• Liz Pappas

Charly's First Birthday

"Memories warm you up from the inside. But they also tear you apart."

-Haruke Murakami

I haven't had much to say since Charly died. Losing her dried up all my words. This post was written prior to Charly passing, but had not been published. I began writing the day after her birthday, and finished the day before she passed. I knew death was near, I could sense it, but I didn't realize just how close she was. As I was going back through various post ideas I came across this and felt I should share.

I can't believe a year has gone by since Charly came into our lives. It seems like so much longer, because we tried for so long to have a family. During IVF I felt like I knew her already because I could taste the future. I was so certain we'd get pregnant on our first round, which we did. After implantation, I instantly felt different. Like I knew the child inside of me was snuggled up for a long hibernation and I was the one chosen to carry her. Every day of my pregnancy I rubbed my belly and dreamed of the strong, independent child I'd give birth to. Andy sang and played guitar to her while she spun and swirled about in the womb.

I was so pumped to give birth. I had been amping myself up like I used to do before rugby matches. I was squatting and stretching daily. I knew I was strong physically and mentally and if anyone could squirt this sucker out with force it'd be me! I even had the audacity to think our baby would score a 10 on her Apgar's when our birthing instructor told us that most babies only get a 9.

When she finally came, it wasn't anything like I had planned. Hours after they pulled her lifeless body out of me, they finally wheeled her over in her space-like transport cube so I could see her for the first time. I stared at our baby and thought, "this can't be real." That wasn't my baby. This wasn't my delivery. Andy was supposed to piss me off by singing "push em' out, shove em' out, wayyyy out!" I was supposed to labor and curse and feel immeasurable pain. My baby was supposed to come out crying and breathing. We were going to do skin to skin immediately and breastfeed. Andy was supposed to stare in awe and be equally grossed out. We were going to wait to name her til we held her for the first time and the name would just come to us. The baby would tell us what she should be called. 

Clearly, November 6th took a different turn for us. I expected to be the tough mama, but ended up being the one that blubbered on the table as I shakily signed a release and nurses rushed to remove my bra. Simultaneously, the anesthesiologist gave me an epidural while the doctors rubbed iodine on my stomach. I wasn't even fully numb when they started slicing into me. I cried "no, no, no ,no" in both pain and fear and the nurse said, "think of the baby!" It all happened within minutes.

I remember pleading with God tearfully in the early hours of that first childless hospital morning. Andy, feet away from me, pressing his pillow into his ears so he didn't have to hear the sound of newborn babies crying from the rooms around us. We stared numbly as nurses cheerfully congratulated us, then looked around the room and realized there was no baby.  I begged God to take me so my baby could live. I prayed and prayed that He would kill me and spare her. There was nothing I wished for more than to die in place of my child. If it were an option, there's nothing that would have stopped me from giving up my life for hers. I was nothing, she was everything.

Charly's birthday wasn't what we imagined, just as last year's wasn't. We didn't plan anything big. No smash cakes, no parties, no photoshoots. We just wanted to snuggle, but we didn't even get to do that. She struggled to breath all day long, which wasn't out of the ordinary, especially lately. But she'd never needed such a high flow for so long. In the past we would need to bump her up to 8-9 Liters for a few hours, maybe a day or two. But she'd been on this high flow for a week and a half. Her airways were so dried out she was having near constant nosebleeds. Luckily, hospice intervened and pushed for a machine that isn't normally allowed in a home setting. Gilchrist worked with our pulmonologist to get an Airvo2 delivered, which is a high flow machine that can administer pressure and humidity.

Although she is weak and fragile compared to other children her age, she is also stronger than most children are ever asked to be.

Andy spent much of her birthday on the phone with equipment companies and Hospice working out the details of the machine delivery all the while ensuring that Charly was keeping her oxygen above 70. Even after her machine was delivered and we were taught to use it, she didn't get above 80 until late into the night. We tag teamed suctioning and giving nebulizers while the other slept for a few hours. We couldn't even hold her because every time we moved her she'd drop her SATs. We had to change her diaper upside down, because the only position in which she could breathe was her tummy. Just like last November 6, we were defeated and heartbroken.

After a few days with her new machine, things started looking up. Charly proved to us once again that she wants to be here and that she will persist through episodes from which most children wouldn't recover. Although she is weak and fragile compared to other children her age, she is also stronger than most children are ever asked to be.

While her birthday was far from peaceful or joyful, I still took time in reverence of the fact that she's still here. We've never been given the notion from any doctor that she would live this long. I still remember the gentle, sorrowful words of one of our favorite NICU nurses when I asked her what happened to babies like Charly. She delicately said, "most don't make it home." We knew she wasn't telling us that they spent a long life in hospitals or rehab facilities. We knew that Charly could die and would die far earlier than her infant peers. When we decided to bring Charly home, I asked the doctor how long she would live. They said of course no one can say, but we might get weeks or months. Years were never uttered.

When we decided to bring Charly home, I asked how long she would live. They said of course it's hard to say, but we might get weeks or months. Years were never uttered.

Andy recently made the observation that we've come nearly full circle with Charly. One year after her birth, she's very similar to how she was when she was born. Heavy breathing support, heavy sedation.  She did so well for such a long time, needing fractions of a liter to maintain her oxygen. We were riding that roller coaster with minor dips and peaks, but just as you reach the second half of the ride, the loops and drops become more and more intense. There's no more slow and steady hill of anticipation like you have in the beginning. It's only faster swirls and stomach drops. You feel sick and don't know if closing your eyes will make things better or worse. It isn't until you reach that stark brake and lurch forward that you realize it's all over. 

One of the ways I process is by gathering information. In the NICU I asked nearly every doctor and specialist what death looks like. I wanted to know exactly what to look for and how I should know it's Charly's time. Even though it's part of their profession, doctors don't want to be the ones to explain the inner workings of death. It's never a fun conversation, but I pushed for answers about the enigma that awaits us all. Now I have our Hospice team to pepper with questions, but thankfully they are adept in the art of dying. We've always said that we will follow Charly's lead, and when it's her time we will let her go, but we're coming to realize that her time is close. Her body's trying to tell us that she's had enough. Even with her new breathing machine, she's still dropping her oxygen into the 30s almost daily. We're standing on the edge of a ravine, staring at the other ledge, wondering how to get Charly there peacefully. We're wading through vulnerable waters; we don't want to lose Charly, but we also don't want her to be in so much pain.

I truly believe that the day God created Charly He had this plan for her all along. He knew exactly how she would be and He created her exactly as He wanted her to be. It's not what we as parents expected, nor is it what the world deems as "normal," but she's precisely the way He wanted her to be. Her life is just as important as a child that is sitting up, walking, talking, eating, and grabbing toys. Charly is absolutely perfect; in His eyes, and in ours.

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