This is some of my original blog post from 2015:
“I never thought we would still have Oscar with us 24 hours after his birth. I remember being awake at 5:25am on April 2nd and being so confused. He had made it to a day old, and that meant his birthday and the day he died would be on different days. That was never supposed to happen.
On that morning, I fed him, changed his nappy and his clothes. Three more things I was never supposed to get the chance to do.
An odd thing I remember from that second morning, is thinking that I prefered the light blue babygro from the previous day to the dark blue one. It seemed odd at the time worrying about what Oscar was wearing given that we knew he was going to die, but equally it seemed so normal. Thinking that our baby suited one outfit more than another.
Day 2, April 2nd ended with an ambulance ride to another hospital. We had to move hospitals to give Oscar that chance at the surgery that could give us a little more time with him.
In moving hospitals the biggest change was that our son went from being in the SANDS room being held by us, to being in an incubator in PICU.
Now, since his birth he had been moving towards dying, so I was quite surprised how much of a shock seeing him in the incubator was…it was like I suddenly realised “he’s really sick”, which was odd, since I obviously knew that.
It was also a big shock to the system for me to suddenly not be in control of what was happening to him. I had to wait until it was okay for someone to say i could hold him, and then I couldn’t just pick him up due to the wires. I had to wait for his nurse to hand him to me. Another thought I had was that I felt like a bit of a fraud having Oscar in the PICU. He only had a couple of lines in and a heart monitor. Next to all the other children in there, he looked so healthy. Obviously, again, I knew that he wasn’t, but I felt like the other parents would think we didn’t have the right to be there.
Crazy I know, but postpartum, hormonal, tired and stressed you think some strange things.”
The choice that had to be made on day two was basically this:
1. Carry on with comfort care. Love and cuddle Oscar, for however long he had left.
2. Go to the specialist hospital for tests.
Option one was so tempting. It was what I was expecting. It was what was supposed to happen. It was a decision that had already been made and it was what we had planned for. We had a funeral outfit picked for Oscar (it was actually with us in my hospital bag) and I’d researched how to register his death.
Option two was the choice we thought had disappeared before he was even born. What may perhaps surprise some is the second part of option two that I’ve not really shared. It was thought that Oscar would have the tests in London and then the consultants would reach the same decision as before he was born, that nothing could be done, and we would be transferred back to our original hospital or local hospice to continue the comfort care route.
Despite me believing, this is exactly what would happen, we still decided to take that chance. A big part of the decision was that having met Oscar, I wasn’t ready to say goodbye yet.
The other part was that I wanted to know how he was able to breathe unaided for so long, something we had been told couldn’t happen, because of his lung condition. Actually, this is something I never got the answer to, or at least any answer that wasn’t: “because Oscar does things in Oscar’s way.” And I’m ok with that, because as everyone knows Oscar’s way was always right!
The PICU was scary at first. No-one wants to see their child hooked up to wires and machines, even if you know they need them to have a chance at surviving.
Below is a picture I took on that first night in the PICU:
My original blog has some notes about the medical equipment at this point. I originally wrote about that to perhaps help other parents in a similar situation the future, but I realise now; I’d have no idea about many of these details if I hadn’t recorded them:
Medical equipment, day 2:
The clear tube visible in the picture was delivering fluids since he was now Nil by mouth (in case surgery was an option.)
Not visible is another line for dinoprostone. This is the medication that was keeping his ductus arteriosus open. Basically, this is an opening between two parts of the heart. It should close independently a few days after birth. With Oscar, it needed to stay open to keep him alive. If it weren’t for his lung condition, the surgeons would have attempted surgery to keep the duct open as part of re-plumbing his heart. Since that wasn’t an option, he needed to stay on the drug. I called Oscar’s dinoprostone his “dinosaur drugs” or “dino drugs.” I’m not ashamed to say, it wasn’t the only alternative name I made up for the equipment that surrounded Oscar. Maybe, I thought it sounded less scary that way. (I realise it was entirely for my benefit since Oscar had no idea what was/wasn’t scary.)
He also had heart monitoring on at this point and a oxygen saturation monitor. He had the tiniest oxygen mask placed at the top of his bed, and it was turned on occasionally over that evening/night…mainly when he cried, as that caused his oxygen levels to drop (common in HLHS babies.)
The picture below is slightly blurry, but is still one of my favourites. Oscar looks quite chilled, obviously having no idea that his life wasn’t “normal.”