Ellly

The last three months have been tricky… all of the baby/medical stuff of the day to day aside, this whole time I feel like I’m still coming to terms with the idea that I’m raising a special needs child. A disabled child. It’s a concept/reality I’ve been mulling over while my everyday unfolds around me.

For a long time I ignored the future possibilities, my baby was beautiful and you’d never know he had a horrid metabolic issue. He was just a little baby boy and if no one mentioned anything about disabled futures I could live in the happy denial bubble indefinitely, and I did. Right up until we were back in hospital. Then we switched between no future with horrid end of life directives and whatever future would be allowed to us once the seizures were done messing up Kai’s brain. It was made clear that damage was being done with all his seizures.

When we came to hospice we were shown what that second future might look like. There are some severely disabled children here. No one asks or tells about diagnosis’s. There are enough children here in wheelchairs, who are nonverbal and different. Disabled. Children with special needs. And it’s difficult, facing them at every meal, in the corridors, with the different noises and teeth grinding and the drool. The odd movements, the vacant stares, the different facial expressions. Almost all the nonverbal kids are either eating paste or fed through pumps. They’re talked over the top of, or when they’re talked to, it’s in a funny sing song rhetorical way. And every time I see them, I think this is our future.

It took a three days or so at hospice before I stopped looking away like I would have in the before. Before, while I was out and about, if there was a disabled child in a wheelchair I would have said it was rude to stare and averted my gaze. Now I know it wasn’t that it was rude at all, but that I was uncomfortable. I was uncomfortable with those less able than myself. Shame on me.

Now I greet these kids by name, and I talk to them. I ask about their days and I study them, while I wait for a response. Sometimes I get one, a noise, a movement. Sometimes I don’t.

I watch their parents, who laugh and mop up the drool and talk and sing and love on their kids so hard. The parents here are joyous, like they’ve taken it all in their stride and are doing the best they can by their kids. Don’t get me wrong, I’m sure there is a difficult side, but here at hospice when there is so much help and support respite parents are joyous with the time and help and the break.

I’m still coming to terms a very very different world than what I imagined. Before Kai was born I’d planned to go back to work. Letting go of that plan, the one where Kai is healthy and I can go back to work was difficult. But this week I emailed my accountant to begin the process of closing down my company. I stopped drawing a salary. I closed off all the services I won’t be using. And I hate this, I hate that I’m not earning, that I’m not supporting myself independently or contributing financially and having to rely on Sam for money. I’ve had to swallow my pride and recognise that this is what’s best for our family, that Kai’s needs go over and above a typical 3 month old, and he will forever need help. That this phase of intense caring is not temporary, he will not grow and become more independent. He will forever need me to be his carer.

And so I filled out the 30 page form for the disability allowance. The first question took me a good day or two to answer. It asks if we’re applying under special conditions. If, according to his doctors, whether his disorder is terminal and is not expected to survive the next six months.

I ticked the yes box, at the urging of our nurses. I felt like I was betraying Kai and my hope for him. The next 29 pages were equally brutal. Each question asked for extreme detail as to why my son was disabled. And with every question I answered the denial bubble took a beating. By the end of the form it had popped, and I was exhausted, and sad. So so so sad.

Accepting our reality and our future, grieving our dreams for our son, and living each day as it comes and no more has been horrid. I’m still wrangling with it, to be fair.

Pragmatically I know that I need to get through this dark patch to the other side, where I can move forward and do all the things I can for Kai, to improve his quality of life.

Emotionally I’m not there yet.

Since Kai has woken up he’s pulled his NG tube out four times in three days. We’ve had to mitten his hands to keep him from yanking it out. I struggle, because I can’t imagine the tube is pleasant. He gets his feed pumped into him, 140ml of milk over an hour and half, followed by a 2.5 hour break. He’s so frustrated, when he’s hungry he lets you know, but he’s so unsatisfied by the slow dribble. He can’t suck in a coordinated fashion and we worry that he’ll aspirate himself so he has the tube.

Every now and then we’ll try a bottle, but he struggles with that. Sometimes he’s fine, sometimes he’s not. And until he can be consistent with the bottle, he must have the tube for his meds.

He may always have a tube. We’re beginning to think about a g-tube. A tube directly into his belly. I’m pretty sure it’ll be easier and more pleasant for everyone, though it’s definitely an idea we’ve had to come to terms with. In the beginning, I was determined to get him home from the NICU so I could pretend that NKH was some terrible terrible nightmare that we could shake off. And for three beautiful weeks, it was. Sure there was the daily meds, but it wasn’t this. It wasn’t 24/7 nursing care. With the feeds and pumps and syringe drivers, with the four-six hourly meds and hourly checking of his subcut – the needle his has in his leg so they can pump anti epileptics into his body around the clock.

