Life with Sterling

TW: baby seizure, EEG.

December 10th, 2019

We were airlifted to CHLA in the morning and by the evening, Sterling was having a seizure every few minutes.

This was during an overnight EEG to monitor seizure activity. He had a monitor at the end of the bed and a camera recording him. I stood next to him and pressed a button whenever I saw a seizure. This would mark the place in the video so the Neurologist go back and see where his seizures might be.

I remember feeling sad when I first saw his little head all wrapped up like this. I remember taking this photo, thinking I would never share it or even go back to see it, but now, I’m just so thankful I have photos of him at all. I wish I had more- more videos, more photos, more time.

It’s easy for me to look past all the tubes and wires and wraps and just see my son. My sweet, little baby. It’s not exactly your typical photo of a swaddled newborn with a soft, cloth baby beanie on his head. But this was life with Sterling and I’m grateful for every minute of it.

I’m so proud of you, son. You’re absolutely beautiful. And I like your fancy ‘snow beanie’ you have there. Miss you so, so much, darling baby.

Marshmallow Fluff

I wrote a post on grief and mourning and then decided not to share those words today after all.

Then I picked a portion of something I wrote in my journal and decided not to share that either.

Then I chose a quote by Mary Shelley. Did you know she lost her one year old and her 3 year old? No wonder she wrote about monsters.

Anyway, I decided against every well thought out caption for this photo, because when I look at it, all I can think about are the comments that will flood in about how adorable and chubby he is.

Yes, he is adorable and chubby. But not this chubby. This wasn’t just precious baby chub, earned by a good latch, a suckling babe, and impressive milk supply.

This was water weight that he carried because his body wasn’t functioning well enough to flush it out. The day before this, he weighed 7lbs. In this moment, he weighed 9lbs.

He eventually was able to clear out the water weight, but I look at this photo and can’t help but feel jealous. Jealous and sad.

Jealous of these tubes that nourished my son, when it should’ve been me. I should’ve been able to take the credit for his chubbiness- for real, chunky rolls that would eventually appear instead of this artificial marshmallow fluff that appeared overnight and would vanish the next day.

And sad, that he couldn’t fully heal so I could bring him home to continue our breastfeeding relationship, to help him grow with nothing but my own body.

So, here we are. No pretty, edited words to express where I’m at today. Just the incoherent ramblings of a grieving mother. Or to put it more eloquently, word vomit.

Your First Bath

Not exactly how I always pictured it would be, but I’ll take it.

You were so swollen because your poor, little kidneys weren’t doing well. And then somehow, something in you started healing because you started peeing. You peed all over your nurse. It was so funny.

This is one of the most bittersweet photos I have in my camera roll. Some days, I see this and it cracks me up. Other days, it kills me.

I remember how much hope we had in this moment and how it all came crashing down a few hours later when we learned you were in a coma. It just depends on how I see the world that day.

Today, its a good day or at least, this moment is a good moment. I wish you were here so I could give you a proper bath, but I’m happy I had the chance to bathe you at all.

I love you, darling Sterling.