There were a few good moments during those 36 hours, where we were told Julian was responding more. There was some hope in that. I remember the first time holding his tiny, little hand and telling him, “Mommy’s here buddy” and watching his legs move to the sound of my voice. What I wouldn’t give to have that time back again. I spoke to him, I sang to him. How badly I wanted to pick him up, how badly I wanted to comfort him and kiss his face and tell him we would be out of here soon. But I couldn’t.
Julian shared a room with another baby and family that was separated by a curtain. I remember thinking how I wish we had our own room. I remember sobbing and watching the mom lock eyes with mine with sadness. I remember peeking through and seeing them hold their tiny, little daughter as the mom held and fed her. I remember thinking how I’ll get there too. I just needed time. Julian just needed time. That he would get better. He just had to, there was no other option, this just wasn’t how it was supposed to be. I remember wondering what their story was and if it was as bad as Julian’s current situation. Maybe they had it worse and look at them now, I thought. Julian will get there.
As I walked around the NICU on my way back and forth from our room to shower/eat, I’ll never forget the silence of it all. It seemed as if every other room had one nurse in there, checking vitals, at a normal pace. Or, some rooms had family in there, holding their baby.
But when I fixated my eyes back to my son’s room, it was like a different world. Two to three nurses in there at any given time.
There it was again; the movement, the non-stop traffic.
Doctors, radiologists, x-ray techs, cardiologist, genetics; you name it, they were in there. Not to mention three HUGE machines making all sorts of noises; my husband still says he has trouble falling asleep at night because it replays in the background.
Maybe it was like this in the other rooms, but I just was only able to fixate on what was happening to Julian. You know, like I said in a previous post about noticing every little thing when tragedy is striking. All I know is that it was for sure different. And this scared me, oh how it scared me to my core.
Doctors and nurses continued to work tirelessly on him. As I mentioned, there were a few moments when we were being told he was doing okay. His saturation levels were up. I kept rubbing his hand, kissing him as best as I could with what looked like millions of tubes going in and out of him. Family and friends came up to see him. I was able to crack a few smiles, eat and shower back in my room.
But it didn’t last long. Doctors explained that while they were trying to get his fluid under control, air was getting in. Getting one problem fixed, but then it caused another. They tried positioning him all different ways. But then the beeping would start going off. That damn beeping.
Our Neonatologists were remarkable. They talked to us every step of the way. They kept trying new things, they contacted their colleagues, they took chest tubes out, placed new ones in. Took them out again and repositioned them to see if it made a difference. Every time they did this, they needed to up his sedation meds so he wouldn’t feel it. That meant that he also didn’t move anymore. There was no more moving his legs or arms to the sound of my voice. Bone Crushing. Heart Breaking. Earth Shattering.
Then it came time when Julians’ oxygen levels dipped down into the 70s. High 90s are considered normal. He was dipping into dangerously low levels. I was told once it gets low, then it’s basically at a point of no return.
It kept going down.
We were now told he may have endured brain damage; not sure how much or to what degree. They couldn’t even get around to doing a scan to show at what extent it had been because fluid kept coming out and air kept going in and that was their main priority.
They didn’t stop moving. We couldn’t stop crying.
We were losing our son right in front of our eyes.
