaviscon and that does seem to be working. As for H's solid bowels, we got some laxatives from the GP and that seems to have done the trick. This evening we have had a far happier baby than we've had for a couple of weeks.

Just as an aside, my top tip for situations requiring laxatives is to give the stated dose about an hour before you are due to go out with some friends for the evening, leaving the baby with your significant other. I do not recommend doing this to babysitters as these people are like gold dust and you to not want to piss them off.

I am hoping that the reflux/constipation issues will sort themselves out now as it was affecting H's feeding and that is the last thing we want this close to the operation. He hasn't got the most relaxing week coming up either, what with test on his kidneys on Tuesday (not cleft related) where he will be injected with dye and scanned, followed by cleft clinic and pre-op on Wednesday and injections Thursday, he is going to be in a cracking mood for our family weekend away next Friday.

Mental note: Pack Calpol.

___________________________________________________________________________

One final thing to mention, and while not strictly related I think it is important to talk about.

This week, I was prescribed antidepressants for Post-Natal Depression. I have suffered from depression various times over the last 10 years, and been on these particular tablets before and they have worked well for me. What I have been feeling the last couple of weeks is not typical of the depression I have had in the past. Before there would be a slow decline in mood until one thing tipped me over the cliff and into the void. Once you have 'gone over' it is a long and difficult process to get back to where you were.

I am pleased to say that that void is not what I have been experiencing recently. Instead of a slow decline, my moods have been wildly erratic. While the lows have been awful they had been manageable until one particularly low moment last week when I realised (with the help of a wonderful midwife) that if I didn't get help I would go over the edge and soon. I owe it to my family to be mentally well enough to look after them and myself so I sought help.

I am confident, as is my GP, that these mood swings are hormonal in nature. I do have trouble with hormones and I think mine are just not settling down as quickly as they should. They are certainly nothing to do with H's cleft or his impeding operation. While I know it will be hard on the day, I have complete trust in the team at BCH and up to now I have had no worries or concerns about it. I am sure that will change closer to the time, that is only natural, but it is not the source of my depression at the moment.

It may seem self indulgent to write about this, or maybe it seems like a ploy to gain attention. I can assure you it is none of these things. I am evangelical about the need to talk openly about mental health issues, but I normally only do so when I am well. Talking about it when I haven't been myself is hard. It is harder when you seem well on the outside, which in public I am fairly confident I do. I know I avoid eye contact when I'm starting on a downward slope, it's one of my internal warning signs which tells me to monitor my mood closely.

The tablets take a good few days to get into your system properly, but I am already noticing some positive effects. Most noticeable today was giddiness, which this medication has been known to induce in me. It caused me to be dancing round the kitchen doing a rather fantastic (if I do say so myself...and I do) rendition of 'Oh What a Circus' from Evita for nearly an hour. In general though I feel the mood swings lessening in severity which is a massive bonus....if only for my poor husband.

For one thing, he hates musicals.

Who Nose

I was coming out of the GP surgery the other day when I got caught a crowd of kids pouring out of the bus from our local high school. I was trying to steer the buggy through the mass of teenagers when I saw him.

He was tall, with his tie undone, shirt untucked and his bag slung casually over his shoulder. I watched him walk down the road in the centre of a large group of boys, laughing, joking and brimming with confidence. 

I didn't initially notice any of that though.

What I saw, was his nose.

It was just like H's. Flat on his left hand side. 

At BCH the consultant had discussed H's nose. For some reason I had thought that the flatness would be corrected as part of the lip operation however this is not the case. The hospital do offer a rhinoplasty but as a general rule they do not consider it until the child is in their mid teens so that they can make the decision themselves. When we thought about it, we completely agreed with that approach. It is one thing to consent to operations on medical grounds, but beyond that we feel that it is for H to make an informed decision about what happens to his own body.

