Koan’s Story: Two Cats, Two 911 Calls

Koan and Kinnick

Koan was released from the hospital in early October.  We had lived in the NICU for a little over three weeks.  He was eating on his own consistently and while he was still having seizures, they were not training in one on top of the other.  The future was still very uncertain.  We had set up follow up appointments with Dr. Peterson here in Cedar Rapids and scheduled a consultation with the University of Iowa Children’s’ Hospital to see if we could get some answers on what was the cause of Koan’s troubles.  

It was great to get home and resume some semblance of a normal life:  sleeping in my own bed, eating in my own kitchen, seeing my spouse and children at regular times.  But, there were always reminders that things were not quite right.  We had to give Koan phenobarbital, the anticonvulsive medication, twice a day.  This was tricky.  The prescription we had was a red, thick, goopy, liquid.  We need to put it in his formula in the morning and in the evening.  I never tasted it myself, but I can imagine it didn’t go too well with the formula we were feeding Koan.  He would often spit it out or spit it up.  I remember constantly being worried that we were under-dosing him.  This thought crossed my mind each time we saw a seizure.  

The seizures were coming about one every thirty to forty hours.  And, of course, these were just the ones we saw.  I’m sure he had many at night.   But, we would go a day without seeing one, and vainly hope that they were gone.  The first month at home, we saw Dr. Peterson weekly.  After a couple of weeks, with no luck eradicating the seizures, we had tried increasing Koan’s dose of phenobarbital, Dr. Peterson switch anticonvulsants.  The new medication, Dilantin, gave us brief hope.  There were a couple of days without seizures, but soon, they came back with the same duration and frequency.  

Early on, I had a lot of trouble recognizing a seizure.  But, as he got older, it became all too familiar.  Koan would always start (and often still does) by letting out a very distinctive yelp/cry.  There’s no good way to describe it, but it’s not in his normal vocal pattern.  It’s instantly recognizable to both Jeri and me know.  This was a red herring a while as early on, all the physicians and neurologists told us that seizures are silent events with no vocalization.  But, as we would learn over the years, Koan was rarely “typical.”  After he would cry out, he would turn his head to the right, raise an arm over his head and rhythmically nod his head.  These episodes were short.  Usually, it would be done in less than two minutes.  And, he would be back to normal, not any worse for the wear.  But, for Jeri and I each one was a devastating disappointment.  We were continually adjusting medication.  So, there was hope with each adjustment that we had seen the last one.

Almost immediately upon our arrival at home, it became clear that our long time and adored cat, Mikey, was really ill.  Jeri had adopted Mikey from our friends the Derrs about a year before we were married.  He was big, sleek, and black.  After we were married, but before Sydney and Tiber were born, we referred to him as our .3 child.  Jeri loved, loved, loved Mikey.  He was her cat (or she was his person — hard to know the better way to describe it). If she was upset for any reason, Mike would know.  He would seek her out and try to comfort her.  They shared a tight bond.   In the months before Koan was born, Mikey lost a lot of weight.  So, we knew something was not right.  But, he was over sixteen years old at that point.  As we settled back into our normal routine, we could see he was really ill and in pain.  He had probably been that way for a few days, unfortunately, while we were occupied with Koan in the NICU.  It was clearly his time.  Jeri is so strong.  She took Mikey on his final visit to the vet by herself.  While we were all very sad, the loss of our beloved Mikey was overshadowed by our concern for Koan.  And, in retrospect, that may have been a blessing.

About a week later, we decided to get another cat.  I kind of pushed for this.  Jeri had about a month of maternity leave left and I thought having a new kitten would ease her bereavement and give everyone in the family a break from the cloud of anxiety we were all feeling about Koan.  I hoped Jeri could use the time off to bond with our new cat.  Jeri has always had a black cat.  So, we set out to find a black kitten.  And, as it turned out a local vet near our house had several rescued feral kittens and one was black.  We decided to have a look at them.

There were three left: one black and two gray striped tabby kittens.  The black kitten seemed to be really shy and timid (we would soon learn this was a ruse), but one of the tabbies was quite bold and friendly.  So, against my better judgment, we adopted the bold tabby and the shy black kitten.  We named them Rascal (the gray tabby — for the anime raccoon) and Kinnick (in honor of the great Hawkeye football player).  We still have them both today. My mom ended up adopting the last gray tabby, so all of these cats ended up in my family.   While there are a ton of great Kinnick and Rascal stories, I’ll only relate two.

Jeri has always been the “cat person” in our family.  I like cats just fine, but I’m very allergic to them so I don’t interact with them a lot.  I had it in my mind that these two cats would provide Jeri with some solace and even joy as she stayed at home with Koan.  I suppose what happened next was inevitable.  Jeri was so occupied with Koan feeding him, changing him, getting him to appointments, etc… she had little time for the kittens.  Sydney and Tiber had all sorts of time to give the cats attention.  So, within a few weeks, it became clear that our two older kids had bonded with the new cats.  Not only did the two cats not go to Jeri for attention, it seemed like they had some genuine (but unfounded) animosity toward her.  So, this was another great ironic life-truth.  The one “cat person” in the house was disliked by both of the cats.  Over the years, the dislike has blunted a bit.  The cats now tolerate her.  But, certainly, they don’t love her like Mikey did.  Several years later, Jeri tried to fill this feline love void with yet another cat.  That didn’t really work either, but that’s another story.

