28 Days Later

Four weeks ago, we welcomed Layla into this world. It was painful, scary, wonderful, and she blessed us with her first breaths immediately. She still resides at Children’s Mercy Hospital where we spend our days with her. We’ve had so many ups and downs during her stay here – I wanted to document the experience more but haven’t had the energy. So I thought I’d try to write some of the random feelings and observations we’ve had along the way. Hopefully, her stay here doesn’t last significantly longer and we can move on to the ups and downs of life at home together as a family.

• The sounds and smells of the hospital are haunting. I get home at night and hear echos of oxygen saturation alarms, and my jacket has absorbed the plasticky, alcohol sanitizer smell that permeates every breath of air inside those walls. Ronnie bought hand lotion at the gift shop and it has its own unique smell and I will trash that bottle once we are home so I dont have to smell it again and be reminded of this time.
• Everyone here is fighting their own battle. The halls and elevators are filled with mostly solemn and sometimes tear stained faces. People are often rude and act as if they are the only people here. It’s easy to get frustrated with them, but then I remember some of the very rough days we’ve had, and I have to offer them some grace. Some of their children are in much worse condition than Layla, and some have been here for a really long time. When I was using the lactation booths to pump milk the first few weeks, a few times I overheard a new patient parent being shown the ropes of the lactation room. And I heard the sniffles of a scared new mom as she sat down to pump in this strange place, away from her sick baby, maybe only hours after learning her baby was sick. My heart hurt for her and I wanted to run and pull the curtain and give her a big hug. It sucks recognizing the “newbies” over and over again, as it’s a reminder of the fear and brokenness we felt in the early days of Layla’s journey.
• Though we are in the best place for Layla to get well, it is apparent after spending weeks here and observing how things are done that these people are smart, but there is still so much mystery to Layla’s case. They have protocols for handling her condition, but she’s stumped them several times already. Maybe she’s stubborn, but it also shows that as much as the medical establishment knows, each individual person presents a unique challenge. Unfortunately that isn’t how modern healthcare works, so I suspect that recovery times could be improved for all if there was an efficient way to address each patient uniquely.
• My heart hurts every single night I leave Layla here to go home. I am deeply conflicted about going home to sleep, but I know I wouldn’t get sleep here on this worn out, uneven window-seat bed thing. The recliner is even worse. I broke down a couple nights ago with frustration, impatience, and guilt, but the doctor talking to us assured me that the best thing I could do for Layla right now is to take care of myself and stay healthy for her. If it’s the doctor’s orders, I will continue, but nothing makes it feel any better leaving her every night.
• Last thought, but not least, is I’ve been amazed at the strength and resiliency of my husband and Skyler. I’ve been an emotional roller coaster and the two of them seem to always be right there to cheer me up or help take a load off. Without them, I would be lost through this.