1-December 11-January 11: The first month of Bennett's life feels like a dream when I look back on it. I was so happy and elated after the birth (mostly just to not be pregnant anymore, let's be honest), and he was such a good baby--we soaked in all the cuddles, skin-to-skin, swaddle baths, and middle of the night feedings that were so quick and effortless with him. Bennett was always incredibly alert and aware of his surroundings (now we have a better understanding of why), and it was fun to watch him soak in the world every day. We celebrated our first Christmas together as a family of three and Bennett was blessed by Dave when he was just 3 weeks old.
2-January 12-February 11:The second month of Bennett's life included a lot of Bennett accompanying me to school and being a dream baby during class. At this point Bennett's favorite things were bath time and diaper changes (hard to believe he ever loved diaper changes, haha). He still loves baths more than anything.
3-February 12-March 11: Bennett's third month included a flight to California for Corinne and David's wedding! He did awesome on the flight, and he got to meet his cousins Emily and Sam for the first time (Emily is just 3 weeks older!) while we were down there. It was heartwarming to watch all the women I grew up with admiring get to hold and cuddle Bennett when we were at the reception and saw so many friends. There was so much love to go around! At this point, we were definitely needing the swaddle to get Bennett to settle to sleep and he was starting to get a little more fussy like a normal baby, haha.
4-March 12-April 11: Bennett saw his first ever movie (Beauty and the Beast in theaters) with us and actually really enjoyed it. He's always been a music baby, so he was enthralled through most of it--a phenomenon we have yet to see repeated...haha. This was when "Helpless" from Hamilton became the song that could remedy anything for Bennett basically. He had to have his tongue and lip ties cut twice in this 4 week period because they reattached the first time and it was causing problems with him taking in too much air and refluxing after eating. He was a champ, but Tylenol was definitely our friend during this stretch.
5-April 12-May 11: During this month we were working on selling our house, buying a new house, packing up our old house, finishing the last semester of classes for both Dave and I, I had carpal tunnel surgery on both wrists simultaneously so my mom came out to be my hands for a little bit (thank goodness!), and we took a trip to Moab with my family where Bennett got to go on his first hike and swim in a (mildly warm) hot tub for the first time which he LOVED. It was an INSANE push to get everything done, and at the same time Bennett started rolling over intentionally as well as babbling a ton! We were pretty sure we were going to die at the end of this month.
6- May 12-June 11: Bennett found his feet during this time period and as soon as he realized he had them he started using them like fingers! I've never seen a baby so dexterous with his feet, haha. We also got his highchair and started trying to introduce him to some solid food--without much success.
7-June 12-July 11: We officially moved into our Spring Creek Ranch house here in Lehi, which is when things got a little insane. We tore out the entire house (basically) and lived with no floors, or water or electricity downstairs. We were making bottles every night and all day using the bathroom sinks upstairs and we only had carpet up there (and our bed!) put in once we got back from Toronto where I presented at a conference. We also went to the Rackham family reunion in Couer D'alene, ID. That was our first long road trip as a family of three and Bennett did surprisingly well! We were able to make the trip both ways in one day--no stopping overnight anywhere. This month we also discovered that Bennett LOVED the water. He's definitely a little fish! He loved spending time in the family hot tub (again, mildly warm) when we stayed in Toronto. He was also starting to mimic our expressions and sounds. Oh, and we found out we were pregnant again right after we got back from the family reunion trip.
8- July 12-August 11: The eighth month of Bennett's life was definitely the scariest month of our lives. On July 14th, Bennett had his first generalized tonic-clonic seizure. It lasted approx. 5 minutes, happened right as Dave was getting him ready for bed after his bath, and we had no idea what to do. The paramedics arrived quickly and by the time they got there Bennett had stopped convulsing, was breathing again, and just seemed very out of it and tired. We headed to the ER--not in an ambulance because he seemed stable according to the EMTs. That was a long night that included 4 unsuccessful IV attempts (until they finally got the NICU team to come just put the IV in his head), a CT scan that came back clear, a mostly inconsolable Bennett, and no answers. We did get to come home that night and didn't have to be admitted, which I'm grateful for, but it was terrifying all the same.
