Honestly, I have been wondering how I’d find enough content to fill an annual recap for this year. In some ways, we don’t really have much to report and are, like many, ready to regard 2020 as the dumpster fire that it was and move on. There is no doubt that this year has inflicted an unusual dose of anxiety, inspired lots of questionable purchases, and encouraged a diet of mainly comfort foods and booze. That said, despite truly challenging our physical, mental and social well being, our family has managed to thrive in quarantine this year. We sheltered in place beginning March 15th and have remained isolated since, mostly an abundance of caution for Fern. We made a few exceptions along the way, but I can honestly say that I can count with my fingers the number of times I’ve driven a car since March. I haven’t been into a grocery store or mall in over a year and haven’t seen most of our friends and family in longer than ever. Wild as it seems, I am beyond thankful for this year at home and our chance to bond as a family, to grow and learn and live so hard in our house that we’re finally ready to start making some home improvements. We miss you all deeply and hope this letter finds you happy and healthy and at home. As always, this recap is mostly for my records, one of my favorite Christmas traditions, and a chance to share a bit about the 2020 goings on with Family P.
After having the flu make the rounds in December of last year, we were already pretty hunkered down for the Winter to reduce our risk of normal bugs, perhaps easing us into the long year at home. Olivia rocked her Girl Scout cookie sales goals, hitting up friends and neighbors and womaning booths with her troop. She celebrated her 8th birthday with a fantastic Frozen 2 themed pajama party at home. We managed to get a few nature adventures over the Winter, including Everest’s first jaunt to our family favorite Wahclella Falls. In late February, Fern had RSV for the third year in a row but this year we were successful at managing her symptoms at home—she fought it like a champ!
March brought some big news for our family: a diagnosis for Fern. It’s a newly discovered (2017), exceptionally rare autosomal recessive genetic condition called TBCK Syndrome. You can read more about her diagnosis here, but the Cliff’s Notes are this: She falls on the moderate/less affected end of the spectrum of the disease but nevertheless experiences most of its trademark symptoms. There are less than 100 diagnosed cases worldwide but we are thankful that there is some great research happening at the Children’s Hospital of Philadelphia (CHOP) and we are excited to get connected with her new team post-pandemic. A light at the end of the tunnel.
As stay home orders were made, we began limiting our adventures out to nature and essentials (read: beer). We added Settlers of Catan and Ticket to Ride to our collection and quickly became huge fans, especially Townes! March also brought the emigration of our beloved “Uncle Chip,” my brother, to Boise, Idaho. Our first few months at home, we fully embraced our forested urban homestead, frequently escaping outside during breaks from distance learning and therapies. Dan settled into his new “office” in the basement, still complete with tiki flair (Dan: Everyone who’s seen our basement tells me I need to face the camera the other direction. If you know you know.)
Early in the year we started brainstorming big renovation ideas for our almost 100-year old house and, although we’ve ultimately decided to start small, we did take care of some of less fun but necessary adulting house stuff, including a new electrical panel, the demolition of an old deck, and a new retaining wall. I learned two new words, “culvert” and “vactor” when we discovered that we had one of the former that desperately needed the latter.
In April, we celebrated our first quarantine birthday. Townes turned 6 and we spent most of the day playing video games. Townes was also the first of us to fall victim to the quarantine haircut which quickly escalated into a buzz. Just as we were starting to tire of the distance learning routine, late spring brought warmer, drier weather and we were thankful for the extra space our yard offered. At 6 and 8 years old, Townes and Olivia, needing some freedom, were granted permission to roam our little piece of forest with walkie talkies in hand.
Our exercise game at this point of the year was pretty strong. Everest became a daily walker/runner and we discovered numerous new neighborhood nature spots. In effort to avoid doom-scrolling through COVID-19 conspiracy and death tolls, I made lots of pandemic purchases under the guise of supporting local, including a CSA share at Our Table Cooperative, a wine club membership at Stoller Vineyards and enough books from Annie Bloom’s and Powell’s to fill a small library.
After two months at home, we fine-tuned our therapy routine with Fern and thanks to the most amazing providers her developmental gains continued seamlessly. In fact, in March, Fern shocked us all by taking her first independent steps! We were all thankful for the school year to come to an end and excited for a break from screens. We added weekly virtual Catan dates with Bethany and Chase, only recently realizing that our low tech suspended phone camera/computer set-up could actually be improved by a platform called Board Game Arena.
We opened an intense but necessary dialogue about white privilege and racial injustice in our country and identified ways our family could become better allies. Olivia and Townes were quick to make signs and naturally wanted to join our neighborhood protests and vigils. We still have so much to learn as a family and are thankful for our like-minded community and neighbors here in Portland and heed the call to listen and learn from BIPOC voices.
Summer had us missing some of our local jaunts but we were able to squeeze in a few hikes and berry picking adventures. Townes and Olivia quickly became each other’s best friends, spending almost all of their time together, outside more than in, tending to fairy houses, building forts, swinging, and reading in the hammock. Honestly, they’re living their best life and only slowing down long enough to eat an impressive amount of snacks. Looking back, I guess this was also around the time that we capitulated that bagels, cereal and yogurt were foods that could be enjoyed at any time of day and that the unpronounceable ingredients in Goldfish were a necessary evil.
In August, after months flying under the radar and clearly determined to keep us on our toes, Fern mysteriously lost coordination and stopped walking. A regression that resulted in lots of bloodwork, testing and an urgent visit to the neurologist… all to discover that we had accidentally overdosed her on B vitamins. A major face-palm moment for me but thankfully completely reversible. A quick tweak to her dosage and she was back to running circles around us just in time for her 4th birthday. After weeks of wildfire smoke forcing us inside, a better-late-than-never backyard bounce house celebration was much needed!
We embarked on our homeschool journey with Olivia starting 3rd grade and Townes in 1st. Thankful that both kids were already voracious readers and were generally very excited about having a new teacher and fewer Zoom calls! Fall highlights included a Moomin book party, a moss study, mushroom hunts, and American history from the perspective of European Colonists, African Americans and Native peoples.
Gramma G came to Portland for a much needed visit, becoming the first and only human we had/have seen since March without a mask. The kids enjoyed some much needed attention and the kind of magical entertainment only a grandparent can provide. Such a reminder of our desperate need for family that we very seriously considered a move to Boise ourselves! Fall also brought an unexpected bout of illness, Dan with stress-induced shingles and consequently, Fern with chicken pox. Miserable as it was for all parties, ultimately we’re thankful for strong immune systems and virtual medicine.
Unlike summer, many of our favorite Fall traditions were unaffected by our home boundedness. We studied the changing foliage at Gabriel Park, bark and tree rings at Tryon Creek, and dipped leaves in wax to make festive autumn garlands. We rediscovered some favorite Waldorf crafts and traditions like felting acorns and handmade lanterns. The changing season always brings a flood of creatures, including our favorite barred owl, Harry, to our little forest, inspiring the investment of a couple of trail cameras. Although we failed to capture him in flight, we did catch multiple coyotes and raccoons in addition to interesting footage of our flock of 7 chickens.
In an effort to make multiplication fun, we added lots of edible manipulatives (read: candy) to our homeschooling kit. Walks to the bakery to celebrate surviving the school week became a regular thing. On Halloween, a crow, a nurse, and a Yoshi donned costumes and collected treats via scavenger hunt before gorging themselves in front of a spooky movie. Like many, we spent Thanksgiving at home and our Black Friday purchases were things that would help us survive the rainy months at home—gymnastics mats, a crash pad, and a ball pit for Fern.
Really embracing a life of luxury and a 2020 vibe, we had the ugliest, most expensive Nordman Fir delivered from a local tree farm only realizing how truly bad it was AFTER the truck pulled out of the driveway. Alas, she’s trimmed and beautiful and missing all of her ornaments from toddler height down. We were thankful that many of our Winter favs nicely pivoted for COVID precaution and we enjoyed Oregon Zoo Lights from our cozy car and had delicious tamales delivered to our doorstep from a local shop. Shout out to Cathy Koperek and Dawn Johnson whose recipes we have adopted as family tradition and Gramma G for providing a truly magical Advent experience for the kids. As much as we are all ready for new beginnings, we feel truly blessed this year for our health, happiness and our cozy home. Cheers to the New Year!
Quick to tell you that she is almost 9, Olivia seems to grow taller and more confident by the day. Her love for chickens still runs deep, dominating the theme of most of her writing and art. She has made huge efforts in advocating for a more plant-based diet for our family and has big dreams of becoming a farmer (or artist (why not both?)) one day. She’s enjoyed being able to stay connected with school friends through Girl Scouts, online watercolor classes, and virtual playdates. Her love for fuzzy things still rivals my own and she can frequently be found devouring a Raina Tagilmeier book snuggled in her bed. Crop tops, sweat pants and scrunchies paired with plenty of sass and a love for Taylor Swift are a constant reminder that we’re on the brink of pre-teendom. More than once our homeschool lessons have ended in stalemate, “Don’t tell me what to do!” scrawled on the white board.
