Emerson Joy

Emi...

My wonderful, sweet, courageous, beautiful little miracle. Where do I start? This adventure of carrying you with me for 10 months, was cut short to a mere 25 weeks.

I don't remember a lot about the beginning, but I remember the day I had you; I can't remember a lot about myself, but I remember everything about you.

It was Christmas morning in 2020, after the longest, hardest, most stressful, most gutwrenching, most disappointing, loneliest year yet, I realized around 10pm, that you weren't moving. You hadn't moved during dinner three hours ago, you hadn't moved when I was snacking around 1pm, you hadn't moved when I got to your nana's house and there were lots of load noises... I started countind down the hours and the sickening realization hit me: you hadn't moved in 12 hours.

I was so exhausted, all I wanted to do was sleep, my hands were numb and swollen because, someone told me it's a symptom of pregnancy, I was having severe carpal tunnel symptoms, and all I wanted to do was sleep before. I remember thinking that you had an appointment for a check-up on Monday, but I knew I couldn't wait that long to have confirmation that you were okay.

Immediately, I started trying every trick in the book to get a baby to move while they're in the uterus, I held a flashlight to my skin, pressed a speaker against my belly, drank caffeine, started doing jumping jacks, started doing air squats, I even tried laying down on my left side after trying everything I could think of.

As soon as I stopped moving on my left side, your four-legged, giant, furry protectors started howling and barking and shoving their noses against my cheeks, my belly, my ears, anywhere they could fine purchase.

I knew I wouldn't be able to sleep without feeling you move.

Your favorite aunts kept urging me to go to the emergency room, or call a nurse, and I did both. The nurse on call notified me that she cannot give any advice or recommendations over the phone, and I would definitely need to come in if I need any doctor/nurse advice.

So, I put a jacket on and went to triage around midnight after Christmas dinner. I was wearing the world's worst pajama ensemble ever, (since nothing really fit me anymore), a reallyyyy ugly green sweater, red sweat pants with a soccer logo on them (from high school) and slippers. Furry, slip-on, slippers.

Once I got to triage, the front desk knew I was coming, and I filled out the paperwork, and they were kinda like, 'huh, yeah, diminished fetal movement...that happens around this time for almost everyone.' and they took us back to a room to get us checked out.

I kept feeling like maybe I was being overdramatic, but I knew I couldn't sleep without knowing if you were still there. The doctors and nurses started taking my blood pressure and getting an IV set up, they also put your heartbeat on and started up an ultrasound.

After a few minutes, you still weren't moving. We could hear you loud and clear, but you didn't want to wake up; you wouldn't budge. Half an hour went by, and you still weren't moving. This concerned us, but at the same time, hearing your heartbeat, loud and strong, was making all of us feel secure at the same time.

The doctors started asking me how I felt and all of these other questions, and then they told me that my blood pressure was so high, that I was a seizure stroke risk, and they were surprised that I felt fine. They told me that they were going to keep us overnight to monitor us. They warned me that if we had to have you then, for my safety, we would try a natural birth, but if worst came to worst, it would be an emergency c-seciton.

This scared me to death, but I was almost certain that it wouldn't come to that. They'd just keep us overnight, we'd get some good rest, and they'd send us home and tell us not to work so much.

Five minutes later, a surgeon burst into the room and put the beat of your heart on the monitor. He said "This is her heart, normally, we'd see an upward trend here, but we're not. They're both trending downward." I just stared at him for a minute and he said "We're doing this now."

And chaos broke loose.

I immediately started having a panic attack, my nurse and I started taking all of my piercings out and she literally took my clothes off for me because my hands wouldn't function. I had to call everyone in the midst of all of this, because I was alone, and tell them that I was going in for an emergency c-section because you weren't okay.

It was less than five minutes later, and I was in the freezing cold operating room, getting a spinal block. I was so afraid of drugs, I never wanted any, I wanted to do everything natural, I wanted to feel it all. (Crazy, I know.)

I couldn't stop shaking, I couldn't catch my breath and something kept whispering to me 'pray'. I looked at the surgeon and asked her "Do you pray?" She smiled and nodded yes and simultaneously pulled my forehead to her shoulder and we had a moment of connection, of silence and hope.

I felt the spinal tap then, and my right leg was the first to go numb. Everything else followed. I remember almost throwing up. I remember being hungry and talking about food. I remember how uncomfortable it is to feel someone else inside your body, pulling things out and pushing them around, I remember repeating to myself "I can do anything for five minutes, I can do anything for five minutes, I can do anything for finve minutes," when the discomfort started taking over my mind.

