Coming Soon!

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!

Olivia (8)

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. 

Townes (6)

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. 

Fern (4)

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! 

Meg

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. 

Dan

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.

Love, 

Megan, Ed. Dan 

For The Pittman Family

Photos by Lauren Allen Photography

Lots of pictures of daily life Here

 It still feels so strange to say, “We have a diagnosis.” After over 4 years of wondering what was different about Fern we finally have an answer.

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:

Children’s Hospital of Philidelphia – TBCK Syndrome 

Children’s Hospital of Philidelphia – TBCK Research

TBCK Foundation 

 

TBCK Information Sheet 

 

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.

 

XX

Megan

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,

M