To Townes, games are life. Board games, card games, math games, and especially video games. Super Mario Odyssey and Mario Kart 8 Deluxe are tied for his favorite and with the help of streamer Bricks O’Brien, he’s become quite the champ. His gaming skills are matched only by his reading abilities, where he’s surpassed the 2nd grade level. Particularly fond of graphic novels, Townes loves Dog Man, Bug Boys, and the Press Start series. Still mama’s boy, he loves to snuggle and continues to be our best sleeper and almost always the last to wake up. His favorite food groups are grains and dairy making breakfast the highlight of his day. He can hold his own on family game night, even advanced games like Ticket to Ride and Settlers of Catan, and will be the first to correct you on any rule violations, citing the rule book verbatim.
These days it only takes a few minutes to lose track of Fern, and in mere moments she is capable of complete and utter destruction. No unlocked cabinet, plant or ajar toilet seat is safe when she’s roaming the house, and she’s always roaming the house. Fern’s favorite playmate is our robot vacuum, Roomba, and thankfully Roomba doesn’t mind taking babydolls or anything else Fern can find for a ride around the house. Fern is passionate about food and loves to eat anything and everything that is put in front of her (and things that are not!) She still adheres to a gluten free, dairy free diet but luckily her favorite foods are eggs, berries, avocado, and Trader Joe’s Bambas. She thoroughly enjoys her weekly therapies (occupational, physical, and speech) and we are SO thankful to have such a wonderful team supporting her development. She loves all types of sensory play: water, lentils, and slime are in regular rotation; and generally, the mess is worth it! Having her older siblings home this year has been pure magic for Fern and it’s had an amazing impact on her development. Also worth celebration, for the first time EVER, Fern managed to go an entire year without a visit to the ER!
I will remember 2020 as the year I embraced my inner introvert. The slower pace of life was honestly the respite I was craving. Life without daily pick-ups and drop-offs, numerous weekly therapy appointments and extracurriculars, and just staying home sounded blissful. And although, 9 months later, I am tiring of the lack of social interaction and desperately needing a change of scenery, I’m mostly thankful for the year at home. Mom-ing during a pandemic isn’t for the faint of heart and long solo walks in the neighborhood have become my lifeline. I’m not really ashamed to have gained the COVID-19 (pounds), because honestly, the bread and beer were TOTALLY worth it. 2021 is the year we all buy Peletons, right? After 9 long years, I officially closed the pregnancy/nursing chapter of my life and I won’t lie, it is wonderful to not have any small humans relying on my body for nutrition. My sun up to sun down is still full of cooking, cleaning, planning and now teaching. I’ve never felt so validated in my decision to have 100% of our groceries delivered.
In September of 2019 I went to my first check up in six or so years where Dr. Oliver asked me, “what do you do for exercise?” I told her, “oh, you know, we hike sometimes on the weekends.” She scoffed and told me that that didn’t count. She then told me that 40 was a cliff and that I needed to get my act together. I loved that, and I tell that story to anyone who’ll listen. While it took a few months to take that advice, in December of last year I decided to give running a shot, marking the very first intentional exercise of my life. It’s been a climb—not unlike all of the hills in SW Portland I’ve been climbing this year—but as I’m writing this on Christmas Eve, I’ve just returned from a run on my shorter route, it’s a loop around Multnomah Village at about three-and-a-half miles and it was my fastest ever: my average pace was 8:32/mi. This, I think, works as a metaphor for 2020. This year we dug in in those places we knew we needed to, because we saw that we had no other choice. Meg and I are closer than we’ve been since Fern was born. We’re actually doing those weekly family hygge nights on the calendar with board games and snacks (Olivia and I have been playing a lot of chess as of late), and we work together every day to get things done, to make room for some fun stuff, and to love each other in the unique ways we each need it.
And there you have it, four and a half pages later, our year in review. And I was so worried about having nothing to say. Again, from the bottom of our hearts, we hope this finds you happy, healthy and at home. We can’t wait to be together again and until then… we Zoom.
Megan, Ed. Dan
For The Pittman Family
Photos by Lauren Allen Photography
Lots of pictures of daily life Here
Here is my best effot to offer a (very watered down) summary of what brought us here, and to catch those of you up with whom we have come to know in the past 3 or 4 years. In March of 2016 I was 11 weeks pregnant with Fern, when we discovered an increased Nuchal Translucency and after a CVS (Chorionic Villus Sampling) were strongly encouraged to consider termination and given odds of a less than 8% positive outcome. After lots of tears and prayer we came to conclusion that there wasn’t really any question for us. Our family made the decision that night to believe that Fern would be a miracle. Slowly, over the next 8 weeks we watched as the swelling around her neck and body slowly resolved. During her anataomy scan we discovered a minor muscual VSD (Ventricular Septal Defect) but as far as we could tell, mostly everything was normal-ish. The stress and anxiety of weekly sonograms, NST (nonstress test) and appointments left me with gestational hypertension and after failing a NST, I was induced at 37 weeks. My labor and delivery with Fern was honestly probably the single most normal part of my pregnancy. I don’t recall her numbers but her initial Apgar score was lower but was not ever a topic of concern. Outside of a echocardiogram, Fern didn’t need any extra testing and we were home from the hopsital a few days later with our perfect baby girl. The first 6 weeks at home were blissful but sleepless and my undiagnosed post partum anxiety was pretty intense. It wasn’t until about 6 months later that we started to notice that Fern wasn’t meeting developmental milestones (not smiling, not rolling over, not sitting, etc.) and were referred to a developmental pediatician. From there we invited the genetics and neurology teams to the party, added PT, OT, Speech, Feeding Therapy and Early Intervention and our journey jumped into hyperspeed. The next 2 years were a blur, a series of appointments, tests, bloodwork, countless ER visits… and very slow but steady developmental growth. Fern’s neurologist ordered an EEG and MRI after a series of seizures and we added seizure protocol to our arsenal. Genetics has tested for thousands of known conditions associated with Fern’s primary diagnoses: hypotonia (low muscle tone), global developmental delay, hyporeflexia (absent reflexes) and seizures. Each test came back with normal results or the dreaded, “variant of uncertain significance.” (AKA. We can see that something is different… and it’s interesting… but we don’t know WHY.) Meanwhile, Fern’s development has progressed at a consistent, albeit slow, pace. She’s now close to taking independant steps (she can take 2-3 and has a personal record of 7!), is doing some free standing, can isolate a pointer finger. She can say some vowel sounds (most A and U), can communicate “up” and “all done” with nonverbal communication and can follow one-step instructions. Fern has taught us so much but especially how to slow down and celebrate each and every milestone. It is such a privilege to watch how hard she pushes herself to master things that come so naturally to neurotypical kiddos and we are SO proud of her. I also can’t say enough how thankful I am for the amazing team of providers we have assembled. Without such caring and dedicated individuals Fern wouldn’t be making the progress she has and I would be clueless in my role in her therapies.
Over the past year our genetics team had asked us to consider Whole Exome Sequencing (WES) as the only sensible genetic testing option. WES is considered investigative testing and is not covered by many insurance companies, including ours. Our genetics counselor also shared with us that although we would be sequencing all of Fern’s exome (the protein-coding regions of genes in the genome) that there was about a 60% chance that we would find nothing of value, a 20% chance that we would find a mutation that fit into the “variant of uncertain significance” category and a 20% chance that we would find a gene mutation that had been recognized as a disease or condition and resulted in a diagnosis. We ultimately decided to move forward with testing, understanding that it was likely that it was still a long shot that we would walk away with real answers. Sequencing itself is quick, but analysis took over 3 months and two weeks ago we got a surprising phone call. We have a diagnosis.
Fern has TBCK-related encephalopathy, a rare neurogenetic disorder. It is an autosomal recessive disease, meaning it is caused by genetic mutations usually carried by both parents. There are only about 35-40 reported cases worldwide. TBCK syndrome causes a wide range of symptoms and from what we can tell there is a lots of variation with how impacted children are. Like Fern, kiddos experience moderate to severe developmental developmental delays and low muscle tone, seizures, absent reflexes, and hypercholesterolemia. TBCK was discovered in 2016 by Dr. Xilma Ortiz-Gonzalez and Dr. Elizabeth Bhoj at Children’s Hospital of Philidelphia where they are currently working to better understand TBCK and identify possible treatments.