Our new black cat, Kinnick,  turned out not to be shy at all.  I don’t know what kind of act he was putting on at the vet, but he’s never been timid since then.  As he grew up with Koan, he became obsessed with him.  I think Kinnick believed that if he acted like Koan, he would get more attention.  So, he would sit/sleep in Koan’s high chair.  Sleep in his crib.  But, the most interesting thing he did was climb into his jumper.  I would have believed it if I had not seen him do it.  The pictures below are evidence.  We did not put in in the jumper.  He crawled inside and sat — with his back legs and tail sticking out the bottom.  I wish I had the presence of mind to capture this on video.

The new kittens did bring some relief and joy (to some of us), but there were still some difficult times.  A couple of weeks after Koan came home, we had a major scare.  It was in the middle of the work week, I don’t recall the day.  During the evening, Jeri was feeding Koan a bottle of formula.  It was about 6:30 PM just after the local news had finished.  As she was feeding him, some of the formula must have “gone down the wrong pipe” and Koan began to cough.  Then he stopped coughing and went silent.  We realized he was not breathing.  This was another one of those moments where every second seemed like hours.  We sat him up.  We did our best to look in his mouth to see if we could see any blockage.  He started to turn blue.  The change in color was dramatic and very real.  There was a feeling of unreality and Deja-Vu.  I could not believe he had stopped breathing again.  This was so much worse than when we were in the hospital.  There was no one here to help.    

After a few seconds, Jeri called 911.  We began a panicky exchange with the operator.  Jeri had just finished describing his age and condition when Koan suddenly gasped and began to breathe again.  The bubble of formula or whatever it was had cleared.  However, the fire rescue and police were already on the way.  A couple minutes later, the fire truck stopped in front of our house with lights blazing.  A couple of paramedics came in and give Koan a quick once over.  We explained what happened.  And, they could tell how shaken we were.  One of the guys, in an attempt at compassion said, “Everything looks fine now.  But, I’m guessing you won’t sleep well unless we take him to the hospital to be looked at by a doctor.”  Without any hesitation, Jeri and I both said, “NO!”  It felt like we had just gotten home and no one wanted to go back.  So, I’m sure the intensity of our response surprised the EMT.   

As October turned into November, we were still seeing seizures.  And, unfortunately, the frequency and duration were both increasing.  For whatever reason, it appeared Koan’s condition was getting worse.  We had tried various increasing doses of phenobarbital, and while it would seem to work for a day or two, inevitably he would have a seizure later.  We then switched to Dilantin with the same type of results.  Start at a low dose and increase to the maximum for his age/weight with diminishing results.  We then tried a third drug.  Same process, same result.  There were not a lot of medication options left for someone Koan’s age.  We had been visiting Dr. Peterson, our neurologist, weekly, and with each trip and lack of results the appoints became more and more grim.  It felt like no one knew what to do.  As an off the wall idea, Dr. Peterson had suggested one very unlikely possibility was a rare condition that causes vitamin B deficiency.  The treatment was simple —  give Koan a compounded, pharmaceutical mixture of vitamin B every day.  These compounds were not inexpensive and since they were not technically a drug/medication they were not covered by our insurance plan.  So, given the cost and the very low probability that Koan had this disorder, we elected not to try this.

Around the second week in November, again on a weekday in the early evening, Koan had a severe seizure.  This one was unlike anything we had seen before.  The symptoms were kind of the same, but the duration was a lot longer.  Typically, he came out of his seizure state in under five minutes.  Our seizure protocol (even to this day) is to start a stopwatch.  This particular seizure just would not stop.  At fifteen minutes, we called 911.  This time everyone agreed that he needed to get to a hospital.  After talking with the dispatcher, we determined that since the seizure was not violent that we could get him to the hospital faster if we transported him ourselves.  So, we drove him to St. Lukes and he was admitted.

The treatment team gave him a sedative to ease him out of the seizure and stabilize him.  Jeri stayed with him that night, and I went home to care for Sydney and Tiber.  This may have been the lowest point of my life.  We had no idea what was going on or what to expect.  Koan’s condition seemed to be getting worse and worse.   There was no end in sight– no bottom.  I had experienced emotional and physical exhaustion before.  But, this was different.  I would describe myself as a pragmatic optimist.  I’m not blindly optimistic in all situations.  But, given enough time I’ll find the silver lining in any situation.  This time I had nothing.  That was a long, black night.