My approach to this whole experience has been to take everything one step at a time, and not worry about the future until it is here. As such I hadn't thought any more about H's nose until I saw this young man getting off the bus. As soon as I registered what I was seeing I braced myself to feel panic. As someone who had a, frankly, shit high school experience, I am not relishing the thought of either of my boys attending the local high school. In that moment, it occurred to me that H could be in for a rougher ride than I had previously considered. But then I looked again, and the panic I was expecting wasn't there.

The boy was surrounded by a large group of young people, and shouting farewell and others as he headed for home. He was smiling and joking. He was clearly enjoying himself in a way I never did at his age. 

I have made a commitment never to talk about my high school experience to my boys. My brother went to the same school 3 years behind me had a very different experience and a long time has passed since we were there. L & H's school experience will in all probability be completely different to mine, and I don't want to prejudice their experience. That said I wouldn't be human if I didn't worry a little bit. 

I really hesitated writing this. I'm not sure what conclusion you as a reader are meant to draw and I am completely aware of how presumptuous and even hypocritical I sound. I am in no way saying that all children with clefts have a rough time at school. I don't even know that the boy I saw had a cleft. However, the point of this blog is to be honest, When I looked at that boy I saw my son in 15 years time, and my past experiences are bound to affect my hopes and fears for my children. That said, I walked away from that boy surrounded by his friends and I was smiling - oddly full of hope for something I wasn't aware that I was worried about until 30 seconds earlier.

Birmingham Children's Hospital

It is with a certain amount of horror that I realise my last post was the 21st September. How is it October already? I am aware that time speeds by when you have children but it genuinely doesn't feel like a week ago that I posted last and a I could have sworn the Birmingham Children's Hospital appointment was a matter of days ago.

Generally everything is going well here. H is eating and sleeping well and weighed 12lbs today. He flew through his 6 week check with the GP (although I swear he was trying to gas the poor doctor, I've not heard that much wind come from something so small ever before) and he coped with his vaccinations really well. Or did I just calpol him through it? Either way he was and is fine.

Our first trip to Birmingham Children's Hospital was a couple of weeks ago. I wasn't particularly nervous in the run up, just conscious that this was my opportunity to ask intelligent questions.

Although I had heard from many people how good BCH was I genuinely wasn't expecting to be blown away by the place, but blown away I was. Admittedly, we only visited Outpatients, but the whole place felt happy. It was bright, bubbly and (and I really do mean it in the best possible sense) nicely chaotic. Any room with that many children is bound to be chaotic, but it was brilliantly managed. The outpatients department itself is full of comfy, funky chairs. There are lots of toys for the kids and screens showing Disney films as well as a coffee area for grown ups with a caffeine addiction.

Everyone we met and spoke to, without exception, was lovely. I mean really lovely. Everything was explained with a smile and a joke, we were encouraged to asked questions and they were always answered. The staff running the desks in outpatients were spinning plates dealing with patients and the clinical team but in the 3 1/2 hours we were there I never saw them drop one.

Although 3 1/2 hours seems like a long time, we were never kept waiting more than 20 minutes for any one thing. There were a lot of people to see and the breaks in between meant we could digest what had been said, discuss it and come back with any questions if we thought of any.

That afternoon we saw the following people/departments.

Nurse 
To get weights and measurements. Of H, obviously. I don't think they'd have big enough scales for me.

Psychologist
To see how we were coping and to explain what her role within the Cleft team was. Essentially she said that she was there to help us if we felt there were any problems or worries we had.

Mum said she'd need to hire extra staff.

Consultant
Our consultant is Ms Rorison and we met her along with one of the cleft nurses and the speech and language therapist. Ms Rorison went through the procedure with us, explaining that she would be rectifying the cleft lip and the vomer flap which separates part of the nose. By doing this earlier it is believed that it aids with the development of speech and language.

The operation will take approximately 90 minutes although H will be away from us longer due to preparation and recovery time.

The operation has been set for 6th December.

Pre-Operative Assessment
We were asked a few questions about H's general health to see if a full pre-op assessment would be needed. Due to H's dilated kidney, one would be required.