Honestly, the past few weeks have been a whirlwind of emotion and processing. We have an appointment this monrth with the genetics team to go over the results and better understand where Fern fits on a very broard spectrum of symptoms. In the meantime, we are doing our best to not jump down the very small rabbit hole that exists with researching on our own. Mostly likley our therapies will stay the same and day-to-day life will look no different than it has for the past couple of years. Since this is as much as we know right now we are immediately staying focused on what we can do to continue to help her grow and develop. Obviously we are doing our best to avoid respiratory illnesses (as Fern is at higher risk for secondary complications due to her hypotonia), we will continue with weekly therapies (OT, PT, Speech) and Early Intervention and continue to monitor her closely with food and water. I imagine that there will likely be more testing reccomended by Fern’s neurologist in the coming weeks and we will get connected to the patient registry at CHOP to start to look into treatment/studies available.
We are so thankful to have friends and family who have continued to support our family on this journey. We are feeling both relieved and anxious to learn more about this next chapter. Hopefully we will have more to share in a few weeks. There are very few places to find more information but here are a few resources we have found helpful if you’d like to know more:
Friends and Family,
Glad you’re here! Welcome to our annual Christmas newsletter, my attempt to recap our year in the hopes that I’ll be able to remember it all when I’m old(er). For the more millennial-apropos account of our year, feel free to just scroll here and you’ll get the gist.
In January we celebrated our 3-year Pittlandia anniversary with our first Washington-side Columbia Gorge adventure: a hike to Pool of the Winds at Hamilton Mountain.
In early February, Fern had her first major illness (RSV) with no seizures! We were thankful to be able to manage her symptoms at home. We also escaped as a family to the coast (nebulizer in tow) for a low-key Presidents Day Weekend getaway. While we made stops at the Oregon Coast Aquarium, Haystack Rock, Rogue Brewing, and Devil’s Punchbowl, the kids agree that the highlight was seeing hail-snow on the beach! We saw record snowfalls and did our best to keep our little-feathered friends happy by serving up hot oatmeal in the mornings. We celebrated Olivia’s turning 6 with her two best buddies and their sweet mamas at the Oregon Ballet Theatre’s magical production of Alice in Wonderland.
In March, we added a couple of extracurriculars to the calendar: Townes in “Messy Art” at the Multnomah Art Center with Teacher Vicki and Olivia in an introductory dance class including ballet, tap, and jazz. Our Spring Break staycation included lots of Super Nature Adventure hikes, play dates, and trips to the Rhododendron Gardens and Forest Park. We thoroughly enjoyed the return of the sunshine, celebrated Easter with the Smiths and frolicked in the tulips with the Chens!
In April, we celebrated Townes’ 4th year with a Super Nature Adventure at Cooper Mountain Nature Park. Olivia was recognized as one of the best writers in her kindergarten class at the Maplewood “Writer’s Tea”, where she read an excerpt from her how-to, How To Make A Peanut Butter and Jelly Sandwich. Townes’ “Messy Art” was featured in the Spring Art Show at the MAC and he quite enjoyed the spotlight and opportunity to share his artistic creations.
We all sang and danced and made flower crowns at Townes’ preschool May Day celebration, one of our favorite Waldorf traditions. Spring was the beginning of a huge developmental growth spurt for Fern and she mastered the art of pulling to stand, crawling, and cruising all over the course of just a few months!
By June we were super excited for some fresh berries and for u-pick season to arrive. Olivia officially became a kindergarten graduate and we made our way back out to the coast to celebrate Father’s Day with Papa G.
For the third year running, we made it to the Tigard Hot Air Balloon festival and reconfirmed that yes, the 4:45 AM wake up call is totally worth it. We may be made for Summer in Oregon—Thursday night concerts at the farm, berry picking, lavender harvesting, walks to the food trucks for al fresco dining—definitely our jam.
Our official Summer kick-off entailed a Fourth of July was a trip to a tiny island in the Puget Sound, Decatur Island to be specific, with our dear friends the Rays. It was definitely a memorable vacation. To get there our journey included car, a locals-only ferry, and the back of a pick-up. There were no grocery store, no restaurants, and only spotty cell service. However, there was also the most spectacular scenery and a perfect opportunity to disconnect. Gramma G snuck in a Summer trip and we were lucky to fit just about everything in, peach picking, snow cones and a trip to Hug Point for some tide-pooling and sandcastle making! At the end of July, we set off on our longest road trip yet with the kids: to Boise, ID for a week with Papa G and my siblings and their families. We ate some potatoes, hiked some high desert terrain, and had many a trampoline-base-water-balloon-fight in the backyard of our AirBnB. Despite all that, the highlight for me was finding out that I’m going to be an Auntie (again!). My youngest sister Emily and her husband Holden are expecting their first sweet baby this Winter!
August. After a quick turn around at home, we set off to meet up with Mamaw and the Rakowska family for a week in Nederland, Colorado. Amidst a pile of cousins, we enjoyed hiking, kayak, and paddle-boarding, and exploring the Boulder area. Soon after, dressed in tie-dye, we marched with Townes’ preschool in our neighborhood Multnomah Days Parade. Bittersweetly, we spent as much time as possible getting in our last hikes, u-picks, and splashes before Summer said goodbye.
September brought lots of change for our family. The transition from the easy days of Summer to more structure and routine was welcomed on all fronts. Dan started a new job, a new company in fact, with some of the coworkers he’d met at PolySync after they were all suddenly let go. Auxon’s mission is to make critical software systems safer, by making software engineering feel more like real engineering. Olivia started the 1st grade in Mrs. Abel’s class at Maplewood Elementary and Townes, his second year of preschool at Woodhaven School in the Sunflower Class. To commemorate Fern’s second year here on Earth, she got intimate with a New Orlean’s style doughnut and had a nice quality of life improvement precipitated by a pair of tubes in her ears. Yay for hearing! Dan traveled to Saint Louis to speak about dependent type theory and using it to prove properties about software at Strangeloop, a conference for people who are doing interesting and esoteric things in software.
Dan and I celebrated our 8th Wedding Anniversary in October. We saw the addition of a fantastic new developmental pediatrician, and an occupational therapist to Fern’s team and embarked on another round of genetic tests. Auntie Em came for a special solo visit and we spent lots of time catching up, indulging pregnancy cravings, and carving pumpkins! For Hallows eve, we took to the ‘hood with a chicken, a robot, and tiny pink superhero on a surprisingly dry night of trick-or-treating.
November came and we welcomed the darker days of the season in a celebration of light and giving; the lantern walk through the forest at Townes’ Waldorf preschool. Dan imported some of his friends for a Portland staycation full of music, beer, poetry, and hiking. We enjoyed a low-key Thanksgiving at home with the additions of Mamaw and Uncle Chip, complete with handmade place cards and after-dinner entertainment.
We started December by paying reverence through the Spiral Walk at Woodhaven, a Waldorf tradition meant to celebrate the coming turn of seasons and the “rebirth of light”. The days are extra short here this time of year, and although it’s always an adjustment, we welcome the opportunity to for all things hygge: toasty fires, warm wool socks, hot homemade soups, puzzles and books, and crafting and baking. I know I mentioned earlier that we were MADE for PNW summers, but we have truly come to appreciate the seasons here.
Once again, we ventured out to Hillsboro farmland to cut ourselves down a Christmas tree. On account of us waiting a week or so longer this year (December 1st!), coupled with a tragic shortage of firs in the PNW, we found ourselves with literal slim-pickings. This year, our Noble Fir is closer to a pear in shape than to a cone, but this obtuseness doesn’t affect its efficacy as a source of gravity for presents, mirth, and Fern. We have been slowly working our way through our Advent bucket list, a mother-daughter date to the Oregon Ballet Theatre’s The Nutcracker, making Dawn’s famous toffee, visiting Peacock Lane, seeing the Zoo Lights, etc. We’ll end 2018 in the company of all of our family, trickling in a little at a time taking us into the new year surrounded by love!
Although I have glazed over it here, our year was filled with a fair amount of trial. Dan’s grandfather passed away over the summer and he made a last minute trip to Ft. Worth to spend time with his family. We are still ticking boxes along Fern’s medical journey and although she is making steady progress, we still don’t really have any concrete answers. We have also been adjusting to life as pioneers/supporters of pioneers in the tech start-up world. Our small flock of hens sadly decreased by 2, one taken by illness (Sam), one by a predator (Oakie). All in all, we are so thankful in these circumstances as 2018 has been happy and healthy. We hope that we can reflect the warmth we feel on to you and yours.
