25 October 2016

So that was Summer; part three

We arrived back from our Cornwall holiday for a quick pitstop back in Bristol before heading back East, to my hometown for a friends wedding and to see my dad. It's always a weird sensation going back with my little family, showing them the places of my childhood. It was the first time Rohan had been there too, so that was good to feel like we were introducing him there. We spent a few days there before Rob, Rohan and I headed to Mersea Island for our second wedding (two in two weeks!) and had such a great time.

We passed the rest of the time spending it on little day trips to castles, walks around parks and climbing trees. It was a good Summer. Our first as a family of four and we felt so lucky to be able to take a holiday all together at last!

17 October 2016

Rohan's weaning journey

So I've been meaning to write about Rohan's weaning journey for a while now, but you know, time slips away and before you know it, its two months later...

I guess I should start with the Nasogastric (NG) tube, because that was such a major part of Rohan's care since he left hospital, and for us such a significant journey. He had a feeding tube in since the day he was born, even though he wasn't allowed to have any food actually go into his stomach. He had a tube in his mouth which then eventually got moved to his nose and there it stayed. He eventually was allowed to have small amounts of milk and we progressed from there. We tried to breastfeed, offering it to him before he was due his feeds, which were regulated and always at set times. But because he'd spent a good few weeks not using his suck or having anything by mouth I think he just didn't know what to do, or wasn't strong enough to do it on his own. So we eventually thought we should try and offer him the bottle too. He was having breastmilk still that I was expressing around the clock. The bottle was a little more successful and eventually I stopped trying to offer him the breast as much because getting him to take something orally, became the most important thing. We were working hard to not need the NG tube at all.

11 October 2016

Taking the scenic route

So I've wanted to write a little about this for a while. You all know how much I've struggled, in fact am still struggling to accept that things are different to how we thought they would be and it's been such a difficult journey to accept that our lives aren't going to go how we planned them out. But that's the nature of life right? We can never plan or foresee the future, things don't follow a linear line and we will never know what's just around or the corner, or indeed why this particular fate has befallen us.

Things are always changeable, plans fall through, things don't go as expected and we are given unexpected lessons and gifts. Perhaps at first it's hard to see how something can be a gift, how the hard times can indeed lead us to better times, open doors to worlds we never expected or dared to think of. Maybe it's our chance to let go of the familiar and embrace our chance to be lifted out of what is perceived to be a "normal" life and actually really challenge ourselves and prove ourselves as strong. If everything was easy we wouldn't appreciate the better times half as much. If we never knew pain or sadness would we feel happiness and love as strongly?

I know it all sounds a little deep and waffly, but I've been really trying hard to change my perception of this life that has chosen us. I'm trying to stop comparing Rohan's progress to the babies I don't know but see online or in everyday life who are developing better than he is. Babies born after him learning to do things he's still far away from achieving, if I think about it too much or look for too long my heart sinks and I feel lost. But I need to remember that Rohan is different, he will do these things in his own time, and I can be ok with that. In fact I watched this short film about Down Syndrome last week and I loved the phrase that said "she will be able to do all these things, we're just taking the scenic route." For once I felt like someone had actually put the way I'm feeling in a positive way, that so much about having a baby with special needs is about all the hard bits and the things you'll miss out on or how everything will be different, and whilst I know that these things will still be there it's so easy to overlook what positives it can all bring.

