06 February 2016

Four weeks

Oh Rohan, what a journey we've been on already. 

I know I haven't actually been around on the blog that much, but those who follow me on Instagram will have seen my updates on our progress. But I just wanted to use this space here to talk a little more about how the journey has been for us, if I can. 
So Rohan is four weeks old. It's flown by, I can't quite believe that those newborn days are almost over and that he's growing and changing so fast. I can't even quite remember what those first days and weeks were like. We've been through such an up and down journey already and I know that it will continue to be like that for a long time.

I don't know really where to start with it all, my emotions go all over the place regularly and sometimes I feel like I'm dealing with it all and sometimes not at all. For the most part it's the waiting and not knowing that is killing me. I'm someone who likes to plan and know to some degree what is going to happen in the near future (I know you can never actually know) and all this uncertainty seems like too much. I feel as though I'm putting huge amounts of pressure on myself and the idea that going home will magically make everything better, and so therefore every step back feels like a huge blow and further away from my goal. In reality we don't know when we're going to get home, or what it will even be like when we do. I don't think everything will be magically normal, and that Rohan will be a 'normal' baby when we do, but somehow that's what I've been aiming for. When we're at the hospital just spending time with Rohan everything seems relatively ok, we are enjoying getting to know him, becoming more confident in caring for him and of course falling more in love each day. But when we meet with the doctors it usually all sinks in a little, and my goals and hopes are broken and it feels like I have to start all over again, accepting and learning how to deal with it all. Mainly I just need to try and stay in the present, try and not put too much pressure on myself or the idea of getting home and just taking things day by day.



I don't know really where to start with it all, my emotions go all over the place regularly and sometimes I feel like I'm dealing with it all and sometimes not at all. For the most part it's the waiting and not knowing that is killing me. I'm someone who likes to plan and know to some degree what is going to happen in the near future (I know you can never actually know) and all this uncertainty seems like too much. I feel as though I'm putting huge amounts of pressure on myself and the idea that going home will magically make everything better, and so therefore every step back feels like a huge blow and further away from my goal. In reality we don't know when we're going to get home, or what it will even be like when we do. I don't think everything will be magically normal, and that Rohan will be a 'normal' baby when we do, but somehow that's what I've been aiming for. When we're at the hospital just spending time with Rohan everything seems relatively ok, we are enjoying getting to know him, becoming more confident in caring for him and of course falling more in love each day. But when we meet with the doctors it usually all sinks in a little, and my goals and hopes are broken and it feels like I have to start all over again, accepting and learning how to deal with it all. Mainly I just need to try and stay in the present, try and not put too much pressure on myself or the idea of getting home and just taking things day by day.

So much has changed over the past few weeks, and really Rohan has done so well. We were out of intensive care after a week and a half, and things looked like they were going in the right direction. For quite a while the cardiologists have been waiting and watching for his duct in his heart to close, to see what would happen with his aortic arch and whether it would narrow significantly to require surgery. So far, and now they are pretty certain that it hasn't done what they thought it would, and hasn't actually narrowed enough not to work properly. Which is all good news. We thought initially before he was here that he would require some sort of surgery within the first week of his life, and then recover afterwards. So whilst it's great to know that he doesn't need surgery immediately, potentially at all, there are other problems. Mainly his breathing. Since the day after he was born Rohan has needed support to breathe, this was at first with a CPAP machine which delivered a pretty strong flow of air up his nose, to now being on an Optiflow machine which is much calmer. He's been weaned right down a number of times to just receiving air without extra oxygen and to a very low flow and has even managed to be off it completely for 24 hours or so, twice. Then he desaturates and becomes less stable. They're still unsure as to why he needs it at all. He's been having episodes of breath holding and they're concerned about this. We're awaiting input now from the respiratory team to see what may be causing the issues. 

Something that is also going on in the background is the genetic testing. He has a number of features which they think are all linked and are waiting for results from tests. This is the thing that came as a major shock to us, and really hit me hard. So much so that we asked not to be told any speculation as to what it may be, before they knew for sure. I'm aware that this could take weeks, if not months, maybe more. It seems pretty certain that he does have a condition that is linking all his problems though. To us this was pretty hard news to digest. We had the amnio tests whilst I was pregnant, and thought somehow that because we got negative results that this meant we were in the clear, that there were no other things he could have. To be honest it's not something I try and let myself think about too much as I'm not sure I can take it at the moment. There's already too much to think about. But at some point we will hopefully receive some sort of diagnosis so that we can start to think about how the rest of Rohan's and our lives will be affected by it. It's not going to be easy that's for sure. 

I feel pretty angry a lot of the time, I feel jealous, I feel it's unfair and I just don't understand how it can happen to us. I know it's probably not the best way to be, but I just can't help feeling like it could have so easily been different. I would never wish this on anyone, but I can't help feeling like it is just so unfair it happened to us. It could have so easily been a completely normal pregnancy and Rohan could be a healthy child. Why did it have to be us? Why have we been chosen to be on this journey, to experience all of this? Of course we love Rohan, and I wouldn't change him being here, and he will be who he is, but I do wish that he was healthy. I wish that none of these problems were here, and that we didn't have to worry about him, that we could have him home and experience the all the normal emotions of adding a new member to our family. I'm worried about what the future will bring, how we will cope with a genetic diagnosis and what that will mean for our family and how we will move forward. It could be life altering, and we will have to change our views of the future. 

I'm scared beyond belief about what the future holds, and above all I'm grieving the loss of what I thought we would have. Our perfect family of four, another healthy child, another normal parenting journey. But this is where we are. This is what it will be, and this is the journey that's been laid out for us and one we're going to have to take no matter what. 

Oh Rohan, you lovely little thing. 

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