M + D
Olivia (6 years old)
Olivia started the year very passionate about ballet but quickly realized that her love for the art was not strong enough to overcome her aversion to tights. In the Spring, she gave gymnastics a try and found it to be much more of a fit! This Fall she joined Girl Scouts and has really bonded with her girls in her Daisy troop. She hopes to start an after-school watercolor program next year and possibly give ninja classes a try! Most of her free time is spent drawing or writing and “she wants to be a children’s author and illustrator when she grows up. With a passion, Olivia LOVES chickens—snuggling ours, learning about chicken care, just about everything except cleaning out the coop! She’s a self-proclaimed Pet-a-tarian (def: one who does not eat pets), i.e., she is not currently eating chicken. Her favorite food, however, hot dogs. (The organic, grass-fed, nitrate free kind, of course!) She has started taking the bus to/from school occasionally and although she finds it a bit “boring,” we know it’s been a huge source of independence building. The tooth fairy visited has our house twice this year and we’re predicting a whole lot more visits next year! Day by day, looking and acting less and less like a little kid and more like a big one, She is quite precocious and she keeps us on our toes.
Townes (4 years old)
Townes is possibly a little mechanic in the making. Our little button pusher, switch flipper, knob turner – I can always count on him to turn all the lights off before we leave the house, start the washer and unlock the car. He loves to figure out how things work and is especially fascinated by remote controlled anything. We frequently find him “watching” Spotify, singing along to “The Beat Bugs” (A Netflix show based on tunes from the Beatles). He has formed lots of his own friendships this year in preschool and even requested some “drop-off” playdates! Still very attached in the overnight hours, Townes wakes up frequently requesting a “snuggle part-a-ner.” He’s a carb guy and can pack away an entire baguette if he’s allowed. Still a very slender fella, our biggest struggle with Townes is keeping his pants pulled up. Perhaps Santa will bring him some suspenders? He’s kind and gentle and although it takes him a good while to warm-up when he’s in his comfort zone, he’s a heart-warmer.
Fern (2 years old)
In complete toddler-fashion, Fern has entered the “getting into everything” phase. She loves her weekly sessions with our physical therapist, Helga and is working on taking facilitated steps, ascending/descending stairs and free standing. With her occupational therapist Stefanie, we have focused on troubleshooting sleeping and feeding challenges, sensory integration techniques, and productive play. Some next-level toddler proofing is in our future as Fern’s most recent discoveries have included water in the toilet, removing items from the dishwasher, and climbing on top of things. She’s lucky to have two of the most patient siblings who love to play at her level, to read and sing to her (“The Itsy Bitsy Spider” is her fav), and to chase her with the handheld vacuum. Quite the social butterfly, she recognizes familiar faces and loves it most when Townes’ preschool class sings the goodbye song to her. Her giggle is the most magical sound and we can’t wait for her to find her voice. She’s mastered some big skills this year and made huge developmental gains! I’ll save a true medical update for a separate post. We are constantly amazed at her and are celebrating every single milestone!
Mostly working on his intellect. Dan is frequently reading several books at the same time, and even squeezing a weekly Proust book club in. He finds time to read and learn (he’s currently learning French!) on his bus ride to and from his new office downtown. He’s continued to foster an interest in logic and philosophy, with some of this year’s highlights at the intersection of the two with thinkers like Wittgenstein, Frege, and Quine. For the past 4 months, he’s been working on starting a company and as the kids will tell you, ”teaching cars how to drive themselves.” He’s a master dish-doer, coffee brewer, and breakfast burrito and waffle maker. He fills all the water bottles, reads all the books at bedtime, and never forgets to stock the fridge with all the finest PNW IPAs. He reminds me to stay positive, encourages me on the daily, and tries his hardest to get me to slow down long enough for some lovin’.
Meg (as seen by Dan)
Meg is the star at the center of the universe of our little family—keeping us all together. She’s passed on her love for craft to both Townes and Olivia, keeping them well supplied for any creative endeavor they may wish to embark on. She also took up bullet journaling this year, the perfect outlet for an acutely organized person with an artistic bent. She’s VP of the board at Townes’ preschool and has been able to exercise those empathic (grown-up) people management skills she honed in school. But more than anything, she’s the ideal mother to our children, loving them fiercely, patiently, and without asking for hardly anything in return (I think she would say a “thank you, mom” would be nice once in a while). She gives her whole self to us, and we are all so lucky to have her.
(Sincerest apologies if you are landing here from the link on our Christmas card! Should you wish to skip this post for something lighter, just scroll down… or go here)
Over the past month, (I can’t believe it’s been a month since most recent trip to the ER! Time flies) we’ve seen both Fern’s neurologist and cardiologist at OHSU and I just wanted to type up a quick update!
Following her seizures in the ER on black Friday, we were sent home with directions to follow-up with Fern’s neurologist and orders for a sedated MRI . The ER doctors started Fern on an anti-seizure medication (Keppra) at the lowest possible dose that theoretically should raise the threshold at which she would have a seizure, hopefully preventing any more seizures. Her blood work also came back showing that she was severely anemic so we started her on an iron supplement that she’ll likely stay on until she starts ingesting more iron-rich foods.
Although it was tough to see our baby go under anesthesia, the MRI went very smoothly and the doctors were able to get great pictures of her brain. She tolerated the sedation well and didn’t require any help keeping her vitals strong. Her blood pressure was somewhat alarmingly high during the test an the anesthesiologist felt that a follow-up with cardio was necessary considering her heart murmur.
Our appointment with cardio was VERY reassuring! Our doctor felt very confident that the VSD would still likely close on it’s own. Although most cases of this kind of VSD close sometime in the first year of life, the majority of those that don’t are still likely to close on their own within the first 5-6 years of life and don’t require surgery. The location of the VSD is not cause for concern and in his opinion, not something they would operate on unless it was causing some kind of symptoms. More or less, his words were, “You’ve got a green light from cardio!”
The MRI results also came back “unremarkable” and as far as we can tell for now, Fern’s brain looks totally normal. Obviously this is a huge relief and answered prayer but also leaves us a little in the dark as far as where to go next. Our neurologist recommended a referral to genetics next. Although we have already done extensive genetic testing (mostly when I was still pregnant) genetics may have some ideas on other syndromes, conditions, etc. to test for. She also recommended a referral to a pediatric ophthalmologist who might be able to provide another angle or opinion, also just checking another box/getting another “green light” to add to Fern’s chart. She also sent us home with a prescription for a rescue drug (a suppository sedative) to use in the case that we are home and Fern has another seizure lasting longer than 5 minutes. Theoretically she should be able to stay home even if she has another short/mild seizure but we, of course, wouldn’t hesitate to go back to the hospital if we felt like it was necessary or if anything new/different presented.
Cold and flu season has officially hit our home. I suspect that this is just a side effect of three young kids. Olivia came down with a nasty (likely flu?) bug on Christmas Eve. It would appear that Townes is next and we appreciate all the prayers in the world that we can keep it contained to just the two of them.
2017 got off to a fairly slow start with lots of snow days, hygge, and pho. The kids took turns in a constant rotation of flu, cold, and stomach bugs; but thankfully, looking back, all I really remember is extra snuggles and home time. Fern’s adventures at OHSU continued with our first appointment in the CDRC (Childhood Developmental Rehabilitation Center) and we added a wonderful physical therapist, Helga, to her team of providers.
In February, we completed our first hike as a family of 5, in near-freezing temperatures, at Silver Falls State Park. Olivia celebrated her birthday with a dozen or so preschool friends by way of a unicorn-themed birthday party at our house, complete with a rainbow cake, piñata, and lots of glitter. Dan was able to sneak away for a weekend stay-cation with “his dudes”, experiencing Portland through kid-free eyes.
In the Spring, we made our first “triangle trip” as a family of 5: Portland -> Dallas -> Orange County. Texas highlights included: a trip to the Dallas Arboretum with loads of pals, day trip to Ft. Worth to visit grandparents and a sweet new babe, some country-time with cousins and lots of filling up on salsa and Texas BBQ! Successful flights and juggling of 3 carseats and luggage for 5… California didn’t disappoint with always wonderful weather – Fern, especially, enjoyed loads of sunshine and tummy time in short sleeves! We made treks to Balboa and Laguna, rode by ferry and by boat, ate tacos at loco and walked on the pier. Gramma G treated Olivia to a special trip to the Magic Kingdom that she’s sure to say was the highlight of her year!
In April, we had big plans to make some of our first REAL home improvements (new carpet!) which were somewhat more complicated than we bargained for. Upon returning home from our two-week vacation, we spent a few days in our own beds only to be out again. The discovery of asbestos flooring (hidden beneath our current carpet) resulted in a two-week process of abatement, demo, and rescheduling installation. Living in a hotel room for two weeks with three kids five and under isn’t for the faint of heart! That said, Townes still celebrated his third year and the Easter Bunny managed to find us, in spite of the circumstances!
With fresh new carpet, in May we finally officially celebrated our little Townes man with a “pancake party” at home with a few of his close buds. Olivia danced around the Maypole wearing a crown of flowers at the May Day celebration at her preschool. For Memorial Day weekend, Papa G came for a quick visit and helped us check another project off the list: New stairs off the back of our house. We also managed hikes to Wachlella Falls in the Columbia River Gorge and a nature walk through the Redwoods at the Hoyt Arboretum.