The next day, Koan had another long seizure.  Again, they needed to give him drugs to ease the duration.  After that Jeri and I had a consultation with Dr. Peterson.  There were no new ideas.  So, as a “Hail Mary” we decided to start giving him the vitamin B compound in addition to the high dose of anticonvulsant.  We figured it would not hurt him any and all we would be out is some money.  The seizure on November 8th, 2007 was the last one we would see for over six years.

The way I’ve written this makes it seem like the vitamin B was the Holy Grail solution.  And, while it seemed like it at the time, it was not.  To this day no one of know why the seizures suddenly stopped.  Dr. Peterson was skeptical from the start.  Koan didn’t fit the profile of someone with this type of condition.  After a few months, we weaned him off the anticonvulsant and off of the vitamin B compound.  It’s almost like God or the Universe suddenly decided, “Let ‘em up.  They’ve had enough…”  The seizures stayed away for years.  Anyone who follows me on Facebook knows that Koan still occasionally does have a seizure — about once every three or four months and mostly at night.  We don’t believe, and neither do the pediatric neurology team at UIHC, that it’s worth the effort or side effects to put him on an anticonvulsant again.  We are just keeping our fingers crossed they don’t increase in frequency again.

These were the last of our close call, emergency health scares with Koan.  Let’s hope that continues.  As we went into 2008, I was still hopeful and optimistic that all of these events were just bumps in the road.  I thought and believed that Koan would take off and hit all of his development milestones — just like his brother and sister — once we got the seizures behind us.  Unfortunately, that was not the case.  And, that is the next chapter in Koan’s story.

Koan Story: Part 4

I know I’ve shared this before, but until the start of 2017, I never really felt the need to advocate for Koan in any significant way.  In fact, I think that some of my coping process was to avoid these types of situations.  We didn’t do a lot to connect with other families and people who shared similar circumstances.  I wanted to feel “normal” and our support structures were working so well, I just never felt the need.  That’s a really powerful endorsement of the current Medicaid system by the way.  But, when the November 2016 elections were finished, I knew we would be in for a fight.  Over the course of early 2017, I started looking for opportunities to grow my network of caregivers and disabled people by attending conferences and other gatherings.  Almost all of these inspiring, courageous people share a common thread or story.  It seems like just about every one of them had a neonatal intensive care (NICU) experience.  Here’s ours…

While I’m very thankful for the St. Luke’s NICU, I never want to see it again.  And, I hope anyone reading this has never and will never need to go into one.  I’ve visited standard intensive care units several times over the years when my Dad was ill.  I’ve only ever been to the St. Luke’s NICU, but the cultural differences were dramatic.  The NICU ward was segregated from the rest of the building by a set of thick, windowless double doors.  Before entering, everyone was required to check in at the desk anytime you passed the doors.  All visitors were also required to wash their hands up to their elbows.  So, it was a bit of an ordeal to go in and out.  The staff took these procedures very seriously and I’m grateful for that.  But, this made mundane things like trips to the restroom or a jaunt to the vending machine a chore.   

The rooms or bays were tiny — about seven to eight feet wide and about fifteen feet deep.  There was no door at the end of the room, just a curtain that could be pulled to provide some privacy.  There was so much equipment in the rooms, that each space could barely accommodate three adults.  There was on reclining chair fit into the back corner and two folding chairs that could be opened when needed.  Most of the time, we had them put away because there was no room to move if they were out. The room we started out in had no windows.  The floor was waxed tile.

The most jarring and unsettling detail was the crib.  It was about three and a half feet off the ground.  There were rails at the head and foot but none on the sides.  Logically, this makes perfect sense.  Newborns are not going to roll or move by themselves and fall out.  And, it would be pointless for staff to remove a rail or need to bend down to examine a child.  But, it still really bothered me to see Koan sleeping on a mattress with no safety guard between him and the hard tile floor.  

Koan was in the St. Luke’s NICU about three weeks.  This time is right up there with my Dad’s passing as the most psychologically and physically challenging experiences of my life.  I’m just happy to have survived it.  I have no good memories of the experience.  It colored everything.  I had been waiting to read all of the Harry Potter books until they were all released — which happened earlier that summer.  I had purchased all of them before Koan was born with the idea I would read them during my time off and at late night feedings, etc…  I ended up rolling through all seven books in the first few days of our NICU stay.  They were a great way to occupy my mind at all hours of the night.   But, to this day, I have a lingering bad feeling when I see the movies or think about those stories.  It’s kind of like a smell that brings back vivid memories.

The first few days in the NICU were the most difficult.  Both Jeri and I stayed with Koan for the first two or three days.  Our families and friends took over care for Sydney and Tiber.  I don’t know who we would have gotten through this without that support.  We got results back pretty quickly, around six or eight hours after the first seizure, that Koan did not have a serious infection.  This was great news.  The concern was that the types of infections that cause seizures like Koan was having would, to use the words of the pediatrician, “melt his brain”.  So, that was a relief.  But, we were still all very worried that there was a birth defect and that he was missing a large portion of his brain.  The team at the NICU let us know that it would take weeks to get into the pediatric neurology department at the University of Iowa Children’s Hospital.  Worse, there was no other certified pediatric neurologist in the area.  

