Daphne’s Storm

It was another restless night of sleep; I’m not a stranger to restless nights, sleep has never been something I’m good at and becoming a parent didn’t improve that skill— it made it worse. I am no longer kept up at night by my own thoughts; now, I’m at the whim of a team of kids— three of them— and their needs nightly are as flippant as a fish out of water. So, when I woke up, I grabbed my phone, hoping to see any time past 5:30AM because that would have felt like a victory— it was not; in fact, it was only 1:45AM and my stomach was angry.

I unplugged my phone— the wireless charging option thwarted by my evil eye pop socket— and headed to the bathroom. I sat down, knowing the next few minutes wouldn't be great and accepted there was no escape. It was not great. I survived. And I headed back to bed.

My husband asked, “You okay?”

I weakly replied, “I’m not sure.”

I wasn’t sure I would fall back asleep but it didn’t matter— I had another date with the toilet. And off I went, phone in hand (my trusty toilet companion) to purge whatever was left. It went dark. And then, my husband was in front of me, concerned and worried because I passed out on the toilet; the thud of my phone hitting the floor woke him. Despite him seeing me birth three kids I somehow felt a little embarrassed that he found me on the toilet passed out in a bathroom flooded with shit smell– but this too shall pass.

He helped me back to bed, which proved to be a futile effort. Within minutes I shot up from bed and skillfully stumbled to the bathroom. This time it was vomit—lots of it. On all fours, hovering over the toilet it struck me that I hadn’t been in that position since morning sickness was a thing a couple years ago. I felt his hand on my back, rubbing, telling me it’s okay; all I thought about was how he had to be up for work in a couple hours, why the fuck am I sick, and this is so gross.

Eventually, it felt like the storm had passed; of course, we couldn’t know the eye of the storm was still miles away.

The occupants of the house began to stir— me barely. Our oldest, the first up, unexpectedly vomited and my husband (working from home on Fridays) was the clean up crew. Our middle kid woke up happy that it was a “Mama-Day.” And our baby, nearly two, had a blowout from the darkest corner of hell— my husband once again the one-man clean up crew.

A tired and completely tapped out of gross bodily actions husband delivered the cleaned baby, Daphne, to me in bed (the location I was hoping to spend the majority of my day) and we watched The Real Housewives of Beverly Hills while she drank her milk and I sipped on Pedialyte. It was the routine— mostly.

Slowly, I rallied out of bed because the children had to eat and the day had to move forward— my bed would have to wait until bedtime. I was in the kitchen, cracking eggs and I heard the hall bathroom sink turn on and I knew it was Daphne, standing precariously on the edge of the toilet stool to wash her clean hands. I walked over there— running not an option— and pulled her down, redirecting her out of the bathroom. She was upset. And stormed away into her sisters’ room.

The problem was solved, so I started the process of breakfast again. Tessa, six years old, abruptly entered the kitchen, “Something is wrong with Daph. She’s not breathing right.”

The eye of the storm was here and I had no idea how rough it would get.

I ran– walking, not an option– to the bedroom and saw Daphne, stomach down, frog-legged, and her chin resting unusually on the floor bed. She looked wrong. I bent down to examine her and she was breathing raggedly and her eyes– not quite a flutter or a roll– were wrong. Tessa had followed me to the bedroom and I attempted to sound calm, “Tess go get your dad. Tell him it’s an emergency.” Ever the helper she left without hesitation.

Admittedly, I was scared to touch or move Daphne, thinking maybe she had fallen from the top bunk; I was scared to touch or move Daphne in those seconds because I thought it would make whatever was happening worse. My husband, Brendan, rushed into the room– and he didn’t hesitate to pick her up and she was– wrong. We looked at each other and our exchange was simple:

Me: Let’s call the doctor.

Him: Absolutely.

Me: Fuck, I think this is an ER thing.

He began to walk down the hallway with her. Our other daughter, Sloan, nearly four, joined us and looked worried. Tessa was asking, “Is Daphne okay? What’s wrong?” And in a fog we simultaneously replied, “She’s going to be okay.” And then our exchange continued:

Me: Bren, she’s not okay.

Him: No.

Me: I’m calling 911.

Him: Yeah. Do it.

I grabbed my phone and dialed 911– a first for me. While I was waiting I told Bren, “Take her outside, maybe the fresh air will help.” It sounds silly now, thinking the fresh air would have been the cure but in those moments I would have tried anything. Bren carrying her in his arms walked her out the front door and the 911 operator answered; and I barely recognized the line had been answered, as I was grossly mesmerized by the uncanny combination of Daphne bobbing to Brendan’s gait. He kept shaking his head and looked destroyed.

Our other two girls kept asking, “Is Daphne dying?”

I said, “No, she’s going to be okay.”

I thought I was going to become a mom of two instead of three.

