At approximately 4:35pm on Tuesday, December 21, 2010 Avery Rose Roggenkamp completed her long journey home.
She was born way too early on July 26 and weighed only one pound and four ounces. She underwent six surgical procedures-one on her heart, two on her eyes, two on her brain, and one to place central iv lines. She spent time on four different types of breathing apparatuses. She was administered countless medications to include decadron, nanodron, prevacid, fentanyl, dopamine-the list really does go on. She lived in a plastic box for almost ninety days. She was poked with needles so often that her right foot is permanently scarred. She was doubted by and she surprised a medical staff by living past the third day and then the twelfth day and then the twenty-seventh (and there were more days that we were told that she wasn’t going to make it) and “standing” up to each of the challenging days that she faced. Sadly she lost a twin sister (but she will always know you, Sienna Grace). She inspired many. She made her mommy and daddy very happy. She came home.
She is scarred. She is tiny. She is a warrior. She is stubborn-she’s her daddy’s girl. She is beautiful-she’s her momma’s girl. She is our baby. She is perfect.
She came home with: a reservoir and a shunt in her head; tubing that runs from the shunt to her abdomen to drain the spinal fluid and should last at least ten years; an apnea monitor so that we can rest a little easier (or not, depending on your definition of rest); a gold clip in her heart that shut off her P.D.A.; and three medications-prevacid for reflux, phenabarbitol for potential seizures, and a vitamin pack that will help her body develop. We are happy to have all of those accessories.
We arrived at the hospital Tuesday morning to begin her discharge procedure. The nurse for the day was one that has never cared for her yet knew her pretty well, for that matter I would venture to say that almost all of the nurses at the Fairfax NICU knew Avery to some degree. The nurse had us bathe Avie and then we dressed her in a new outfit that Maddie picked out. After saying goodbye to the nurses and two of the doctors we received the discharge paperwork and placed the baby in her car seat. With tears of joy being shed by us as well as some of the nurses, we walked across the threshold of the NICU for the final time. The difference was that we had our baby with us.
Our drive home was frightening for us. I’m sure that all parents feel this when they take their baby home from the hospital. But our drive was frightening for other reasons than just the usual. We were excited to be leaving the hospital but scared that we were leaving behind the security blanket of twenty-four hour professional medical care. However, we were also leaving behind the requirement to ask permission to hold, change, and feed our baby.
When we arrived Robin stayed in the truck with the baby while I went inside to get her older, furry brother. I walked Riley around the corner so that Robin could take Avery inside. We did this so that Riley could “find” her and thus make her part of his pack instead of us simply bringing an intruder into the house. When he did find her he sniffed and stared quizzically at her then picked up his ball and walked back to his leash. Some things never change.
Our first days at home have been a whirlwind. Robin and I are learning to work in shifts to take care of Avery and ourselves. And we are grateful for the lack of time that we have to get things done. We have removed our patient identification bands, we don’t need them anymore. Avery’s journey was long. It was hard and it was painful. It was a journey laden with frustration and restlessness and anger and loss. And despite all of the appointments for therapy and specialists, for the time all is right. Our baby is home. Avery Rose Roggenkamp has completed her long journey home.