April 7th, three years on. 

“Oscar was supposed to go back to theatre today to complete the second part of the hybrid procedure, but it didn’t happen. His kidneys were still not working well enough, and his lungs were causing a bit of concern.Since before Oscar’s birth we had known that his heart condition would likely have caused a lung condition called Pulmonary Lymphangiectasia (if anyone is curious I can remember the name and i can say it, but cannot spell it.) This lung condition is basically fatal. If Oscar had it his lungs wouldn’t have formed properly, and it was because of this that he likely wouldn’t be able to breathe outside the womb. Now, obviously Oscar was able to breathe when he was born, so there was this small slither of hope that maybe he had avoided the condition. Why he was able to breath, we actually have no idea.

In the days that followed his surgery, he had many x-rays and opinions were a little divided on whether he had the condition. It was just possible that there was some other explanation for what was being seen on the chest x-rays. The only way to tell for sure was a lung biopsy, but he wasn’t well enough for that to happen.

So, we just had to “wait and see.”

For some reason I have just one picture labelled April 7th:

Oscar was supposed to go back to theatre today to complete the second part of the hybrid procedure, but it didn’t happen. His kidneys were still not working well enough, and his lungs were causing a bit of concern.

Since before Oscar’s birth we had known that his heart condition would likely have caused a lung condition called Pulmonary Lymphangiectasia (if anyone is curious I can remember the name and i can say it, but cannot spell it.) This lung condition is basically fatal. If Oscar had it his lungs wouldn’t have formed properly, and it was because of this that he likely wouldn’t be able to breathe outside the womb. Now, obviously Oscar was able to breathe when he was born, so there was this small slither of hope that maybe he had avoided the condition. Why he was able to breath, we actually have no idea.

In the days that followed his surgery, he had many x-rays and opinions were a little divided on whether he had the condition. It was just possible that there was some other explanation for what was being seen on the chest x-rays. The only way to tell for sure was a lung biopsy, but he wasn’t well enough for that to happen.

So, we just had to “wait and see.”

For some reason I have just one picture labelled April 7th:



It actually looks like he hasn’t moved place from yesterdays pictures, but we just prefered to sit on one side of the bed and waited until he was facing that way to take photos.

Note that the yellow duck is covering wires up…his soft toys were good for ensuring there were no tubes/wires touching his skin.

A handy tip for parents of NICU/PICU babies: tiny baby socks are also very handy for stopping wires touching delicate baby skin. I’ve been told they also work well as mittens to stop little hands touching things they are not supposed to. We never tried this though, I just prefered to keep watching his hands (and to take photos when he touched things, before moving his hands away.)

Actually, I don’t recall what day it was, but on one occasion Oscar did disconnect his ventilator when his nurse was assisting at the next bed over. This obviously set off some alarms and she came straight back over…I had already pushed the two pieces back together by that point though. He clearly didn’t like it that his personal nurse wasn’t giving him her undivided attention!

(I should note, he was never in any danger as he could breathe for short periods without the ventilator.)”


My plan was, when editing and reposting these, to add something more to each day. But, I underestimated how hard it would be to do that. Today all I can think that write is that I miss him and this is all so unfair, that I somehow have to live the rest of my life without him. That I got to be a parent for such a short time and then it was all taken away. And that all seems rather negative! And, I would have assumed that three years on those thoughts would have faded.

I am normally quite a positive person. I don’t see the point in dwelling on a past that you can’t change. But, with Oscar all I have is the past. If I want to think of him, I have to look back. And that is hard to do, while remaining positive. Yes, I have positive memories. Yes, I can think of him and smile. But, some days I’m just so lost without him. Some days I wish so much that things could have turned out differently. Some days I am all too aware that all the positive memories in the world will never be enough. That I will be forever wishing that I could have had more time, or that the impossible could have happened. 

And you know what? Sometimes I have to remind myself that having and expressing those negative thoughts and emotions isn’t a bad thing. That it’s ok to be sad, it’s ok to be upset and it’s ok to be angry. That is a part of grief and there is no timescale for how long grieving takes. 

And, sometimes, like yesterday, it’s enough to just get through the day with (mostly) not snapping at anyone and (mostly) not crying at work. Sometimes, it’s enough to just survive. And maybe today will be easier. Maybe it won’t. But it will happen. And I will get through it, because no matter how difficult, giving up isn’t an option. That wouldn’t have been something that be something Oscar would have wanted for me, if he ever could have expressed that. 

Continuing to miss Oscar is going to happen and that’s ok because, I don’t know anyone who could have known and not missed my gorgeous little boy:

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