As always, our plans to u-pick our way through summer went off without a hitch starting with strawberries in June. Trying our own hands at a green thumb, we planted, and successfully grew, several of our own veggies in our backyard garden this year. Olivia enjoyed her last few days of preschool and we kicked off summer with lots of playdates and splash pad adventures. Both kiddos are becoming great little hikers and enjoyed “Super Nature Adventures” to Tryon Creek State Park, Powell Butte Nature Park and Wapato Greenway on Sauvie Island. July was packed with summer concerts at Kruger Farms, more berries, and a week-long escape to Redmond/Bend with Gramma G. Come August, Mamaw brought Remie for a special cousin visit and we hiked our last hike in the Gorge as we knew it before a massive fire broke out, scorching most of our favorite trails. Olivia enjoyed her first summer day-camp at the South West Community Center Community Gardens and Townes at Woodhaven Preschool camp. We walked in our neighborhood “Multnomah Days” parade and enjoyed the Solar Eclipse at 98% totality from our backyard. The kids would say the highlight of our summer was the addition of 6 laying hens to our family and our official embarkation on an urban homestead journey. Affectionately named, Waffles, Oakie, Lay-A, Coconut, and Sam and Ella, they are slowly adjusting to their extra-snuggly handlers. Because many will ask, we get 5-6 eggs a day in the spring/summer and 2-3 in the winter.
September was a big month of change for us. All within its first week, Olivia started Kindergarten at the neighborhood elementary school, Townes started preschool at our sweet Waldorf-inspired co-op, and Fern turned one! We spent the bulk of the month adjusting to our new routine and pick-up/drop-off schedules but were nonetheless lucky to squeeze in some Auntie and Uncle time with all my siblings in town for a long weekend. My brother, Christopher, also settled in to a pretty consistent schedule at work leaving us looking forward to “Chip Fridays.” I am so thankful for his help ushering us in to the weekend each week and the kids adore having a fresh audience.
Gramma G made an extra trip in October and got to experience the cusp of Fall in the Pacific Northwest with some misty morning hikes and apple picking. We were lucky with plenty of dry weekends for a few family pumpkin adventures followed by one very soggy field trip to Bella Organics on Sauvie Island. On Halloween, with a ballerina, train engineer and sleepy little bumblebee, we enjoyed trick or treating with Olivia’s kinder pals. Favorite fall hikes included Hoyt Arboretum, Forest Park “Witches’ Castle” and a “leaf walk” at Laurelhurst Park.
November brought lots of germs and sick bugs to our house. Fern had her first febrile seizure, in Fernie fashion, sending us to the ER by ambulance and keeping us on our toes. Dan started a new job at Polysync – math, and self-driven cars is what he does. We welcomed the darker days with a celebration of light and giving with a sweet Waldorf tradition, a lantern walk through the forest, at Townes’s school. November was filled with long afternoons practicing reading fireside with hot apple cider and popcorn. We hosted Thanksgiving with Auntie B and Uncle Chip and enjoyed a fabulous ballet performance starring none other than Olivia Kate Pittman. We “opted outside” and selected our annual Noble Fir at a Christmas tree farm in Sherwood. Unfortunately, Friday also brought on Fern’s second and third seizures and we spent 24 hours in the ER running all sorts of tests. A black Friday indeed.
Thankfully, December brought unusually dry weather and we’ve been fortunate to enjoy lots of Christmas activities outside! Townes walked in his first spiral walk at Woodhaven, another wonderful Waldorf tradition. The children walk to the center of a spiral of evergreen branches where they light a candle, then retrace their steps back to their families. Singing and watching the light in the room grow was such a wonderful reminder of the light we carry within, and the importance of sharing it with others during this season. The days are extra short here; sunset on the solstice is at 4:29 pm! I’ve really come to enjoy the opportunity to spend extra time creating coziness and warmth at home. We’re still working our way through a long list of advent actives and looking forward to a solstice hike, the grotto lights, Peacock Lane, and spending lots of our hygge time with family and friends!
We are, again, so thankful for the enormous amount of support and love we’ve felt from our friends and family this year as we navigate through becoming a family of 5 and the ongoing FernieJourney. This has definitely been a year of growing deeper in many of our relationships and friendships (far and near) and we are profoundly grateful for our “village.” Our plans for next year include a summertime trip with friends to the San Juan Islands, celebrating both grandmas turning the big 6-0, some home improvements, and hopefully dipping our toes in the Pacific. Who knows, maybe 2018 will be the year we brave a campsite with kids?!
We sincerely hope that your holiday season is filled with love, light, and peace!
“I subsist on a steady diet of coffee, tacos, and math papers. After the tire fire that is our political predicament became inevitable, I took an interest in the political and economic philosophies of myriad leftists. The ones who resonated with me the most are the midcentury Critical Theorists and the Frankfurt School, and how could they not:
“I’ve been listening to the radio today, and it’s got me thinking about Adorno’s Dialectic of Enlightenment. Which could ultimately be reduced to: Capitalism gives us existential cavities, because we’re so broken at the end of a work day, we just want to consume cultural M&M’s. Wallace talks about this in Although of Course You End Up Becoming Yourself. Paraphrasing: if all you consume is this, you will die. In a meaningful way, you will die. But his assessment does not include the cause, only the symptom. It’s not about incremental fixes, filling those cavities, those holes in our souls, with the occasional square meal. It’s a complete change in diet. Art could save the world.” – From my own notes this year.
These inclinations lead to me joining up with the Democratic Socialists of America, and although time does not permit much activism, I at least make it to monthly meetings to get updates from the folks who do.
Because of our adventures with Fern, I’ve gotten to spend a lot of time with the big kids just the three of us and our favorite outing is, and has been, Hopworks by way of Powell’s.”
On a first name basis with the Instacart and Prime-Now shoppers, I am super thankful for the multitude of grocery delivery options and am proud to say that it’s been months since I set foot in the grocery store with 3 kids in tow! Meal planning, Pinteresting and scouting fun stuff to do, is how I spend the few moments each morning before the kiddos wake up. On the board at Woodhaven, I’ve really enjoyed playing an integral role in directing our little Waldorf co-op. Cooking, cleaning and chauffeuring fill most of my days but I sincerely find so much joy in some of this mundanity. Watching our kids grow and change and helping them become good humans is the most rewarding work. Still dreaming of the day the yoga mat will stop collecting dust and showers are a more regular thing but for now I find pride in my ability to just be the glue that holds us together (with Dan, of course). Currently enjoying the research phase of all things urban homestead and look forward to lots of home projects in the near future.
If you hadn’t guessed already, Olivia is really into ballet at the moment and we have plans to get her started in some classes this Spring. She is loving Kindergarten and is becoming an excellent writer and reader. She loves handling the chicken chores (at least the fun ones) and is an expert at both wrangling and snuggling. She’s an excellent conversationalist, never leaves without a big hug and is blowing our minds with how self-aware and empathic she is becoming. This year has brought a new-found confidence and level of independence that we’ve been waiting for. Olivia (mostly) appropriately dresses herself everyday for school, can whip up a personal batch of guacamole, and loves to fetch the mail from the mailbox solo. Her favorite foods are breakfast burritos and pho, just like her mama.
Townes is sweet and mild; such a snuggler. He has really blossomed in preschool and most days at pick-up can’t wait to tell me all about what he did, who he played with and what the snack was. On days home, he is quite the taskmaster and loves to help with laundry and dishes. Playing with trains, Magnatiles, animals, and marbles are his favorite solo activities. Anything with a button or switch and you can bet that this little dude wants to see what it will do. He’s a tinkerer and thinker – always wanting to understand how things work. While just barely on the growth chart, he’s a slender little fella who, like his Dayda, loves chicken tacos! One-on-One time with this little guy is priceless, he looks forward to Maplewood Coffee dates with mama and going to Powell’s with Dayda.
Fern is so sweet and easy going. Just happy to be held, to watch and wait for someone to engage her, she mostly qualifies as an “easy baby”. I am thankful that Fern’s story is just a tad bit different, as some of her developmental delays have really allowed me to soak up just a tiny bit more time with her in the infant stage. Now sitting unassisted, doing some standing, lots of clapping and smiling, she’s excelled so much with physical therapy and we couldn’t be more proud of how hard she’s working to overcome. In typical 1-year old fashion, she loves getting into everything, loves to play with anything she’s not allowed to and still puts everything in her mouth (including, but not limited to: faces, fingers, hair, and anything paper, plastic or resembling a wrapper.) She loves anything that makes sound and feels like such a big kid when her big brother and sister include her in their games! She loves guacamole, hummus, and chili and makes a huge mess at every meal. Always a positive force, she truly is the perfect completion of our family.
