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.