The thought that we would need to wait weeks to know if there was this type of defect was almost unbearable for me.  Koan had been admitted to the NICU on a Monday evening.  By, Wednesday, both Jeri and I were becoming really uncomfortable with the lack of diagnosis.  I had spent the better part of two days stewing (with very little sleep) on all of the possible bad scenarios. These were the only two reasons the care team had presented us with that might cause Koan’s symptoms.  It seems really likely to me that if the infection had not caused the seizures, it must be some type of congenital problem. The staff in the NICU must have sensed that we were close to a breakdown.  They reached out to Dr. Andrew Peterson, a local neurologist, for help.  While Dr. Peterson was not licensed as a pediatric neurologist, he had a lot of experience working with kids.  But, he was on vacation all of that week.  Luckily for us, it must have been a “staycation”  for Dr. Peterson, because someone in the NICU persuaded him to come and see us on that Wednesday.  This was one of the most profound acts of kindness anyone has ever done for me.

I know my description of the NICU is pretty harsh.  But, the people who worked there are second to none.  And, I would include Dr. Peterson in this as well.  To this day, I’m still so thankful for his time over the next few hours. Dr. Peterson was calm, frank, friendly and compassionate.  He examined Koan and got him into a CAT scan as well as wired him up for EEGs.  I cannot describe the intensity of the relief when we found out that all of the images and data were essentially normal.

We learned a ton about seizures and epilepsy over the course of the next few days. One of the first things they did when Koan was brought into the NICU with seizures was give him a big dose of Phenobarbital, an anticonvulsive drug.   This is a very common medication to give to an epileptic.  I was told that it slows down electrical activity in the brain.  I was also told that people on this medication lose about 10 IQ points while they are taking it.  But, when the drug is stopped, these IQ points return.   Dr. Peterson assured us that the seizures Koan was having were not causing brain injury.   Koan was initially admitted to the hospital because he was having trouble feeding.  The anticonvulsants were not helping.

Koan was sleeping a lot and had no interest in eating.  This was really tough.  It felt like our new born child was regressing.  The first few days at home, he had been alert and awake.  He had eaten occasionally.  But, now, he was just laying in his open faced crib, not moving, rarely opening his eyes, and he showed no interest in the bottle.  I knew it was totally irrational, but I felt like if we could get him out of the NICU and at home, he would make a comeback — everything would be ok.  But, they would not let us go until the seizures were controlled (gone) and he was eating independently.  So, feeding him became an obsession for me.

If Koan did not accept the bottle within a few minutes of feeding, they would feed him by pushing the formula through a tube in his nose.  The first goal was to get him to eat four ounces on his own.  Sometimes he would eat two ounces, sometimes one, sometimes none.  We would try every two or three hours for all twenty-four hours in the day.  The nurses would ofter to feed him, but Jeri and I would almost always do it.  So, staying in that tiny room, trying to feed him every couple of hours was pretty tough duty — not a lot of rest.  It started to work on my mental state.  I began to simultaneously anticipate and dread each feeding opportunity.   The name of the game with Koan has always been inconsistency.  From a behavioral standpoint, I was falling prey to classic operant conditioning.  It was intermittent positive reinforcement.  Behaviorists will say that’s most powerful type of reinforcement.  Occasionally Koan would eat three ounces, but the next four feedings he would only eat one or two.  It was exhausting and I was losing it.

Going into the first weekend, Jeri and I realized we could not lean so heavily on our family and friends to look after Sydney and Tiber.  So, we started trading shifts with Koan.  We would split into 12-hour shifts.  We staggered them so the same person would not pull night duty all the time.  But, this also meant that occasionally we would each get a full 24-hour shift, too.  This was really the only way to make this work.  We lived this way for the next two weeks.  It was grueling.  The odd thing was that my time away was almost worse than being there.  I began to dread going back and that dread would start almost the minute I left.  When I was at the NICU there was activity.  I need to get up every two hours to try and feed him.  I spent time watching him for seizures.  It was exhausting in a way that only this type of waiting can be, but at least I was doing something and not thinking or worrying about what might happen.  When I was at home, all I did was worry.

One of the other great gifts Koan has helped me understand is that small kindnesses are really important.  Sometime during the last week we were there, the NICU staff saw how worn down both Jeri and I were.  So, they moved Koan to another room — one with a window and a little natural light.  I know that doesn’t sound like much.  But, it was huge!  We had been basically living in the cave that was his room for two weeks.  Getting to see the sun was immensely helpful.  

By the start of the third week, Koan was starting to adjust and eat more and more.  There was still a lot of disagreement about the number and frequency of his seizures.  As a newborn, it was pretty difficult to spot them.  They were not dramatic.  Up until we left the NICU, I never thought I saw one.  In retrospect, seeing what they looked like later, I now realize I probably did see several.  Nevertheless, the staff were seeing fewer and fewer.  So, in early October, they agreed to release him to go home.

