Our Christmas tree is still up, with all the gifts unopened beneath them. Christmas Day was when everything nose dived. It definitely wasn’t how we planned to spend our first Christmas as a little family, and aligning what has happened with how I had imagined Christmas to be is just… overwhelming. Trying to understand where we are and how we got here and where to go next is impossible right now – we’re still just reacting to whatever comes our way. So we’ve left the tree and gifts and everything where they are. I guess we’ll deal with the leftover Christmas and everything else later.

It’s becoming increasingly clear how valuable and game changing a good nurse can be. We had one nurse go out of her way to accommodate us – working around hospital protocol so I could stay the night with Kai.

They rolled a hospital bed into Kai’s bay, right alongside his incubator. I changed into pjs and padded quietly through the dark PICU, Sam had already scooped him from the incubator and oh. Being so close to him, even if he did have all the monitors and wires, not having to leave him, having him so close, cuddled right next to me the whole night oh oh oh.

I used to take this for granted when he was at home. After the 3am feed I’d burp him and instead of getting out of bed to put him down in the crib, I’d slide him down between me and Sam knowing that in a few hours we’d be doing the 6am feed. Sam would wake and would tell me to put him back in the crib, but I never did.

I’m glad now, that when he was home I took the extra cuddles, having him within touching distance.

I didn’t sleep well, in the dark of the PICU there were beeps all night, people coming and going. There was someone else’s emergency that happened at who knows what time, my heart broke a little for them. And then there were the seizures. Oh the seizures.

They happen so often and go on for so long. We give break through med again and again and I hope, I hope his body finds the time to rest in between. I wonder though, how much rest, proper good rest,  he gets when he’s sedated like this.

Still, I’ll take every night I can with him, seizures not. I’m hopeful we’ll eventually get the seizures under control and he’ll be able to rest under his own steam. Fingers crossed.

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As always, we’re still fundraising for NKH research. If you’ve donated, thank you – genuinely thank you. If you haven’t and you’re able, please consider donating even just a small amount. It has such a profound effect on what research can be done and that ripples out to the NKH community. justgiving.com/mikaere-xmas

I’ve never had such distance within myself before. What I know intellectually and what I feel emotionally are worlds apart, and they appear at different times. We talked to a neurologist yesterday. We sat down with two doctors and a consultant and we discussed the plan for Kai and his not even close to being controlled seizures. We had that discussion where you leverage the long term (because he’s unlikely to have a long term) against keeping him comfortable.

See, the thing with seizures is that you stop them by putting the brain to sleep, with sedation. If we sedate Kai too much, he’ll stop breathing. If we don’t handle the seizures, he’ll stop breathing while having one. We haven’t found the magic spot between the two scenarios, the one where the seizures are controlled and he’s able to wake. In the meantime his body is pumped full of so many drugs. So so so many drugs.

I sat through this not very positive conversation with the neuro team and I was calm. I asked questions about risks and alternatives and what happens if we do nothing like I’m meant to and it all circled back to what is the main goal for Kai right now (read: make him comfortable so he can pass on. I can’t even believe I’m writing that). 

I was calm while talking to the neuro guy. It wasn’t hard. I was logical and asked all the questions I wanted to.

Emotionally? Emotionally I was worlds away. Emotionally I was raging – I felt like we were being asked to give up on our little guy by not trying each and every drug we could. Logic would kick in (again, what’s best for Kai when we can’t cure the underlying disorder causing the seizures?) and each time it did I would rage at how unfair this whole situation is. He’s so beautiful and this whole thing is wretched and so royally unfair. 

I held it all in until we had to leave. Leaving each time is my undoing, as we walked out of his room and down the corridor I cried. So hard, sobbing into Sam’s shirt next to the elevator. The talk with the neuro, watching my little guy seize over and over, the mundane beside sit while we wait for the next seizure. Holding his little hand when he does seize. Having to leave him in the care of others overnight. How does anyone do this?!

What other choice do we have but to continue on? We love our little guy so much it’s ridiculous. I’m scared for him, again stuck between the rock (where he has seizures and has a hard, not fun life ahead) and a hard place (death). I wish for neither of these options for my little guy.

I know that I’m presenting the negative, the fear. Writing it out has been therapeutic. I’m also aware that it’s a bit sensationalist. I’ve opened up our private little world to everyone with an internet connection, which feels quite wrong and freeing at the same time.

