Little Bug

We’ve been home for two weeks, but it feels like we’ve lived a year of life in the past month. We are living a more typical life with a new baby, including but not limited to: piles of dirty laundry, dark bags under my eyes, messy kitchen, pumping for five hours a day, and not knowing what day it is. Any mommas out there know what I’m talking about?! But I can do this version of hard any day over the NICU version of hard.

Baby E is still a peanut, weighing in at 6.5 pounds. I call her Little Bug. We go in for weekly checkups with our pediatrician and cardiologist. When she’s awake, she’s super alert and curious, and she loves to listen to her big brother. She is finishing most of her bottles, is gaining weight, and in many ways seems like a normal newborn.

There are moments, however, when I’m snapped back to the reality that so much of my every day with her is not normal: going to the pediatrician and listing off her medications to the nurse, noticing her eyebrows jump as she carefully jots down the information. Going to a bridal shower and not being able to pass around the baby to the Grandmas because she’s very susceptible to getting sick – she’d get sick enough, in fact, to land us right back into the hospital. Giving her a bottle during church and feeling lots of eyes on me, probably wondering why I have to hold her in such a goofy way while feeding her, wondering why I’m tipping the bottle back and forth constantly, maybe even wondering why I’m not nursing her. She can’t coordinate her suck-swallow-breathe movements on her own, so feeding her is 15 focused minutes of watching her every move to make sure she doesn’t aspirate or choke.

Yesterday a woman told me to not wish away these days. I smiled and agreed but felt a pang of guilt because, if I’m honest, I want to jump ahead six months. Yes, I’m savoring the snuggles and I don’t spend my days obsessively worrying about her heart condition, but I know what’s coming up: more medications, appointments, and careful observations of her as we manage her heart failure. We are delaying the open heart surgery as long as possible to get her as big and as strong as possible, which means we make do until we can’t. Until the medications don’t work well enough anymore. Until she gets too tired to feed. Until she stops gaining weight.

And that’s the part I wish I could skip right over.

In the meantime, God reminds me there is no fast forward button through the muck, so I’m trying to adjust my outlook. He’s not surprised by it or scared by it even though I am sometimes. So here’s to learning how to trust Him when all I want to do is fast-forward through it all.