There was no closure for us.  We had no idea why this had happened, if it would continue or what to expect.  We were told the seizures were not causing brain injury and the only way we would know if there were problems is if Koan began to miss developmental milestones. So, we began to watch and wait.  The seizures proved to be really difficult to control, but that’s another story.  

Koan’s Story — Part 3

The Barnum Boys: Tiber and Koan.

Koan was born on September 13th, 2007:  a Wednesday evening.  Just like Tiber, it was a quick labor.  When Jeri got home from work that day (around 5:00 PM) she let me know she was having some contractions.  She wasn’t overly concerned with these symptoms.  After all, Koan’s due date was not until early October and we had gone through false labors before.  But, just to be safe we packed up Sydney and Tiber (aged 8 and 6 respectively) and drove to the St. Luke’s maternity center to have her examined.

We got to the hospital around 6:00 PM.  Koan was born before 7:00 PM.  The labor went so quickly that he was delivered by a nurse.  The on-call physician was at the other hospital, Mercy, and could not make the drive over in time.  A side from how quickly it happened, there was nothing really remarkable about Koan’s birth.  Everything seemed fine — ten fingers, ten toes, etc…  He looked perfect.  And, while he didn’t cry a lot right away, he did eventually cry.  He ate.  He slept.  We thought everything was great.  We called family and celebrated.

Koan came home that Friday.  On Saturday, we hosted a number of friends to watch the Iowa vs Iowa State football game.  I recall holding and trying to feed Koan as the Hawkeyes lost on a last second field goal in Ames.  During the game, a friend commented on how dramatic and frequently Koan would stretch and yawn.  He would reach a hand above his head and turn his head to the side and yawn. I had seen that several times since he was born and by Saturday I had grown accustomed to it — it was just normal behavior for Koan.

On Sunday, a nurse came for a home visit.  This was the standard follow up visit to see how everything was going.  As far as we could tell, all was well.  Koan didn’t love to eat like our other kids, but he was waking and sleeping, pooping and peeing as we would expect.  So, again, we thought everything was fine.  As part of the routine visit, the nurse weighed Koan.  He wasn’t adding weight.  And, while it’s not unusual for a child to backslide a little in weight after coming home, the nurse thought it would be good for us to bring him back to the hospital for a routine examination.  Jeri and I thought this sounded prudent, so we let the nurse setup an appointment back at St. Luke’s for the following day, Monday.

The appointment was scheduled for mid-morning.  When we got there, the team of nurses and a pediatrician looked Koan over and watched us feed him.  We all agreed, just to be safe, to admit him for a day or two to stabilize his weight.  It was pretty clear at this point that he was really inconsistent with feeding.  Sometimes he would take the bottle and other times he would just not latch on.  The feeding consultant assured us that sometimes with kids who arrive a few days early — remember Koan was born three weeks before his due date — that the suckle reflex takes some time to “kick in.”  

The staff at St. Lukes were (and I’m sure still are) awesome.   It took several hours to meet with everyone — the feeding specialist, the pediatrician, etc…  So, it was well into the afternoon before everything was wrapped up.  We all agreed it was best to wait and see.  Send him home again, but follow up in a couple of days with another in-home visit.  But, just as we were finishing up the details a really scary thing happened.

I was holding Koan.  As just a precautionary measure, they had fitted Koan with a heart rate and respiration monitor.  This device gave a reassuring visual for each breath and would signal an audible alert if respiration had stopped or slowed.  Everything had been fine.  But, just as our meeting was finishing up and while I was still holding Koan, the monitor began to go off.  He was not breathing.  At first, no one did much.  I think we were all shocked, hoping, expecting his breathing to resume.  But after ten or twelve seconds — which seemed like an eternity to me — the pediatrician called in a “code pink”.  A “code pink” is the pediatric version of a “code blue” — the “all hands on deck” emergency call that goes out when someone is dying.  This was absolutely horrifying.  I was still holding Koan.  He was not moving and he was now starting to turn blue.  After about twenty more agonizingly slow seconds, Koan began to breathe again.  No one had done anything, I was still holding him. This is right around the same time the crash cart wheeled into the room.

I was shaken up.  One of my gifts is that I am usually the calmest person in the room in a crisis.  But, this was not the case in that situation.  I lost it.  I was shuddering with adrenal tremors and sobbing. I guess this is an understandable and perhaps even reasonable reaction given I believed Koan had died while I was holding him.  The care team decided to readmit him for the night for observation.  I wish I could recall the pediatrician’s name.  I was a really great, compassionate guy.  He spent a lot of time with us after this happened — primarily to reassure me that everything was going to be ok.  It was obvious that I was very upset.   While I did, and I still do, appreciate his efforts — it made what happened next even more difficult…

As soon as the decision was made to put Koan back in the hospital, Jeri and I had to devise a plan for our older two kids.  Our good friends, the Derrs, had yet again pulled our bacon out of the fire.  They had picked up Sydney and Tiber from school and taken them to their home in Marion.  Our plan for that day was that we would both go and get the kids from the Derrs house.  I would stay at home with Syd and Tiber for the night and Jeri would then pack at home and return to the hospital to stay with Koan.  Before we left St. Luke’s, we called the Derrs to let them know our plans.  We jumped in our van and started heading north on I380 toward Marion to get the older two kids.  We had been out of Koan’s room for less than ten minutes when Jeri’s mobile phone rang.  All I could hear over the road noise from the interstate was monosyllabic responses, but her face had turned ashen.  She was really scared.  The hospital had called and was requesting that we return immediately.  Koan had experienced a seizure.