At this point I was already ridiculously sick with my pregnancy, but didn't know exactly what was going on yet (i.e. the extent of the hyperemesis gravidarium) or why Bennett's crying was triggering my vomiting so much, so I asked my parents if I could come to CA early for what was supposed to be the family get together that summer the next week so my mom could help me with Bennett, which was a godsend. 10 days after Bennett's first seizure--a couple days after having been in CA at this point--he had another generalized tonic-clonic seizure that started the same way--not breathing for about 30-60 seconds before convulsing with all limbs and eventually losing all muscle tone--all while unconscious. Annie and I headed to the hospital as the rest of the family was at church already (I was running a few minutes late and hadn't gotten in the car yet thankfully--remember, I was throwing up all day every day at this point still) and once we got to the ER they told us they'd need to admit us to run all of the tests for Bennett overnight and the following day. At this time Dave was in Utah working on getting floors in our house and they only allowed one parent to stay with the baby in the pediatric unit overnight so in between vomiting in the bathroom and dry heaving everywhere else, I handled Bennett by myself (with the help of some really kind nurses who took pity on us) all night as we attempted an MRI unsedated (successfully!!) and had more labs drawn which again all came back normal. We also had our first EEG done the following day which my mom was able to come handle for me--thank goodness because I felt like I was dying at this point after being up all night vomiting and taking care of Bennett, and he was not easy during the test.
Before we were discharged (after what felt like forever), the pediatric epileptologist from the area came and evaluated Bennett before discharging us and told us she thought we should do genetic testing because she was noticing some floppiness and a little less interaction than she would expect from him at 7 months. She then put us on Keppra, but wrote the prescription for 10 TIMES the amount that was appropriate for Bennett's weight. The only reason we realized something was wrong was because the following day at home he began having what we now know were "drop seizures" or "atonic seizures" where you just lose all muscle tone, go unresponsive briefly, and then come back. They are much harder to spot and identify than the typical tonic-clonics because they're so short and subtle, but we called the doctor to ask if that was what could be happening and we learned that he had been given a severe overdose. We were reassured over and over that there was no way the Keppra could possibly be causing these seizures, and that there is no such thing as overdosing on Keppra. It's the "safest drug" out there--overdosing isn't even possible. Now 5 months later, we know that that was NOT true. And SCN8A epilepsy kids actually do have a toxic reaction to Keppra so not only was he on a terrible medicine for him--but he was on an extremely high dose that continued to cause seizures for us for weeks to come.
Bennett didn't improve quickly, so Dave flew down that night to California because we were so worried about all of these new seizures (that everyone assured us could not possibly be seizures...) and he stayed down there with us for a few days before we felt comfortable that Bennett could make it through the flight back to Salt Lake without having a seizure on it. We had an appt. set up for right when we landed with a neurologist here in Utah and thus began our saga with the doctors up here and trying to fight for good care for him.
We continued with the Keppra--the doc up here actually raised the dose to stop the breakthrough seizures, but he didn't believe that Bennett was having drop seizures. For some reason he was convinced that kids Bennett's age couldn't have those yet--he was wrong. When Bennett had more generalized tonic-clonics he added Phenobarbital to try to add more control. Bennett stopped seizing as regularly, but still had some breakthroughs, unfortunately (now we know there's a good possibility Keppra was actually causing some of these, but none of the doctors believed me when I said I thought it was making him worse).
During this month of Bennett's life, he stayed with complete strangers (at the time) from about 8am-5pm every single day because I was too sick to get out of bed for anything other than IV fluids at the hospital twice a week--let alone feed myself or him, shower, or function at any basic level. Our Spring Creek ward here stepped up in an incredible way and set up a network of volunteers to take Bennett for me while Dave was at work so that I could rest and do my best to stay alive essentially. Bennett was amazing during all of this because he was pretty content, very mild, and didn't seem to struggle with separation anxiety like we expected him to at that age. And we will forever be grateful for the angels of the Spring Creek 1st Ward who stepped in to be Bennett's second moms for about a month and a half before they even knew us at all. We could never have done this without them.
