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.


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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.

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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.