The Day my Dad's Heart Stopped

People say it. Don’t take loved ones for granted, you never know when it’ll be the last time you see them.

My Mom and Dad looing good on Friday, March 2,

two days after he came home from hospital.

It was two weeks ago Monday night when I called my Dad, after taking the girls to their gymnastic's class. He told me about their busy weekend visiting my sister and family in Vermont – a funeral, a basketball game, a birthday party and more. He sounded happy but tired. They had just gotten home around 6:00 that night.

I asked him what they were doing the upcoming Friday night. Would they feel up for hosting a sleepover with all 6 of their grandkids??? My sister was planning to come down for a few days of the kid’s winter break. He chuckled and asked Mom. Dad said, “Judah too? Yeah, yeah we could try that and see how it goes.” He treasures his grandchildren, who are ages 2-11 with tons of energy and personality.

That conversation would replay in my head for the next few days, as I wondered if it would be the last time I ever talked to my Dad.

Early the next morning on February 20, my Dad’s heart stopped beating.

I had just returned from a 5 mile run and was getting ready for work, when I got the news. My husband walked in with an awful look on his face. “Cam called, your Dad went into cardiac arrest!”

“NOOOOOOOOOO! GOD NO,” I yelled.

Many of you have experienced a moment like this. When you get that awful news that makes it hard to even function. To breathe. Yet you must.

As I ran out the door, my daughters were worried about what was happening. I just said, “Grandpa is sick and needs mommy’s help.” I was so afraid they might not see him again… I drove to my parent’s house, praying and trying not to freak, trying to drive safe, calling my sister.

In the distance I saw their home. Emergency vehicles crowded the driveway. I drove up on the lawn and ran inside. Police officers, EMTs and other responders were everywhere inside.

“Where’s my Dad? How’s my Dad?” They looked at me. I could see in their eyes, it was not good.

Mom stood helpless in the foyer. “He had a heart attack,” she said with numbness and fear. They asked us to step back, “You shouldn’t see him like this,” an officer said as the emergency personnel struggled to carry my Dad down the steep flight of stairs.

Mom, my brother Cameron, and I huddled in a circle and cried as they loaded Dad into the ambulance. The neighbor and first responder, Philip Schrock, told us he had a heart rhythm and was breathing but it was weak. And they were off.

As I waited for Mom and Cam to get dressed, I called Dad’s only sister, my dear Aunt Bon. She shrieked and immediately left work. I called my youngest brother Aaron. Then I quickly shared a public plea on Facebook, “Pray for my Daddy!!! Just had a heart attack.” And you did. Hundreds of you responded.

At the Nanticoke hospital ER, they sent Mom, Cameron and I to a private waiting room. Our numbers gradually increased as family, pastors and a few friends arrived. We waited and sobbed. We prayed.

Dr. Ferber came to the door. It’s hard to recall exactly what he said, but basically that Byron had gone into cardiac arrest and his heart went into a type of arrhythmia that is often the final beats of the heart before death. They had to shock his body twice with a defibrillator to get his heart beating again before leaving the house. His heart stopped again in the ambulance, so they shocked him a third time on the way to the hospital.

The doctor said that it was largely the quick response calling 911 and beginning chest compressions that made the difference of Dad still having a heart beat.

My Dad, sedated in the ICU the day

of his cardiac arrest

You see, mom had awaken around 7:30 a.m. to a blanket being tossed over her. She then saw Dad’s eyes were rolled back and he wasn’t breathing right. Immediately, she yelled for my brother Cameron to call 911. As he was on the phone, they instructed him to take Dad off the bed and begin chest compressions. Within minutes, the neighbor Philip was there responding to the call and took over giving CPR. They saved Dad’s Life.
Around 9 a.m. at the hospital, Dad was sedated and his heart was beating but less than half the strength it should. They would take him to ICU and begin hypothermic treatment that would cool his body to 91 degrees, decreasing the oxygen needed for the body to recover and reducing the risk of brain damage. At this point, they could not tell if he’d had a stroke or if there would be brain injury. Noone knew what to expect, but this was the best they could do for him…

We stayed at the hospital all day. People came to comfort and support. We totally took over the ICU waiting area. Would our Dad make it? How long would it take for him to come back to us? Would he be able to talk, to walk? So many unknowns.

And then it happened. To our amazement and absolute delight, just two days later on the morning of February 22, 2018 Dad opened his eyes. Talk about a moment of sheer joy and hope!!!  

Mom and my sister Lilli cry tears of joy as they see Dad's eyes opened on Feb. 22.

I was at the hospital with my Mom, husband and all 3 siblings. What tears of relief were shed!

The other day, my Mom and Dad told me that it was on February 22, 1974…exactly 44 years before the day of his awakening…when my Father became a Christian, asking Jesus to be his Lord and Savior. Amazing. Mom calls it MIRACLE DAY!

My husband was a faithful supporter to mom and dad during his hospital stay.

Adrian would stay there for hours some days while I had to go to work.

The following Tuesday, my Dad improved enough to have an operation for a Biventricular ICD a.k.a. a pacemaker on his heart. And the next day, Dad came Home!

My Dad weeps as he hugs my three little ones,

his grandchildren, on the day of his homecoming.

