Square One, May 20th Update

Sitting outside at home, in my head just trying to process the last couple of days. The last couple of weeks. The last couple of months.

It's the perfect amount of warm and muggy, the kind of day that welcomes the heavy breeze. The birds singing love songs to each other. The sound of the wind chimes taking me back to mornings as a child on my grandparents patio. The smell of lilac. Watching the tiny seeds of the Dandelions effortlessly float thru the air to their new home..where another flower will grow from seemingly nothing. And the air is thick with anticipation for a storm, both literally..and metaphorically.

I think back to when Kilian was just born. How his survival was minute by minute. How that grew to hour by hour, and eventually day by day. We were so close to everything being ok, the insurmountable mountains he was facing seemed to dissipate one by one, until he was in a position of stability that allowed us to believe he was coming home. And now, he is once again facing minute by minute moments, where the smallest of hiccups could be the last.

He had to get worse in order to have a chance at getting better. But I feel like we're asking too much of him. We're putting him thru too much. And I just wish I could ask him what he wants. Do you want this chance to fight? Or are you tired and want to just close your eyes?

I just spoke with one of the nurses who is with him today.

His bleeding is much more controlled. Instead of having to constantly give him blood products, they are down to giving them as needed.

His blood pressure is back up. It was so low that there was no output of urine from his kidney. As of 2am this morning he started to pee again, and has been going non stop. Today she said the main focus was to get the fluid retention under control, he's so bloated from it (on top of swelling from surgery) that it's further contributing to being unable to ventilate him. Or so they think is the issue.

They are weaning him off of the medication for his low blood pressure.

Heart seems to still be holding on.

He is stable.

She also said from 12 hours ago, he is in a much better position. But we still have so far to go to even be considered in an 'ok' place.

She said his doctors and surgeon want to speak with us tommorow about where we are in all of this. I know they are going to tell us the outcome doesn't look good. The longer he is unable to be ventilated, the longer he has to be on ECMO, and as long as he's on ECMO the more damage is being done to that one lung. If so much damage happens, his lung won't function - and this will all have been done for nothing. It's at that point that we will have to say our final goodbyes.

As realistic as I am in regard to his chances of surviving all of this, the mother in me wants to say to them...but you don't know him. You don't know what he's capable of. I know it's looking grim, but please don't give up on him yet. He has so much left to prove.

We will be going down to him tommorow morning. I dread the conversation we will be having with them. I dread what he is going to look like. And I'm overcome with fear of something bad happening that will prevent his story from continuing.

But continuing is what we must do. Continue to balance hope and realistic expectations of what the outcome of this all will be. Continue to stay unwavering in strength and optimism for his sake. Continue to trust in whatever is meant to be, will be. I feel like we're walking a balance beam positioned on a roller coaster while blindfolded..drunk.

I was talking with a close friend and used the expression, when it rains it pours. She responded with, "grab a raft and hold the fuck on."

When you feel you can no longer hold on, everything is sore and hurts and it seems impossible to keep that grip even one second longer..thats when you dig to the very deepest of depths, grab any ounce of strength you have left, and hold even tighter for as long as you can..and then some. Scratch and claw and refuse to give in to the want of just giving up.

If this is all too much for him, for his sake we will let him go. But I will never be ready for that. I will never be prepared for those final moments. And I will never fill the hole that will be left in my heart from loosing my Kilian.

This can't be the end just yet. I don't want to know a world without him. And as much as I'd love to end this post on a positive note, I just can't pretend that's the case. I know the hard things make you stronger, but I'm so tired of it. I'm so sad. And I'm so defeated.

The melancholy of sitting outside where reality seems to be so distant and surreal, is the only thing keeping me from being completely engulfed in sorrow. However, I am choosing to in this moment let it all go. In this moment, I accept whatever it is that will come. In this moment, I think about my Kilian and all of my love for him, all that he has given to me, and all that he will forever be in my soul.

He will never be truly gone, as I will forever hold on to the memories I have of and with him, until my final breath.

Come on baby. Prove. Them. Wrong.