Adventures of NICU Nyx, Part Two

Today marks Nyx's fourth day in the NICU. She's making progress. She's come off of oxygen and is on room air. She's had an IV removed and is no longer on the TNP (Total Parental Nutrition.) Her feedings have been increased to 40 mL. She doesn't have jaundice after all. Her umbilical line will stay in for a while as will the NG tube. They're slowly weaning the flow of room air through her nasal cannula. Her pulse ox levels stay in the 80s with occasional dips into the 70s--and that's a problem.

On Wednesday, a cardiologist will evaluate Nyx to decide if she stays in our local NICU for a few more weeks or if she goes straight to TCH for open heart surgery. Our preference would be for Nyx to get a little bigger and stronger before they start slicing and dicing but if she continues to struggle with oxygen saturation our hand will be forced.

This limbo of uncertainty is incredibly difficult. We can't make any plans beyond the next three hours. Tentatively, Dave will return to work sometime next week if they decide to keep Nyx at St. Jo's. We're not flush enough for him not to earn a paycheck while she's in the hospital. We try not to think about the financial impact this is going to have on our little family but, obviously, it's going to be great.

Our stress levels are high. Dave is trying to take care of me and the baby. He crashes at night but hops out of bed the second our alarm goes off. I think I've slept maybe twelve hours or so since giving birth four days ago. The rest of the time I just lie there and think--or cry.

Or I'm up pumping. Nyx can't breastfeed so I'm doing whatever I can to make as much milk as possible for her. My milk is starting to come in fully today. I can't even tell you what a relief that has been for us. Friday was particularly rough because I couldn't get more than a few drops of colostrum. I felt like such a fucking failure.

Emotionally and mentally, we're both worn out. This is experience is overwhelming--and it's just begun.

Friday was the lowest point for me so far. The reality of a baby with a congenital heart defect finally hit me. I'd been in the post-labor daze before that so I hadn't really had time to process what, exactly, it meant. I couldn't stay in the hospital for another night because our insurance wouldn't cover it (Fuckers!) so I was going to be discharged in the afternoon. I had pumping issues and I'd spent the night listening to other mommies in adjoining rooms tending their babies.

I cannot begin to explain to you how empty that feels. For nine months, you've carried this tiny life inside you. You've felt her kick and move. You're never alone. It's comforting. And then you give birth. Normally you have an infant to hold and cuddle and feed and love on but when you don't have that, when your baby is in an isolette in another part of the hospital, it is devastating. There is no word to describe the profound emptiness.

When my nurse wheeled me out of the post-partum ward, I had a breakdown. All these people in the waiting room gave me pitying looks. Downstairs in the lobby it was the same story. Most mommies in the maternity ward wheelchairs leave with a baby in their arms. I had a messenger bag and a sac of breastmilk collection bottles. Seeing the empty car seat set me off completely. I wept as we left the parking lot.

We stopped by Target to pick up a breast pump and the met Mom and Dad for dinner--my first real meal in days. When we walked into the restaurant, guess what song was playing? Won't Go Home Without You by Maroon Five.

What the flying fuck?!?! Seriously. I started laughing at the absurdity of the moment. If fate or God or whatever really wanted to fuck with my mind they couldn't have picked a better way to do it.

After our night visit, we finally went home. I sobbed in bed for quite a while. Dave held me and made it better. Having that empty bassinet next to our bed wasn't easy.

But I'm better now.

We're settling into a routine. I wake up at 6 to pump. We shower at 7 and have breakfast. We leave for the hospital around 8. At 9, we have our first visit one hour visit of the day. I pump in the back room of the nursery at 10 and then we spend a few minutes in the waiting room before heading down to the cafeteria for lunch. At noon, we have another one hour visit with Nyx. I pump again at 1 and then we sit in the waiting room. We visit again at 3 and pump at four. Then we go home and eat and deal with real life crap until 8 when we leave for the hospital again and our last visit at 9. I pump at 10. We leave the hospital. We go to bed. I get up at 2 to pump and then again at 6 and we start all over again.

Yeah. We see Nyx four hours a day. We finally got to start taking her out of the isolette to hold and feed her. That helps immensely. But it's still not enough. What new mom and dad want to only touch and feed and love on their baby four hours a day? It's an excruciating and unspeakable torture.

But we're getting through it. We have no other choice.