During the 9 days that he was in the hospital, I provided daily updates of his progress on Facebook, he had dozens of visitors, friends brought food and cleaned my parent’s home, and hundreds…maybe thousands…of prayers were lifted on his behalf. An entire community network was lifting us all up.
Especially the Sunday after his cardiac arrest, when my older sister experienced a serious fainting incident at church, likely stress induced, that resulted in paramedics arriving on the scene and her being transported to the same hospital where Dad was recovering. They treated her for a few hours in the ER, then she came to stay at my house for the night.

So it’s official, my Dad and sister Lillian have joined the “Fall Down. Up Again” team!!

What exactly caused my Dad’s cardiac arrest is unknown, but they suspect that his heart had been weakening for years. My Dad has been a plumber for 36 years, crawling in damp spaces under homes and breathing in potent glues. He has struggled with coughing fits and bouts of bronchitis over the years that likely put extra strain on his heart. The doctors say the prognosis looks good with his pacemaker now.

He is one of the fortunate ones, they said. Almost 95% of people who experience the severity of cardiac arrest that my Dad endured, do not get a second chance. And when they do, it’s rare to come through it with relatively little permanent damage.

He has diet and lifestyle changes to embrace, along with rehab and physical therapy. His biggest challenge since being home is the pain in his chest from a cracked rib, which is the result of the CPR and fairly common. He is emotional and overwhelmed with gratitude for the support and still appreciates your prayers.

My Dad, Byron Outten, is the best father a girl could hope for, he has an incredibly generous spirit and is known for being there to support people in their final hours. He is great man of God, and we are so Thankful that he is still here to spread more love.

Now that he’s healing, I can tease him, “Was the idea of having all six of your grandchildren spend the night that overwhelming??? You didn’t have to go and have a heart attack!”

With my Dad on Tuesday, February 27, the day he got his

pacemaker and a week after his cardiac arrest

My mom, Lorna Outten, read this verse the day after Dad’s cardia arrest when he was still sedated….

Psalm 41:1-3

“Oh, the joys of those who are kind to the poor! The Lord rescues them when they are in trouble. The Lord protects them and keeps them alive. He gives them prosperity in the land and rescues them from their enemies. The Lord nurses them when they are sick and restores them to health.”

Steps Forward...and Back

Adria giggled loudly in halls of A.I. duPont Hospital for Children last Tuesday. She was watching a video of herself from over three years ago, where she was walking along in her braces wearing just a diaper.

"Hahaha, I just love my cute, chubby self!" she giggled, much to the amusement of her orthopedic doctor, physical therapists and her parents.

The video was filmed in the Gait Lab of the hospital, where they film children "ambulating" who have an abnormal gait. Adria's first video was made when she was three years old and had just learned to walk without her walker! It was really cute and touching to watch that video again.

Adria walking without her braces in the Gait Lab last Tuesday

NEW LEG BRACES = GOOD AND BAD

The doctors were looking at the video to compare how she's walking now. She recently got a new pair of leg braces (Ankle Foot Orthotics) that we were so pleased with at first. They are stronger than her last pair, which we had several issues with - they cracked because of her active lifestyle and she often complained of pain in her legs, However, Adria is struggling more with balance and running in her new leg braces.

Her physical therapist from school especially noted the difference. Adria had been making good progress in ascending and descending a few steps without holding onto the rail (yeah!), but now she has regressed and is struggling with some skills and balance.

The doctors at AI believe that the setbacks are due to Adria adjusting to the difference with the new braces and that in time she will regain her former abilities and continue to grow.  They think she looks great!

Adria's orthopedic doctor and physician's assistant check out her hips and legs.

They did suggest that it could be beneficial for us to get her some "Walk-Easy" crutches to use when walking longer distances, such as hikes through the woods. It's another good option for her to try and stay as active as possible, then just using her wheelchair for big outings like the Zoo or amusement parks. So, we'll look into those crutches more this summer.

Adria did get to go back down to the Gait Lab with the yellow "road" and land of Oz mural and take a new video. She rocked it, walking and running with and without her braces! It's just amazing to watch her progress.

UPCOMING SURGERY

We had another doctor to see on Tuesday as well. The pediatric plastic surgeon.

This doctor is new to us, as Adria has developed a surprising, new issue in recent months. She basically has bed sore/wound on her bottom and the stubborn thing will not heal!

Since February, I've been applying prescribed ointments and dressings daily. It's stayed clean and uninfected, but it simply will not close up and heal on its own.

The reason she got this in the first place is somewhat mystifying, but it has to do with the fact that she has limited sensation on her bottom. When at school, she would sit in a hard chair for prolonged periods of time without adjusting her position and a sore developed.

This would not happen to the average person because we would feel pain or discomfort from too much pressure in the same spot and simply shift in our seat. But Adria does not have some of those nerve endings because that lower part of her spinal cord never formed properly in my womb.

It's one of the impacts of Spina Bifida that we did not account for, but ever since this happened, she's had a nice soft cushion on her seat at school and her wonderful teachers make sure she gets frequent breaks.

But last week the doctor said it's time to take a more proactive approach in the healing of this wound. It needs to be closed surgically...