Clinical Photography
To take photographs of the lip and palate for H's medical records. Of course he was catching flies outside the room and right up until the moment the camera came out, whereupon he shut his mouth and refused to open it.

We have now had confirmation of our admission on 6th December as well as a pre-op in mid November and a followup appointment the week after the appointment.

Although we were there for a few hours, it didn't feel like we were.

I really want to thank everyone at BCH, and particularly the cleft team, for making this process so much easier. I have said before that these are the people who make the NHS the best health service in the world, despite what certain sections of government and the media would have you believe. Thank you.

The Kindness of Strangers

Afternoon!

I have managed to sneak upstairs on the pretext of tidying up (pffft!) to come and update you on what is happening in our world.

The gavisgon seems to be working really well and we haven't had a choking fit since. H seems a lot more settled and we are a lot calmer.

We went to our first Happy Faces group in Warwick on 9th September which was fantastic. It was so nice to meet other parents and prospective parents and have a bit of a natter. Thank you so much to Jo for organising it. The the next meeting for Warwick is the 14th October and you can register here.

Next week H has his first appointment with the cleft clinic and his consultant, Ms Rorison, at Birmingham Children's Hospital. I will post an update after that.

Otherwise there isnt much to report, so I thought I would write about peoples reaction to H when they saw him for the first time. It was something I thought a lot about before he was born and I know from messages I have had from other people, that they worried too.
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One of the things I worried about when I found out that H had a cleft was the reaction of other people.

Before H arrived, we went for the 'loud and proud' method of notification. We told everyone who asked about me or the baby and everyone was amazingly supportive.

We looked for a way of informing our wider community. As odd as it sounds we didn't just want to put something on Facebook as we didn't want it to come across as attention seeking. I am aware how odd that is considering I am now blogging about it, but there you are. We found out that CLAPA were doing a sponsored walk in our area and that seemed to be a great idea. It would be good to raise money for a charity that would be doing a lot to support us over the next few years and to meet other families who had been affected by clefts. It also had the added bonus of being an excuse to put something on social media in the form of a 'Just Giving' link.

Our friends and family were incredibly supportive. The emails and messages I got from people were overwhelming and we raised an incredible amount for CLAPA. I almost felt guilty as we were, all told, going for a nice stroll around a lake followed by lunch. Hardly a trek up Kilimanjaro, but the money would go to a worthy cause so it didn't matter.

The day itself was lovely. We walked around Arrow Valley park in Redditch and were joined by our family, all in CLAPA t-shirts. There was a fantastic atmosphere and it was lovely to meet so many people.

New babies, as everyone knows, are people magnets and this is where the real worry lay for me. I had visions in my head of a nice old lady stopping me in the shop and asking to have a look, only to do a double take and stumble over her words as she tries not to say anything. I had visions of people looking shocked, or horrified, or shaking their head. From my, now rational, point of view I know how silly this sounds but at the time it was a real fear. If you are pregnant with a cleft baby and are reading this now, let me tell you that none of that has ever happened. People have been unfailingly polite, kind and positive about it.

The first person who saw H who didn't know was an elderly lady in the middle of M&S. It was almost exactly like the visions I had had while pregnant. I braced myself for the shock which never came. She simply said "Oh he has a hair lip, how soon do they operate on those nowadays?" That was it. Some people don't mention it, some ask if I mind them asking questions about it which I never do. Most people, though, are genuinely interested and caring.

A special mention must go to the two ladies who were in Aldi the last time that H had a choking fit. They saw me trying to clear his airway and came over to see if they could help. One began to tell me how her son had been sick a lot and asked if I was a first time mum. I think probably because of how panicked I looked. When I said I wasn't and explained about the cleft and how that made it more difficult to clear his airway they couldn't have been more helpful and lovely. I didn't get their names, but they really helped me be calm and rational when all I wanted to do was scream. Thank you

Off Topic - Pre & Post Natal Depression Awareness Week

Afternoon! I wanted to share this post from a fabulous blog regarding Pre & Post Natal depression. The blog is called 'Hurrah for Gin' (a sentiment I fully endorse) and can be found here.

