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.