I did appreciate that the plastic surgeon used very vague language when talking to us about this with Adria in the room. Adria gets easily upset about needles, pain, and likely would have freaked out if she really knew what's going to happen next Friday. It will be an out-patient surgery but will require anesthesia.

After the surgery, Adria is NOT supposed to SIT for a WEEK!

She can walk some but will be restricted to lying on her stomach and side most of the time to allow for complete healing. She is totally going to miss school that week, but they did not want us to wait until school lets out - the surgery schedule is already full in June.

Yesterday, I got a called from the hospital reviewing Adria's health history and asking tons of questions in preparation for next Friday's surgery. The lady even recommended a video that the hospital has made to help parents and children know what to expect. It's really helpful actually. Here it is:





This will be the only the third surgery that Adria has had. I say ONLY because many children with Spina Bifida have had more than a dozen surgeries by her age! But Adria was only six months old for her last surgery...which was a much more intense procedure. It was literally surgery on her Brain. She was only the 8th child in the U.S. to have this operation that provided an alternative to the Shunt, commonly used to treat Hydrocephalus. Read about it HERE.

We are believing this upcoming surgery will be a simple procedure and she'll come home with us that same day.

Honestly, I've only explained this whole thing a little bit to Adria. She would be too upset if she knew the full extent of what's going to happen.

SO PLEASE DON'T SAY TOO MUCH TO ADRIA ABOUT THIS SURGERY. Thank you.
Just say an extra prayer for her on May 27.

EXCITING TIMES

You can't keep this girl down, though. She's got a couple of events before the surgery.

This Saturday, Adria's hoping to participate in her second Spelling Bee - she won Third Place in her first one a couple months ago!

And next week she has a Girl Scouts awards program. She joined a Girl Scout troop at her school this year and sold more than 100 boxes of cookies this spring. She's got some great natural sales skills (like her mama :)

Perhaps most exciting is the fact that Adria just started being able to Catheterize herself!! 

This is a huge step in independence for her. She's been afraid to try for so long, but I told her that if she wanted to try any Day Camps this summer she would have to learn to take care of herself. Apparently that was motivating for our social butterfly, and a few weeks ago she did it on her own for the first time! She's been getting more used to it since and is pleased with her new ability.

We are so thankful for Adria and her great progress forward, in spite of her challenges. She sometimes says, "Mom, I wish I wasn't a spina bifida person."  It's tough to hear this and know how to respond, but she's got a great spirit and we pray she'll always keep her sense of determination.

And always keep taking steps forward, even if she has set-backs from time to time.

Mommy feeling blessed with her babies on Mother's Day!

My 29th Birthday

February 7, 2011

Bright lights surrounded me. Voices. Activity. Hustle.

The fog lifted as I began to regain consciousness and awareness that I was lying on a gurney in an Emergency Room. This time I was not there for my husband...it was for me.

Nurses were undressing me and started to ask questions.

"When is your birthday?"

"Today." I responded groggily. "It's my 29th birthday."

The nurses were surprised and sympathetic that I was spending my birthday evening in the ER.

I looked down at my brightly colored undergarments that were currently exposed and said, "At least I wore a cute bra today." Ha! Trying to see the positive in the moment...

It had been an interesting day and weeks leading up to my unexpected hospital visit.

That morning I had given a training presentation during our weekly sales meeting. We lived in Indianapolis at the time, and I sold new homes for a national builder. In fact, we had just moved into our own new home a few weeks before.

Near the end of our sales meeting, a surprise arrived. Someone brought in a large, beautiful bouquet of purple flowers...and they were for me! An incredible birthday gift from my husband. A few tears rolled down my cheeks at his thoughtfulness.

The beautiful birthday bouquet my husband had delivered to me at work!

The guy sitting next to me said, "Now that's the reaction we hope to get!"

I was genuinely very appreciative, plus I was already super hormonal. Just three weeks before I had endured a painful miscarriage. Even though I was just 10 weeks pregnant when it happened, there was a great deal of pain and blood involved.

The problem was, the bleeding had not stopped. It had lessened, but I was trying to be tough and just let my body heal on its own. But it was not.

After the sales meeting, I went back to my office in a model home that day and waited until my late afternoon OB appt.

Warning: This part gets kind of gross!

Time for my OB visit...Let's see. How do I put this delicately? Oh whatever, let's just be real and put it out there! Maybe this story can help another young mom avoid a similar ordeal.

I had developed a major blood clot as a result of remnants from my pregnancy. For weeks after I lost the baby, I had been bleeding pretty heavy. Once my OB removed the clot, it was like a disgusting dam burst. I laid there for 45 minutes and could not get up because of it. Yep, totally gross.

The somber nurse, ironically named "Sunshine", looked a bit horrified and said she'd never seen that much blood in their office. I began to feel extremely faint.

They called Adrian to come in and said they needed to take me to the hospital next door for surgery. I asked for some extra clothes - the business suite I had on was not working for me anymore!

I fainted right after Adrian arrived. Too much blood loss. I completely passed out on the floor as they were trying to get me ready to go to the hospital. Once I regained consciousness, they attempted to help me stand and walk out. No good. I was out again. (In case you don't know, I have fainted many times over the years when in pain.)