I can’t change any of those things, and I’m sorry that when Kai pulls out the NG tube we have to hold him down to put another one back in. Still, every time he does it I want to high five him, and silently cheer him on for fighting it. Everyday, he fights.

He’s getting pretty good at getting the mittens off too. You go little guy.

PS – those cheeks without the tube though! 

Today we bundled our little guy up and went to see our metabolic consultant and to get bloods. It’s been a while since we’ve seen our consultant guy, but I won’t lie, I was disappointed.

NKH is rare. So rare. Our metabolic guy has a kajillion rare metabolic disorders to worry about, and we are one of many.

Originally, I wanted our metabolic guy to be our hero. To be the consistent doctor guy in a world of a kajillion consultants, the guy who would help us manage our NKH day to day, to slow any deterioration and halt the acute episodes, who would have all the answers to our questions.

He doesn’t. He doesn’t because there are no answers. He doesn’t have a magic wand. He doesn’t have the time or the energy. It’s gotten to the point, where three months in, I as an NKH parent know more about how to manage NKH than our metabolic consultant. I am the expert. And I know this because he came right out and said it. While NKH is small segment of our metabolic consultants job, NKH is our life.

But I’m scared to be the expert. I’m overwhelmed with the enormity of it. I feel like I can’t possibly know enough or be enough, that I will do anything and everything I possibly can for my little guy and it won’t be enough. That he’ll suffer because of my mistakes, because we can only move forward by trial and error now.

Like how my decision to go ahead with 8 week immunisations put kai in hospital. Or by not insisting on two weekly glycine bloods we had a six week hole where we were filling Kai’s body with meds willy nilly, instead of with data and intention.

I don’t feel worthy, or capable or enough to be the expert that Kai needs, and I’m scared to be the expert, and angry that our metabolic guy has been found lacking (not his fault) in what we hoped him to be.

Don’t get me wrong, I will and have stepped up to focus on Kai and NKH. To read the studies and fight the kajillion consultants for what I think is necessary, but I’m overwhelmed with the enormity of what lies ahead, and I worry that I’m not enough. It’s like needing a chainsaw to chop down an ginormous tree and all you have is a butter knife. That’s how I feel about me being the expert, and I feel like even my best causes mistakes that cost Kai dearly.

To put it clearly, here is the massive tree: my baby suffers daily. He is not a normal, happy go lucky three month old. He has seizures that cause screaming fits and comas. We pump him full of meds that are painful for his little belly. He has a tube down his nose for feeding, and a needle permanently in his leg for 24/7 meds.

Even small developmental things: he doesn’t smile socially, or babble. His gaze is odd, he can’t hold his head up, he doesn’t reach for things. Right now he doesn’t even have a coordinated suck like he used to. And sure, with time, physio and help he may gain some of those skills but regardless, my baby has a rare metabolic disorder and suffers every day. My babies disorder is terminal.

Putting all the raw emotion out there plain: I feel too small, and too powerless to be his expert. I’m scared my best may not be enough for him, and I worry that he will suffer when my best is all he has. I worry I’m a butter knife when I need to be a chainsaw.

I know I’m not alone in this. There is a wonderful community of NKH parents on facebook. Some of them are crazy, and some have courage I can’t even understand. But a lot of them are smart and amazing and they’ve been where I am. I know I’m not alone in this (I found my tribe) but that doesn’t mean I don’t feel all the things I do.

So. We went and saw our metabolic Consultant and I was disappointed. He is not the hero or expert I hoped he’d be. Turns out I have to the chainsaw hero, and I find myself lacking.

Edit: Sometimes when I think on this, I remember something that another NKH Mum said. I’m grateful Kai came to us, for a while there was a lot of ‘why us?’ but now I think of all the people I know, and how they live their lives and the choices they have made and sure, some of them I think could do what we do, they could live the special needs life and do their best by a special needs baby. But for a large chunk of people in my past, I think thank fuck Kai came to us and not them. Thank fuck.

He pooped!  it’s ridiculous how happy I am about that, even if Kai seems nonplussed about it.

Kai’s getting more awake with every day. He was a bit less dopey today, his eyes a little less heavily lidded. It’s so nice to see him have proper awake/asleep times. Nice to see him wriggle a bit more. He’s not yet moving his legs like he used to, but his arms can now put his fists within reaching distance of his mouth, much to his delight.

