holidays + hospitals
i breathed a sigh of relief. brandtly and i had finally-- FINALLY!-- finished an absolute beast of a semester. he had attended his last semester of school full time and graduated from brigham young university with a degree in economics while working as an overnight finance manager at a marriott hotel from 11:00 PM- 7:00 AM. meanwhile, i had worked 50+ hours a week at the cheesecake factory (busiest restaurant in utah, #REPRESENT!!!!!), balanced social media sponsorships + collaborations, illustrated about twenty calligraphy orders a month, and taught yoga. between the two of us, we juggled our sweet baby, storie, and tried to keep our house semi-presentable. we also tried to breathe and remember to go to the bathroom.
so it was no surprise that i was relieved when brandtly took his last final and we were officially DONE with the fall semester of 2017. we were taking a much-needed and much-anticipated trip up to washington for christmas break to be with his family before moving down to arizona (oh yeah-- we also packed up our house during that semester in preparation to move). i was so excited to strengthen relationships with my in-laws, sing christmas carols, and watch storie waddle around in the snow. we boarded the flight with no problems and fed storie fruit snacks and watched boss baby the whole time. IT'S THE MOST WONDERFUL TIME OF THE YEAR.
we get to washington, ran some christmas errands, played some card games, and then began to settle down for the night. hot chocolate mugs were ready and cookies were baked. i spent some downtime with storie because she was acting snuggly and this is VERY out of character for her. she hasn't snuggled since the day she was born and i was loving every minute of it. i didn't think much of it; she was a little fussy, but we had gotten up early to catch our flight and i figured she was pretty worn down from her cute adoring fans (in-laws). i sang her some songs, tickled her face just how she likes it, and put her down for the night. it was 7:30 PM.
i went back downstairs to rejoin the festivities. we had fajitas for dinner and discussed what christmas movie we were going to watch that night. as we began to make the transition downstairs to the theater room, i opted to go upstairs instead to check on storie.
i paused at the top of the staircase. she can sometimes be a light sleeper, and i didn't want to wake her up. i listened to hear her sweet breathing, but heard something else instead.
it sounded like a kind of whimpering. my heart broke. she sounded so sad. "maybe she was acting fussy because she doesn't feel well, and not just because she was tired from today's activities," i thought to myself. i went back downstairs and grabbed brandtly so he could come hear the sounds she was making and then help me decide if we should do anything. this is pretty standard for us, and i love this about us. big decisions or small: we make them together. as partners.
we reached the top of the staircase again and he heard the whimpering. we looked at each other with sad faces and then proceeded to silently cross the loft to the other side where she lay in her crib. brandtly reached down to adjust her blankets and to see if she was awake. then, he screamed.
"DAD. SHE'S NOT BREATHING."
i hadn't seen her at this point because it was dark in the loft. i blindly sprinted after my husband who was clutching our baby. across the loft. down the stairs. at the bottom of the staircase, his dad met us, panting. his mom was right behind. since we were now in the light, i could see storie.
her entire body was rigid. her eyes were wide open, completely dilated, and unmoving. unfocused. not blinking, not responding. her mouth was partially opened and doing a horribly disturbing twitch. the twitch was mirrored by her arms and legs. she didn't seem to be breathing.
i was sobbing and brandtly was screaming. i've read about people in traumatic events in books, and they always describe it as an out of body experience. they hear sobbing or gasping or screaming, but they don't know where it comes from. they then realize that it's coming from themselves. that's how it was for me. i only realized that i couldn't breathe because i heard myself gasping for air. i couldn't focus on anything but storie. my entire body was shaking as if i was having a seizure myself.
brandtly's dad quietly but firmly instructed one of brandtly's siblings to get cool cloths. storie's body temperature was hot, so he wanted to slowly cool her down. her pajamas were completely soaked with sweat and i tried to get them off of her, but my hands were shaking so badly that someone pushed them out of the way and i quickly buried my head in them and sunk to the ground, still gasping for air.
"prop storie up so her tongue doesn't roll back," brandtly's dad instructed, "she needs to be able to breathe." i shakily stood up and tried to soothingly rub my baby's limbs in an effort to get them to stop twitching. i remember saying her name over and over again, desperately hoping that she would snap out of it and look to my voice. her mother's voice. she HAD to recognize and respond to my voice. but she didn't.
the ambulance came and we sped off to the hospital. thankfully and conveniently, it was the same hospital that brandtly's dad worked at. i felt a little comfort in knowing that we would be going to a place that he was familiar with and where he had spent hundreds of hours in operating rooms. i sat in the back with brandtly and storie, car lights on, not daring to blink in fear of taking my eyes off of my daughter. in transit, storie stopped seizing. the seizure had lasted about twenty minutes from the time i found her in her crib with brandtly to when she stopped. seeing her so still was almost more disturbing than watching her body contort. she is such an active baby and always has been. curiosity is one of her dominant traits and it is fascinating to watch her explore her surroundings and try to involve herself in everything. but this time, she was still.