My husband and my OB had to CARRY me out to the car and drive to the hospital right next door, since it was faster than calling the ambulance.

So there I was lying in the Emergency Room on my birthday, getting prepped for D&C surgery. Guess our dinner plans would have to wait...

The procedure was completely painless. Well, they gave me anesthesia, and I was completely unconscious for the whole thing, so that makes sense. But literally, I never had any pain from it that night or the next. It was the simplest surgery, not sure why I was so worried about it before.

We were back home around midnight and still made it out to celebrate my birthday the next night.

But it was a day that would go down in my personal history book as my most memorable birthday! 

That was 5 years ago already, but it's all so clear, I can still smell the scent of a Five Guys cheeseburger on my anesthesiologist in the Operating Room before he made me black out. Ha!

Just two months later, I became pregnant with Johanna - her name means God is gracious.

I may have spent my 29th birthday in the ER with an emergency surgery following, but it was not a ruined birthday. After all, there was that surprise bouquet delivery from my husband! Take the good with the bad.

(And it's definitely easier to share this story 5 years later.)

Big October events and Spina Bifida Awareness

Drama, drama, drama. Sometimes that's just life with two little girls. The slightest disturbance to their ideal world and there's a fit thrown or tears shed.

It must have been the adjustment of going back to school, but there was a LOT OF DRAMA in our house in September. And most of it seemed to come from very ordinary things.

Now that October is here, the girls have mostly adjusted to their school routine and made new friends. Daddy is enjoying his days with Judah. And Mommy is staying busy at work, while trying to find balance in home responsibilities and the fun stuff we do.

Last night, I took Adria out for our first Mommy-Daughter date in a long time. She has been asking me to go out just the two of us since before her birthday a month ago.

Mommy-daughter date last night

Adria and I had a great dinner together at Grotto Pizza, then headed to her pediatrician for her 7 year check-up. Unfortunately, we were the last appointment of the day and had to wait a looooong time. Our date ended with Adria spazzing out when they tried to give her a "Flu mist" vaccine in her nose. I thought it would be better than a shot! Drama indeed. She was sad that was all we had time for, but she's got more to look forward to in October

We have some BIG STUFF planned for the next two weeks!

Apple-Scrapple Pageant

Tomorrow night, Adria will be doing something very new for all of us. She will be participating in a little pageant for girls age 5-8 at our town's fall festival called Apple-Scrapple. The weekend event draws thousands but the pageant is only open to girls in her school district and is geared toward having fun while the girls learn confidence on stage.

Judges will interview the girls and then the girls will do a talent. Adria will be dancing to "It's a Beautiful Life" :)  She's been practicing, so we'll see how it goes!

When the sign up sheet for the pageant came home from school, I asked her if she was interested. At first, she was very nervous about the idea of being alone on stage in front of people (aren't we all?!). I tried not to push the issue too hard and let her know it was her decision. She said yes and now is both nervous and excited!

The Pageant is at 6:30 p.m. Friday night behind the Bridgeville Fire Hall. We'd love to see you there!

Adria practices her pose.

Children's Run and Half-Marathon

Next Friday will be a big day too! Both the girls will be participating in a Children's run in Pennsylvania. It's part of the Runner's World weekend of events that concludes with a half-marathon for adults on Sunday. I'm supposed to run that event but am very nervous because I have not been able to train for it well.

The girls will be running a half mile. Adria tries to practice for it when we can, and I'm hoping she'll be able to complete it. Last year, she showed us that she could complete a half mile race, even if she finished in last place. This year, she talks about wanting to WIN the race...

I don't want to tell her she can't win, but the reality is that she is not able to run as fast as most children because of her weak lower legs that require braces for support. I just try to encourage her to do her best when she is out there. I tell her there is no way mommy is going to WIN her race, but that we run at our own pace and finish the race when we can. That's our goal...to finish the Race!

October is Spina Bifida Awareness month

This makes for a very busy month for us, but I think it's very fitting that Adria participates in both of these events at this time. October is actually SPINA BIFIDA AWARENESS month!

Adria can show the community that in spite of the limitations and challenges that she faces with spina bifida, she can enjoy life and push the limits!

A couple weeks ago she told me, "Mom, I don't feel like a spina bifida kid. I'm like the other kids at school."  I was glad to hear her say that because I don't want her to feel different.

Then just two nights ago, after I catheterized her, she said, "Mom, I wish I was like the other kids at school who can just go potty without a catheter. And I'm the only one who has to wear braces on my legs. Sometimes I feel like I don't fit in."  Ugh, it's hard to hear her talk like that. I assured her that she has many wonderful friends and teachers at school, and I'm so proud of how well she does.

It's just like that. Some days are much better than others. You know, Drama comes and goes.

How I love this girl and pray that I'm doing the right thing by giving her the opportunity for these big events. Go Adria!

First Week of First Grade

Adria made it through her first week of First Grade. I say "made it" because it's been a bit of an emotional week for her. At times she's been dancing with excitement and other times teary-eyed and fussy. There are many changes with First Grade, and our routine oriented little girl can struggle to adjust.

