As a writer (well, at least someone who has written things), I know the basics of what an acceptable introduction to a story should look like... Good writers try to visualize the "upside-down pyramid" illustration as they begin a new piece, keeping in mind to start off broad, with some sort of "hook" to lock down a reader's attention and then narrow down as they continue, focusing on more specifics in the main body of a post. Good writers put together an outline before they sit down and really let the words flow... they know what they're going to say before they say it. They make sure their message makes sense.
But what happened on New Year's Eve doesn't make any sense to me. It was horrible, terrifying, traumatizing... I don't have the energy or grace to approach this in any way other than to simply recount what I remember, before I block it out, and then release an emotional, angry flood of reaction. Proper procedure be damned.
On New Year's Eve, Brian Avonlea and I were at Brian's brother Kevin's house for dinner, along with the rest of the Powell family. Avonlea was sleeping in a corner of the dining room while Brian and I ate at the table. I glanced over at her during the meal, noticing her breaths and how sweetly she was sleeping. About 30 seconds after I had just looked at her, Brian and I both noticed our niece Olivia (6) walking over to where Avonlea was and, as I turned around to remind Olivia not to wake her up, I heard Brian say my name in an urgent tone.
Avonlea appeared to be having some sort of seizure. She was flailing her limbs around and her eyes, open wide, were rolling towards the back of her head. Her lips were pursed tightly together and she was not breathing.
I yelled for someone to call 911. Brian immediately started doing CPR and giving her assisted breaths.
The rest is really just commotion, movement, noise, blurs, screaming... I'll try to sort it out as best I can.
Kevin's wife, Beth, said that their neighbor was a nurse and I remember yelling "RUN!" at her and she flew out the door.
Kailagh, Brian's sister, was on the phone with a 911 operator. Brian couldn't get Avonlea to start breathing on her own and began panicking. His voice went from his steady, problem-solving tone to the voice I heard on the phone when he told me that Steven was dead. Just... sheer terror.
Brian: "She's passed out!"
I remember trying to recall everything we'd learned in our infant CPR class we took at the hospital before we brought Avonlea home from the NICU. Nothing... I couldn't remember a damn thing. All I could conjure up was a muddled mixture of doing something to the beat of "Staying Alive" by the BeeGees and knowing that she needed to be laid down on a flat surface.
I looked at Kailagh and told her to take over giving Avonlea CPR. I knew she'd taken multiple courses and was probably the one most likely to remember the proper procedure. She told Brian to move and resumed CPR as someone handed me a phone. I saw "911" on the screen, and just started yelling into the phone.
"MY DAUGHTER IS NOT BREATHING. SEND AN AMBULANCE!"
I heard the operator ask me how old she was. I told him she was 1. Then I looked at Brian, who was standing next to Kailagh, watching her perform CPR on Avonlea with his hands on his head, tears in his eyes.
I looked around me. Someone had taken our nieces and nephew upstairs (I have no idea at what point that happened). Brian's mom and sister, Coleen, were crying.
Why am I not crying? My baby is dying. I'm the worst mother in the world. How could I let this happen?
And seriously, WHY am I NOT crying right now?
I heard the 911 operator yell "HELLO!?!?" and realized I hadn't said anything for a few seconds.
"I'm here, I'm sorry ...but my baby is NOT BREATHING!"
He started asking me questions, and I just couldn't. I was lost. I had no idea what was happening, everything was out of my control and I was not able to be the calm, cool or collected person that the operator needed.
I gave the phone to Brian's mom, Donna.
At this point, I realized how long it had been that Avonlea had not breathed. Everything went completely silent for me. I knew that an adult human brain can survive up to 2 minutes without oxygen... but Avonlea was a baby. Not an adult. If it had not already been 2 minutes, it was getting close...
I heard Kevin in the front yard, begin to scream "HELP!" at the top of his lungs.
Brian looked at me through his tears, hands still on his head, and we both acknowledged silently what we'd been dreading these last almost-22 months. Our baby is broken... She is not built to live like everyone else's children. We've known she would die young, but we were not prepared for this. Not now. And this could really be it.
In fact, this was probably it.
I knelt down beside Kailagh, and saw how colorless Avonlea's face was. She was gray... I have, to this day, only seen the body of one deceased person in my life... when Steven died. The similarities were terrifying. I heard Kailagh say through her tears, "there's something..."
I had no idea what that meant in the moment, but I later learned that Kailagh was hearing some wheezing noises coming from Avonlea, a struggle to breathe. She not conscious, but she was fighting.
I was on my knees, yelling into Avonlea's good ear, calling her name. I don't know why... I guess I was hoping that whatever was still present of her consciousness would recognize my voice and follow it back.
All of a sudden, a woman I didn't recognize rushed in. It was the neighbor Beth had gone to get, the nurse!
Finally, someone who is not emotionally involved and who's highly trained on what to do!
She continued attempting to stimulate Avonlea's breathing. I heard her say, "she's got a pulse."
I felt transported, for just a second, back to the operating room, during my c-section, when all I could think was
"Breathe, Avonlea! Please... just breathe! Please God, let her breathe."
Over and over, a million times within a single second.
And finally she did. One deep breath, followed by THEE most pissed-off, weak little scream I have ever heard her make!