When Theo was a baby is was hard. We had the no sleep thing, the constant breastfeeding, the irritable baby who wanted to be held all the time. I had so many moments of not knowing what I was doing or if I was doing the right thing, constantly questioning our parenting choices and methods. I know perhaps a lot of this has to do with us being first time parents and our whole world being shaken up, but this time it all doesn't seem as hard. If you take out all the medical side and problems we face, and perhaps look past the developmental delay and the need to compare, things haven't been all too bad. Rohan is a very happy baby, he hardly cries or if he does it's easy to console him with a quick cuddle, he doesn't really fuss. He sleeps through the night and has done for most of his life. He's got himself into his own routine and takes regular naps in the day and is just content and self soothes. Rob's been able to form a strong bond with him a lot earlier than he did with Theo, and he's happy to be left with family members allowing us time to ourselves and perhaps our independence back a lot earlier than usual. I've already spent a few nights away from Rohan (aside from the 7 weeks when he was in hospital and we had to leave him, which was heartbreaking) and on the whole it seems as though our lives with a new baby has flowed pretty well. When we went to a couple of weddings over the summer some people commented on how much of a "good baby" he was (I definitely don't think a baby can be either good or bad btw!) probably because he didn't cry or interrupt and just fed, slept and was happy to just sit and be carried around. I wonder if perhaps he was a "normal" baby that he might have made more fuss and been a pain to take to weddings, and would people have been annoyed with us? I wondered whether this ideal of a "good baby" is something people expect, but usually isn't the case. Is it because of Rohan's genetic condition that makes him be like this, and is this how all babies are expected to act?

Anyway, I'm going off point. What I'm trying to say is that despite all the upset and worry there have been unexpected positives to all of this. Yes it's stressful and upsetting to think about the future and how it will be, but on a day to day basis, in our own little bubble it's good. Life is busier, full of appointments and school, but Rohan is easy to bring along, to hang out with. I've noticed to that I've found myself celebrating even the smallest of milestones even more, such as yesterday I gave him a little finger food and he guided it to his mouth perfectly and started to have a good chew. That's not something he could do last week and I was over the moon. I often hear people say they wish the baby bit would slow down, where you blink and they're no longer a squishy newborn but a sitting, crawling almost toddler. In some way at least we get to enjoy these early months for a little bit longer. We get to take the scenic route and I'm going to make sure I take in the view as I go along.

Rohan you little champ.

21 September 2016

Creating our dream pet with Pet Plan!

When it comes to pets I think we're fairly well covered, we have a cat and two rabbits and family who all have dogs. Theo loves our pets, but definitely needs reminding that he needs to be a bit gentler at times, as he does like to cuddle perhaps a little too tightly! I can't imagine not having our little pets around, as they're a proper part of our family. We got Alma when Theo was about 6 months old, and she's only a few months younger than him so I like that they are growing up together, and our rabbits were our latest addition last year! When we moved house a few years ago during those important first few weeks Alma somehow got out of the house and then must have become slightly confused and started visiting another family (lured in by tinned tuna nonetheless!) for a week or two until we finally managed to get her back. It was so strange not to have her in the house, and her presence was definitely missed. It's funny how much of an impact these furry little creatures have in our lives and we want to do everything we can to protect them!

So when Petplan got in contact and asked if Theo would like to have a go at creating his dream pet, to have transformed into a cuddly toy all for him, we thought it was a great idea! Theo hasn't always been into drawing so when given the opportunity to try and encourage that I always jump at the chance. He's recently been obsessed with Harry Potter, and he wanted to design his very own owl so he could have owl post sent to him. We tried to encourage him to be as imaginative as possible and suggested it could have special features, but I think he wanted it to be as real to life as it could. I was so impressed with his little drawing, it looks like such a friendly (if not slightly startled) owl!

09 September 2016

The story of bees

A few years back I heard the quote "To plant a garden is to believe in tomorrow" and I loved it so much that I used it on the packets of wildflower seeds we gave as favours at our wedding. Because to me it gives me hope and something to believe in for the future.

For us nature is a huge part of our every day, and I've always been as keen as possible to show Theo how important it is, by teaching him the names of trees, flowers, birds and insects and the important part they play in our everyday. Living in a city where perhaps wild landscapes are harder to come across, this seems even more important. Nothing makes us happier as a family as heading out of the city for the day and going on long walks through the woods, or finding wild spots nestled in the city for a breath of fresh air. Thankfully Theo does seem to have a great natural interest in it all, and loves to go hunting for bugs and ask questions about how things work. I'm also really happy that he's interested in the work of bees and it's been really great seeing him learn the job that bees do and how we can help them.