A couple weeks ago she kept saying how she missed Kindergarten and wasn't ready for First Grade. She was mostly concerned that she would miss all her friends and not know anyone. I reassured her that she would see many familiar faces, and in fact she's sitting beside one of her best buddies since pre-school in her class.

Adria at her desk during Wednesday's 1st and 2nd grade open house

It was easier for me this year because I knew more what to expect and that we had a plan for Adria's unique spina bifida related needs that would work. Last year, we really had to plan ahead with her teachers and the nurse to Prepare for Kindergarten.

First Day Drama

Despite her earlier fears, when it came time for her first day of school on Monday, August 31 this girl was ready! In fact, she did not even want Mommy to walk into school with her. She said, "I'm in first grade, so I know everything!"

First day of first grade

Well excuse me for trying to be a helpful mother on your first day :)  We got this little attitude in check, and I followed her to the cafeteria where we met up with her class and all the other first graders before walking back to her classroom.

Cafeteria full of first graders

She smiled happily and waved goodbye, ready for her new adventure. I knew she would be fine.

Adria waves goodbye with her classmates on Monday

That is, until we got a surprise call in the afternoon from the school nurse saying that Adria had 3 stinky accidents on her first day of school! She had to change her panties twice and then her entire outfit. I was so surprised and upset to hear this! Adria has not had bad accidents like that since we started her on the Peristeen program in December. I felt so bad she had to deal with that on her First Day of First Grade :(

In talking with the nurse, we determined looser bowels can be a side effect from the antibiotic (amoxicillin) that she is currently taking. Last week, Adria was diagnosed with strep throat (ugh!) before school started and has to take the medicine for 10 days.

That said, Adria did not seem bothered by the accidents and later just said she couldn't believe she had to change 3 times that day. Her biggest complaint is that I sent her to school in pull-ups the rest of the week to avoid this happening again while she's on the antibiotic. Wearing panties is a big deal for her...check out Panties are Priceless.

First Grade is Different

Adria does like school and has mostly enjoyed going back. But the "demands" of First Grade have been taxing on her this week, though I think she only shows it at home.

It's just different from her glorious Kindergarten days :)

• New Classroom - One of the biggest differences is that Adria's new classroom is pretty much in the furthest corner of the school building. On one hand this provides her with great exercise to help build up her walking stamina, on the other hand the longer distances to the cafeteria, gym, etc. can be very tiring for her.
• Later Lunchtime - The school food program is great and provides free breakfast and lunch for students. However, her lunch time is 40 minutes later than it was last year and our food-loving girl complains that it's such a "long time to wait for lunch." But really, lunch is at 12:10 p.m. and her teachers try to give them a mid-morning snack. She'll be fine.
• New Teachers - Once again this year, Adria is in a classroom with two teachers. We requested that since we loved how well it worked last year. Her teachers are great and have been teaching at the school many years, and they already seem very impressed by Adria's abilities and confidence. Our girlie really bonded with her teachers last year, and I'm sure she will again this year.
• More Reading and Writing - This will be the case every year, and she'll have to get used to it. We tried to keep her reading and writing over the summer, but I could have invested more time into encouraging her to write. She complains that her hand hurts from all the "coloring and writing." Haha! It's good for her.
• New Friends - There are some familiar faces in her class and many new faces. I have no doubt that she'll be happily hugging all her classmates before too long. She's still a very social gal and when I walk through the school halls with her, many people say, "Hi Adria!"
• New Potty Routine - This year, she is still going to the nurse's office before lunch every day to empty her bladder with a catheter. However, last year she laid on a bed while the nurse took care of everything. Now, she sits on the potty and is more involved in helping with the process, which is great! We've been doing this all summer, but still she wanted to go back to how it was done last year at school. 

One more difference, is that her little sister Johanna will get dropped off at school with her 4 days a week for morning pre-school. Both the girls are very excited about this! 

Mommy and her girls in uniform.
Johanna doesn't have to wear one but she wanted to be like sissy.

Johanna's first day was on Wednesday and apparently just her first two days wore her out good. She was asleep by the time I got home from work last night around 7:20 (it was a late night for me...), only waking up briefly to go potty then sleep all night. 

Don't be fooled by the shy face, she was super excited!

Johanna posing by her cubby at the pre-school open house Tuesday night.

It was a very busy week for us with first days of school and school open houses on different nights for the girls. We're all pretty exhausted and thankful that it was a short school week. Now, the girls have four days off, but I'll be working all weekend. At least I'll have off Monday for Labor Day!

There will be lots of changes and adjustments for us all this school year, and many of them good. Daddy is really enjoying more one-on-one time with his baby boy while the girls are at school. We are also appreciating the great support from both of our Moms, who are scheduled to pick up and help care for the girls several days a week. Grandparents close by is great!

Daddy and his little man

Here's to wishing you and your family a great 2015-2016 school year!

What Seizures look like and How to Respond

This weekend as we celebrate our country's independence, we are thankful for our freedoms and those who help make them possible. But we also think of the millions of Americans, like Adrian, whose personal independence is hindered by a health issue that is hard to control.

Adrian is still in recovery mode from his recent seizure but has been able to stay fairly active. Each one is so taxing physically and emotionally for him. It's been a long time since we have had to deal with this, and it is very frustrating. But we are not alone. More than 2 million people in the U.S. alone live with epilepsy - a neurological condition that affects the nervous system resulting in multiple seizures. It's complicated living when you can lose consciousness without warning at any time.