We immediately returned to the St. Luke’s and found the room we had left Koan in was empty.  We had to ask about his location at the nurses’ station.  A very serious nurse lead us through a series of hallways to the neonatal intensive care unit: the NICU.  I had never seen or visited a NICU before.  Before we were admitted through the sealed double doors into the unit see Koan, they made us scrub hands up to the elbows and briefed us on conduct — no loud talking, limited electronics… etc…  It’s hard to describe how disorienting all of this was.  I totally understand the necessity of these tasks, but we had no idea what was happening.  Once we were allowed into the unit, we were ushered into a small conference room to wait to see the doctor.  

My dad had a heart attack when I was in seventh grade.  So, I’m been in hospitals quite a bit over the years.  I’ve been there on several occasions when doctors have needed to give my family dire news.  I know the language doctors use in these situations.  But, what happened next was the most uncomfortable and tense conversations I have ever had with a doctor.  It was more intense than the end of life discussions we had regarding my dad.  I’m not faulting the doctor.  I totally understand how difficult this type of work can be.  But, I was surprised by how the tone of the staff had changed.  Just thirty minutes before, we had been hugged, consoled, and reassured.  Now no one was really telling us anything.  We knew Koan had a seizure, but we didn’t know what that meant.  No one was talking to us unless we asked a question.  They weren’t even looking at us.  Jarring is the best adjective I can come up with to describe the experience, but that doesn’t capture the intensity of the change.

The new pediatrician — there must have been a shift change in the short time we were away — would only stick to the facts.  Gone was the tall, affable, compassionate doctor and in his place was a short, grim, taciturn man. It was like we had stepped into an alternate reality.   He told us that a nurse had observed Koan having a grand mal seizure while we were driving to the Derr’s.  This was extremely serious for a newborn child.   This seizure was likely the result of a very significant infection — they were currently running blood work on him to see if this was the case.  Or, it could be the symptom of a very significant congenital/developmental problem — he thought it possible that Koan might be missing a significant portion of his brain.  We might have to wait for weeks in order to see a specialist at the University of Iowa’s pediatric neurology clinic to know if this were the case.

Neither of these theories was true thankfully.  What we didn’t know until much later, is that children who have these types of seizures as newborns have over a 90% mortality rate.  To be honest, I haven’t researched that assertion, but a pediatrician did share that with me later. But, that helps me understand why we were treated the way we were by the hospital staff.  It’s a human endeavor and delivering that kind of news to new parents is soul wrenching.

Koan’s seizures turned out to be idiopathic in nature — meaning there’s no diagnosable cause.  Or, as one of my all time favorite physicians, Dr. Andrew Peterson, so vividly explained — “idiopathic means that the idiots (the doctors) don’t know why.”  But, Koan was having these seizures frequently.  In retrospect, the “yawn” my friend had noted while we watched the football game was undoubtedly a seizure.  Over the next few weeks and months, we would struggle to control the seizures.  We also had to come to grips with what they were a harbinger to: developmental delays.

Koan’s Story — Part 2

Once we made the decision to have a third child, we ran into some heartache almost immediately.  With our older two kids, the process had been very, very simple.  We decided to try to have a child, and we had a child.  But, of course, both of us were now older.  So, in 2005 when Jeri miscarried, it was a shock.  Because the previous two pregnancies were pretty uneventful, we didn’t even consider being circumspect with our news.  We had shared it with Sydney and Tiber, family and friends.  We then had to explain, as best we could what happened to our children.  We’d never had to deal with this kind of grief before as a family.  It was a difficult time.

In 2006 we tried to conceive again.  And, we had more trouble.  I can’t remember how far into the term or what number of weeks it was, I just recall thinking that we felt like we were out of the woods.  Interestingly, while I can’t remember that dates of the term, I do remember the day of the week.  It was a Wednesday.  Jeri came home from her bi-weekly check up sobbing.  Until this point in the pregnancy, all had been well.  She had been examined two weeks before and was feeling fine — no cramps or bleeding.  She looked great, too.  But, at this appointment, they couldn’t find a heartbeat.  Somewhere over the course of the two weeks between checkups, the child had died.  In this case, she elected to have a procedure to have the remains removed as recommended by her obstetrician.  I don’t want to get overly political here, but it does burn me up that today in many states she would be required by law to attend counseling, look at a picture of the child, and wait additional days.  This experience made be an ardent supporter of policies that protect women’s reproductive rights.  Again, we had the tough conversation with Sydney and Tiber, family, and friends.  We were emotionally worn out and hurting.

