On the eve of Halloween (Thursday night), Jake and I put the twins down to bed around 8 PM, and everything was pretty much going as usual. Ariana felt a bit warm before I put her down, so I gave her some baby Tylenol; but that's pretty normal for Ariana, because it takes so much more energy for her to do regular things than it does for a typical child.
I went upstairs to my bedroom to nurse Isabella around 9 PM and I thought that I kept hearing Ariana "talking" on her monitor. It was ever so faint, and the noise wasn't causing the monitor light to flash, so I chalked it up to her having some extra energy and not having quite fallen asleep yet. A few minutes passed and Jake came upstairs. I asked for him to turn up Ariana's monitor, so I could hear her more clearly. When he did, I could still hardly hear her, but what I could hear was the same soft grunting sound that she sometimes makes -- but over and over again. Because I was still nursing Isabella, I asked Jake to go check on Ari (to this day, I still don't know what made me ask Jake to do this or why he consented -- we never check on Ari unless she is screaming, because if we do, she'll refuse to go back to sleep).
Over the monitor, I heard Jake open Ariana's door and immediately shout at me "Elisa, come here RIGHT NOW!" I came running, but he kept shouting "Right now!" When I peered over Ari's crib (not knowing what to expect: poop? vomit? spider?), I saw a far more terrifying sight. My baby girl was seizing violently tucked under her covers. Although this image I never want to see again, it is also something that I never want to forget -- and I never will; it is burned into my mind. I grabbed Ariana and brought her into the light, massaging her limbs and face, and crying her name. She would not stop. Ariana's face was as pale as a sheet, her lips were completely blue, her eyes bloodshot. She was covered in beads of sweat, but she was feverish. Ari's heart was racing and her breathing ragged. Her right eye was twitching violently, her right cheek spasming, the right side of her mouth smacking, and she was spitting. All the while, she made that little sound -- like the beginnings of a soft cry for help -- over and over again.
I knew from Ariana's previous seizures as a neonate (which only happened a handful of times in the NICU & never since she's been home) and from talking to other parents of children with seizures, that every minute seizing is a minute of oxygen deprivation from that part of her brain. Every second of seizure is a second her brain is dying, not growing as a young child's brain should. Jake and I felt like panicing, but knew that there wasn't time. We woke up Gabriel and loaded all three children in the car and rushed off to Gilbert Mercy Hospital. There wasn't time to drive all the way to the "good hospital" (Banner Mesa) or even to wait for 911 to bring the ambulance -- so we took her ourselves. I called her pediatrician on my way so we would not have a wait in the ER and they would make a bed ready for her arrival.
I cannot tell you how terrifying it was to look back at my baby in her carseat as she was being jerked around that way. I felt scared and desperate, but also angry. I begged God at the top of my lungs to please help my baby. I felt so alone -- I can't imagine how she must have felt. I wanted to scream, " You broke her! You broke my baby!" because she looked like an electic toy with a short in it from having been slammed on the ground by a mean child. She was like a lifeless object that was being cruelly puppeteered. I felt like I was watching my helpless angel be bullied, but by who or what? I didn't know.
When we arrived at the hospital, they sedated her with an anti-seizure medication called Adavan, and she was still. They ran a multitude of tests, poking her dozens of times, giving her a cathedar, a CAT scan, X-rays, and a spinal tap. She felt everything, but was unable to react (although she screamed and spasmed with the spinal tap despite the sedative). All the tests were negative, but she still had a 101.6* fever. The doctor was young, green, and cocky. He told me that I shouldn't worry until he tells me to worry. He told me this was probably just a regular febrile seizure that many children experience. He told me that she would be completely unaffected. . . He was wrong on all accounts.
Ariana was transferred to St. Joseph's Hospital just a few hours later, when they at Gilbert Mercy realized that they did not have all the answers or the Pediatric ICU and Neurologic care that she required. Ariana's first few hours in the PICU at St. Joes (a great hospital by all accounts) were nothing short of a house of horrors with a torture chamber for her. She woke up surrounded by strangers and without a single familiar face (the ambulance beat me to the hospital, and the parking situation was 1/8 mile walk from the hospital entrance), and was immediately barraged by more needles, monitor leads, bright lights, loud beeps, and wet washcloths. It was 2:30 AM on Halloween. She vomited from what was probably a combination of the after-effects of the seizure, the drugs, fatigue, and fear. The thought of what she has been through still haunts me. I arrived at 3 AM. When the doctors and nurses finally left her alone, Ari fell asleep in my arms. It was 4 AM. I put Ari in her crib (which looked more like a cage than a crib), nursed Isabella, and went to sleep. The nurses woke us up at 6 AM to start the whole process again. More labs, meds, and an EEG were ordered, before Ari was moved from the PICU to the Pediatric wing. After being moved, Ari's stay was milder, but not pain-free. Daddy gave her a bath, and Ari enjoyed visits from Aunt Marci, Grandma, and Grandpa Starr (Grammy & Grandpa Taylor were at our house watching Gabe). She got to play with toys, eat fun food, watch her favorite movies, and dress up in her Halloween costume (a lamb), but she was still miserable.
While in the hospital, we had a few conversations with the Pediatric Neurologists about our daughter. They told us that her seizure was extremely long in duration (it lasted at least one hour and possibly two, when anything over 30 seconds is considered long), and that it definitely will have caused some brain damage. He said that while it isn't likely for her to digress unless these seizures recur (apparently because children have "reserves"), it will likely affect her future potential. Meaning, what she probably would have achieved, now she may not. But how will we ever know what she would've achieved without the seizure? We just have to push her towards her fullest potential now.
Ariana was scheduled an MRI, which was later cancelled because it kept getting pushed back (St. Joe's is a trauma center, so her case was less emergent). Because we elected to do her MRI outpatient and her cultures came back negative, Ari was cleared to go home on Saturday afternoon. We were overjoyed to have her home -- I felt as giddy as I did when she was realeased from the NICU as a one month old. But we were also just as scared. Jake and I keep torturing ourselves with thoughts of "what if we hadn't checked on her and she seized all night?" It terrifies us to leave her alone now. We keep her monitor volume on high at night and are moving a video monitor into her room. It will take us all some time to fully recover from this incident.
Although, to the untrained eye, Ariana seems relatively unchanged from her seizure so far, I can tell that she is drowsier and more lethargic (she is back on her Phenobarbitol and at an elevated dose - 5 mL 2x per day, 20 mg/mL), she has increased tone in her legs and hips (tightness), and she has resumed her extension pattern (back arching, which she had previously outgrown). Her tongue is also slightly more protruded. These small changes can seem devastating to a mom who invests every ounce of emotion in Ari's slightest improvements. All I can do now is pray for the best, and work with Ari like crazy.
On a happy note, our little Gabe got to go trick-or-treating and to our neighborhood block party with his friend, Lana. Jake and I both got to be there for him while my family stayed with Ari in the hospital for a few hours. Gabe dressed up as a lion -- and what an adorable one he was too! He had his "rooaar" down pat and everything. The only thing he was missing was his little lamb counterpart (Ari). Gabe had so much fun running up and down people's front lawns with the other little kids, pigging out on pizza, and collecting candy (which he was happy to share). He went from door to door in a red radioflyer wagon, and stayed out a half hour passed his bedtime. I'm so happy that he didn't miss out on this experience despite the unfortunate turn of events for Ariana.
It was a really eventful weekend, and we couln't have managed with all the support of our friends and family members who were there for us. Thank you so much to all those who were a part of our weekend. Please continue to pray for Ariana, her health, and her continued development.