Here are some facts from Epilepsy.com:

• Epilepsy is the fourth most common neurological disorder and affects people of all ages
• Epilepsy means the same thing as "seizure disorders" 
• 1 in 26 people in the United States will develop epilepsy at some point in their lifetime.
• 150,000: Number of new cases of epilepsy in the United States each year
• Epilepsy is a spectrum condition with a wide range of seizure types and control varying from person-to-person
• 65 MILLION: Number of people around the world who have epilepsy
• ONE-THIRD: Number of people with epilepsy who live with uncontrollable seizures because no available treatment works for them.
• 6 OUT OF 10: Number of people with epilepsy where the cause is unknown

Treating Epilepsy

It’s now been more than five years since Adrian had his first seizure. We know a little more about them now, such as they originate from the right frontal lobe of his brain, and his medications usually work, but…not always.

We have hoped and prayed and many times believed they were gone, yet we will never have 100% confidence that they won't return. 

We decided that our family and friends should be better prepared in the event that Adrian has another seizure or you happen to be around someone with epilepsy who has an incident.

Seizures present themselves in many different ways, and there are many different types. Sometimes the person just stares blankly for a minute or appears to pass out. The type of seizures Adrian has are more severe and include the convulsions that most people associate with seizures.

He has what are called TONIC-CLONIC SEIZURES, formerly known as “grand mal” seizures. They can be frightening to witness, but if you know what to expect, it may help keep you calm.

We put together this information explaining what can happen during a Tonic-Clonic seizure and how best to respond. Who knows, you may find yourself in a Starbucks or Panera Bread someday and be the one to help calm the situation when someone has a seizure...

What Tonic-Clonic Seizures can look like:

Based on the seizures I have seen, this is generally what happens:

• He turns his face to the left and typically falls to the left if standing, when the seizure begins.
• His eyes close as his body will stiffen, clench up and convulse for 1-3 minutes.
• There is often blood coming out of the mouth from clenching jaws that bite the tongue. Interestingly, Adrian's tongue doesn't bleed much anymore because there is a lot of scar tissue from previous seizures.
• Once convulsions stop, he may stop breathing for a minute and turn purple…yes, frightening!
• When breathing stops it is because his chest muscles have tightened during the “tonic” phase. So far, Adrian always begins to breathe again without CPR as this phase of the seizure ends.
• Seizures can cause loss of bladder or bowel control, but not often. 
• The "postictal state" is the brain's recovery period after a seizure that can last for minutes or days. For many, this is a time a confusion with headaches and exhaustion. 
• In Adrian's case, this is when it gets most difficult as he begins to yell, moan and wander around. He will resist anyone who tries to restrain him or hold him down and will show incredible strength. He has no awareness of who you are or that this is even happening.
• This postictal phase typically lasts more than 30 minutes for him, which can feel like forever.
• Most people with epilepsy do NOT have this extreme activity after the seizure, it is very uncommon.

How to Respond to a Tonic-Clonic Seizure:

Here are a few suggestions of things you can do to help if Adrian or someone else has a seizure when you are nearby.

• Most importantly – REMAIN CALM. This has happened before. 
• If you are close by when he begins to fall, try to catch him before he hits the ground or at least prevent him from hitting any sharp/hard objects.
• Look at a clock and note the time - try to time the active seizure but don't let that distract you.
• Remove any harmful or fragile objects from the vicinity around him and place a pillow or shirt under his head.
• CALL 911 –  Look for a Medical Alert card or I.D. bracelet 
• Take any children away from the room or area. Do not crowd around him.  
• Do NOT put anything in his mouth or try to give him water, food, etc.
• Turn his body to the side with his face pointing down to help him breathe better.
• Once the seizure is over, he may get up and walk around during the postictal phase. It's best NOT to restrain him before help has arrived. 
• Again, try to stay calm and speak to him reassuringly, but he will not remember any of this.  

This is a lot of information, but we hope you find it helpful. We are still learning so much about Epilepsy and how to live with it. The cruelness of this disorder lies in the total unpredictability of it. Yet, we have felt God's hand of protection each time a seizure occurred and pray that will continue. And we are thankful that even though these seizures have limited some of Adrian's freedom, he still gets up every time he falls down.

It happened again...a Seizure!

It happened again. A crazy seizure.

This is the post we had hoped to never write. Since our blog started two years ago, we’ve only shared stories about my husband’s past seizures…not current. We contemplated whether we should even share this one so publicly. Yet, there are things to be learned and thanks to be given from what we experienced this week.

THE SEIZURE

It was Tuesday around 7:30 p.m. when our family of 5 stopped into Panera Bread for a light dinner.  We had just arrived in the beautiful Shenandoah Valley of Virginia that afternoon for a 3-day vacation before Mommy returns to work in July after 10 weeks maternity leave.

Our KOA vacation cabin...it was really nice.

I stood at the counter with 8-week-old Judah in my arms and ordered Mac n Cheese meals for our 3 and 6 year old daughters. As I looked back up at the menu to decide on what I wanted, I saw the commotion out of the corner of my eye.

