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.

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.