I am evangelical about the need to openly discuss mental health issues in general but I wanted to share this because having a baby is HARD, in someways labour is the easy bit. It is hard and exhausting and your hormones are screwed and that's just a baseline. Add to that having a child with additional needs and it can feel like your drowning.

If you feel like you're not coping, talk to someone. Your partner, friend, family member, midwife, health visitor, GP or the even Samaritans - an amazing charity who are always there. Their number is 116 123.

If you are struggling, know that it isn't just you. You are not alone. It will get better and, most importantly, there is no shame in asking for help. 

Cough and Splutter

Well, we are 3 weeks and 5 days into the the reign of H and he's doing well. He is feeding well, around 120ml a time give or take. Given that, its no surprise that he is putting on weight well and at last check was nearly 1lb over his birth weight.

That's not to say its all been complete plain sailing, in fact H seems to have been delighting in scaring the crap out of me over the last week and a half. It started a week ago last Friday during an unusual period of quiet in the house. H was asleep in his basket and I was sat reading with a cup of tea. I noticed his legs move and thought he was waking up, but he wasn't crying so I left him to it. A few minutes later he started gurgling quietly but, assuming he was playing, I didn't pay much notice. A minute or so later I got up to let the dog out in the garden and happened to look over into the basket.

His eyes were wide and there was milky vomit around his face and head. He was pale - verging on blue. I picked him up, turned him on his front and tapped his back to clear his airway. A couple of taps did the trick and he soon was screaming.

I was not, but god knows I felt like it.

Thankfully my mum was around to help me get him cleared up and bring me down off the ceiling. I was used to him choking a little but when we gave him thick things, like Infracol and his antibiotics, but that isn't a problem when you're there on hand holding him. The fact that this was nearly two hours post feed, he was in his Moses basket and I was completely unaware until I happened to be passing...that freaked me out.

I spoke to the midwife, the cleft team and got H checked by the GP. Thankfully everything seemed ok with him. I was a bit of a wreck for a few days mind; jumping up every time he coughed or spluttered, or when he didn't cough and splutter, or for any reason at all really. It had happened once before in hospital, but elevating one end of the cot seemed to sort it and it hadn't happened again until that day. I am not generally a worrier where kids are concerned (although after reading this blog you may disagree). I generally take the line with my 3 year old that as long as it doesn't involve fire arms, a blade or poison, he will be fine and if he hurts himself he won't do it again in a hurry. This is in stark contrast to my sainted mother-in-law who has a coronary every time my eldest goes within 5 meters of a step. How she raised 3 boys, especially THOSE three, without having continuous breakdowns is beyond me.

After a few days I calmed down and carried on as normal, but then it happened again last Thursday. Thankfully it wasn't as bad this time, I was in Aldi (other supermarkets are available) and I noticed at the check out that he was struggling to breathe. I got him out and cleared his airway and he seemed fine. I think a combination of him being sat in his car seat and me noticing sooner helped.

Another call to the ever present and ever helpful cleft team and the GP, H has been put on infant Gaviscon and it does seem to be helping. There is less coming up and he seems a bit more chilled out generally. It's funny, but during all of the discussions we had as a family and with Doctors and Midwives after the diagnosis, it had never occurred to me that H's airway would be in any way compromised (for want of a better word).

So for now I'm keeping an eye on things, but the Gaviscon does really seem to be helping. We are also making sure we keep H upright for 20 minutes after a feed, which he isn't too keen on as he tends to go into a milk coma. In the mean time I am hoping H is getting all of his 'scaring mummy' urges out of his system, ideally before he reaches his teens and can start doing genuinely scary things!

In other news.

