23 June 2016

A cardiac update

So I posted on Tuesday night on Instagram about our upcoming cardiac clinic appointment that we had yesterday. I wrote last week about how I tend not to let myself think about that side of Rohan's health, as frankly it just scares me a little bit. In one way I know we've been incredibly lucky that he's so far not required surgery, as that is what we thought would happen in the first week of his life. Obviously the longer we wait and bigger and stronger he will be which all helps with the risk factors of surgery. But it's hard to feel thankful too much really, as the possibility is still very real.

When we were in hospital we were on the cardiac ward, waiting to see what would happen to his heart as time went on. We saw so many people go through, before and after surgery so I can sort of imagine what it feels like to be in that position. We've only ever had to though hand Rohan over to someone once where there could have been a risk to him. That was just for an MRI, under general anaesthetic and that was heartbreaking enough. I didn't want to just hand my baby over knowing that I was putting him at risk of dying. Sorry if that's a bit much, but that is what it was. Those were the words we had to hear. So to think about doing so for heart surgery just doesn't bear thinking about for now, I try not and let myself imagine being in that situation yet.

So back to yesterday. After our last cardiac appointment a few months ago we were awaiting news on what the surgeons and other consultants thought would be the best plan of action. They have a big meeting once a week to discuss cases, and our consultant was going to present Rohan's case. We hadn't heard anything back to I was anxious to hear the result of what they said. There were a few issues that they were discussing and perhaps a few options for surgery. One was that his Patent arterial duct was still open and they needed to decide whether that was putting more pressure on his heart. So there would be an option to perhaps to keyhole surgery just to close that. But then they also wanted to check to see whether the fact that his aortic arch is a peculiar shape, but hadn't actually narrowed into a full coarctation like they thought, would need fixing too whilst they were closing the duct. This would mean bigger surgery. But thankfully, it seems as though they are happy to wait for now. They agreed that neither the duct being open or the 'tortuous' arch were causing too much detrimental effect on the heart to be operated on just yet, and thought that the benefit of waiting would outweigh the risks of surgery. I think they also decided that they wouldn't do surgery just to close the duct, as it might not be as simple with the arch in the way.

Rohan had another echo of his heart yesterday, as well as an ECG and all looked ok, other than a slight thickening of the pumping chamber, meaning that his heart is perhaps working harder than it should because the blood doesn't flow as easily down his arch to his lower body. His blood pressure was also a little higher, both of which can be indicators that he may need the surgery at some point. Our consultant said that her gut feeling was that he would, but it is very much a wait and see how he grows and gets on. We have another wait of about 4 months in which she will be presenting his case once more with the developments, and if they then decide that yes they do want to operate it could be another 3 to 4 months after that. So we are potentially looking at when Rohan is a year old, and things can still change in that time.

So we are fairly happy with the outcome, things are delayed a little bit more and Rohan has time to grow and get stronger.

I just also wanted to say thank you to all of you who left a comment or a message about it, it really does make it easier to deal with and I really don't know where I'd be without that support! 

20 June 2016

A family walk: A trip to Kent

A few weekends ago we headed out on our first long cross country trip to visit my sister in Kent for her birthday. She'd just moved house and we were excited to see her new place, as well as meet the newest edition to her family, her puppy Ida!

We had a lazy weekend spent mostly in the garden and countryside around her little cottage, out in the middle of nowhere but not too far from Canterbury. I think it's safe to say Theo fell head over heels in love with the pup and wanted to hold her lead or carry her everywhere! On Saturday my sister, Theo and I took them for a walk over the fields by the house and down to the river that runs at the bottom of the valley. I always forget how beautiful this part of the country is, and I think that if you had to imagine somewhere to portray the typical English countryside, then this place would be it. Rolling fields of crops, a forest on the crest of a hill, the hills on the horizon and a bubbling river at the bottom with a big old Oak tree standing tall in the middle of a meadow. We walked through the rapeseed field watching the dogs lose themselves in the undergrowth before crossing a small bridge over to the river bank.

It was there where quite the accident happened. My sister's other dog Edie had jumped in the river but couldn't get out at the steep bank where she was trying, so we walked over to a shallower part and was calling her to come out. Then quite suddenly, but also in slow motion my sister slipped on the muddy bank and sort of somersaulted her way into the river! There was a split second of checking to a) see if she was hurt (she wasn't) and b) see if she was laughing (she was) before I started uncontrollably laughing. My sister was waist deep, fully clothed in the river and completely soaked. I laughed so much I had tears and my face hurt. She eventually made her way out (I couldn't really help as I had Rohan on my front in a carrier!) and we made our way back over the fields to home, trying to hide from the scout camp who were enjoying their lunch in the field by the river. We laughed pretty much the whole way home, and visions of it kept coming back to me for the rest of the day!

That night we lit a fire in the garden and sat outside in the warm evening chatting until it was time for bed. The next day we spent close to home once more, having a bbq and relaxing in the garden and celebrating my sister's birthday! It was such a lovely weekend.

14 June 2016

A Rohan update

So I thought it was time to do a little update on Rohan. I feel like these are getting more and more spaced out because it seems as though things are just slowly ticking along. But in reality, when I look back at the last update quite a lot has changed.

Firstly, he's 5 and a half months old. I just can't believe he's been with us this long, even with the hospital stay which almost doesn't feel like real time. But at the same time I can't remember life without him, this little babe who's so part of our family it's like he's always been here.

Firstly this little boy really is such a joy to be around, he will often wake from a nap with smiles and little chats and is generally a very contented baby. Those who have spent any time with us will comment how he doesn't really cry, he more just has a little grumble and a moan. But he will definitely let you know if he's not happy about something! Rob always gets a big smile and a giggle when he walks in from work, he loves to be kissed all over face and he's just so sweet. These past few weeks he's been discovering his hands, especially his thumb which he's started to suck a little. It's such a delight to see his little personality developing and he loves to have proper little chats with us.

09 June 2016

A Father's day photoshoot

Seeing as father's day is just around the corner we thought we'd do a little photoshoot with Rob in partnership with Photobox. As a family we hardly have any photos of all of us together, or with one of us in the frame. Our family is a bit unusual as I tend to be the one who takes most of the photographs, (mainly because I hate being in front of the lens!) but in general most of our photographs are just of Theo and Rohan alone. So we decided to set up a little shoot in our garden, with funny props, and let Theo tell us what to do, and take photos! I must say leaving a five year old in charge of an expensive camera perhaps isn't the most relaxing task, but I think he enjoyed telling us what to do, as well as of course being in the photos himself!
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