9-August 12-September 11: At some point during this crazy stretch I finally got on a feeding tube and a very strong anti-emetic and started to feel more like myself. I was still incredibly weak and recovering from being emaciated and dehydrated for so long, but not vomiting nearly as much. Because I was finally feeling up to showering regularly again and even putting on makeup about once every 2 weeks we decided to take Bennett to get some 9-month pictures done in the beginning of September. This is where it feels like everything changed for me.
It was very clear that the photographer expected Bennett to be much more expressive, interactive, and responsive when he made silly sounds or faces. He was surprised Bennett could barely sit on his own and only cracked one or two feeble smiles the entire session. I went home feeling very unsettled. To the point that I started doing some intense research about developmental milestones and such and realized that Bennett had actually plateaued at about a 6 month developmental level and we hadn't seen progress since his seizures had started. He was not babbling or mimicking anymore, he never responded to his name, he didn't seem to care who his mom and dad were as opposed to random strangers holding him. It was almost impossible to elicit a smile or laugh from him, and overall he just seemed like a very zoned out, drugged baby--not the Bennett we knew a few months before.
At this point I was still too sick to be taking Bennett all day by myself, but I had just enough energy to get the ball rolling asking for genetic testing and switching neurologists until we found one who would order it for us. She also listened to me about the Keppra and suggested coming off of it first, but wanted us to do a pretty slow wean. Honestly, this period is all still a bit of a blur to me, but I do know that as we started to come off the Keppra, we began to get our baby back.
10-September 12-October 11: Mid-September I started taking Bennett full-time again on my own, which was still difficult, but at least it was feasible and it was great to be able to actually be his mom again. We also completed the entire Keppra wean in this time period and immediately saw HUGE improvements in both seizure control and developmental areas. He started sleeping through the night better with less wake-ups, he would make eye contact and respond to facial expressions, he responded to his name about 50% of the time, began working on crawling on his knees, and started recognizing Dave and I as his mom and dad, which was so incredibly heart-warming I'm not sure I'll ever really be able to fully express what that meant to me. We were also working with Kids on the Move here in Utah which is the 0-3 years early intervention program for kids who are at-risk or on the spectrum in order to help parents work with them on their skills as much as possible at home to encourage social and emotional development. We started to see improvements like crazy when he came off the Keppra and all the therapists were stunned by his progress compared to his baseline assessment.
11-October 12-November 11: The gains from the Keppra wean just kept coming this month! Bennett started clapping on command, began to wave, would wiggle his head when we asked or did it ourselves, had a better appetite for solid foods, and had better sleep. We will never forget October 18th, the first day we saw Bennett belly-laugh again for me and go back and forth effortlessly with smiles and joy. It had been 4 months since we had seen that from him, and I think a part of us had already mourned the loss of that side of his personality--so when it returned, we were so overcome with joy and gratitude, we still get emotional when we talk about it.
We will also never forget November 8th, the day we got the genetic testing results which showed his mutation on the SCN8A gene. We thought our lives had already been turned upside down just with the generic diagnosis of epilepsy with no underlying cause and dealing with developmental delays...Little did we know how much harder it would become with a specific diagnosis. We're still SO glad we did the testing and know about his mutation because it has brought a whole new family into our lives of parents of kids with SCN8A epilepsy who are literally the only other people in the world who understand how we feel right now. And the access to the research regarding our kids' specific sodium channel issue has helped us guide treatment and given us a direction to go, which is comforting. But at the same time, we now live in a space of perpetual ambiguity--we will never know what Bennett's life will turn out like, but we now know that he has much higher odds than most of passing away early from SUDEP, he is more likely than not to be developmentally delayed, and his seizures will likely never be fully controlled. This is a hard place to be and there are times where it is still too much to bear and I just break down from feeling overwhelmed by the lack of answers. But I am so so grateful to the people before us who have worked and fought so hard for our kids to get the research and the treatment they deserve--even though they are so few in number. And I'm grateful to have a group of parents and friends that will celebrate the fact that Bennett tried out a new consonant this week as hard and as energetically as if he had won a gold medal in the olympic--because they just get it.
