Baby’s Progress

Finally I have the chance to blog about our second post surgery Cardiology follow up appointment, which we had last week.  I had been working myself up into a nice little frenzy of anxiety prior to the appointment so was glad when the day finally came and we could get on with it and hear how hes doing.  To our eyes, he was making excellent progress – he is steadily gaining weight, feeding much better and has a smile for anyone and everyone who catches his eye!  My husband took this as a reason to be optimistic that all was well, but I felt I just couldn’t  dare to be positive, just in case…

As usual the appointment started with baby boy being weighed and measured – all good there, following his lines on the charts as he should.  Next we had the ECG , this was tricky last time, baby boy needs to stay still while 12 leads are attached to his chest and a reading taken over about a ten minute period.  Thankfully he did beautifully this time, lying still on the bed, smiling at his mummy and daddy, quite heartbreaking to see.  Finally we had the dreaded echo (an echocardiogram) – baby boy has had loads of these in his tiny life, and he HATES them.  I don’t blame him really, lying outstretched while hes covered in cold gel and prodded with ultrasound equipment.  Echos seem to take forever, its a very important part of his assessment,  requiring many detailed images to give a picture of how his heart is functioning post op. This echo was marginally better than previous ones – I can see how it might become easier as he gets older and more distractable, but he still ended up screaming the house down by the end of this one which is pretty distressing to see.  The more he cries, the harder it is to get a picture, so babies are sometimes sedated for this process but luckily that wasn’t necessary for us on this occasion.  Poor, sweet baby fell asleep almost instantly in my arms as soon as the echo was over, he had exhausted himself with all that crying.

Our consultant then had a chat with us to talk through all their findings, and it was all positive, much to our great relief! They are happy with how hes recovering and now don’t want to see us for a whole 6 months!! Well, they phrase it all very carefully – rightly so, we understand that the long term future is unknown territory for anyone after this operation, but we both noted that the doctor used the ‘g’ word this time – ‘good’, which we have come to realise  is praise indeed.

So I’m feeling pretty good myself after that appointment. I still worry – I think I always will, but  I am starting to get glimpses of a future where life is not dominated by baby boys wonky heart.  He really is a little miracle – I marvel at him all day, every day.  What a lucky mummy I am to spend my days with such amazing boys!

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Healing and Holding

Well today is a little landmark for our baby boy – it is exactly 3 months since his life saving open heart surgery.  Like lots of the life changing events I have experienced, in some ways that day seems like yesterday, in other ways it already seems like a long time ago.  I describe 3 months as a landmark as we were advised to wait 3 months after surgery before picking him up under his arms, before then we would have to cradle him in our arms and ‘scoop’ him up rather than lifting him straight up.  This is because his sternum needed time to heal, they cut through it for the surgery and it is then held together with wires while the bone fuses back together – the wires remain there though and no, it wont make him set off alarms at airports apparently!

So when the consultants explained this to us, I didn’t think it was that big a deal – we just had to remember to hold him in a specific way. However,  it has really surprised me how much of an impact this had on our handling of baby boy.  At the start, there was always that feeling of having to stop and think before picking him up, my heart would skip a beat the times I almost picked him up the wrong way through habit. Then of course, it became second nature, but remained a constant reminder of his fragile state, of all that he had been through.  I think it has not helped us in our journey to establish breastfeeding (sheesh… the breastfeeding – thats a post in itself)  I was always nervous to manoeuvre him too much, imaging these tiny bones jerking around out of position – I’m sure it doesn’t really happen like that, I still have a pretty poor understanding of anatomy!

Anyway, the day has come where we tentatively tried picking up our baby boy under his little chubby arms, holding him upright against us, allowing a little pressure on his miraculous chest.  I cowardly made my husband have a try first, still worried that baby boy would yelp out in pain – of course he didnt and just looked at us with his usual bemused dribbly grin!