I answered all the questions from the operator, struggling to remember the basics, like my address; the operator instructed us to start CPR, and shamefully, I couldn’t; I told my husband, “I don’t think I can.” And so, he did. The girls were there watching. We were waiting for the paramedics. I tried to usher the girls into the TV room because a part of me didn’t want them to witness all of this or felt like they shouldn’t but they resisted and I couldn’t leave Bren and Daph. I used my husband’s phone to call my friend and when she answered I’m not even sure I said hello but I did say, “Daphne was unresponsive, we called 911…” and I’m not sure if I said more but I heard her say, “I’m coming.”

She beat the last ambulance to our house.

During the second round of compressions Daphne was becoming responsive and angry– a sound in that moment that was as sweet as her laughter. The emergency response team arrives minutes later; and when I say team, it was a fire truck, an ambulance, a couple police vehicles– they filled our cul de sac. The girls were there beside me, ignoring my request to stay in the other room with the TV and snacks; it was an impossible request. Our front room was flooded with strangers, and oddity in pandemic times and as they were assessing Daphne I saw my friend arrive. She took a pause at the steps, we made eye contact and I feel there was an exchange of emotion and strength. She came in, “Nicole, I got the girls, the girls are okay, I will take care of them.” We skip the hug or anything else– I don’t think I could have handled a hug.

Daphne was crying. I took her from Bren, and she calmed a bit. With no answers as to what happened the decision was made– we were headed to the ER. In a frantic rush I brushed my teeth for 30 seconds, put on clothes, and packed a bag with the essentials; I didn’t do this with grace. I didn’t think of all the things I needed. I was a mess. The EMT asked, “Do you want your own car seat or ours?” Dazed, “What?” He replied, “We have our own harness for the gurney. Is that okay?” I was trying to process the morning and make a good choice for the kid, “Is it safe?” He said, “Yes.” With relief, “That’s fine. It’s one less thing to do right now.”

In the back of the ambulance, painfully aware of everything Daphne was doing: worried her breathing was off, her gaze was different, and how scared she must be, I struggled to stay together. I grabbed a baby-wipe from my hastily packed bag and wiped my face because I hadn’t hit that part of my morning before the eye of the storm enveloped us.

The ambulance stopped, we had arrived. Entering the ER we were greeted by a few nurses and a doctor. There was loads of information exchanged. It was overwhelming. The doctor greets me, “Hello mom, I think we need to do a CT scan.” I look around at the barely familiar faces of my ambulance buddies and I realize this is a decision for me to make, “Okay, if you think we need it then let’s do it.” He replies, “Well, we need your permission because we need to sedate Daphne to do it.” Again, I look around, hoping for an answer among the faces and again I realize that this is my time to advocate and think as clearly as I can, “Ummm, okay. I want to talk with my husband before I make any decisions to sedate her. She was just unresponsive and I’m not comfortable saying yes right now.”

We settled in a room– room 11. I’m vaguely aware that my stomach is pinging with pain. I’m slightly more aware that I’m exhausted. If you have been in the ER, you will understand when I say that time is a fuckery… everything happens so slow, and yet, the hours move along swiftly. Out the gate, they administer a COVID test, which is followed by the need to draw blood. Taking blood from a child who is under two is not for the inexperienced and in an ER… they just aren’t that prepared for little human arms and veins. After a few failed explorations on one hand they called in another nurse and started fresh on the other arm. (And as I sit here, recounting this part over a month later my eyes well with tears.) Eventually, I see the crimson mark of success and they collect the needed vials of blood. The doctor returns to see if I’m ready to grant permission to sedate Daphne with Ketamine– the very drug that caused an overdose on a friend in high school.

“Are there risks?”

The doctor replies, “Oh yeah, without a doubt.”

A bit dumbfounded that he was attempting to get my permission as I was offloading from the ambulance, I felt anger bubble up, and then, I snapped back into the moment, “And they are?” He lists off a slew of things– none of them great. “Ok, I need to call my husband.” In the interim the CT Scan tech comes into the room, “You ready to go?” A wave of panic and protection rushes out, “No. I never signed off sedating her for the scan!” The tech, an early 30 something year old, looks at me, and says, “Sedating? Who said that?” I told him. And now it was his trun to be struck dumb and advocate. I heard him tell the doctor outside of Daphne’s room, “In 15 years I’ve only had to sedate three kids, so I’d like to give it a try– I only need 24 seconds of the patient staying still.” The doctor said, “Oh sure, let’s try that. Good thinking.”

What the actual fuck.

The tech comes back into the room. Daphne and I pile onto the bed together and are wheeled off through the maze-like corridors, which brings back another motherhood memory: the post-delivery ride from the birthing room to the maternity room. The scan– 24 seconds– was a success.

We arrived at the ER about 8:30 in the morning and by 11:30 in the morning the results were all in: chest x-ray, blood, COVID, and the CT Scan were, “All good.”

