Surviving for Six Weeks with a Baby in the NICU

I can't go on. I go on.

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I never thought I’d be a person with a scary story. I think of my friend who had cancer, or the one with the disabled twins, and think that surely they must have some source of strength that gets them through it. Some extraordinary power of patience, or endurance, or peace.

And then, after a normal (dare I say enjoyable?) nine months of pregnancy and eighteen hours of labor, my beautiful baby girl was born… and she was purple. They took her away and I cried tears of joy when I heard that tiny squeaky cry from across the room. The flood of nurses into our room didn’t register at first (the stitches were a bit distracting). I held her for a minute and the whole world shifted. A male nurse pulled her hand out of the blanket and matter-of-factly said, “She has an extra thumb!” I stared at it blankly for a moment, disappointed that my perfect girl wasn’t perfect, and mad at myself for feeling that way. Then they took her to the NICU for oxygen.

My husband went with her and I sat by myself in the delivery room for about an hour, feeling high on endorphins and very alone. I texted my parents that she was born, getting oxygen, doing fine. When they wheeled me down to the NICU to see her, the nurse was busy and quiet. A doctor came to see us and explained that she had multiple birth defects and would be transferred to the children’s hospital for immediate surgery. She gave us a few pages printed off from WebMD and left.

Suddenly, we were the people with the scary story. One minute, excited new parents; the next, the terrified parents of a critically sick baby.

It’s impossible to know how you will react in that moment, but I think that’s where the core of our souls lives. My husband sobbed briefly, then went into superhero information-gathering mode. My brain scattered into a million pieces and all I could do was hold her tiny hand and apologize. We survived her birthday on adrenaline, faith, coffee, and the kindness of nurses.

When we were coherent enough to string more than a few words together, we spread the news to family and friends. I hated knowing that people would get my email, gasp, and talk about how terrible it was in hushed voices over their morning coffee. I knew they would think about us throughout the day but keep their plans to go out for dinner or take the dogs for a walk, while we were trapped in a hospital room with wires and beeping and that metallic taste of fear in our mouths.

We survived those six weeks in the NICU because we had no other choice. There was no extraordinary power or strength. It was simply that the clock kept ticking and our hearts kept beating that we made it through. Yes, we had prayer and incredible support from our family and friends to hold us up, and a quote that I misremembered from this article: “I can’t go on. I go on.” But the most honest truth is that we didn’t have some special power to deal with the fear and uncertainty. We may have gained some in the process (along with the ability to interpret O2 stats, x-rays, and modified barium swallow studies), but only because it was necessary to survive.

I wish I could say we were on the other side of this whole thing, but we have at least another six months of surgeries and complications. Thankfully we have built up stamina like you build up muscles at the gym—slowly, painfully, and with persistence. And having an awesome kid who smiles at every doctor doesn’t hurt either.

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