We’ve had such an outpouring of love from so many people. Or nearest and dearest, people we once knew and from strangers. I’ve had so many emails and comments and messages that have made me cry (I cry so much now) and just, I think if I hadn’t shared and we didn’t have such a village around us I’m not sure what position we’d be in even now. Plus this way everyone knows and I don’t need to explain anything to anyone. How do you explain this whole situation?

Edit: In attempt to share a few more upbeat things, we made friends with the 16 year old who was in the bed next to us while we were on the ward and, after a hard slog he finally got discharged! High five him! 

Also, one of the nurses took pity on us, and not only did Kai get fun sensory lights for his incubator, but they’re letting me stay over the night for baby cuddles. I am SO excited to not have to leave tonight.

Edit #2: As of this morning we’ve raised £6k+ for NKH research(!!!!). Considering my first goal was set at £250, we are overwhelmed with the support. I feel a bit cheeky asking, but if you haven’t already shared it, would you mind sharing our campaign?

This hospital visit is a horrid marathon. Our little guy is still unresponsive, still seizing. We’re trying all sorts of medications, but we’re ‘just trying’ everything. There is nothing intentional about his current medical plan. 

I am struggling. I am struggling so hard. On New Years I sat next to Sam, the love of my life, the father of my son and argued about my babies inevitable death. I was crying when the skyline out the hospital window exploded with fireworks, ringing in the New Year. I’ve been avoiding social media,  because all the posts were about the happy 2016 highlights and the hopes for 2017. I don’t begrudge anyone their happiness, but it’s hard to watch from the sidelines. Everyone seems to be so carefree. 

We are getting to the end of the tinkering that we can do. I feel so defeated. I’ve moved from extreme research into extreme escapism (I’ve read I don’t know how many books, all fiction, and I couldnt tell you what happened in any of them). I just, watching your baby get worse, from 30 second seizures to a minute, two minutes, is so rough. Yesterday Kai’s normal was five minutes. Today we had a 20 minute seizure.  

Watching your baby thrash, watching his heart rate rocket and his O2 stats drop… each time I grasp for someone’s hand and try not to burst into tears. Each time I wonder if this is it. The long hours of waiting interpursed with the moments of intense fear while we wait for his seizure to self resolve… this is an unbelievable emotional marathon and I am struggling. Yesterday we were hopeful he might wake up,  but he didn’t. Not really. Today he’s much worse than yesterday.

People keep offering help but I don’t have anything to ask for, I don’t have the emotional or mental capacity to know what help we need. My Dad and sister are here, which I’m so grateful for. Still, thank you everyone for the love and the messages.

I keep meaning to send messages to thank everyone who has donated to the research fund, but I don’t have the emotional capacity. Know that we’ve seen each donation come in and we’re so grateful. I got a message today from Emma (Joe’s Mum) cheering us on, which was so nice.  I feel that we’re making a difference, placing trust in his future, and the future of other NKH kids.

Faith and Fortitude, hopefully tomorrow will be better x

Mikaere was baptised today.  In the hospital, by his bedside. I hate that we’re just-in-caseing this. Still, today we had family from both sides visiting, so, we smiled for the photo and our baby boy was christened.

Despite yesterday being horrid for us, our little guy is still sitting at status quo. He’s not awake. He’s still seizing. He’s still breathing by himself.  

Because he’s on a course of steroids and not moving he’s retaining all the fluid in his tissue and is swelling up like a balloon. His socks don’t fit anymore, and we’ve been struggling to keep his feet warm (they do heel pricks to take blood for blood/gas tests, and it’s easier/shorter if his feet are warm). 

My sister and Dad arrived yesterday from NZ, and they bought booties from my Mum with them, a size up so they fit his poor little feet! 

We’ve also started more (!) medication. A diuretic to help with the swelling (because the edema could impact his breathing) and a potassium supplement, because the diuretic reduces potassium levels.  

Honestly, the amount of medication he’s on is worrying, his body is so small! I’m hoping that once we can wean off some of the medication, hopefully next week or the week after, hopefully his body will respond and he’ll recover. I feel like we’re doing way too much, but each individual thing makes sense to do. I struggle with this, because he’s only tiny.

I also battle daily with the drs on things like glycine levels and his bloods going to the right labs. I pick my battles, but oh, my heart. It’s my job as his mama to worry, and to love on him. I want to trust his medical team, but they are so many of them and there’s no one person taking the lead, no one person whose responsible or consistent – just me and Sam. And NKH is so rare, that for each new nurse, each new Consultant we answer the same questions, and I trust his team a bit less. So, I love on him, and I sing to him and Vaseline his lips, and I become his medical expert too. 