A few days ago it was clear my milk supply wasn’t able to keep up with him. We’ve used up the frozen stash, so I’m power pumping, and when I’ve pumped enough he has it, and when I haven’t we do half breast milk, half formula. However with this change (and him waking up a bit) has meant he’s not pooped. He hasn’t pooped in three days. He doesn’t seem uncomfortable, but my little guy used to be a champion pooper, pooping every 3-4 hours or so. Three days is definitely unusual for him. (Also, the pre-mum me would have been so unimpressed about sharing her hypothetical baby’s pooping habits. The post-mum me is obsessed, and sharing poop habits seems the least worrying of things to share).

Anyway, the hospice has a therapist here who does baby massage. She filled up a cushion with warm water, and we lay Kai out on it. He went to sleep instantly and had a lovely half hour baby massage. It was pretty lush, actually. He was so so relaxed. I was too, but I think it’s because there was some lovely calm music playing. I almost went to sleep sitting up next to him. I’m glad hospice has all these things available for us. Even if it doesn’t help the pooping, it was such a nice thing to have do. 

We possibly were a bit ambitious, but as Mikaere was more awake we took the opportunity to take him swimming. It’s something I’ve wanted to do since I was pregnant with him, and I wasn’t sure with all his hospital visits and illnesses whether we’d ever get the chance.

They have a pretty nice pool here at the hospice, where the air is as warm as the pool so it’s not too chilly when you get out. The nurses are keen to go the extra mile for us so we can swim, and there’s music and all sorts of floaty things. There was a small matter of his two ivs and his NG, but we put a bung on the end of the NG, and dressings over the midline and the subcut, wrapping the drivers up in a towel on the side and off we went.

We did our best to keep the midline out of the water, floating his arm on a floaty thing, but oh. Oh my days. It’s been a while, but I was so so happy. He seemed to enjoy it too, kicking his legs a little. He was wide awake the whole time, and cried his little kitten cries when we got out.

Oh my little guy, there is something huge about doing the things with you we thought we’d never be able to. Our dreams for you have gotten much smaller, but I’ll take the tiny wins. Swimming, I’m so so glad you were able to experience that. So so glad!

Also, our guy has crazy chipmunk cheeks right now. He’s put on a lot of weight and as he wasn’t moving so much before (he had two states: seizing or sedated) it’s all gone straight to his cheeks. The difference from before we went into hospital and now is crazy. I won’t post a picture, but he has the most beautiful thigh rolls I’ve ever seen!

 Pre three month curse cheeks

Yesterday’s cheeks

Kai woke up a bit today. Opened his eyes (!!!!!!!!), and looked around. His gaze wasn’t exactly a normal baby gaze, but I’ll take it. He opened his eyes!!

To be fair, he looked like a baby on drugs. Super dopey, eyes heavily lidded. Which he is, really. He’s on so many drugs so that he woke up today is really quite impressive. He’s also been babbling. Not a lot, not a stream of baby noises. Just the occasional sound but oh, hearing his voice!  I’ve missed hearing it. I cried when I first heard his little mewl.

There’s also been lots less seizures. We’ve been practicing baby massage and we discovered that with a bit of foot/head massage we could calm him and head of he seizure. So now he’s getting an awful lot of baby massage.

He’s also got a silly amount of wind, which we struggle with. He’s not really burping. Or pooping. I’m suddenly very very involved with the minute details of my babies digestive system. I’ve never been interested in his farts till now.

He’s a very different baby than he was a few weeks ago, before we went in. I can already see the beginnings of what the seizures and NKH has done to my little guy. It’s bittersweet, I’m heartbroken to see the deterioration but so so so pleased he woke. I’m hoping that as time passes he’ll improve and we can go back to being a bit more like we were. Fingers crossed!

PS You guys!! Thank you thank you thank you for the donations. They’re still rolling in and we’re so so so amazed at how much we’ve raised!! Also, for everyone that has shared our story or the just giving page, thank you. It means everything to us x

The hospice has shown no end of kindness to us. They’re constantly offering cups of tea, and feeding us copious amounts of food. Anything we’ve asked for they’ve tried to cater to, they’re so kind. They even offer us things we wouldn’t have thought of.

Today we took plaster casts of Kai’s hands and feet. It was an odd experience made darker when I asked if they do this for all the kids (only the terminally ill ones, was the straight forward response). Still, I enjoyed it.

We made up the mould mixture, and I held Kai’s hand while it was plunged into a ziplock bag with all the stuff. Slowly the purple mixture turned gummy, and solid. Like silicone. After a few minutes I was able to pull our hands out and tada, mould! We also did plaster casts of his hands and feet, and took his little fingerprints with magic ink (the kind that is invisible on skin, then after pressing to paper the print appears).

It was a lovely thing to do, but tinged with a little sadness, knowing that we’re creating remembrance pieces. Honestly, we’re holding onto every moment right now. 

Eeg results came back. It looks like Kai is having seizures all the time, even when it’s not obvious he’s having them. Oh my days. Devastated.