More Pictures Here:
Instagram // @mmoguu
Instagram // @pittman_
Facebook // Megan
Facebook // Daniel
Twitter // @pittma_
My sincerest apologies for the giant gap in documentation of Fern’s story here on this blog. As I’m getting ready to write out annual family newsletter, I’ve realized that I never finished or published Fern’s Birth Story over a year ago. I’d like to attempt a quick catch-up here although, I’m afraid it will likely be the cliff notes.
Sept. 8th 2016 Fern was s born at 37 weeks with no major complications. The muscular ventricular septal defect (VSD) that we saw at our fetal echogram at 19 weeks was still present, resulting in a murmur but did not require surgery. Cardiology ordered follow-up at 1 year.
During the first 6 weeks, we battled strep, flu, stomach bugs, galore at home, but luckily Fern and I both stayed pretty isolated from the germs. Around 6 weeks, some intense colic settled in and we started down a long road to discovery with a lactation consultant. We ultimately decided that a combination of constipation and food sensitivities could be causing her troubles and I experimented with cutting dairy and eggs from around 6 weeks to 8 months! We tried various homeopathic and probiotics and found the most success with a Chinese herbal called “Easy Going.”
Between 4 and 6 months we started having some concerns that Fern wasn’t meeting developmental milestones. The first thing we noticed was that Fern wasn’t smiling (granted, she was crying and screaming a lot, even in calm times, she was less expressive than “normal”). She didn’t smile until just a week shy of 6 months. This was also right around the time she started rolling over. For perspective, these are both milestones that babies start reaching at more like 3-4 months.
At 6 months we were referred to a developmental pediatrician at OHSU Doernbecher Children’s Hospital, Dr. Brian Rogers, who gave Fern her first official diagnosis of congenital hypotonia (low tone). His assessment was essentially that Fern had “significant delays” and that the cause was more likely than not neurological. (This did mean that it was not likely a muscular disorder!) The scariest on the list of possible diagnoses was Cerebral Palsy and although we don’t suspect CP, we haven’t effectively ruled it out. He ordered a test for Prader-Willi Syndrome that came back negative. We reviewed the results of the Micro-Array (Genetic Testing) that we had done when I was pregnant and found nothing interesting.
The developmental delays that Fern has make her eligible for enrollment in a program called Early Childhood Intervention, through Portland Public Schools that is FREE to us. We have a wonderful occupational therapist who comes to our home once a week to check in with Fern and work on developmental milestones.
At this point we also started with weekly physical therapy with a wonderful provider, Helga Lang, who has been working with Fern to start hitting some of those gross motor milestones – rolling, sitting, transitional movement, pulling to stand. She is such a kind and gentle woman and probably the single person, outside of our family, who Fern is most comfortable with.
Around 7 months, we were referred to the OHSU feeding clinic to assess Fern’s feeding abilities. We determined that although feeding was difficult for her it was something we were effectively achieving (she was gaining plenty of weight and overall successful at nursing, even if she was miserable) and that we didn’t need to do further studies until we started solids.
At 9 months, Fern’s heart murmur remained unchanged so we were referred to the cardiologist at OHSU who was unimpressed and saw no urgency in monitoring her through their office. Their direction was to reassess every few months but their prediction was that the VSD would still likely close over time.
We also had another appointment with the feeding clinic at OHSU to get some help with transitioning to solid foods. Swallowing, chewing and coordination are still difficult for Fern and although she is making progress with solids, she’s still “several months behind.” I am so thankful that i have successfully been able to nourish her with essentially breastmilk alone. I still have an ample supply and she seems satiated by just nursing. That said, since she’s never taken a bottle successfully, that means that in 15 months I haven’t been away from Fern for longer than 4 hours.
At 1 year, Fern is sitting up on her own, developing at her own pace in most areas. Her social and emotional development are the only things that are relatively “normal” and she’s a generally happy and easy baby. We were referred at this point to a pediatric neurologist at OHSU, Dr. Erika Finanger. Her assessment was similar to Dr. Rogers, identifying Fern’s delays as primarily gross motor, with some cognitive delay. Since Fern is making progress with weekly physical therapy we are encouraged that she will eventually “catch-up”. We agreed that an MRI was likely the next step but that we would wait until she turned 2.
At 14 months, Nov.1st, I was home with Fern and Townes, Dan had just left to take Olivia to school, and I had just climbed back in bed with a mildly under-the-weather Fernie. I had taken her temperature to make sure she wasn’t running fever and at 100.5 determined that if she had higher fever after I’d fed her and let her nap that I would give her Motrin. After a few minutes of feeding, she began convulsing in my arms and it took me a few seconds to realize what was happening. The seizure lasted a little over a minute. This was long enough for me to get up with her in my arm and walk from our bedroom (where Townes was thankfully watching a show) to the dining room where I grabbed my phone to call our pediatrician. When I reached the after-hours recording, I decided that a 911 call was necessary and hung up to call. Fern was still convulsing about half way through my emergency call. The firetruck arrived in less than 5 minutes (paramedics shortly after) and they took Fern’s temp at it had only climbed 1 degree since I’d taken it 15 min or so prior. Because of her medical history they felt that a trip to the ER was necessary. Luckily, Dan was still close to home and by the time we were strapped in and ready to go he was home to hang with Townes. When we arrived at the hospital, sure enough, her fever had spiked to 104.1 The ER confirmed that this was likely nothing other than a typical febrile seizure and sent us home with direction to manage her fever and not let it spike.
Certainly a terrifying experience but I know plenty of kiddos who have had febrile seizures and we all bounced back fairly quickly from the experience. The illness that initially caused the fever resolved and a little cough remained but for the most part, Fern seemed to be her happy, healthy self.
The few days leading up to Thanksgiving, Fern’s cough seemed to return but since she otherwise seemed to feel fine, we weren’t too concerned. Black Friday. We had been out to a u-cut tree farm to cut down our Christmas tree with Auntie B and Uncle Chip when she started to run low grade fever. I had given her Motrin around 4 and she went to sleep around 6:30. She was asleep in my arms at 8 when I woke her up to give her more medicine. Her temperature on our infrared thermometer read 104.7 and I didn’t have time to take a rectal temp before deciding that we were going to need to take her in. As I was on the phone with the pediatrician on-call, she started having another seizure. Similar to her first, this seizure also lasted around a minute. Towards the end of the seizure Fern’s lips turned slightly blue and it was clear that she wasn’t getting enough oxygen. Just as we were hanging up with the doctor to call 911, the seizure stopped and her color improved. We threw her in the car and went as fast as possible to the ER. As soon as they had her fever managed, they ordered a chest x-ray and blood work to rule out all major suspects that could be causing the high fever. It took 6 nurses over an hour to get her IV started. Since it was a holiday weekend IV therapy and PANDA (pediatric IV therapy) weren’t on call so they called up to both NICU and PICU to get some baby vein experts. At some point in the night, Fern began convulsing again, this time the convulsions were more like whole-body twitches (like startling) every 3-5 seconds for 5 minutes. At the 5 minute mark, concerned about her oxygenation, the doctors gave her a drug called versed, that stopped the seizure and sedated her. At this point, they ordered a quick scan MRI and we started discussing a lumbar puncture to rule out meningitis. When the chest x-ray, blood, urinalysis and MRI all came back normal, we decided it was safe to assume that the fever was being caused by nothing more than a cold and that although she was “at risk for developing pneumonia” there was nothing we could do more than manage her symptoms and keep her fever reduced. After 10 hours in the ER, we were released again with orders to manage her fever and follow-up with our neurologist for an EEG and comprehensive MRI. Fern was also started on an anti-seizure medication called Keppra.
After being released from the ER, Fern’s cough worsened and although we were able to keep her fever under control. Initially we were very concerned about some developmental set-backs. It seemed like, overnight, we had lost almost 3 months of physical therapy work. Fern wasn’t even holding her head up on my shoulder, much less sitting, rolling, trying to scoot. After a week, we were still suppressing her fever and with lungs full of gunk our pediatrician agreed that we could safely call the illness pneumonia and prescribed an antibiotic and an albuterol inhaler. 5 days of antibiotic and Fern FINALLY seems back to normal. Her tone has mostly returned and once again she’s proven stronger than we give her credit for.
We were able to get in for an EEG last week and the results suggested that there is no seizure activity. Obviously fantastic news but not enough to understand why the second seizure in the ER happened. Our sedated MRI is scheduled for Friday and we’ll have a follow-up with our neurologist sometime before Christmas.