The next thing I knew, my husband was falling to the ground right there by the counter and convulsing.

No! The seizures had returned.

THE HELP

“My husband has seizures,” I said to the staring faces around me as I rushed to him. “But it’s been a long time since he’s had one!”

Half a dozen Panera workers looked at me and questioned:
“What can we do to help?”
“Should we call 911?”
“Can I hold your baby for you?”

I had to think fast. I had to stay calm.

“Yes, call 911. Here, hold my baby. Please take our daughters around the corner, so they can’t see their Daddy. There’s not much we can do for my husband. His seizures last about 5 minutes, but then he gets worse, so we should keep people away” I said something like this, not sure exactly.

Adrian’s body lay on the ground shaking and seizing while some blood trickled out his mouth from his jaws clenching on his tongue. Someone brought an apron to put under his head.

I heard them on the phone call to 911 saying, “I don’t know how old he is.”
“He’s 36,” I told them.

“How can we help?” Several kind, concerned faces looked at me and kept asking this.

“My daughters haven’t eaten. Can you get them some mac and cheese? Wait, where’s my wallet?” The lady at the counter handed it back to me as some guy stepped up to order, uncertain of the situation.

Suddenly, Adrian stopped seizing. His breathing stopped. His body lay completely still.

In a shaky voice, I told them this usually happens and he should come out of it. But as a long minute passed and his faced began to turn deep shades of purple, my leg started shaking in fear.

“It’s not usually this long,” I said as I placed my hand on his chest, “Oh Jesus, help him!”

A group of 4 people came up and said that they were CPR certified. Of course they were. Every time Adrian has a seizure in a public place, there’s miraculously someone there with medical training to help the situation. God be praised!

They checked for a pulse. Nothing. His lips turned white.

“Okay, let’s begin CPR!” a man said, while a woman knelt over Adrian.

Just as she was about to begin chest compressions, Adrian drew in a shuddered breath. Color returned to his face as he inhaled deep, labored breaths. Oh, thank God!

Sirens could be heard outside as the EMTs arrived.  Moments later, he was surrounded by a medical team.

They asked me questions. What’s his name? Has this happened before? How long has he been having seizures? Etc.

I answered as best I could, then I tried to warn them. The seizure is just the beginning. He typically goes into a state of postictal confusion for at least 30 minutes following the seizure. He’s not aware and has no idea what’s happening, but he yells and gets very active and violent.

And just as I was telling them, it began. First, his legs started kicking and his sneakers flew off. Then, the moaning and sitting up trying to push people off him.

“I don’t know what to say, except that this is going to get worse. He’s very strong.”

Another emergency crew arrived. Soon, there were about 8 men fighting to get Adrian strapped onto a transport bed. It was quite a scene by the time they rolled him out of Panera Bread and into the ambulance. They told me not to rush to the hospital.

THE HOSPITAL

I gathered up his shoes, my wallet, the diaper bag, and went over to find our little girls happily coloring pictures with three of the Panera ladies while another held our surprisingly content baby Judah. I was sooo thankful for the help of those women!

They handed me a bag with the mac and cheese, drinks and yogurt and asked if there was anything else they could do to help.

“We just arrived in town on vacation, and I don’t know anyone in the area. Could someone come with me to the hospital and help care for my girls?” I asked, feeling uncertain about what to do.

A sweet, young lady volunteered to come. I got directions, packed up the kids, and headed to the hospital just a few minutes away.

“Mommy, why Daddy fall down? Daddy get hurt, Mommy?” 3-year-old Johanna asked. She’s never seen Adrian have a seizure. Both the girls were worried but remained fairly calm.

While I checked in at the Emergency Department visitor desk, a woman came in and walked up to me.

“I was at the restaurant and just realized what was happening as you were leaving. We live close by. Is there anything I can do to help?” she asked. Her name was Mary, and she gave me her phone number. I thanked her and hugged her, but the girls were already situated with the young lady from Panera and I was eager to check on Adrian.

I heard him right away as I entered the ED with Judah in his stroller. The sound of Adrian’s yells filled the whole department.

They would not let us in his room yet. His dramatic postictal state was still very active and his bed was surrounded by the EMTs.

A doctor came out and asked me about what happened and his seizure history. He said Adrian’s behavior had been very “impressive” and they had given him several doses of medicine to try to calm him.

Eventually, the doctor had the EMTs clear out and let me and Judah come in the room. Adrian was soaked in sweat. His face was red. His shirt was stained and dirty. His ankles and wrists still strapped to the bed as he continued to moan.

Adrian exhausted around midnight Tuesday after the seizure.

I tried to talk to him, but he had no idea I was there. We turned off the lights and he calmed down and fell asleep while sitting upright.

It was more than 2 hours after the seizure started before he showed any signs of awareness and recognition.

During that time, I called our parents and repeatedly checked on the girls. I was worried about them, as I knew they were tired and I needed to let the stranger who had stayed with them go home. Her name was Shannon, and she was a college student getting ready to leave for a summer trip to Africa to teach English.

Meanwhile, Adrian’s sister Betsy realized that we were actually close to one of their cousins, who we haven’t seen in a few years. His cousin Samantha texted me and soon she was at the hospital to stay with the girls in the family room waiting area, so Shannon could leave.

