Most of the blog posts I am editing and republishing I wrote a year after they happened, but April 3rd I originally wrote about in May 2014, just a month later.
April 3rd 2014 was a day of waiting and hoping. It was the day that Oscar has a whole host of tests done, and eventually a team of doctors made a decision about whether he would be a candidate for surgery to potentially lengthen his life.
Before Oscar was born, we were told that the surgery wouldn’t work. That his odds of serving it were “close to 0%.” No one even told us 1%, just close to 0.
I assumed this meant that we had very little chance of anything having changed. That all these tests would still lead to us being told: “sorry, there is nothing we can do.” And, the longer we waited for news that day, the more convinced I was this would happen. I think that having met and held Oscar, no matter what the odds we were given, I would have wanted them to attempt the surgery. While I was expecting a “no”, I was hoping for anything but.
Something that was hard about day three, was feeling like I wasn’t really in charge when it came to Oscar now. I had to ask to hold him, and being able to do so was dependant on him not needing to have a test done at the time. He also had continuous medical monitoring, which I didn’t know how to interpret. I was dependant on medical staff to tell me he was doing ok. I’d only been a parent a short time, but it was very hard to accept giving control to someone else.
Oscar also become nil by mouth, which means I was no longer able to breastfeed him. Although he was being hydrated via a drip, it was hard to see him obviously wanting more. We gave him a dummy at this point, and while he liked it, he wasn’t fooled!
He was also no longer able to wear clothes, simply because to keep undressing him for every scan would have been a pain. He spend day three wrapped in a mostly pink pillowcase:
By the evening, we were told that Oscar was a candidate for that risky surgery. I knew that no matter the risks, we had to try. Oscar was a fighter, he had more than proven this so far. Besides, we were being given the chance of more time with him, who would say no to that?
Something parents of children in the PICU are encouraged to do is start a diary. They advertise it as something the child can look back at when they are older, but for people like me it ends up just being another memory to hold.
Oscar’s diary doesn’t have that many entries, it wasn’t something I was that keen on writing in myself. Ironically that was because I didn’t want other people reading what I was writing about Oscar! I do treasure each entry in it though.
It was stated by Oscar’s nurse for the day, Ros. Ros had just had her hair cut and donated to a charity that makes wigs for children. We had a conversation about me doing the same. I still haven’t done it; maybe one day. Anyway, I’m getting off track. Ros’s entry is below:
I am very grateful for the staff who took the time to write in Oscar’s diary. Because of them I have additional memories and photographs. When I wrote my original blog, his diary also played a big part in filling in the details between the photos I took.
This is a photo taken by one of Oscar’s nurses on the night of April 3rd. No one gave Oscar the memo that he had a big day tomorrow and really should have been sleeping:
I rarely mention regrets since not owning a time machine means I can’t change them, but one thing I wish I’d seen was Oscar’s first proper wash. This happened overnight on the 2nd/3rd and was done by his nurse. As much as I appreciated having a clean baby, I wish I’d been able to see it/be a part of it.
I did love seeing Oscar’s fluffy hair the next day though:
April 3rd was the last day Oscar was relatively intervention free and almost the last of the pictures where you can overlook the wires and medical equipment. From this point forward it’s probably harder for most people to actually see Oscar first and not the medical equipment.
The little button stickers on his chest are monitoring his heart. His medication remained the same as April 2nd.
This is also the last picture of his tummy pre scar.