There were conversations about the wisdom of further attempts.  But, we agreed to give it a least one more try.  I thought a lot about my own story.  There’s a seven-year gap between my brother Chris and me.  My parents had a string of miscarriages before I was brought into the world.  I wasn’t looking to follow in their footsteps, but I did feel like we were experiencing something that was meant to happen.  I felt that we really needed to see this through.  I would guess that most parents are excited by the idea of potential — imagining the wonderful way a child will be and all the incredible things he or she will do.  For me this was feeling was really strong, perhaps because of the echoes of my own story. While all of my children are wonderful and exceptional, I remember thinking that this third child would be extraordinary.  I had no idea at the time how right I was for all the wrong reasons…

Early in 2007, we knew Koan was on the way.  We held our breath and walked on eggshells for the first three months.  As we rolled into June that year, well into the 2nd trimester, we began to relax.  We had seen an ultrasound by this time and everything looked great.  I was amazed by the new 3D ultrasound.  These sessions for Syd and Tiber had been about as informative as looking a Rorschach paintings.  When the tech showed me the real-time images of Koan and asked if we wanted to know the gender of the child (which we did), I already knew.  His body language was so much like Tiber — both arms folded behind his head and his legs crossed — that I knew he was a boy. So, we started working on names.  

Our name negotiations ended on something we both loved.  Jeri really like the sound of the name — pronounced Co-en.  I liked the idea of a Zen riddle.  He also got my dad’s name for a middle name — Curtis.  Sure, we were not following English convention for phonetics.  But, we were going to let a little thing like that stop a really cool name.  So, Koan (pronounced Coen) — it was and it was perfect!

That was a really busy summer.  We had planned, before knowing the pregnancy schedule, to do the big to Florida family vacation in July.  We were also going to visit Jeri’s parents in Duluth as well that summer.   So, we spent a ton of time on the road, in airports, and generally in transit.  Right before we left for Minnesota in late June, Jeri came down with a urinary tract infection.  She went to the obstetrician and got some antibiotics to treat it.  

August rolled around and we all geared up for the start of school.  Jeri’s work calendar and mine were pretty well aligned that year.  She needed to report for her first contact day on Monday, August 20th.  Of course, she had been into work most of the previous week to set up her classroom.  Students would be starting on Wednesday of that week.  At around 3:00 PM on that Monday, I got a call on my mobile phone — something that was a bit more unusual ten years ago…  It was the school nurse from Franklin Middle School (Jeri’s school).  Jeri had all but passed out in her classroom and they had transported her to the hospital.  I called our friends, the Derrs, to have them pickup Sydney and Tiber from daycare and hightailed it over to St. Lukes.

Jeri is so much (by orders of magnitude) tougher than I am.  I’m admittedly a complete wuss and a hypochondriac.  If I’m not feeling well or right, I tend to let everyone know about it.  Apparently, the UTI that Jeri had treated in late June had only been knocked down and not killed by the antibiotics.  The infection had progressed over the summer and turned septic.  She had just attributed any ill feelings from this to the normal pregnancy lethargy.  They gave her the chemical warfare caliber antibiotics — seriously — the same stuff they use to treat an Anthrax.  She was hospitalized for the rest of that week.

While she was there, the Derrs really saved our bacon as they have done many times before by taking care of our older two kids.  Jeri’s room was in a maternity room because she was within six weeks of her due date.  I spent most of that week sitting in her room playing World of Warcraft on my laptop and sneaking down to the concierge station for free breakfast cereal and apple juice — which was really only meant for patients.  On one of these clandestine trips for food, I had the ultimate “crap I’m old” moment.  

As I was returning to Jeri’s room with a full bowl of Cap’n Crunch, I walked by a couple in the hall.  The young lady, was in hunched over in labor and the young man was holding her hand and helping her walk off the back pain.  As I passed they, both looked up at me — giving me a really hard stare.  As I got closer, wondered if I had my fly down or if I had spilled milk down my pants or if they were going to call me out for getting food from the station.  As I pass them, the young man says, “Mr. Barnum?”  Former students in the maternity ward catching me sneaking free cereal– not good!  It turns out this couple attended the first school I taught at — Valley of Elgin and were in 5th and 6th grade when I taught there.  I never had ever felt old until that moment.

Jeri was released on Friday of that week and life went back to normal.  Things were so good that we decided to keep our plans to go to Chicago for Labor Day weekend to see the Hawkeyes play at Soldier Field.  Unlike the rest of our friends attending the game, we came on Saturday morning rather than Friday night.  And, in doing that missed one of the most epic nights out ever, but that’s another story for another blog.  The only reason I share that we were in Chicago at all is that we had an interesting time at the game that day.  Our first two kids had rather short labor/births.  In fact, we almost didn’t get to the hospital on time for Tiber.  So, in the middle of the third quarter on the upper deck of Soldier Field when Jeri leans over to me and says, “I’m having a contraction!” That got my attention quickly.  I had visions of Koan arriving at the stadium.  We decided to wait and see and fortunately, these contractions turned out to be false labor pains.  When he arrived ten days later, I realized just how lucky we were that Koan did not show up a few days earlier.  