You were born at 2:49am on December 26th, 2020.

"The strongest, bravest girl, who couldn't wait to meet the world." I wrote that for your birth announcement pictures that I had made up for the thank you cards that I have yet to write and send.

The week following your birth is too much of a blur, they told me after the surgery that I was in multiple organ failure. They told me that if I had waited, even just until morning, you wouldn't have made it. And who knows what would've happened to me.

They told me I saved your life.

They told me that it's a crazy thing, a mother's instinct. They told me that my dogs knew. They told me that it's a good thing that I have always been so in tune with my body... Although that makes me think, I wasn't in tune with my body, mine was failing. I was in tune with yours. I knew you needed to move, I knew you weren't okay, I didn't know anything about me.

I guess that's how it goes, once you're a mother, you don't worry so much about what you need, just that of your precious cargo.

The first week went by, it was like living on eggshells, waiting on baited breath. I kept thinking: 'We're going to make it! We're going to have a baby at half term, and we're going to make it!"

I remember the first day I got to hold you.

I remember the respiratory therapist asking me if I was settled, if I was okay. I looked up at her and choked on 'yeah' and started bawling. I could feel you again. Your little breathes rising and falling with the ventilator, your hands on my chest, your little moves across my flesh. I was in heaven. I never knew what that felt like, until I met you.

On Saturday, January 2nd, 2021, I watched everything fall.

The doctors in the neonatal ICU wanted to do an echocardiogram on your heart to confirm one thing: a small valve called the patent ductus arteriosus (PDA) was still open, common for almost all premature births, and they wanted to double check your heart before they closed it. (They could easily give you ibuprofen and it would close naturally.)

I was with you during the echo. Watching the tech try to get the images of your tiny heart inside of your tiny chest. I heard him call the University of Michigan Children's Hospital to let them know he sent the results over to them to check. I thought that was normal.

As I sat down to lunch, the NICU head doctor came over and told me that you they were wrong. They were wrong about your heart.

You had congenital heart disease and requested an immediate transfer to U of M Mott in order to be with the cardiologist team there. They were more experienced, the best heart doctors in the United States; the world.

The doctor left me and I tried not to throw up. I watched the walls fall around me, felt myself falling into the well that I know all too well, I saw the ground fall beneath my feet and I hung, suspended in the air and then suddenly, I was on the ground, pouring my heart into the dirt. Screaming into the eaves of my mind, watching myself become the woman I knew when I was young. I saw myself how I always imagined her, on my knees, tears staining my shirt, staining the hardwood floors as we searched for the footprints of our children, no longer able to set foot on this earth.

I thought 'I'm that girl now.' I called your aunt and screamed to myself. I don't know how I spoke so softly to her, but the words that rung out, will never leave us.

"If she doesn't make it, there is not point. I will not be here."

She choked on: "I know."

And we sat there.

Out of everyone I know, she knows me most. Even in our discord, she feels what I feel; I feel what she feels. I feel her in my dreams, crawling into bed with me, telling me that she can't tell me or she'll cry, and we just lay together, her face in my neck, my arms around her back. Together.

Together forever.

You were transferred to U of M that very day. In a rush, a blur of emotions that I know I didn't feel. The nurses kept asking me if I was okay, and if I said 'yeah', they'd scoop me up into a hug and tell me that I'm not, but that's okay.

I did my best not to cry on every single person who touched me; knowing that touch is my comfort language, wanting to touch you, needing to hold you and knowing I could not. Not knowing the next time that I could.

Once you were settled at U of M, we met with cardiologists, doctors, nurses, geneticists, everyone under the sun who wanted to get a look at you because you were so rare; not even showing any signs or symptoms of your conditions, simply being alive and being who you are. They were astounded, shocked that you'd made it this far. Just one week in, and people were already surprised.

They said if you listened to your heart, it sounded just like a little murmur. They couldn't believe that you weren't needing a lot of help from the ventilator, that you were surviving on your own.

I remember that night, not knowing what 'heart failure' means, thinking that it meant death. The cardiologists even offered that we could 'keep you comfortable' and I almost spit bile in their faces. I remember asking how soon they'd see signs of 'heart failure' (death) and they said 'as early as next week'. I couldn't see. I almost fell to my knees on my way back to the room we were sleeping in that night. I let the walls hold me up and fell to the floor in a gasping puddle once I got there. Your dad had to hold me while I choked, gasping for air, knowing I couldn't live without you.

