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.