I stood up, and Brian and I just held each other. He (because he's a good parent) sobbed and emoted while I just stood there, like a zombie, absorbing a wave of shock.
I wanted to hold her, but the nurse, Lisa, needed to keep working on her. Brian and I just kept holding each other, freaking out, and watching Avonlea come back to life. She was definitely delirious and panicked.
Suddenly the ambulance was there, and Avonlea was in my arms as Brian and I were rushing her out to the paramedics. At this point, it became apparent to me that I was in my slippers, and that my shoes, phone and the diaper bag were all in various different places inside Kevin and Beth's house.
We briefed the paramedics inside the ambulance on what had happened. All they could seem to process was that she'd had a seizure, and seemed to ignore the part where she'd stopped breathing and had required CPR.
We decided on taking Avonlea to Presbytrian's pediatric E.R. in Charlotte. We knew that Piedmont hospital in Rock Hill has a track-record of treating Trisomy cases with little decency and, since we'd had a wonderful experience at Presbyterian when Avonlea was born and knew she'd been treated very well there in the past, we figured that would be the best option. The only other choice was CMC / Levine, which we figured could potentially be full with drunk people and/ or car-accident victims on New Year's.
We chose poorly.
Our experience at Presby's pediatric E.R. is mostly a blur now... a blur of no answers and much frustration.
We spent a total of 3 hours at Presby, where the nurses and doctors tried to make light of the situation and joke around with us. We were not in the mood.
It seemed like everyone was only wanting to address the fact that Avonlea had had a seizure, but not that she had stopped breathing for almost 2 minutes and had needed to be resuscitated. We know that seizures can be regulated by medication, but when they're accompanied by an inability to breathe, THAT, to us, was the more immediately threatening issue. We kept bringing up that she's needed CPR, that she'd turned blue, that we thought our baby was dead... and it just seemed like no one heard that part of the story.
The doctor told us that this type of thing (he was addressing the seizure) "just happens" sometimes with Trisomy13 kids. He told us that, with it being New Years' Eve, he couldn't get the on-call neurologist to come in to see Avonlea and discharged us with a prescription for diazepam to administer in the event that she had another seizure between then and when we could get in to see a neurologist sometime in the next week.
Avonlea remained drowsy, easily startled, and a little disoriented the entire time we were at Presby. She had a lot of myoclonic jerks, and was constantly waking herself from much-needed sleep. She was so upset every time this happened, and nothing seemed to comfort her, not even her favorite songs. We even wondered if she had gone blind, because when her eyes were open, she made no eye-contact, wouldn't track anything we put in front of her, and appeared to be looking all over the room but never finding what she was looking for to focus on.
As the nurse was going over our discharge instructions with us, I looked through the papers and saw a piece of paper with instructions on what to do if someone's having a seizure.
Ask them their name, or what year it is?
My 20-month old (who's developmentally between 6-9 months) would not be able to answer those questions at her best, much less right after a seizure. Come on.
I asked the nurse to give us a quick, verbal refresher on infant CPR, since I had completely frozen and forgotten everything I'd learned on the subject in the moment when Avonlea had stopped breathing.
She told me that, if Avonlea stopped breathing again, we should just call 911 and they would walk us through it.
Thank you, nurse. I feel much more confident and equipped now...
We went to 3 different pharmacies on our way home, trying to find somewhere that had diazepam in stock. It was after 11pm, and we ended up having to pay $250.00+ out of pocket at the only 24-hour pharmacy in Rock Hill that had it.
When we got home, I was completely numb. I had teared up off and on since the ambulance-ride to the hospital, and I had held Avonlea so tight in that room in the E.R., I thought I might break her. I had just been so scared...
But when I laid her weak, slumbering little body down into her crib and watched her roll to her side as she always does when she's ready to accept bed-time, it hit me that my life would never be the same.
We had just been through a trauma of watching our baby girl slip almost completely away from us, inches from death. So many luxuries of life were lost that night: the naivete of being able to take my eyes off of my child for even a second... the sense of relief I used to feel when she was asleep for the night (even now, I check on her constantly)... I became very angry, as I stood over Avonlea's crib and ran my fingers through her sweet, red hair.
As my anger gave way to an absolute flood of terrified tears and Brian came in the room and held me, we heard a wave of cheering erupt from our surrounding neighbors houses... happy hollering and tipsy celebration.
It was midnight. I had forgotten it was New Years'...
I became so furious at everyone else in the world at that moment... While the rest of the world was drinking champagne, singing Auld Lang Syne, and turning over new leaves with hearts full of hope, our 2016 looked extremely scary from that spot in Avonlea's room where we stood frozen and traumatized.
We don't currently have any updates on what caused that seizure or the inability to breathe. We'll be spending the next few weeks fighting with insurance companies and with Medicaid, getting referrals in place and doing everything we can to make sure nothing like this ever happens again.
Until we have more information to update you all with, we CAN tell you that, the next morning, Avonlea woke up happy and cheerful as can be, signing for her bottle like she does every morning, giggling as we change her diaper and put fresh clothes on her, and muttering "mmmmmmhhh" for her music.
Please pray for Avonlea's health. That's all I can muster the strength to ask for.
We know from experience the power of prayer.
So please, pray ceaselessly.