Wilder

I feel like a competent writer when I am trying to express my philosophical or theological ideas or talking about abstract or societal concepts.  When it comes to telling my story, I find it much harder to express the depth of an experience.  It seems like everything I write down, although internally filled with enormous emotional weight, comes out cold and clinical.  Nevertheless, over the last several months I have slowly been processing through the traumatic memories of Wilder's first weeks to begin to write down our experience.  Years from now, when more of the details have faded I'm hopeful I will be glad to have this record.  So forgive the disjointed, clinical explanation writing as this was as much about processing for me as about sharing the story.  

Almost a year ago, I was 36 weeks pregnant with my 4th child when my 7 year old suddenly spiked at 103 degree fever.  Next came a sore throat and then a rash all over his torso.  So off to the pediatrician we went for a strep test.  Negative, so we left with instructions to treat the symptoms because it must be "just a virus."

Fast forward 5 days and Wesley is feeling better but now I am achy and have a lovely rash all over my big pregnant belly.  Clearly the same virus that took down Wesley has taken me down now too.  I called my OB office and the midwife on call told me to treat my symptoms, call with a fever, and plan to continue on with my scheduled c-section 2 days later as postponing would increase my risk of uterine rupture.

So along comes Monday, I'm feeling better, we do the c-section, baby boy Wilder comes out pink and screaming, all is well.

Three days later, we brought our baby boy home.  Five hours after getting discharged, we left home for the satellite Children's Hospital ER after we couldn't get him to wake up for his second feeding in a row.   He had been slightly jaundiced like both of his sisters so my prediction was his jaundice had worsened, making him lethargic and he might end up needing a short NICU stay for a day or two under bili lights, not ideal but not terrible.  

In the ER triage his temp was 95 and both his heart rate and oxygen were in the low 90s.  The triage nurse sent us back to a room.  The doctor came in and apologized that he wasn't going to be explaining what was happening as well as he usually would because he "needed to start doing rather than talking."  From there it became a blur of blood draws, iv attempts, every warming device they had available, urine test, lumbar puncture attempts, respiratory support, alarms, people rushing in and out of his room, and talks about transporting him to the NICU at the main hospital.  As Wilder got progressively worse, they switched us from the normal ER room to the big room with the glass doors and the fancy equipment.  If you've ever been in this situation, you know that you don't want to be the ones who get the fancy room in the ER.  That is the room reserved for the most critical patients who are most likely to need the life saving equipment readily available in that room.  This also happened to be the exact same room I had sat in 5 and a half years earlier the night Wesley had his first big seizure.  It feels surreal and objectively traumatizing to have sat in the same hospital room with both of your sons while a team of medical professionals worked to save their lives.  

Soon after switching to the big room came the decision that as soon as he was stable enough, he needed to be transported to the NICU via helicopter and Colby and I would have to drive there without him.  After a sobering 40 minute drive across town at 1 am, we arrived at the NICU where they had been able to get solid iv access, had the needed equipment to keep him warm (hypothermia in newborns is apparently a common result of infection rather than fever), and proactively started antibiotics and antivirals.  The NICU doctors proceeded to do many many tests as at that point they were unsure if he had an infection or some genetic/metabolic disorder.  

By the next morning we got news that he tested positive for viral meningitis.  More specifically, they detected enterovirus in his spinal fluid (meningitis), blood (sepsis), and respiratory system.  At this point it was clear he was very sick and this was one of the better options out of all they were testing for.  Because he was very minimally responsive still and frequently pausing breathing, the doctors decided to hook him up to an EEG.  From 7:30am to 3:30pm he had 21 seizures despite being treated with seizure medications.  The only clinical sign of the seizures though was him stopping breathing.  That afternoon they decided, based on how bad his EEG looked, we needed to do a brain MRI.  His MRI showed areas throughout his brain that were affected but at this point it was impossible to know if it was inflammation, infection, or damage but either way, this progressed his diagnosis from meningitis to encephalitis (or more specifically enterovirus meningoencephalitis).  

The rest of our NICU stay was a blur of controlling seizures, waiting for him to wake-up, pumping, keeping him warm, lots of snuggles, treating his jaundice, helping him relearn to breastfeed, and weaning him off of oxygen.

Amidst the blur of the stress and trauma of everything, I have these scattered picture memories.  

-The urgency in his voice as the ER doctor said he needed to "do not talk."

-The respiratory therapist in the ER standing holding the mask tight on Wilder and refusing offers from her colleagues to trade off as she was committed to staying with us.

-Walking to the "big room" in the ER and freezing at the doorway with the flood of memories from being there before with Wes.

-The doctor asking us to lay over Wilder to try to use our body heat to help warm him as all of their equipment wasn't enough.

-Repeatedly accidentally calling him Wesley as our brains just couldn't grasp doing all of this with another child.

-My dear friend who, amidst grief in her own life, came and sat with me at the NICU night after night; brought me clothes, a toothbrush, food, Dr Pepper; and sat with Wilder so I could take a shower knowing he wasn't alone.

-A constant flow of food, gift cards, hugs, and messages of love and support when I had nothing left in me to even reply.

-Hours spent holding Wilder skin to skin in the NICU recliner.

-While filling out the consent form for the MRI about metal in his body, pausing to debate if he still had hardware from his hip surgery, which clearly my 4 day old baby hadn't had but my brain just kept blurring Wilder and Wesley together.

-Sobbing when the doctor gave us his MRI results.

-Holding him during seizures and willing him to just start breathing again while we watched his oxygen levels plummet into the 50s.

-Prayer warriors who lifted us up in beautiful prayers when I couldn't form the words myself.

-Feeling hope that we were starting to come out of the storm when he sucked on a pacifier again.

-Listening to the resident neurologist spouting statistics about the likelihood of long term effects of enterovirus meningitis.  

-The joy of being woken up in the middle of the night to his cry after not having heard it for days and days.

-The surprise we all felt when we did his required trial off of oxygen to justify to insurance why he needed oxygen at home and he showed us all he didn't actually need it.

After being home for a few days we had to take Wilder to a doctor's appointment.  When we came back home, Waverly ran and hugged me saying she's so glad we're home and we didn't have to stay at the hospital again.  At that point I realized how much this experience affected our whole family.

So now, almost a year later, Wilder is super social with a wide mouthed "muppet" smile.  He is getting therapies with early intervention and is delayed in his milestones.  I've experienced one extreme of parenting a child with a severe brain injury and the other extreme with two "typical" children and Wilder falls somewhere between those likely towards the milder end.  Each milestone he hits or misses gives us some predicting power for the extent of his ongoing needs but the reality is we just have to live in the unknown.  He will need eye alignment surgery this fall but beyond that, I just keep moving forward using much of the information I've learned and the skills I've developed over the past 8 years to advocate for Wilder the best I can.  

It's so easy writing something like this to feel like I'm either drowning in the trauma or minimizing the experience with a facade of positivity.  My actual experience is a constant (and exhausting) fluctuation between the two.  There are moments of hope, of optimism, of despair, of gratitude, of bitterness, of worry, of rejoicing, and on and on.  

But when I take a moment and pause from the thoughts spinning through my head and really look at him, he so often looks up at me with this intense and uninhibited love that melts my heart and grounds my soul.