Great? We were exiting the eye of the storm…

I called my husband, “They say everything looks good. Come get us.” I packed up our things and Daphne who had been repeating, “Go. All done!” for a few hours is also ready to leave. I opt to wait outside because he’s only minutes away, and the fresh air sounds enjoyable. Daphne is sitting on my lap, facing me. We are signing together, bouncing, smooching, and laughing.

Suddenly, without warning her lip pulls in an awkward way, her body stiffens, her eyes flutter and roll, she begins to violently shake– she’s having a seizure. I turn her on her side, desperately clinging to her and run into the ER screaming, “She’s having a seizure, we were just discharged, what the fuck, you said she was fine, she’s having a seizure!” Security opens the ominous double-doors and there are a few nurses there. Daphne is still seizing. They direct me to a room, only to realize that the room wasn’t set up. They ask me to follow them; and I’m not sure if I wouldn’t let Daphne go or if anyone tried to grab her. Daphne is still seizing and I hear the panic in my voice, “Her lips are blue, she’s turning blue and pale, oh my god, what the fuck, do something!” Still cradling her, I place on the bed in the second room, and I hear them ask me to move again, “Mom take her over here, this room is too far from the doctor.” So, I carry her over to the third and final room. Daphne is still seizing. From her mouth she no longer controls drool falls. We walk into the room, room 11, and the remnants of our previous occupation are still present. They get an oxygen mask, and ask me to hold it on her face. I do. And what they are doing is unclear in my memory. Daphne stops seizing; her lips lose the blue tone and she is eerily still.

All the emotion slams into me. My mind is able to recognize that I thought she was going to die– for the second time of the day– and that I was going to walk out of the ER to greet my family with the terrible news. I felt faint. I felt nauseous. I had to step out of the room; the second shameful moment of the day; I left her in there because I just couldn’t, I couldn’t stand or give her any part of me. A nurse approached me and I rambled off, “I’m sorry, I haven’t eaten anything all day, I was sick, I was scared, I just wasn’t expecting it, I’m normally able to handle shit, what is going on with her?” The nurse looked at me and said, “You don’t need to apologize, you are handling everything just right, and we’ll get more information.” I remembered that my husband was around the corner and I called him telling him to turn around because our storm wasn’t over yet. The call was rushed and panicked– it was all I could give.

I walked back into room 11 and Daphne was settled and sleeping. I stroked her head saying, “I’m sorry monkey I had to step out but I’m back, I’m here and I love you.” She stirred a bit and we held hands. The doctor coolly walks back in, “Well, I guess we know what happened this morning.” Sure, sure we do. Hand-in-hand I folded my body over, resting my head on her bed, attempting to sleep when she sleeps (that sage advice from the newborn weeks) and our nurse walks in, placing a warmed blanket over me, raises Daphne’s bed so the angle was kinder to my back, and dims the lights. Thank you.

Eventually they set her up with IV fluids and started the process of transferring Daphne to Children’s Hospital of LA. My husband was able to join me about a couple hours after her seizure and the relief of our reunion, propelled by a hug I knew I needed to renew my strength was epic. We were warned that the pandemic had impacted transport services, and our estimated time of departure was 7:00PM– it was only 1:00PM.

Hours of entertaining a nearly two-year old in an ER room was exhausting for us all and finally the transportation arrived, which was a team of three compassionate, funny, and overall great humans. Thank you. We arrived at CHLA about 8:00 PM. My husband went home to say goodnight to the girls and pick up our things for our overnight stay.

Daphne is being measured, assessed, and tested for Covid, which has angered her– rightfully so. I pick her up and in all too familiar chain of events, Daphne has another seizure; however, this time I’m in the safety of the the hospital room, with two nurses by my side, and Brendan who walks into the room during the first few seconds of the seizure and I will never forget seeing his face– it must have been similar to my face the first time around. About four and half minutes later Daphne’s seizure ceased.

That would be her last seizure.

Today, we know that her rapid ER test was negative. Her PCR test was positive. She never had a fever. Her diarrhea was on and off for a few days and the stool sample we sent to our pediatrician was positive for norovirus. We had an appointment with a neurologist who ordered an EEG. The EEG was normal. We had a follow up with the same neurologist who ultimately wouldn’t be decisive in saying if this was a provoked or unprovoked seizure; he was also flippant in answering if she is considered to be a person with “a history of seizures.” He instructed me to always watch her while climbing, bathing, and swimming. I asked for clarification, “Do you mean, like forever?” He replied, “Well, it’s always good to watch your children while they swim.” And in a bit of annoyance, “Sure, but at 16 children swim alone all the time… will she need to be watched then?”

He mumbled out an answer. And told me that he was writing a prescription for a medication that we should have on hand at all times in case she has another seizure and we hit the five minute mark…

We feel we have more questions than answers and will be seeking a second opinion; hoping to find a doctor that is more confident in his answers, squashing our concerns and fears.