We can do this, my little guy. Please pull through! 

So. Again yesterday we that quality of life/quality of death conversation. I sat in a room with two Consultants from the PICU and our palliative care nurse from Great Ormond St.

When we had this conversation last time it was in the NiCU at C&W, and our little guy was fine. I couldn’t get into the right headspace because not doing everything we could for our perfect little baby who was awake and beautiful seemed inconceivable.

Now my perfect little baby is essentially in a coma, with unknown brain function and one rubbish seizure could rob us of him. What’s more today his seizures are long, 9 minutes, 10minutes, 11 minutes. Long enough that we’re back up on the midazolam we were trying to wean him from.

So, we talk about quality of life, and we talk about his death. I cried. Literally, sobbed. No mother wants to talk about the death of her child, let alone the part where you’re meant to let it happen. Where you do less to prevent it.

Worse, is that Sam wasn’t there, he’s ill today and was on the phone. I sat in a room with three medical professionals and they lead us through a dark, horrid set of questions.

So horrid. Do we ventilate if required? Or do we not? What about CPAP? Having to talk through exactly what level of intervention we would be okay with if things took a turn for the worse is horrid.

After much tears and discussion and internal struggle, we decided that ventilation and CPAP were too much, but oxygen, positioning and suction were okay. The guilt is overwhelming. That we have decided to not do everything possible to prolong his life, and trying to balance that with the sadness that for him, his life may not be pleasant and it would be kinder to not prolong it.

As parents we’re devastated. I hate this. I positively absolutely loathe being in this position. My little baby was fine not even two weeks ago. He was awake, and we were loving on him so so hard. Now he’s in a coma.

Come on babycakes, pull through. We love you so much.

PS I know I keep banging on about it, but we’re still raising funds for NKH research. If our little guy pulls through, any hope of a future is currently at research level. Thank you to everyone, genuinely, who has donated. If you haven’t yet, please consider putting a pound or two in the pot.

I feel like we’re on a precipice and could go either way. Mikaere could improve or he could not improve.  The most reassuring part (for which I feel guilty about) is that it’s not up to me. Mikaere is maxed out on all his meds, and we’ve done everything we can (there’s an argument to be made for overstepping and have done more than we should have, too).

He could go either way and it’s up to him. We hope for improvement. Hes stable at the moment, maybe more at a plateau than a precipice, but whether he decides to go up the mountain or down into the valley… okay. I need to stop with the metaphors because there is no good one really. We want him to get better. To wake up. To be seizure free.

Our baby is unresponsive. He’s got wires everywhere and oh, my little guy. C’mon baby. Pull through. 

Update: he’s holding his own with his airway so we removed the extra oxygen support. We’re slowing weaning the midazolam and we hope the seizures stay away. Fingers crossed!  

Nothing like a tiny bit of encouraging graffiti to make you feel a teeny tiny bit better when you have to leave the hospital without your baby.

It’s depressing how familiar PICU is. The alarms are familiar. I knew exactly what they were the moment I walked in, a ventilator with likely low O2 stats, an finished infusion.

This PICU is nice. We have a large bay to ourselves (made larger because it’s designed for a young adult sized bed, rather than a little Mikaere sized incubator. It’s all open and airy and all the equipment is shiny and clever.

They also have beds. The boys sleep elsewhere on the ward but the ladies can sleep opposite the unit.

It’s nice. And we have a lovely nurse and it’s all 1-1.

It’s just… The Fear has escalated as the measures we’ve gone through to stop the seizures are many, and to end up in the PICU feels like a kick to the face.

Kai is maxed out on so many of his meds. We’re moving from oral to intravenous and we just, we can’t get ontop of these seizures. 

Every Consultant keeps asking about ventilation and whether we want to go down that route if necessary. What they’re really asking is what kind of quality of life would that be if he lived and couldn’t get off the vent. Also, quality of death. If he’s to die regardless of outcome then it doing it without being intubated would be better.

I can’t believe we’re thinking about his quality of death. He’s only 11 weeks old. I don’t want to be making decisions about his death.

I can’t believe we’re here. Hopefully, he won’t need to be intubated and we won’t need to make those kind of decisions.

C’mon baby. Please pull through.