07 April 2016

A Rohan update

So I thought I would finally get round the writing a little update on this sweet little face! I haven't really written much about what has been going on since we brought him home about five weeks ago. I can't actually believe he's three months old. How did that happen?



He's still a very happy and contented baby, and we've seen him become so much more alert and interacting with people. His face lights up and breaks out in a big smile when he's being talked to and he even manages little gurgles and what sounds like a little laugh. One thing for sure if that cuddles are 100% his favourite thing. I think if he could lie on someone's chest all day he would, nothing makes him happier. He's getting pretty strong too, and is just about holding his head up with a little wobble here and there. I can't remember at what stage Theo was doing things, and actually it's probably a good thing as we know Rohan won't really be hitting the milestones at the same rate, and for now I'm ok with that. 

In terms of his medical side we've had a few clinics and updates including a heart and genetics. Firstly he had his first outpatients cardiac appointment with his consultant. When he was discharged from hospital there wasn't really any plan for what he would need and it was a very much wait and see what happens sort of thing. When the consultant had a look at his echo she thought that it was possible that he may need to have some sort of surgery in the near future, but what type she couldn't say. His duct (that all babies are born with but which closes soon after birth) is still open slightly and on the bigger side, which she thought might be causing extra pressure on the heart, so it might have to be closed. His aorta still hasn't narrowed as much as they thought it would, but is what they call "tortured" meaning it's not the regular arch shape, in fact it looks like the number three.  She's not sure whether that will need surgery either, but is wondering whether this could be fixed a little with the surgery to close his duct. Again we're just waiting for his case to be discussed at the big cardiac meeting and for them to review what they feel the best course. I'm not exactly sure how I feel about the prospect of surgery, I think because it's still only a concept and not actually happening yet I haven't let myself feel or think too much about it. 

His physio for his talipes is going pretty well. His still having his casts changed weekly, but his feet seem to have responded really well. Like his heart though his feet aren't exactly typical and they're not 100% sure of the full plan for his treatment. Currently I think we're coming to the end of the weekly casts, where they manipulate each foot into a better position and try and open up the creases on the bottom of his feet. So the next step is to have an ultrasound and x-ray of his feet to check whether the anatomy of his feet is normal because of his syndrome. If all is ok then they will most likely perform a tenotomy where the cut the achilles tendon at the back of the heel and then set his feet in plaster once more and wait for it to fuse back together in the correct place. Then it's another wait and see I think as to what will happen next!

So genetics, the appointment I was dreading, but didn't really need to. I feel now that it was good that we looked up his potential condition before it was officially diagnosed. I had a few terrible really low days, and since then it seems to be ok. It is what is it and none of us know what the future will be like. The geneticist told us some information about what happened to his gene, and even though it's hard to properly understand she did say to us that he doesn't have a full deletion of the particular gene, just a stop code. Which means that hopefully he is on the milder end of the spectrum for his syndrome. So whilst we still don't know how he will be, to know this is reassuring. I think at the moment because Rohan is still so little we've not really noticed any major differences in him compared to other babies, that of course is aside from all his other problems such as his feet, the feeding tube and the need for oxygen. He doesn't particularly look like he's got a genetic syndrome and who knows how his features may develop. I guess until he perhaps starts being further behind in milestones then we might notice a little more, but then again maybe we won't. He'll just do things in his own time and in his own Rohan way.

I've had quite a few people ask me now whether he was premature I guess because of the oxygen and I'm still unsure of what to say really. I don't really want to blurt out all of his medical history or the fact that he's got a syndrome because I just don't know how to put it or the best way to say it. Most of the time I just say he needs a little extra help at the moment, and people seem to understand. We're hoping he doesn't have to remain on the oxygen for too much longer, or even just have it at night as the constant lugging around of tanks is annoying. It's hard not to be able to just pick your baby up and walk around with him without having wires dangling around your feet or reaching the length of the wire. Everything takes organising and pre-planning, a trip to the shop takes twice as long (longer than usual with a baby!) with the amount of things we need to take with us. It's just not as simple as putting him in the car seat with his change bag and off we go, it takes multiple trips in and out the house to finally have everything together. We have a sleep study coming up soon where he'll be assessed once more for the sleep apneas, the main reason for him being on the oxygen. After they review the results I guess they will make a decision as to if they're going to start weaning him off or how long he might need to stay on it. 

We're still feeding him with his NG tube and a bottle. I've pretty much given up trying to get him to latch onto the breast, in fact I can't remember when I last tried. I'm still pumping but the time I have for it is slowly diminishing as it's just so impractical when we need to go out and therefore my supply is definitely dropping. I keep thinking to myself when will I stop, but I guess I will just let my body decide when it's going to stop making the milk, and I know it will make life easier when I do, but for now it's hard to let go of it. He's doing a bit better with his bottle feeding, sometimes taking half his feed, but that only seems to happen once or twice a day and sometimes he's just not interested at all. It's frustrating to say the least and I just wish that this one part of our life was a little easier. 

But here we are, that's pretty much all that is going on. I know this may sound negative towards the end and it's really not all negative all the time, but I can't pretend that a lot of it is a bit shit. I wish it wasn't the way it was, but it is. But I do love spending the day with my little babe and am relishing the cuddles as I know they won't last forever. This holiday has been lovely to see Theo spend more time with Rohan too, and my gosh they do love each other! But that is a tale for another time! 


(Yikes, well done if you made it to the end!)

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