I knew as soon as I met you, you were my reason for being here. Nothing else in this world makes sense; but being your mom, that's the one thing I know I can do, and I can do it better than anyone else.

I have seen myself screaming death in the face: "THIS IS MINE!"

I have seen scenes of a baby-sized casket, and I throw them vehemently to the side, I can't watch you die. I refuse. There is no other option than your life. We're going to wear matching outfits and make strawberry banana smoothies and make art projects. And you'll be a prettier version of me and I won't be mad or jealous, but I will always tell you how amazing and wonderful and loved you are. I will always support you and your dreams, I will teach you everything I know, and admit it when I don't know how to do high school math anymore.

We're going to go hiking, and swimming, and horseback riding, and I will teach you how to play soccer and your dad will teach you how to skateboard and you will have it all.

The world in the palm of your hands.

Because that's what you deserve.

You don't deserve this and I've found myself screaming at the sky asking everyone why it has to be you. Out of eight siblings, they've all had children and they're all healthy and then there's me. Me and you. And Peyton too.

I've got big dreams for you. And I guess they're dreams for me too.

Without you, I don't know what to do.

I remember being afraid you wouldn't live past my birthday. I think the doctors thought you wouldn't make it there too.

When I say afraid, I mean bone-wrenching fear. It was as if I could feel my bones turning brittle and frail, cracking with every step I took toward you.

If I could hold you through it all, I would. And I guess I do too, in a way. We can hold you every day, skin-to-skin, or 'kangaroo care', they say. They say it helps your development, your breathing, your brain, you. I can count on one hand the amount of times we haven't held you, and they were because you were having such a bad day, that we couldn't bring ourselves to bother you once you were finally comfortable. Although we would've if we had been selfish. We love you so much, we can't stand seeing you uncomfortable.

My birthday came and went, and you kept getting bigger. You are so strong, the strongest little girl I have ever met. Everyone who meets you knows how strong you are.

Everyone who sees you, loves you.

You are a star, and you were born with the brightest light I have ever seen.

I think about you and your life every day. I dream about you and your hospitalization every night. It's like I'm living in my worst nightmare, but then again, you're here, you are the light that touches the shadows, you lift the darkness and it's not as inky dark as it was before.

It's waiting just beyond your reach, it catches me in the teeth on the drive home from visiting you, it jabs its sharpened, pointy fingers into my ribs, the fear of losing you is so real, I can almost see his face.

You were diagnosed with truncus arterious with an interrupted aortic arch, open patent ductus arterious and both ventricular and atrial septal defects. You have five conditions wrapped up in the tiniest body I have ever seen.

I've heard your heart beat. I've felt your heart intertwined with mine.

I never knew a soul tie befor I met you, and our souls are irrevocably and inexplicably combined.

I can feel our hearts connected like I can feel the air in my lungs.

Everything is not fine, but you're still growing, you're still fighting.

We were supposed to have a heart surgery twice in March; both times it was postponed. The first postponement was due to a new discovery: you had a recent stroke. Not to mention all of the microstrokes you were born with due to my body dying. This one was only 3-7 days old. You had to heal before you could get any type of surgery at all.

The next week that they wanted to do surgery, they waited again because you were diagnosed with retinopathy of prematurity; a common premature eye disease found in many premature babies who are on oxygen support. You went in to have surgery for your eyes and then they found out that your left hand isn't functioning properly due to the stroke. They made you a splint so that your arm can heal and you can retain use of your hand, and that brings us to where we are now.

You had anothe MRI in preparation for the next surgery, and they found something new.

You have a soft tissue growth in your neck. Wrapped around two arteries and butting up to your lymphatic system. We still don't know what it is, how detrimental it could be, or where it came from. This little lump in your neck has ripped my security from beneath me.

You were doing so well! You've been beating all odds! Defeating the limits the doctors have been expecting of you, growing beyond their initial expectations!

Those last few weeks that we've had to do eye surgery, found out about your growth and also rescheduled your hybrid heart surgery for April 5th, 2021 (which will probably change again, they like to postpone these things so the babies are as big as possible and the procedures are as safe as possible), and we've got this growth.

I know that you can do this.

And I am so sorry that the world is already asking so much of someone so small.

You are mightier than I will ever be, and I will fight for you, both seen and unseen. Forever your gaurdian, you're my angel.

I know you've got more fight left in you.

Hang on, sweet girl, I am fighting with you.

Thank you for being mine.

For teaching me that there is light in the dark.

Emerson is 3 months old, awaiting her heart surgery. She is my sweet angel <3