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.


A few weeks ago I dropped Theo off at holiday club at the local children's centre and some how stumbled into a stay and play. I needed to feed Rohan so I decided to stay. I've only ever been to a little group for people who have spent time in special care baby units, surrounded by mums who know what nicu is like, who know what it is to leave your baby in hospital and for things not to be easy. So this was my first time with Rohan in a normal play group. I settled myself in the baby corner and fed Rohan whilst a few other mums joined the area and sat their babies down. Then the normal, innocent questions of "what's your baby's name, how old are they etc" were asked. I answered, and was met with "oh" and not much else. Because obviously Rohan doesnt look like he's 7 months old. He is tiny, he can roll over but is nowhere near sitting and there is a difference starting to show. But I just didn't know what to say next. I couldn't bring myself to divulge all that he had or what has happened, I didn't know where to start or what to say. I felt perhaps a little ashamed of those delays and differences. I feel so terrible for saying I'm ashamed, but I think I am. I'm not ready yet to embrace the condition, to have no problem with naming what he has and to actually admit that he is different. So instead I said nothing. I couldn't join in the normal conversations and I just left feeling like a bitch. I was proud of myself for going, but in reality it's too soon, or just not the place for me right now. I need to find my group, and I need to find a point where I'm happy to explain, where I don't feel shame and where it's ok.

I don't know when it will all feel ok, perhaps it will never completely be ok and that's just something that I'll have to learn to accept and move on for. I need to stop denying it's there, I sort of need to embrace it in order to move on.


But less about me and more about Rowie. More about the heart stealing little babe that he is.


We've had a break from hospital visits over the summer which has been great as it's meant that we could do all the travelling we needed to do. Rohan has been the best little traveller and is just so laid back. He slept very well when we were camping and just was so happy at the weddings we attended, giving everyone sweet little smiles and just generally being very content. I'm not sure whether it's to do with his syndrome or just his personality, but either way he's lovely to be around.

In the past few weeks I feel like his strength and development have suddenly leaped a bit forward, and is now rolling all of the time, getting a lot more content on his front with his little head up in the air and having a good look around. He's started grabbing at toys and objects and just loves reaching out and touching peoples faces. It's very sweet to see him finally start interacting with things a whole lot more and he will always crack into a big grin and a giggle when you catch his eye. He's not quite sitting, but has come on so well in recent weeks that perhaps it might not be too far off. He's also losing more of his hair, and it in fact looks like it's going a lot lighter, even a touch of red in there in some lights too!

He's just such a different baby from Theo, in where Theo needed to be held a lot of the time and nursed to sleep Rohan will get annoyed if he's held too much and doesn't like being fussed around. Theo used to sleep anywhere out and about and get his sleep wherever he could and wanted, but Rohan doesn't sleep very well when we're out and prefers a proper bed where he will sleep for a good hour or so (I have to often wake him up from naps as it goes over his feed time sometimes!)

His weaning is going pretty well, we're working up to the three meals a day, but it's just such a different process from what we did with Theo that I feel like a complete novice again. (I'll share a little more about our weaning journey soon!) But he seems to be slowly putting weight back on, after a month or so of sickness that led to a pretty big drop in weight. For me the feeding and weight gain is the thing that causes me most worry. Mainly because it's everyday, and a constant worry that he's going to be sick and all that time spent giving him the milk and food will be wasted and just making sure he's getting all of his feeds in. Luckily over the summer I had an extra pair of hands as Rob was off for a good chunk and I really feel like this helped get him back on track, that and the sea air and being cold free! Now I'm just hoping to get back into a good routine now that Theo is back in school, and I plan to slow down my days and just try and manage a good routine. Everything is so much more regimented this time around, the amount of fluid he has to have, the feeding times, the weaning times, the nap times. So much has to stay constant and following the right schedule, if not it all gets thrown off. Which is obviously not easy when you have a five year old in tow and to wear out.


 So with the bigger medical problems we are very much sitting and waiting once more. We're not due to see cardiac or respiratory for a while now, same as his hearing. We're seeing his talipes specialists tomorrow to see how his feet are progressing and I guess to discuss the next course of treatment, whatever that may be. We have also been seeing a physio to help with his general development, and that's been going really well.

Next week we have a biggy though. Rohan has to have another MRI scan on his brain. Back when he was in hospital he had one there to try and see if there was anything that might show why he was having apneas. Whilst they didn't find any evidence for that they did notice that he'd had a small bleed. We weren't told much at the time, and it was only a month or two ago that we finally met with the neurologist to discuss the results a little more. Whilst at that appointment things seemed ok, I think on discussion with another consultant it has been decided that they want another look, to see if any more bleeds have occurred or why they might have happened. I'm not sure what it could all mean just yet, and again I'm trying not to let myself think about it too much, but I am scared. I'm scared of having to sign that form to say we agree for them to put Rohan under general, with all the risk. I'm scared of him being ok, of the results and what it could all mean. But I just think it's always going to be this way, one thing at a time.

But for now I think I'll leave it there, there's probably a million things that I've forgotten, as I've left it way too long in between as usual!


2 comments :

  1. Hi Abigail. It's lovely to hear an update. I think its great that you've had a well deserved break with your precious family. You may not be ready yet to speak to other mum groups but the fact that you feel able to write your feeling down honestly is good. I hope Rohans forthcoming appointments go well and you get more answers. I think you are a very strong mum and all those feelings you have described are completely normal and to be expected. Your right though that when things dont seem great it's true that it just seems to come in neverending waves of bad luck. Im sure its because when it happens as humans we just sometimes feel overwhelmed and can't see the wood for the trees. You're doing great! Keep up the good work. I hope Theo settles back into schhol ok and you get into your routine. Take care x

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  2. I understand that feeling of not wanting to "admit" the condition. With Ellis, you would never know there was anything wrong with him. Cystic fibrosis makes it hard to gain weight so he is slight and when people comment on it,it stings.

    I also know that feeling of mentally trying to fight resenting everyone with "normal" babies. I don't want to be a bitter person but sometimes it is exhausting.

    And yes to the regime! I was so relaxed with my first byt with Ellis all food intake is monitored and scrutinised. But again it reminds you of what your life should be like.

    Thanks for writing this - i have found it strangely comforting.

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