Update: #AFernieJourney

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.