A massive welcome to any readers who found their way here via the BCH newsletter. I hope you find this blog helpful and that you enjoy reading it - even if it is only to laugh at me! If you would like to keep up to date with the blog and sporadic other posts, I have a Facebook page and a twitter account. Come and say hi!

https://www.facebook.com/CleftDiary/
https://twitter.com/cleft_diary

Finally, H and I are off to our first Happy Faces group on Friday in Warwick. Maybe I'll see some of you there.

Well....That happened!

I'm not entirely sure where the last two weeks have gone, although most of it seems to have been spent holding a bottle.

Of milk that is. Not gin.

Ok, sometimes gin. Anyway...

Yes, two weeks ago baby H arrived on the scene in the early hours of the morning. A little smaller than we expected (although not small by any means; anyone who describes 7lb 9 as small has clearly never had to push something that size out of their foo). I had started the induction process 3 days earlier and had been on the drip for almost 11 hours by the time he finally decided to make a dramatic appearance.

I will spare you the details. The chances are that if you are reading this you or your partner have been through labour and so don't need reminding, or you will be going through it soon and will find out for yourself.

Anyway, he is here. He is safe, and healthy and my husband and I are happy (if perpetually tired).

So what happened before/after the birth? Instead of a confusing chronology, and as I am an avid fan a list, I will set things out by subject.

Before Delivery:

What was the plan?
As I was in hospital for nearly 4 days before H finally showed his face, there was plenty of time to come up with a plan. However, even if I had only been there for a few hours before delivery I am confident the plan would have been the same.

I have to say at this point that all of the staff at the hospital were wonderful, with a special mention to all of the midwives who dealt with me for the three days before labour started. I only had one sense of humor failure and it was pretty spectacular, but they were always kind, generous, funny and a credit to the NHS.

All the midwives knew the plan and handed over the following shift fully so everyone knew what was going on. The plan was that on delivery there would be two midwives in the room, which is normal, and two pediatricians to check the baby over when he arrived. The best laid plans however....

When H did decide to make an appearance it was very, VERY, quick. So the pediatricians weren't there but thankfully weren't needed.

Did you have pain relief?
Yes. I am neither mental nor a masochist!

After Delivery:

Was the cleft diagnosis correct?
Yes. H has a left side unilateral cleft lip, palate and gum. The cleft palate goes front to back on the left side as well as some missing at the back on the right.

Did the baby have to go to Special Care Baby Unit?
About an hour after delivery (or was it 10 minutes? or 3 hours? To be honest I wasn't in my right mind, it may have been weeks!) my husband took H to the SCBU. This wasn't done immediately so there was plenty of time official introductions. The SCBU staff put a small tube into his stomach to check for acidity levels, although this was more to do with the fact that there had been increased amniotic fluid than the cleft. Then the SCBU staff showed my husband how to feed him with the special squeezy bottles that Jo from BCH had given them, and that we had miraculously not lost AND remembered to pack! Star on the star chart for us.

H and husband then returned some time later and the three of us were transferred to postnatal ward.

The midwives had been able to arrange a side room for us in the postnatal ward which was an incredible help not only in my recovery, but in bonding time with H as well. I'm not sure what the rule is about side rooms across the NHS but I would definitely recommend asking.

How is he Feeding?
Well, actually. He likes his food but that is no suprise to anyone who has met his dad and brother - both gannets. At is 18days old H is regularly taking 90-120ml. He is taking on wind and we to spend a lot of time encouraging burping but he seems to be coping quite well. Sometimes we don't get it all and the wind 'goes south' and gets trapped in his lower stomach and which point we know about it!!!!

BCH Cleft Team visits. 
Jo visited us in hospital on the day that H was born and again 2 days after we came home. She was very happy with how H was getting on. We have been assigned a Consultant and our first appointment with BCH is at the end of next month. At that point we will get our date for the lip operation.

So, that's where we are now. I think I've covered the basics.

Apologies for the rambling, nonsensical nature of the above. There is a reason sleep depravation is covered by the Geneva Convention.

