May 31st

'Happy some people got to meet him."

This is what I wrote to a friend, after telling her how my day went. I almost feel like it's a blow off, if you will. But it's the most emotion I can put into words in conversation.

I feel nothing. And everything at the same time. My mind feels numb. I hear what Kevin is saying to me and I can't even form a complete thought to answer. If Kilians story was a movie, I imagine myself in this moment as a zombie.

Not the blood sucking, shoulder drooped, foot dragging version - the empty shell of a person kind.

And I'm honestly not trying to be melodramatic. I see your comments about my posts bringing some of you to tears, and it makes me feel bad. I never want to cause anyone any sort of sadness, for whatever reason, but I have to be transparent to tell Kilian's story truthfully. He deserves all of that and more.

Yesterday, or the day before..because again these days are running together and I feel like it's just one long bad dream I'm so desperately begging to be waken up from - we found out that Kilian had another brain bleed.

He was taken off his paralytic the day before, which we immensely enjoyed. We were able to laugh at his little tongue moving as we did oral cares with him, swabbing his mouth with some boob milk. We watched his little feet twitch. And he squeezed my fingers as I was holding his hand. And I swear it was twice.

Kevin and I have this thing. We squeeze each other twice to say 'love you'. Holding hands, snuggled on the couch, or under the covers, secret handshake. When we were in Arizona for our friends wedding, we took a day to go exploring and found ourselves in a picked from Google maps tattoo parlor later that night, getting two dots each to symbolize the two squeezes of our 'love yous'. His on his ring finger, and mine on my wrist. A representation of our secret moments, an amazing adventure, and our somehow still there despite the nay-sayers love for each other.

Amelia is in on the secret. And you can bet Kilian is too. I give him two squeezes every five minutes, because I feel like I could never tell him enough.

And I swear, he gave me two squeezes.

We were sad when he had to be put back on the paralytic the next day, but it was for good reason. They were going to try to put him on the Oscillator, the very first respirator he started his journey on.

I was hopeful. I thought maybe this is how the next chapter of his story would begin. Maybe we had fallen all the way back to the beginning in order to start again. It felt so right, like it was part of the charm. This prolonged cliffhanger was going to carry that same happy ending I always scoffed at, because come on..that's not real life.

Before being put on the Oscillator, they found he had that second brain bleed, and while coming off the paralytic his movements were a little rhythmic. To be on the safe side, they put all these little monitors on his head to monitor for seizure activity.

I was so upset, not only at the bad news but because I spend hours rubbing that little noggin, feeling the incredible softness of his golden blonde hair. Combing that hair with a little black barbers comb. Imagining the day I'm doing this at home, as he's wrapped in a little hooded baby towel fresh out of his bath. These stupid little monitors took away one of the last things I could do for him, and I felt so defeated.

Today I started my questions for his nurse no longer than after having two feet in his room. Was the brain bleed stable and did they see any seizure activity? The answers were yes, and no.

I was so relieved. All this was, was another little scare that ended up being nothing, just like I had experienced so many times before in those first few weeks in the NICU. I was hopeful when I asked her if there was any improvement in his end tidals with the Oscillator.

*End tidals - co2 measurement in exhaled breath.

He wasn't getting any on the other respirators, but they did get them when they bagged him - giving hope that his lung was still capable of working.

Her answer to my question brought on the same feeling in my chest that hearing the results of the bronc that discovered the tracheal rings did. She told me no, and that they weren't getting any when they bagged him anymore either.

I felt the air escape my chest as tho someone had knocked it out of me. His lung was done. At least from my understanding.

All day the nurses and therapists continued their normal care. He had all of his respiratory treatments. He had his edema massages. His nurses gave him fresh linens. The little monitors came off his head and Kevin and I wet wiped off the sticky and combed his hair..Kevin gave him a cute little side part that made us both giggle at the resemblance it gave him to Boss Baby. But I just couldn't ignore the in my gut feeling - this is it. This is one of the last times we'll be doing this with our perfectly imperfect little ball of chaos.

I gave him extra kisses. I whispered extra sweet nothings into his ear. And I wiped away tears as I rested my cheek against his, our make due way of snuggling. I breathed in his smell and I touched every inch of his skin that doesn't have an IV, or sticker, or tube attached to it. I said my sweet dreams see you tommorows five times instead of three.

And I humbly wiped away tears as I walked past complete strangers in the hallway on the way out, feeling every ounce of their felt sorry for me energies, no longer giving a crap about putting forth a strong face.

The drive home was quiet. And never ending. It felt like the car wasn't moving. And the low hanging storm clouds looming over us seemed to give a visual representation of the mutual mood between Kevin and I. The wind wanted to blow our car off the road, and I almost wanted to let it. I wished the dark heavy clouds would suck me in and take me away with them. And I tried so hard to just be ok.

But as I've said 100 times, this will never be ok. Great things may come from Kilians short time here with us, but selfishly it will never be enough. Not for me. The lists of all the never will happens - baths, first steps, first words, late nights and early mornings, giggles and snuggles, will always grow longer in my mind. This will not 'heal with time'. He is irreplaceable, and my soul will always be desperately trying to fill this void.

I am trying so hard to believe the doctors will tell us something different tommorow. Trying so hard to believe his miracle is right around the corner. I don't want to give bad news. I don't want to make anyone sad. But I think this may be it.

In that same conversation with my friend, she told me I will always be the best momma, and that nothing could take that away from me. And in this moment, it doesn't even matter. I would give away everything I am, all that I have, and offer every ounce of my being, if it would save my Kilian.




Breathe.