we arrived to the hospital and were rushed to the PICU. her vitals were checked. the nurse ordered a catheter (to test her urine to see what caused the fever) and an IV (to ensure she stayed hydrated) to be put in. "will it hurt her?" i remember blubbering out. "yes," the nurse emotionlessly responded, "it will hurt her and she will probably scream." i positioned myself to hold storie down so the nurses could insert the catheter, but she didn't even move. her face remained blank the entire time. it was the same story with the IV: they tried to stick the needle in her for probably a full thirty minutes and she was completely still the entire time. it did not feel like it was my daughter on the table. she was much too different and much too still.
at this point, it had been about two hours since her first seizure. brandtly and i were clutching to each other with every bit of strength we had left and both of his parents were there to soothe us. i felt so grateful for them. brandtly's father is an anesthesiologist and his mother is a nurse, so it was so comforting to know that i had two people who were trained in medicine watching over our sweet baby with us.
"should we be concerned that her mouth is doing that?" brandtly's mom suddenly asked. my eyes turned to her beautiful lips and i saw that they were moving. it almost looked like something i call a "phantom binky suck"-- where it looks like she is sucking a bottle or her binky but there actually isn't anything there. she does this semi-regularly, so i hadn't noticed it or considered it to be alarming. however, when i took a closer look, i recognized that the movement was quite a bit jerkier and rhythmic than her usual phantom binky suck. the nurse watched her for a minute, and then concluded that she was having a second seizure and we just had to wait it out.
we also noticed that she wasn't moving her right arm or leg at all. this sent brandtly into a panicked frenzy. he completely broke down, sobbing. it's only the third time i've ever seen him cry; the prior two times were on our wedding day and when storie was born. "she has to have her right arm," he sobbed hysterically, "she scoots with that arm. she has to have it." if you have seen storie crawl, you know it's not really a standard crawl, but it's more of a monkey scoot. she does use her right arm. it's how she moved around and how she explored her world. it was devastating to think that that could be taken away from her.
brandtly and i waited and watched, lovingly talking to storie and assuring her that everything would be okay. she never moved or looked at us. she gave no indication that she could hear or even see us. that seemed insignificant to me. that happens in life quite often, i think. sometimes you put forth effort to comfort or acknowledge or serve someone, and you don't know if it will be reciprocated or even appreciated. but i think you should always do it anyway.
i was emotionally drained and physically exhausted. my eyes were puffy and my body was heavy. i laid in storie's little hospital bed and snuggled her as they wheeled us up to the PICU (pediatrics intensive care unit) around 1:00 AM. she still hadn't fallen asleep, which was concerning because of how exhausted she was. i knew that she would have nurses checking her every two hours throughout the night, so i was very anxious for her to get to sleep. we gave her a bottle and i sang her a lullaby. with our eyes unclosing and our hearts still pounding, we wordlessly pretended to fall asleep.
we woke up to storie throwing up around 7:00 AM . the nurse wasn't too concerned, which calmed us down a bit. the attendee came in and told us the game plan: they were going to do both an EEG and an MRI on storie to check for brain function and potential abnormalities.
the following days were long. everything takes a while at the hospital, so it just felt like an awful lot of waiting. she started moving her right arm and leg about halfway through the second day, which was huge. i think that was a turning point for brandtly; he was able to feel more optimistic about the situation once we knew she wouldn't be facing a lifetime of partial paralysis. the results of the EEG and the MRI showed an abnormality on the left side of her brain. the left side controls the right side of the body, which explained why her right arm and leg were flaccid for so long. because her limbs regained the ability to move, the doctors were optimistic that any potential damage that the abnormality did or will cause will also work itself out because she is still so young. at this point, we simply have to wait.
we are now home from the hospital, but i don't feel that this experience is quite over yet. she is still so sad and so uncomfortable. she is terrified of being with other people. i guess the several days of being in the hospital and seeing strangers come in and poke/prod her has made her extremely anxious. if anyone other than myself approaches her, she immediately starts screaming and clutches to me for dear life. i hope that she will relax in the next week and feel that she is safe.
this post is already pretty lengthy (kudos if you have made it this far!!), but i want to-- again-- thank all of those who reached out to us this past week and those who are continuing to do so. my gratitude is completely overflowing, so thanking y'all will get a post of its own, but i wanted to touch on it here as well. it means more to us than you know.
i hope everyone had a merry christmas spent with loved ones. i hope you felt the magic of this season. i hope you felt loved. and i hope that we can carry this spirit over into the new year and make it feel like christmas all year long.