It’s fun for me to reminisce on these times.  This is probably a bit self-indulgent in a blog about Koan to do this.  However, the main point I’m hoping to convey is that we really, really wanted to have Koan in our lives.  But, there were a lot of little interesting stories that happened while he was in the womb.  These events brought a clear focus to what we would experience over the next few days and weeks after he was born.  He’s an exceptional person — even before he was born.

Koan’s Story — Part 1

IMG_1397

“Every new beginning comes from some other beginning’s end…”  

My dad passed away in the summer of 2001.  I was thirty-four years old.  That May, Dad had switched from a brand name to a generic version of his statin medication from the name brand in order to save money.  He had worked his entire career in purchasing could not resist the temptation to save a buck.  I’m not really sure, and it really doesn’t matter now if the pharmacist, prescribing doctor, or Dad got the information wrong for the dosing.  There was a significant difference between these two drugs. For most of May, Dad overdosed on statins.  In addition to clearing out the cholesterol in his bloodstream — the intended result —  this drug began to break down his muscles as well. So, at seventy-eight and after three by by-pass surgeries, the strain was too much for his already taxed circulatory system.  HIs kidneys all but stopped working in late June and he was gone on July 20th of that year.  What does this have to do with Koan?  My dad’s death really altered the way I think about family.  And, Koan was one of the outcomes from that.

The last six weeks of my dad’s life were grueling.  My Mom, my two brothers who live in Cedar Rapids, and I took turns spending nights with Dad in the hospital.  I won’t share the particulars, but these were long, difficult, dark nights.  Anyone who has needed to take care of a gravely ill person knows these types hardships.  By the middle of July, I was completely out of gas — emotionally and physically.  And, just at that time when things were darkest, my oldest brother, Mark, arrived.  He was working in Colorado at that time, but he was able to take time away from work and spend a number weeks with us.  It was like the cavalry showing up.  Some of the feelings of relief came from Mark being who he is — confident and reassuring.  But, honestly, it was just so incredibly helpful to add one more person to the nightly rotation.  It gave all of us — my two other brothers, Chris and Joel, as well as my Mom, just enough breathing room to face our next turn with Dad at night.  We had just enough resiliency to take care of ourselves and our families in addition to caring for Dad. There was a lot of sadness, but no fighting, anger, or other damaging emotional battles that can happen at times of extreme stress.   As strange as it sounds, I look back at that time, and as sad as the loss of my Dad still makes me feel, I feel proud and even happy or joyful thinking about that time.  I had shared an experience with my brothers where we were all at our best when the circumstances were really bad.

It took me a few years to unpack my emotions surrounding my Dad’s death.   Tiber was born in February that year, so I wasn’t thinking about growing my family more at that time.   In fact, I believed we were done having kids once Tiber was here.  I was really satisfied with having just two children — one girl and one boy.  There was symmetry in our family and we were very happy.  But, by 2004, I realized that as difficult as my Dad’s end of life had been, it had given me some wisdom.  I wanted my family to have the same supports I had.  I wanted one more child — not to take care of me — but to help the kids take care of each other. However, I was getting older — in my late thirties — so I felt that there was really only time to have one more child. 

I don’t believe in many absolutes.  I’m only certain of very few things.  I’m convinced that I married the right person.  I believe you reap what you sow — the notion of Karma, etc..  I’m also positive that the Universe or God has a sense of humor or at the very least a sense of the ironic (which I find funny).  I spent years convincing myself it was a good idea to have a third child to lighten the load.  But, things didn’t really work out that way. There’s no escaping the fact that life with Koan is more expensive, more difficult, and more complex. He certainly will not be able to shoulder difficult burdens with this brother and sister — at least not in the same way, I envisioned when Jeri and I decided to have a third child.  Again, ironically, introducing him to our lives has been nearly the opposite result of what I had hoped.  But, there’s one more thing I’m certain about: Koan is a gift — one of immense value to each member of my family.

What Koan gives us is personalized and customized to each member of the family.   Jeri and I both now look to embrace the joys of the moment rather than worrying about possible futures.  I see both of my older two kids being much more empathetic with they are now equipped the ability to see diverse perspectives.  This is the stuff of true and meaningful happiness.  These are lessons none of could have learned — at least to this depth — in a school or structured experience.  I think all of us feel privileged to be on this adventure with Koan.  I don’t want to make it out that it’s all flowers and rainbows.  We still disagree and fight.  There are plenty of teachable moments, too, many regarding how to manage Koan.  But, Koan provides a tangible and very real moral and ethical compass for everyone in the family.  I think everyone deeply understands that meaning and wellbeing comes from and through service.  It’s pretty cool when life grants you an opportunity to surpass your expectations….