The Way it is Right Now


Well, we’re home from the hospital. We were there for almost a week. This whole surgery thing has been pretty hardcore. There are stomach fluids (and formula and breastmilk) gushing out of the open wound in E.’s abdomen. We spend an hour feeding her from the machine and then her onesie is soaked with whatever calories we just tried to get in. And repeat, about five times a day.

This is wild. I had no idea that it would be this much work. The doctors said that it would be easier than what we had been doing before to try to get her nourished. It is not.

Cedar and I are like in-home nursing staff— changing the dressing on her wounds, cleaning the site, washing and prepping all of the materials (bags, syringes, ports).

Listen. All things considered, I think we are are kind of rocking it. Cedar has gotten the technology and process down so quickly. And then he’s helped me get familiar with it (and I am still learning). He’s impressed me because he’s been so supportive and present and really, when it comes right down to it, self-sacrificing. Staying to get the tube set up and then rushing off to work and then rushing right back home to help with the next feed. I know self-sacrifice is not the goal when you are a parent. Or at least it’s not our goal. But there are phases when self-sacrifice is needed. It’s certainly no Boca Raton over here right now, but we are giving our children the care that they need.

Also, it helps that I have very low expectations for these next few weeks. Like, if I’m only 25 percent freaked out then I think that’s a success.

E. has lost weight and it’s scary. She looks like she’s living in war time or something, her onesies hanging off of her small frame. But she’s tougher than tough. I think she’s going to come through it just fine. I have to say that phrase to myself a few times a day. She’s going to be fine. She’s going to be fine. She’s going to be fine.

There’s been a whole lot of kindness coming through to us, and we feel it deeply. I’m so grateful for our family and friends who don’t ask what they can do, they just pick something and offer it up.

Kate texted me at 7:30AM the other day (you know you are both mamas when you can exchange texts around seven with absolutely no worry of waking the other), and asked if it might be helpful if she dropped off a little breakfast on her way to work. And since I love breakfast (and lunch and dinner and also snacks) and I love Kate I texted back right away, “Yeah!”

She arrived at the exact moment when we realized that somehow surgical tape had gotten affixed to E.’s wound and was completely stuck there. And that was also the moment that A. really, really wanted us to play LEGOS and didn’t want to eat his breakfast and nope didn’t want to go to school that day either. So Kate, when she walked in the door, took one look at my face and then asked if she could help for a few minutes with A. Yes.

You know how sometimes someone enters your house and it changes the energy completely? That fifteen minutes changed the whole feeling of the morning in such a lovely way.

There’s a lot of this kind of stuff that I could write about. People coming through for us. Especially the mamas that I know. One who is a perennial insomniac, reminds me that if I’m up in the night and lonely, that I can text her any time. I love knowing that I can do that, because yes, I do get lonely. And yes, I am certainly up in the night with this baby.

Sometimes when I sit there and hold E. during her last feeding before we go to bed, I’m so tired that I can’t remember if I’m wearing my glasses or not. I sit there in the dark, rocking my sweet sleeping baby with a tube stuck in her stomach. I’m sitting in there alone with my girl, but I know that we are not alone. The only sound is our breathing, in a room with the lights off, the moon far up above us. It’s amazing how that moon is all the way up there and we are all down here, doing everything we can to get through it together.

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