April 23rd, three years on 

As much as April 23rd was supposed to be about saying goodbye, it wasn’t a sad day.This was in part due to Oscar’s knack for doing things that couldn’t fail to make me smile at just the right moment. And Oscar, it seems still had a thing or two to show us.Remember Oscar hand? Well, today Oscar decided he was going to show us that he could still open his hand unassisted, something we were doubtful he could do:

 

So, him holding his hand in that funny position all the time? Apparently, just a party trick!

April 23rd was also about cuddles. Once we knew there was nothing medically that could be done for him, cuddles really all that he really needed. Oscar used cuddle time to perfect his suspscious and frowny faces:





He was puffy again, due to the extra fluid he had been given yesterday, and this meant that his tubes and wires were marking his skin more than usual. The white material under the ventilator tube is just a piece of gauze to stop the tube leaving an indent in his skin, it isn’t a dressing.

Oscar spent a lot of time on the 23rd with his eyes open:


I have my suspcions that it wasn’t actually me he was looking at in the photo:


but actually Tigger! Of course Tigger was being used to stop Oscar from pulling at the grey plastic “tree” that was holding his ventilator tube up. It’s, therefore, a fair assumption that he was just trying to figure out how to get his orange friend out of the way so he could reach the tube that he really wanted!

That blue soft splint on his arm is also stopping him from touching things he shouldn’t. He had a new line put in the left side of his neck the day before, and we really didn’t want to risk him pulling that out! So yes, my baby was in (soft) restraints!

You can just see in the bottom of this photo that some wires appear to disappear into his nappy. They actually don’t, but just go under the velco closure of it. This was a good way to keep Oscar from being able to pull too much on those wires.

By the middle of April 23rd, we had spoken to Oscar’s team of surgeons, consultants and doctors. They had discussed Oscar in a case conference and opinions were divided.

Some believed that we we had reached the end of the road. That his lung condition meant he could never come off the ventilator, and that the only option left to us was letting him go.

However, there were some that were still focused on the fact that at birth Oscar was breathing unaided and continued to do so for two(ish) days, something he shouldn’t have been able to do with his condition. The thought here was that maybe the pulmonary bands placed in Oscars operation were too tight and if they were adjusted this could help improve things. We were explained to that this was extremely unlikely to be the case, but it was a remote possibilty, that we could investigate. To do this Oscar could have an MRI which may give the doctors some more insight into what was happening. It was a tiny glimmer of hope, but one I held on to as I posted the following on facebook:

“Yesterday we thought we had reached the end of the road. Today the doctors had a discussion and want to run a few more tests because “Oscar is not behaving how he should with his condition” and “he has us puzzled.” Do they not know that Oscar doesn’t follow the rules by now!” 

Before Oscar was born we puchased two of the same sleepsuit in two different sizes. The plan was that he would be buried in one and we would keep the other. They were quite plain, with a subtle star pattern on and had matching hats. The tiny cute matching hats were a big reason we picked that particular outfit…the irony of this is not lost on me!

In the bag I had taken to the hospital on the 23rd, I had placed one of those outfits for Oscar to wear once he had passed away, thinking that we could need it. I packed the hat as well, but already knew that I wouldn’t be using it.

When we got back to our room on the 23rd I took the outfit out of my bag…

Today:

April 23rd is St. George’s day. Oscar liked significant dates:

Friday 13th – Initial problem detected with pregnancy.

Halloween: scan

New Years Eve: scan

St. Patrick’s day: due date

April Fools Day: Birthday 

and because of this I was convinced that St George’s day was the day he would die. I spent most of the day convinced someone was going to tell us: “now is the time we take him of the ventilator.” When we got the news that Oscar may have one last hope towards the end of the day, I was obviously pleased, but at the same time it was another emotional rollercoaster. It reminded me of day two, when we changed our minds from comfort care to seeing if he would be a candidate for surgery. Of course I would have done anything for Oscar to have a chance, but it just wasn’t the plan. When you think you know what is going to happen, when you are trying to deal with certain emotions and terrifying decisions and then someone tells you that you have a different option it’s hard to cope with. In my head I was dealing with: “Oscar is going to die today” and then someone comes along with “actually, maybe that won’t happen just yet.” I don’t actually have the words to describe what that feels like. 

The only thing I am glad of about all of this is that Oscar has no real awareness of what was going on. That for him, this was normal. This was the only life he ever knew and so he was never aware that life wasn’t supposed to be tubes, wires and hospitals. For him shiney heaters, a duck on his head and constant one to one attention was completely normal. 

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