That's why I was delighted when Taylor's got in touch and asked whether we'd like to work with them to help promote the bee's humble story. They've created the most amazing real life bee hotel, all to the theme of Wes Andersons Grand Budapest Hotel, to provide the bees with a beautiful place to hang out sampling the best flavours from nature. Just take a look at their mini film and see for yourself how amazing it is!

05 September 2016

A Rohan update

I've wanted to write an update for a while, before my mind starts to forget all the little moments that I try and hold onto before they disappear in a blur of the summer ending and the months passing. It's been quite a while since my last little update on the baby boy.

In truth I just haven't had time for the blog, I feel like we've been so busy over the past few months that it's just been left. But I feel like I'm getting to the point where I have so many thoughts and feelings going on that I need somewhere to spill them out onto before the come out in other ways.

The truth is I feel like I'm just about holding it together with all that is going on, all that has happened and all that may be about to happen. But the worry has started to creep back in and I'm realising I don't have much capacity for anything else, or as selfish as it sounds, other people's problems. I think a lot of this has to do with the fact that actually I'm still not really letting things sink in, I'm avoiding it and trying to pretend that everything is normal. I can't admit to myself yet that things are not what we hoped and I still hold onto that "why me, why us" feeling. The grief and mourning what we should have had is still very real. Everytime I see a picture of a family of four, with a seemingly (I know that actually sometimes things aren't always the way they appear and I don't know what may be going on) healthy baby or a baby of Rohan's age in everyday life I get pangs of jealousy, of thinking why us and not them and it's horrible. It just haunts me and I still can't actually believe that all this has happened to us. My family, immediate and extended, just seems to be constantly getting knocked down, runs of bad things happening which leads me to ask, "what did we do so wrong to deserve all this?". I know it doesn't work like that, but in general you know, we're good people, hold (what I believe!) to be good values and morals, we're kind, we hold no judgements against people different from us and strive for a better world. I don't hate anyone and I do really try to lead a fairly positive life, so I just don't know how or why this has happened to us.  (This in no way means that I think people who go through these sorts of things or worse are bad people who deserve it, that's definitely not what I think!) The hardest part of it all is that there is no answer to that question, it's just "one of those things", some people are lucky and some occasionally lose that lottery. I'm just a little sick of it always seeming to happen to us. I know that actually compared to some we are lucky, we have more than others and for that I should be thankful, and believe me, if this has done anything it has opened my eyes to a whole other world where yes, we are lucky and I do have things to be thankful for. I just wish I never had to see.

29 July 2016

My summer skincare and make up favourites

So Summer is finally here, well sort of it was, for a week and there's nothing like a new season to send me off to the shops in search of new colour palettes, make-up and skin care. Add that to the fact we've got two weddings coming up which is always a great excuse to pick up some new items for my collection.

I've not got a huge make up selection, and most of it does tend to be drugstore as much as I would love to be able to afford higher end, I just can't. But that being said there are still some great products to use. The change in seasons usually plays havoc with my skin, and all this humid weather definitely doesn't help the condition of my skin so I do try and keep my make up light, and my skin well hydrated. I've been trying out these new products from Green People, which are part of their new Organic and scent free product range specially for sensitive skin. Perfect for me then! I always love Green People products as I can guarantee that they won't be harmful for my skin, and full of great ingredients.  I've been trying the Light day moisturiser and the Sensitive hydrating serum specifically. I've only really just started to take my skincare routine seriously, but from just reading some of the benefits of using the serum and the moisturiser I was excited to try them out. I've always suffered with eczema, and whilst in recent years luckily it has seemed to calmed down on my face, I still like to know the products I'm using aren't going to irritate my skin and actually the natural ingredients providing extra benefits that other less natural products wouldn't. So after using these for the past few weeks I can say that I'm really happy with them, the moisturiser is light and absorbs really well and my skin feels soft and hydrated all day. The serum goes on so easily and you only have to use a small amount. I love knowing that I've got really good ingredients going on my face, even if the rest of my make up isn't quite as natural.