 So the fun can now begin – tummy time, chest to chest snoozes, holding him outstretched and making him giggle.  More than anything, its a helpful shift in our perception of him as a delicate little thing, moving on to seeing a more robust chap that we can cuddle with a bit more confidence.  Onwards he goes, moving speedily along that road of recovery – its a remarkable journey to witness.Image

Heart Week

This week (7-14th Feb 2013) is Congenital Heart Defect Awareness Week.  As I have previously mentioned, our baby boy was born with a heart defect called Transposition of the Great Arteries. This means that the two major vessels that carry blood from the heart  were switched round the wrong way, causing decreased oxygen in the blood.  Life saving heart surgery is the only treatment for the condition, without it, life expectancy is a couple of months at most.  

There is no certain cause for the condition, our consultant explains it was simply ‘bad luck’.  However, we were very lucky that it was picked up at all.  Many cases of TGA are picked up antenatally in the 20 week scan, if not, they are picked up within hours or a few days after birth.  We were very unusual in that our baby boy made it to the ripe old age of 11 days before anyone noticed anything untoward – his symptoms simply were not as obvious as they are in some babies.  I realise now what a tough cookie he is, he really was a little time bomb during those 11 days and we are eternally grateful that his condition was spotted before it was too late.

This could have so easily been remedied for us and  thousands of other families with a newborn screening test using a pulse oximeter , a simple, painless sensor usually placed on finger or toe that measures blood oxygen levels.  If carried out alongside the other standard newborn checks, a pulse oximeter test would pick up 75% of congenital heart defects, simply put – its a cheap, effective way to save babies lives.

The following e-petition is asking the Department of Health to roll out this test for all babies born in the UK, increasing the early detection of CHDs.  I have signed, perhaps you can too?Image

The baby that he is…

photo (2)I had a really good piece of advice from another ‘heart mum’ recently – she reminded me to enjoy our little man ‘for the baby that he is’.   Like lots of good advice I’ve received over the years, I’m not always following it – its so easy to get caught up in a whirl of anxiety and forget that he is also a beautiful, smiling, increasingly chubby little wonder.

We had a health visitor appointment today, all good news – she is happy with how he is doing, barely recognised him as he’s looking so much bigger.  Yet somehow I can’t seem to enjoy this praise and great progress, I’m still expecting a catastrophe round the corner, a ‘but’ at the end of the sentence.  I think because his diagnosis was a complete shock to us (many TGAs are picked up antenatally in the 20 week scan, unlike us, who found out when baby boy was 11 days old)  I’m still reeling a bit, and relaxing is someway off in the future.

I’m not a constant pessimist, I really do try and savour the moment.  Its impossible not to be intoxicated by the smell of his neck or be warmed by that beaming gummy grin, but it is something I would like to allow myself more of.  It’s early days and our experience remains a little raw but I plan to work on ‘enjoying the baby that he is’, I know how quickly these early days pass.

Where to begin…?

So I have taken the plunge and started my blog, yikes!  I suppose this is the bit where I write insightful, articulate musings which will earn me an army of followers – okay, okay, maybe not in my first post though, I’m allowed a little time to find my feet aren’t I?!

Well I’m currently in that strange continuum of time and space known as maternity leave, and its a whole different ball game second time round.  The combination of a toddler and a newborn, not least a newborn recovering from open heart surgery, is an interesting one.  Baby boy is 2 months post op and doing rather well.  I’m still steering clear of  playgroups and the like as I’m avoiding all those winter bugs – our consultant said catching a bit of lurgy wouldn’t be the end of the world at this point, but I’m hoping for a bit more time before we have to test that theory.  So we are spending a lot of time charging round the park in the wind and rain, baking and playdoughing to keep big boy busy.  Its not always (or ever) easy – both are so needy in different ways, so I’m having to ‘spread the jam thinner’ as my mum would say and feeling all the guilt associated with not giving all my time or attention to either little chap.

However, as always, I’m enjoying planning the future – I’m currently spending my evenings browsing new houses as we are hoping to make the move from city to village in the summer.  Daydreaming is one of my favourite pastimes and is currently keeping me sane.  I’ve also taken the leap of signing up to train to become an antenatal teacher, a long held ambition, so I’m massively excited about all the opportunities that that will bring.  So its all change here, a new life and a new reality beckons…and now a snazzy new blog to document it all!