12-November 12-December 11: Here we are! We are 6 weeks seizure free (knock on wood!), in the middle of weaning off of Phenobarbital, and we have continued to see developmental gains since starting that. Bennett can cruise by himself at this point pretty regularly. He still falls once in a while, but seems to bounce back easier than before. He started pulling himself up on his crib rail by himself this week. We're actually seeing him crawl long stretches on his knees finally (not the army crawl), he's trying out new consonants other than just "babababa", and it sounds like he's trying to copy some of what we are saying. He's still smiley and giggly and he sure loves his dad and mom. His sleep is awful still (but it always has been), but we will take awful sleep with no seizures over great sleep and terrible seizure control.
He is working so hard to start walking independently, and he is starting to really love books. He's always enjoyed picking books out as well as flipping the pages, but for the first time he is actually pointing out pictures and recognizing phrases from the books which is new. He's starting to be more exploratory with table food as long as someone feeds it to him off of an adult fork and plate, haha. But that is tons better than before where he would refuse almost everything. We were able to take family pictures together last week and capture some great smiles from him which is a huge relief to me, and he still loves baths best, continues to love his carseat, stroller, and drives in the car (particularly if accompanied by Hamilton or some T. Swift), and is a happy, fun baby when he's not in the middle of some crazy medication change or post-seizure haze.
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Dave and I never thought we would be sitting here a year later with what seemed like our perfectly healthy baby at birth feeling overwhelmingly grateful for little moments like when he lifts his head up as he's falling asleep and is actually reassured by the fact that it's one of us who's holding him--some of these kids completely lose their memories of who their parents are when bad seizures hit. We never thought we would celebrate our 1 year old just barely starting to crawl on his knees or babble in a way that sounds nothing at all like what we're saying, haha, but just be so grateful to see him trying to form any sounds with his mouth and tongue. We never thought we would worry every time we said goodbye to him that he could have a seizure while we're gone. We never thought "seizure" would be such a familiar, yet still scary, word in our lives. We never thought we would still be swaddling our son to sleep at age 1 when he is completely dysregulated and inconsolable in the middle of the night. And we definitely never thought we would ever be so grateful just to see him make it to age one.
As rough as this first year has been on Bennett and us, though, we've also experienced a profoundly different sense of gratitude I don't think many parents ever really experience.
It's a strange thing to watch your child's personality slip away from you day by day, to live in fear of his next hospitalization, to be worried constantly that he could regress any moment and lose every skill he has--including just holding his own head up. So even though he doesn't sleep through the night, never has, and possibly never will, I can't even count the number of nights I've just held him for an extra 15 or 20 minutes while silent tears of gratitude stream down my cheeks for the simple fact that I have my baby here to hold close, and that the sound of my voice is at least some comfort to him--that I'm not a complete stranger to him. I can't even tell you how thrilling it still is every time I hear him get lost in a deeply joyful laugh, or spontaneously smile at me. Most kids do that effortlessly with their parents, but knowing that it doesn't come effortlessly to Bennett and that it could be taken away from us again means it fills my soul each and ever time it happens. I'm not exaggerating. I walk around very close to tears most days--some days happy tears because I'm overwhelmed with gratitude for everything we have with him, and other days sad tears for the fear of his future and the unknown. But overall, it all feels very soul-stretching and emotional because loving Bennett over the last few months of this chaos that is our life feels like it has somehow become an even more vulnerable, terrifying, threatening, and at the same time rewarding, sometimes close-to-Heavenly, and joyful experience than loving him was before seizures, medications, and mutations became regular words in our vocabulary.
I'm not sure I'll ever say "I wouldn't have it any other way"...because, truth be told, I would love for Bennett to never have another seizure and for all of this to have just been a bad dream, but I can honestly say that I am grateful for the new perspective I've gained from these last few difficult months being Bennett's mom, and for the unbelievable love and support our family, friends, and God have (sometimes very literally) lifted us through this with. We will forever be humbled by and grateful for our village helping us raise this cute boy!
Happy first birthday Bennett boy!! We love you so much! <3
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