Please excuse and brevity, typos, grammatical errors, etc. 3 kids and this update has been produced over the span of 5 days, in 15-20 min increments of time… Your prayers, well wishes and love are FELT and we cannot say enough how much we appreciate the support we have been fortunate to receive from all of our friends and family. More on this #AFernieJourney to come.
Maybe the rate at which we experience time is a function of age and number of children. This year, we increased on both of those inputs.. 2016 brought the longest days and months as we waited, wondered, and prayed for our baby Fern. As a result, our year was full of amazing adventures and the building of the most wonderfully supportive village in the Pacific Northwest. That said, I’d be lying if I didn’t admit that we were mostly, and frankly are still, in survival mode. No doubt, there were lots of exciting moments in 2016 – but none as amazing as the addition of our sweet miracle, Fern.
Last year, an easy theme emerged as I recapped our year: The seasons seemed to mirror our experiences during our first year in Portland. The flow of words came unimpeded… Effort or not, this year has been about embracing chaos with happy hearts and positive attitudes. So here goes.
[Note: this was written of the course of 8 hours, mostly with an infant wrapped to my chest, while I served 3 meals, no less than 7 snacks, changed numerous diapers, mediated lots of toddler conflict, explained where babies come from and why we have to cover our mouths when we cough. I hung some garland, helped the kids with a less-than pinterest worthy craft and *almost* swept the floors and got the laundry put away.]
Long gone is the appeal of a wild night out on New Year’s Eve. Maybe our desire to be hip and feel young will return one day when the kids actually sleep through the night, but for now a celebration in “the Tiki Basement” complete with tamales, guacamole and an epic ping pong tournament seemed ideal. This sentiment yielded a new tradition with the bringing in of 2016.. Family Gorham traded SoCal sunshine for a New Year’s celebration in the cold and rainy Pacific Northwest. Luckily, we enjoyed a few crisp, dry days that allowed for a trip to the Gorge and wine tasting in the Willamette Valley.
As we approached the anniversary of our move to Portland, we began to feel settled in our new home. Finally feeling like true Oregonians ourselves, we learned that we were expecting our first (and only!) native. In February we celebrated Olivia’s 4th birthday with a party of Olivia’s own creation: The Rainbow Party — rainbow cake, playdoh and decorations.
In March, at around 11 weeks pregnant, our adventures with Fern really began. During what would become an emotional few months, we were fortunate to have the support of our families and an amazing village of friends. We waited anxiously, week after week, for a miracle. You can read more here, here and here about our journey with Fern.
In April, we celebrated Townes’s 2nd birthday, camp style, complete with a campfire cake and e springtime creek play. As I entered my second trimester, we shared the news of our sweet new addition with friends and family. We celebrated Easter with the first of many epic egg hunts in our front yard. We ventured to Woodburn for the Oregon Tulip festival and made multiple trips out to the Gorge to hike Olivia, now officially ambulatory on her own accord,, conquered 3+ mile treks. She has become quite the little hiker!
May brought gradual improvements in Fern’s sonograms, and by 16 weeks were very close to “normal.” Now on summer’s cusp, we welcomed the longer, warmer days. Again, we u-picked our way through the summer, trying our best to stock the chest freezer for the winter months: Strawberries and cherries in June, blueberries and raspberries in July and peaches in August. Dan made a trip in June to CA to help “Uncle Chip” move North. It was perfect timing.e needed a landing spot in PDX while he got settled, and I was in desperate need of an extra set of hands. I honestly don’t know how I would have survived this summer without his help.
We celebrated my 30th birthday,and the beginning of my third trimester, with a trip to Bend. We adventured in the Santiam State Forest at Three Pools in Opal Creek, had our first family hot springs experience at Paulina [pronunciation: PAUL-EYE-NAH] Lake, and enjoyed some amazing meals. With August came the return of weekly doctors visits for fetal monitoring. This, of course, on top of acupuncture and chiropractor visits and our schedule seemed packed. The kiddos were lucky enough to see all three grandparents for summer visits this year. We shared concerts at Kruger Farms, picked berries at Smith Berry Barn, and hiked the Gorge.
September’s arrival also meant Fern’s arrival, and we started making plans. We were almost certain that I would need to be induced a few weeks early due to the general “high risk” nature of my pregnancy. With induction scheduled for 9/21, I was thrilled to be the parent helper for Olivia’s first day in the “Sunflower” class at her Waldorf-inspired preschool. The following day at my fetal monitoring appointment, with concern about my blood pressure, my doctor and I made the decision that induction that night was the safest call. Our perfect Fern Opal was born the next day, September 8th, at 5:05pm, 7lbs 4.4oz. I’d love to provide you a link where you could read Fern’s whole birth story, but alas, that has yet to be documented (#thirdbabyproblems). The most uncomplicated part of my pregnancy with Fern was labor and delivery. It was remarkably fast and easy; I had a short, active labor and successfully avoided any unnecessary intervention. Townes and Olivia were over the moon to meet their new baby sister and we were anxious to get home and start settling in as a family of FIVE. Fern’s post-birth echocardiogram revealed a still-present muscular VSD (something we’d identified somewhere around the 19th week of pregnancy), resulting in a grade 2 murmur. Thankfully, this is not cause for immediate concern, and will only require a follow-up with a pediatric cardiologist at 6 months. We were blown away with the outflowing of support and love from our friends and family,especially our Woodhaven community. Through delicious meals (and wine!), rides to school for Olivia, and entertainment for Townes, we survived those first few months.
Outings were sparse., Fern’s first was a trip to the u-pick apple orchard where we collected almost 20 pounds of apples and pears. Dan’s 6 week paternity leave allowed for him to volunteer as the parent helper in Olivia’s class several times. It was an experience he would say was transformative, validating our choice for more gentle and peaceful parenting approach. After the first day, he came home saying that it was one of the highlights of his year! The big kids loved having Dan home and enjoyed numerous “Dayda Dates” to the OMSI, Powell’s, “The Coffee Store” and of course, Hopworks. Qhen Dan returned to work, we welcomed more family help, and I started practicing our new normal tackling daunting tasks like the grocery store with more kids than hands and getting three kids in and out of car seats and gear in the rain.
Halloween in the PNW is challenging for small trick-or-treaters. Not only is it likely to be raining, but by October, “the darkness” has started to set in. Shorter days with earlier sunsets, coupled with the lack of sidewalks or light pollution in our quadrant of Portland bring a different Halloween experience. Still, set on trick-or-treating this year, we braved our neighborhood streets with a forest fairy, a knight, and a colicky baby.
Some of our first big storms came in the first weeks of November, turning our creek into a rushing stream (sometimes flooding into a lake) and the promise of a very wet rainy season became apparent. Since this isn’t a political statement, we’ll just casually move right into the next (fittingly dark) season.
We enjoyed the lantern walk at Olivia’s school, and despite the pouring rain, we welcomed the darker days with a celebration of light and giving. After hosting for 27 last year, our Thanksgiving was wonderfully casual and intimate this year with just the five of us. I stayed in PJs, cooking all day, Olivia handled the decorations and “turkey games” and Townes (my biggest helper in the kitchen) cut all the green beans by himself with his “kid knife.”
For Dan’s favorite of our family’s Christmas mores, we selected our very first Nordman Fir, Hillary Nordman, retiring Juan Noble in favor of the healthiest and happiest of the u-cut trees, while also maybe paying homage to our first almost lady president. After cutting and carrying our 6.5 ft beauty through the forest, we enjoyed a late lunch (and good beer) at cozy spot in the country. Kicking off the advent season, we gathered with our Woodhaven community to participate in a spiral walk. The children walk to the center of a spiral of evergreen branches where they light a candle, then retrace their steps back to their families. Singing and watching the light in the room grow was such a wonderful reminder of the light we carry within, and the importance of sharing it with others during this season.
We’re looking forward to some fun Christmas outings including: The festival of lights at the Grotto, watching the Christmas Ships from the bank of the Willamette, and visiting hipster Santa downtown. In a year with basically zero travel, we’ve been super lucky to have our families all here to visit. Plans for next year include a 2+ week “triangle trip” to both Texas and California over spring break, and hopefully our first family camping trip over the summer! We sincerely hope that your Christmas season to be filled with love, light and peace!
Olivia: Four and a half and will tell you her life story if you so much as glance in her direction. She loves chatting up adults and telling them all about her age, siblings ages, and her school. She still has very strong opinions about “soft pants” and what gets packed in her lunch. She loves “dragon tears,” playing doctor, and dogs. Chickens & a coop are on the top of her birthday wishlist (we told her that Santa doesn’t bring live animals and we’re on board with chickens, in fact they’re already in the works for Family P: Spring/Summer 2017). She has become quite the artist, practicing drawing pictures of her friends, family and school. You can often find her sitting at the kitchen table, listening to “Magic Treehouse” books on tape, doodling cards for her friends. She’s mastered writing most of her letters and loves to help me write “to-do” lists.