Meet & Greet

Sat here with cup of tea, flicking through my maternity notes, 'Show me, Show me' on in the background and it occurs to me that I haven't spoken on the blog about our 4d scan, and seeing our baby's face for the first time.

There are some very generous companies across the UK who offer free or discounted 3D/4D scans to parents in their area who have had a Cleft diagnosis. You can find a list of them on the CLAPA website here or ask your Cleft Nurse.

We visited Babyvision in Wolverhampton in mid June.

In the run up to the appointment, I was excited. I had never had one of these scans before and I was looking forward to seeing what our little boy looked like. This was coupled with a certain amount of fear. After all, we would see what see what our little boy looked like.

After the initial diagnosis and meeting with the cleft nurse, I didn't google. I didn't search out pictures, before and after photos or anything like that. I didn't want to build up an expectation as to the extent of the cleft. This turned out to have the opposite effect because I built a picture in my own mind that wasn't really based on any fact. I knew the cleft was 8mm unilateral but that didn't really mean a huge amount to me. So the prospect of seeing it was very daunting to both me and my husband.

We had talked about whether or not we were ready to face seeing the extent of the cleft, but it was an academic discussion really. We would have to face it at some point, and the earlier that could be done the longer we would have to get used to it in our own minds before seeing our son in the delivery room.

We had a bit of a drive from our home to Wolverhampton, and I was really apprehensive all the way. Part excited. Part terrified. In an odd way it reminded me of the feeling I had on the morning of my wedding, but far stronger.

We arrived in good time and were shown up to the waiting room. The building it was in had clearly once been a huge house, the kind that had 'staff', but now housed a doctors surgery as well as Babyvision.

The staff were lovely and put us completely at ease. The sonographer went through the notes and invited us through. It started off as looking like a 'normal' scan but she flicked a switch and like magic, there he was.

Our son.

The first thing we saw was his non-cleft side, and it was remarkable how much he looked like his older brother when he was a baby. I suppose that shouldn't come as a surprise but I think I spent so much time focusing on the cleft that I hadn't stopped to think about what the rest of his face would look like.

The next job was trying to get him to move so we could see the cleft side. I turned over one way, then another, then stood up and jiggled about a bit and eventually he let us see all of his face...

The sonographer laughed and said he was the grumpiest looking baby she had ever scanned. I said he looked like my dad. I'm not saying there's a connection but.......

To be fair the little one had every reason to be grumpy. The poor thing had been poked and prodded and scanned as much as me and I know I was fed up with it. At least I knew why it was happening. He was just in there trying to grow, sleep and suck his thumb and people kept squashing him.

The grumpiness didn't last for long though and we got a good look at him. The technology is amazing, we could pick out bits of me and bits of my husband. We were free to ask any questions and they were honestly answered. My main one was that on some of the pictures there seemed to be a disfigurement higher up the face to the right of the bridge of the nose (as in the above 'grumpy' photo). The lady explained that where the scan couldn't reach the machine fills in the gaps, and with a twist of the wrist the probe was moved to the area in question and it all looked normal.

As a final hurrah, and in an early show of defiance, the baby stuck his tongue out and gave us the finger. Charming. Clearly has his mothers attitude.

We were given some printed photos to take away and a disc full of images.

We headed home, not sure what to say to each other. I made it half way home before I needed to pull over to have a 'moment.' I'm not sure why I was crying, maybe it was a release of pent up anxiety, maybe it was finally facing reality. The moment didn't last long and we were soon home showing our parents their Grandson.

In the few days following the scan, we played the pictures on a slideshow on the TV in our house, just looking at them. And smiling. He is our son. We love him and, short of wearing a Liverpool FC shirt, we would love him through anything.

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I want to take this opportunity to thank Babyvision and all of the other companies who offer a free or discounted service to parents with a cleft diagnosis. It is an amazing thing to do and helps parents through such an uncertain time. Thank you.