I felt I had to make this a two parter, it was a lot to get through in one sitting, your bum would be numb, and your brain frazzled in the end. I should start with a disclaimer. I like doctors. I think they do amazing things, work tirelessly, often without thanks and with some upstart blogging their grievances. I know I couldn’t do better, and I also know that they are not as
obsessed interested in my child. In my work life I’ve been a negotiator, a people person, professionally I feel I can take a view on their people management skills. There’s got to be something about them being so bright to get through medical school that places them on the autistic spectrum. I should know, I’m married to an architect. Plus they’re really tired. I also have some lovely friends that happen to be doctors. You, naturally, are excluded.
So D-day, diagnosis day. I’ve already had the drive by diagnosis. But I’d weirdly been quite calm in that knowledge for two days. It’s just kidneys right? Not like his heart or anything. I’m sure would have made a brilliant doctor?! It had aways occurred to me that it was on his notes from the 20 week scan, so if they were really worried that there was some major malfunction it would have come up. I was asking the nurses whilst knitting at his incubator side- x rays and scans were normal, his general stats were good despite the alarming amount of infections and poor weight gain. So chilled that on that day I’d gone to the hospital with my mum and aunt, and told wolf to enjoy a day off. Relax. See you later.
When we arrived there was something odd in the air. Faces looked a bit more strained, banter was a bit light. My usual opener of ‘how is he?’ was met with a request to wait for the neonatologist responsible for Rufus that morning. Hmmm. Ah well, it’s just about his kidneys. Will I see him before lunch? I’m starving. He took a stab at explaining. Massive amount of protein in his urine, blood levels showing minimal amount in his bloods. What do you mean by massive. A lot, apparently. But kidney function is good, the renal consultant will come and see you this afternoon. Right, proper answers, that’s good. A hug from the nurse, you’re taking this really well. Wasn’t entirely sure what I was taking well still.
We had lunch, I called wolf in to the hospital, explaining as much as I knew but telling him not to worry. At last we might know the reasons why things were going a bit off course. There was a gnawing feeling that maybe I shouldn’t be calm but I tried to brush it aside- the hospital stint had already taught me to wait for answers before I reached a higher state of panic.
We went back to the unit, said our goodbyes to my mum and aunt whilst wolf and I would wait for the renal consultant. I’ll call you later, I’m sure it’ll be nothing to worry about. Calm face, let’s make sure that everyone else is still calm, look at my mum’s face- is she worried? A bit, but we’re all just bumbling along. Time to hook myself up and milk the cow, keep feeding, keep being his normal mum. The renal consultant’s here, Rufus’s mum is just expressing. I don’t mind if he wants to talk now. No shame, hospitals strip you of a sense of privacy. No, Mrs D. Uh oh, Mrs D is back. I’ve been Rufus’s mummy for weeks, I liked my new tag.
Being walked to the counselling room, wolf and I met glances. Fuck. This is serious. I can taste my heartbeat. Next is what makes this what my family can only still refer to as ‘That Weekend’. In most houses, that might be a raucous family holiday. Not in ours. Faces go a little whiter, eyes a little redder.
See now, this consultant. Round as an egg, a bit dishevelled. You’d maybe wrongly accuse him of having a jolly demeanour. Knowing him now, he is fairly jolly. He’s a paediatrician after all, Rufus loves him. That’s a bit unjust Rufus, if you knew. We were told the same information about the protein, but he could barely make eye contact. Lots of awkward gaps. Genetic tests. More urine and blood tests. Likely prognosis, we’ll have to see. Is it serious? Very. Life limiting? This was the game changer. You’ll have to wait and see what this weekend holds. Tears, choked. Looking back, things weren’t clear, he answered a question clumsily. But wolf and I both came to the conclusion in that instant that we were being told he was dying. Anymore questions? When you think that’s what you’re being told, there are no more questions for anyone else. Just intense pain. I wanted to tear off my skin, run away, scream.
They left us for some time alone together. You see, that also fuelled what we thought we’d been told. I apologised to wolf, what had I done to deserve this? But you aren’t really talking to each other, you’re just trying to work out what to do next. How will I stand up? How can I hold him, it hurts too much. After who knows how long we head towards the incubator. I’m numb, I need to leave the hospital. But I can’t leave Rufus. I want to snatch him, bundle him up in one of the brown paper bags we’d been taking his puke stained clothes home in. He was tiny, no one would notice. But I can barely hold him. Horrible thoughts flash through me. I’m scared I’m going to drop him on the floor, and it wouldn’t be an accident. I want to take this pain away.
This error contained very little comedy. Apologies for the misnomer at the beginning of the post. The nurses were assuming I was reacting to the news of the illness but not what we assumed was a prognosis, and that we were in an initial stage of grief. It perpetuated the idea. We left to go home. Phoning family in between sobs. Stopping every few steps to the car. Walking away was pulling at my now invisible umbilical cord. Everyone was going to come tomorrow, maybe it was their last chance. No more driving, we’ll collect you. As soon as you want to go in, we’ll take you.
There was no sleep, we were picked up at 6am. Ashen faced, still the story perpetuated. We never spoke the words, they didn’t clarify the truth. Who’s at fault? Mr and Mrs D, we’re both grown ups now, we’ll get the renal consultant to see you again, tell you where we’re at before the weekend. We’re allowed extra family members at the cot side. Rufus looks dreadful. He’s had his first protein infusion and the swelling has left his body, he’s so malnourished. His eyelids can’t shut properly as there’s not enough elasticity in his taut skin. He’s lost 10% of his already minimal body mass. They’ve put loads of clothes on him. It’s still real, very real. We were adding everything together, you could believe nothing else.
Outside with the family, trying to get food in us. Wolf managed some. I could just about suck a soft mint. They would leave us to talk to the consultant again, everyone in tears. My dad promising he would be brave for us. He didn’t believe that they were right, but he was crumbling. He was shaky on his solid ground.
Another meeting in another room with another consultant. Tell me what you think you’ve been told. I break down, wolf does the talking. The last sentence, we know we’re in a state of palliative care now. The doctor looks aghast. Why would we possibly think this? We explain. He nervously laughs, this is all wrong. He is very poorly, but he’s doing a bit better than we thought. His weight loss isn’t actually so severe. He’s nowhere near dying. I could kiss him. A proper snog. But why? How? Actually, I don’t give a shit. I’m now on the ceiling, elated. Different tears, a tinge of anger. But my boy. I need to see my boy. I can hear him telling us it’s a long road ahead, it’s a serious illness, but I need to get out of there to my boy.
There were many times after this where other diagnoses were thrown at us- mostly because Rufus was defying health expectations, but they wouldn’t let it lie. Christmas Eve was rudely interrupted by the lead renal consultant, who we’d eagerly awaited the arrival of as he may have some more conclusions as to Rufus’s condition. He merely came and recited old news but told us that they still felt dialysis was in his relatively immediate future, if only he would grow a bit better (he wasn’t at this time). Mostly they were worried that he was too small to handle many more infections. Again, what can at best be described as clumsy. Was he coming home? Not at this size. Super.
But that weekend. That made us hard as old nails and when the chips are down now, I often think of how that felt. I’ve revisited it to write this, and baby in the oven has just given me some belters of kicks. We’ll be alright, us Ds.