Favorite Colors: Red and Pink.
Favorite Foods: “Flat Cheese Sandwiches” (not-grilled, American cheese sandwiches). “Bongo beans and Rice” (Garbanzo Beans, Brown Rice and Aminos) and “Noodle Soup” AKA Pho from TuTus (Our favorite neighborhood food truck).
Townes: Two and a half and becoming quite the chatty little guy. He managed to inch his way on to the growth chart this year. He’s still very reserved in new situations and environments; it takes him a tick to warm up. He officially weaned around 22 months but is nonetheless still quite attached to his Mama. He’s always practicing all things “big kid”, following Olivia’s lead, and likes to “do it myself.” He’s perfectly content being sandwiched in between a big “tita” and a little “Fernita” as long as he still gets adequate snuggle time from Mommy and Dayda. Some of his favorite things include: binoculars, flashlights and anything with a button, cord or plug. Loves to paint and get creative at art class at the Multnomah Art Center. Starting to get the hang of sitting on the big potty and fingers crossed will “potty train” without much assistance. Wakes up hungry and although picky, is a great little eater. Loves to help himself and knows exactly where to find the “Damn Crackers” (Perfectly endearing pronunciation of Graham). He’s a big helper in the kitchen and has become the expert potato scrubber, carrot peeler and chopper of all things. We never imagined it possible after Olivia, but Townes really is an even goofier kid. One of his favorite phrases is “oh! a joke!” followed by forced laughter. Refers to himself as “Tao Tao” or “Tao Bamboo” and is constantly keeping us in stitches. He’s a little risk taker, not afraid to climb up on stools, counters, and chairs, resulting in the most adorable little chipped front tooth earlier in the year.
Favorite Foods: Seaweed, Any kind of pasta, Crock Pot Chicken tacos, “Ah-Wos” (Olives), muffins and all kinds of fruit.
Favorite Color: “I really want a flashlight”
Fern: A “chunker-monker” with many nicknames. Depending on who you ask… she’s Fernie, Fernita, Tenacious Fernacious, Ferniture, the list goes on. A challenging temperament, she’s certainly the completion of our family. Colicky as she may be, her presence is such an amazing miracle and we’re reminded of it frequently. Hard as it is, we’re rejoicing in every difficult moment in this newborn stage. My best nurser, with the biggest tummy issues, we’ve at least (at LAST!) been blessed with a good sleeper! This girl sleeps a pretty predictable 6 hour stretch almost every night for which we are super grateful! Loves her paci, keeping a watchful eye on her big brother and sister, and being worn. THis snuggle bug, loves tub time with Mama and watching Dayda play his guitar. She’s already scared us with more ER/ Urgent care visits than her siblings combined. We’re all absolutely and completely in love with our little Fern and are enjoying every moment of the fleeting infant stage. The longest, shortest time.
Meg – How many pair of yoga pants do I own? At least one pair for every day of the week. How long has it been since I last hit the mat? Let’s just say, I’m grateful that athleisure is officially a trend. Between the dusty, dirty days on the u-pick farm and the wet and muddy preschool pick-ups, I very rarely find myself motivated to really “get dressed.” This year has left me incredible thankful for lots of things,even more than spandex pants and baseball caps: some of the greatest friends – far and near, who have really come together to support our family during a really tough year. Survival mode has me saying “yes” to the big kids a little more often and indulging in take out, grocery delivery services and coming 2017: a housekeeper!? I’m practicing choosing joy among the piles of laundry and crusty floors.
Hobbies include: breastfeeding, calendaring, pinteresting, and meal-planning.
Favorite Foods: Vanilla Hemp Latte, Coconut LaCroix, Pinot Noir, and anything I can eat easily without spilling on Fern’s head.
Dan – Between lots of doctor’s visits, sonograms, and fetal monitoring in the first half of the year and a generous paternity leave, Dan was actually home a lot! He successfully escaped for a weekend camping in Big Sur en route CA to OR in June and made some time to enjoy some of his favorite bands as they came through Portland. This was a year of cooking for him. He’s learning the basics, now, but has generally assumed responsibility for breakfast every weekend morning.. Monday through Friday you can still find this dude at Intel, computing about computer stuff. He’s professionally into category theory, compilers, and hacking on distributed consensus problems,all while listening to lots of bones music and occasionally brushing up on his ping pong skills.
Hobbies include: Telling dad jokes, reading books, hiking on trails, camping in tents, listening to tunes, and the constant mission to grow as an empathetic human being.
I say it every year, this annual recap is really for us, but I really hope you enjoyed catching up with us too and would love to hear from you 🙂
Catch up with us Here: firstname.lastname@example.org and Here: email@example.com
Well… my posts certainly aren’t getting any closer together which is a beautiful thing. I’d love to say that the past 10 weeks had been completely uneventful and that my second trimester had been all precious baby kicks and sweet and salty cravings… And although we’ve still been on a bit of a roller coaster with our sweet baby Fern, I’m absolutely thrilled to be looking at the end of my third trimester carrying the most perfect, wiggly baby girl. The past few months, I’ve continued to feel a little bit of improvement with my energy level but am definitely slowing down at we approach the home stretch.
At a few of my appointments between 24-28 weeks my blood pressure readings had been slightly elevated. My doctor ordered a few tests to determine if I was showing early signs of preeclampsia… Luckily, since there have been no traces of protein in my urine, no swollen extremities or vision changes – we’ve continued to feel confident that I’m just experiencing hypertension with pregnancy. My doctor has since had me monitor my blood pressure at home with direction to call if I was over 140/80. Of course, the first time that happened, we happened to be in Bend on vacation.. and I was successful at laying down and resting long enough to relax and bring my rates down without an ER visit. Slowly my doctor has altered her recommendation (considering my blood pressure) from induction at 39 weeks… to 38 weeks… to “between 37-38 weeks” depending on how things progress. After a long ER visit on Tuesday night (my blood pressure was through the roof 153/106!) followed by a 24 hour migraine (surely a result of the stress) we suspect that induction “between 37-38 weeks” is probably reality. Currently praying that I don’t develop true preeclampsia symptoms and can more safely attribute my symptoms to anxiety and stress.
We did finally decide on a doula and I’m feeling a little less anxious about what my actual labor and delivery process will look like considering induction. The fact that Fern’s birth could be as little as 5 weeks away is SUPER exciting and wonderful! Daniel and I were just talking yesterday about how we’ve both had that same calendar realization – Fern is coming NEXT MONTH. He’ll likely start paternity leave around Labor Day to be able to be home with us the last week or two then be off 4 weeks after. Your continued prayers and support are so appreciated.
Much Love and Gratitude,
For the past month, our weekly appointments meant holding our breath until the sonographer announced that Fern had a heartbeat but only letting that relief sink in skin-deep, knowing that the doctor would also have to address any changes positive/negative. A few weeks in, after hearing that the fluid around Fern’s belly had disappeared was about the same time we decided to share the news of our sweet new addition.
Yesterday we had another our weekly appointment (15 Weeks). A combination of lack of childcare and wanting to include our kids in the process of getting to bond with new baby sister landed us in the same waiting room as a family. Still anxious, we waited quietly for the sonographer to find a heartbeat. Olivia was mesmerized by the sound – We all were, but seeing her face was priceless. Another clear view of her heart and anatomy and significantly smaller cystic hygroma measurement. One of our doctors came in after reviewing the images a wanted to take a second look for herself. She felt confident enough to say, “If you had come in today for your first dating scan, we would NOT have mentioned anything to you about the hygroma – or anything abnormal!.” My heart stopped. Baffled and confused, overwhelmed… again, we kind of sat in shock. The same way I remember feeling at our first sonogram, like the world stood still and my brain and heart didn’t know exactly how to process. Have you ever felt an overwhelming sense of God’s presence? Sometimes for me it’s chills or overwhelming happiness – the kind that forces you to smile… but this was different, like a really big warm hug. The kind that holds you really tight and you don’t want to end. The kind we should embrace our spouses, kids, friends and families with. Love is amazing. In this season, I’ve experienced the most amazing outpouring of love for our family. All of your sweet words, gifts, (um… delicious food!), prayers and support have been so incredible. We feel it. I have never felt so surrounded by love and I want to thank you ALL from the bottom of my heart – it means the world to us.
Of course we’re still praying for complete resolution and for a clear genetic panel results (micro array) to come back in the next few weeks. We will likely stay in the Fetal therapy clinic for several weeks to come, possibly throughout pregnancy, and will probably still do more testing around 20 weeks on Fern’s heart for peace of mind. But for NOW, our exam showed only one thing, a perfectly healthy sweet baby girl, sitting “criss-cross applesauce” with long bony fingers (Olivia is convinced she waved at her!) and an adorable Pittman nose.