Other than skin care I've been loving trying out a few new lipsticks, or rather lip products as I've been after something that stays put on my lips. I love the matte look so have found the Sleek lipgloss and No.7 lip crayon work really well. I've also been trying to embrace the world of bronzer and contour, and have joined the grown up world of finally investing in some decent brushes too! The others are just a few of my make up bag staples, easy to use, affordable with good results.

Items from clockwise:

Green People light day moisturiser // Green People sensitive hydrating serum // Benefit Gimme Brow // Max Factor Creamy blush in Soft pink // Real Techniques expert face brush and sculpting brush // No 7 Matte lip crayon in Raspberry red // Max factor skin luminizer // Mac retro matte in All fired up // Sleek matte lipgloss // Benefit Roller lash // Benefit Hoola bronzer // Collection lasting perfection concealer in fair  // 17 Eyeshadow Palette in Birthday suit  

25 July 2016

Strawberry picking near Bristol!

Last weekend we decided that we'd better go Strawberry picking before it got too late in the season, like last year. It was the harbourside festival on in Bristol, and neither Rob or I had any intention of dragging two children down there (I'm sure it's ace but crowds and business isn't our thing!) so getting out of the city was appealing. We drove to a place that we've been going to for the past three years, (you can see our first trip here...look how little Theo looks!) so it's nice to have some sort of tradition. It's called Chosen Hill farm near Chew Valley lake. The drive over itself is beautiful as you round the valley the get stunning views back down towards the lake and hills in the distance.

It feels sort of special to be slowly introducing our family traditions to Rohan, bringing him along and showing him all these new places. Obviously he's only a baby so isn't really aware of where we are or what we're doing, but it's nice to think he's joining in! These are the things we looked forward to most of all when thinking about having another baby, and especially once Rohan was actually here but in hospital. It felt like such an unknown future, not knowing when we'd be able to get back to our normal lives and start doing all these traditional things as a family. So it's days like these that we soak up even more and revel in the ability to actually be able to achieve those outings and experiences. It may not seem like much, but to us it means so much!

Anyway, this year we went a little wild with the amount of strawberries we collected, and like an over excited kid in a sweet shop we took them up to pay and were a little surprised at how much we'd spent! So armed with our 3kgs of strawberries we heaved them home and decided to try our hand at making jam for the first time. Theo, after helping to make it, then decided that he wanted to give some jars as a goodbye gift to his teachers which I thought was a very sweet idea!

So here's to another year of strawberry picking!

19 July 2016

When you feel like you're failing

I woke up in the middle of the night the other night, and after trying to some what unsuccessfully feed Rohan I lay awake annoyed and unable to get back to sleep. My mind was just whirring with so many thoughts which were mainly, as so often they are, about all the things I needed to do or thought I should've done. I woke up the next morning (after finally falling asleep!) feeling a bit like I'm failing and with a to do list as long as my arm. I know I shouldn't put this pressure on myself, and that actually what we have on our plate is enough already but somehow it makes me feel like I need to be doing more.

Like this blog for example, I love this little space and really want to use it to document our journey, write out silly thoughts and share photographs of our adventures and I feel like it's been somewhat neglected over the past few months. I don't want to give it up, and whilst I know it's never going to be my career or a money maker (not that I want it to be) I feel like I'm somehow letting my readers down, putting off people who would want to possibly work with me and generally being behind on any projects I've agreed to do or want to do. I know it's not really a big deal but this blog has been here since the beginning, before Theo was born and all the way through. It's helped me immensely get through different things, and I just feel like I'm way too invested to stop writing.

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.

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