This is a text (with spellings corrected) that I sent at the end of the 22nd April 2014:
“Apologies for the mass text and also to those whose messages I have ignored. Today has been something of a horrible day. We are now pretty sure that Oscar cannot cope without his ventilator, which unfortunately means we are out of options. No decision has been made about when we will let him go yet, but we would like to be alone with him then. If you would like to see him before that happens we would invite you to visit tomorrow if you are able.”
I wrote it, like many of my blog posts now, in one go. I didn’t re-read or check spelling or grammar, I just wrote exactly what I wanted to say. I was not strong enough to have that conversation with people in person. I wouldn’t have known where to begin talking.
At the time I felt guilty about sending that information by text, but now I realise that I did it in the only way that it was possible for me to do so at the time, and I am okay with that.
(On the evening of the 21st we moved bays in the PICU again, back to the higher dependency bay. I’m not entirely sure why this was, but it may have had something to do with Oscar’s condition not improving, and them wanting more staff around him. If the photo angles look slightly different, this is why.)
This morning we found Oscar wrapped like a burrito.
Prior to Oscar being on the ventilator, he hated being uncovered. He protested loudly when his clothes or blankets were removed. After his surgery, and as time went on, he did a complete 360 and got annoyed when he was wrapped up!
This was likely because being a baby burrito meant he wasn’t able to get into mischief and start pulling on things, and probably the exact reason the nurse had wrapped him!
His Mummy of course, was a push over and was happy to let him be uncovered, and then have to watch the little cheeky thing closely:
April 22nd saw Oscar’s second attempt at coming of the ventilator. This time we were pretty sure how things were going to go. We knew he likely wouldn’t cope and would have to be reintubated. We knew from last time that being put back on the ventilator would be a strain on him. That he would likely need fluids that would then put his kidneys under further pressure and that he would need to be sedated again. But, we had to try. We had to know that he couldn’t do it.
Being off the ventilator, meant more cuddles for me:
This time, as suspected, he lasted even less time off the ventilator, before he began to struggle. We could have not reintubated at that point. We could have just held him, and loved him, but we weren’t ready. We needed to have that talk with his doctors first, and for us to choose the right time.
When we were waiting in the corridor while they reintubated Oscar, I sent the text that I’ve put at the top of this blog. That was the point that I was completely broken. That is when I knew for certain that there were no miracles, that we had exhausted modern medicine. That our borrowed time with Oscar was running out.
When we went back in to see Oscar, I took this photo:
This was my cautious photo. One that says, I am too scared to get too close, because I can’t bear that we have to decide when to let you go. This was the photo I took when I wondered if I started trying to distance myself from him now, it would hurt less when we had to make that decision. I was terrified of that decision. That we would have to say, yes you can let my baby die.
When I was pregnant and we got Oscar’s diagnosis we were offered a termination. We were given the chance then to let our baby go, and I couldn’t do it. I could not make that choice to end his life. We knew the chances of loosing him during the pregnancy or birth were high, but I was ready for that. If he passed away then it would be because he couldn’t survive. It felt like it would have been his choice. I felt that I would always have known the outcome of the story. If we had chosen termination, I would always have wondered what would have happened, could he have survived?
And then, sitting by his bed I was running that same conversation through my head (sitting in the PICU you talk to yourself a lot!) Had we done everything? Could we choose the time and place to start letting him go, and yet still feel like we knew the end of his story?
I did make myself move closer to the bed and take a couple more pictures:
I think what gave me the strength was knowing that we hadn’t reached the end of his story yet. That we still had a little time, and we still had the chance to make a few more memories. I also remember thinking that Oscar didn’t know what was going to happen. The PICU, tubes and wires were all normal to him, and as his mother it was my job to make sure that we maintained his normal for as long as we had left. Before Oscar was born, we vowed to love him and cherish him for as long as we could….we thought that would be minutes and just because he had other plans, it didn’t mean we changed ours. For whatever short time we could keep Oscar now, we would do everything in our power to let him know he was loved.
Although we knew the impossible and unthinkable decisions that the next day or two would bring, for now Oscar was still here and that was a very positive thing.
What you cannot see in the photo of me holding Oscar us how much I was shaking and how fast my heart was beating. I was terrified. Even though I’d been told that if he struggled, they would reintubate; that this wouldn’t been the end, I knew there was a risk that they wouldn’t be able to do so. I also knew how unwell Oscar had been after that first reintubation, there was a big risk of the same thing happening again. As much as I loved every chance I got to hold Oscar, holding him at the point when he was so vulnerable was terrifying. The terror was something I would have gone through as much as was needed for Oscar.
A doctor spoke to us that night, explaining what we already knew. While I wanted to hear what they said, a part of me just wanted to not listen. I imagined that if no one said it out loud, that maybe it wouldn’t be true. That maybe I wouldn’t need to hear that Oscar would never breath without that ventilator.
Oscar was sleepy when we left the hospital this night due to the sedation needed to reintubate him. I imagined that the next day he would remain sleepy and may end up fluid overloaded again.
There was a photo I didn’t post in 2015. It was taken between the “cautious” and “getting closer” photos above:
It’s nothing spectacular, but it did remind me of how Oscar liked to rest his toes on things. Also, that gap between his big toe and other toes? I loved that! (That’s his duck comforter he was stroking with his toe by the way!)