Johanna really wanted to go back in the ED and see Daddy, but I didn’t want her to see him like this. She kept asking about him every time I checked on them.

THE AFTERMATH

Finally, around 1 a.m. Adrian was discharged after they had completed all the tests they wanted to run and we’d had a good discussion with the doctor. It was a long, tiring night for all of us. But I was so thankful for those who stepped in to help and for our children behaving well in the midst of chaos. Judah was my comfort, as he remained in my arms for hours that evening, regularly being adored by the nurses.

Baby Judah sleeping in his carseat/stroller with a hospital gown blanket that night.

Adrian was barely able to leave the ED under his own strength, but he did. When we stopped to get the girls out of the family waiting room, they were fast asleep snuggled close together on two benches. Samantha said they insisted on sleeping side by side. Little sweeties.

The girls fell asleep together in the family room ED waiting area.
This was taken around 1 a.m.!

We arrived back at our cabin in the woods around 2 a.m. (after a quick stop for groceries at Walmart!) Rest did not come easily, but we tried our best to enjoy the remainder of our “vacation” before returning home on Friday.

We are so disappointed that it happened again. The seizure episode was frightening and once again leaves us with questions. Some that cannot be answered.

I hate to see my husband fall down. It feels wrong and unfair. And we will continue to fight for an end to these seizures.

Yet, we get up again and will continue to live each day, trusting and believing for God’s hand of protection to surround us. And we are so very thankful for all the strangers and people who stepped in to help a family in need that night!!!

In spite of the crazy night, we still took time to enjoy mini-golf, the playground and pool.

Daddy and his little man chillin' in the cabin.

A Midnight Trip to the ER

"Sitting in the ER with my husband, Adria's asleep in her stroller. He's stabilizing so hoping to leave soon."

Yesterday a notification popped up on my Facebook account that this was my "status" four years ago just after midnight on April 19. I had almost forgotten about that trip to the ER...but not really, I just haven't thought about it in a while.

The ER visit was a result of another seizure that had shown up completely unexpected. Except this time, Adrian had two seizures...in the same day...that had never happened. And it was the first time that our little toddler Adria actually witnessed Daddy having a seizure :(

It had actually started as a very exciting day for us. I had a doctor appointment with my OB/GYN who had confirmed that I was indeed pregnant again and just over six weeks along. Even at such an early stage, I was able to see a tiny flutter of a heartbeat on a screen...that little heart continues to beat in our daughter Johanna. It was so reassuring for us to see this little life as just three months prior, I had miscarried at 10 weeks pregnant and never saw or heard a heartbeat.

But my joy soon changed to fear, as later that day I received a phone call at work from my very delirious and confused husband. I left my model home office right away to arrive at home and find Adrian walking around disoriented with a few blood traces on his face. I found more blood spots on the carpet and the small gash in his tongue...all evidence that he had endured another grand mal seizure! Two year old Adria was playing quietly with her toys in the other room and seemed oblivious to what happened. It had been about four months since his last seizure, so there was no indication why another had occurred.

Later that night, Adrian's shoulder was in incredible pain (which often occurs as a result of the convulsions) but he seemed stable. It was late, so I decided to quickly run out to the pharmacy to get him some pain meds. I left Adria at home watching a movie, since I wasn't going to be gone long. In hindsight, that wasn't my best idea, but I had no reason to think anything else would happen. Adrian's seizures had really only come months apart from each other thus far.

To my great dismay, I returned home to find my husband floundering around the kitchen with more blood streaks on his face and a distant look in his eyes...and our precious little girl stood in her walker at the edge of the kitchen crying and afraid. It was a terrible moment!

I quickly helped Adrian find a seat, then held little Adria close to comfort her. Of course, she and I cried together for a little while. Later, as I changed her diaper, Adria actually told me, "Daddy fell on the countertop. It was scary!"

Her comprehension and ability to share what happened amazed me, since she was just 2.5 years old. But it really worried me as well that she had to see it.

Since this was the first time Adrian had experienced back to back seizures and the pain he felt was so intense, I took him to the local ER in Indianapolis, Indiana (where we lived at the time). It was almost midnight when we arrived. They did a CT scan on him, which came back normal... And pumped him full of strong pain meds so he could rest.

Adria could not walk on her own at the time, so she just rested in the stroller until Daddy was discharged around 4 a.m. I was exhausted as I took my husband and daughter home in the wee morning hours...wondering what we should do.

The neurologist later suspected that Adrian had the seizures because he was on a generic brand seizure medication and made sure that he be put on Dilantin.

Thankfully, my parents were already planning to fly in from DE and visit us at our Indiana home, so they were able to help care for Adria the following week as I returned to work. We enjoyed their visit and went on several outings, including a visit to downtown and the Indy 500 Motor Speedway, but Adrian was definitely not himself and still recovering.

The drama of the seizures was lessened by our little Adria's progress using a walker and becoming more independent. She even got to do an Easter egg hunt on her own with Grandma being clever to strap the basket to her walker. And when the grandparents left, Adria asked to fly with them...she loved the airport.

Two year old Adria enjoying her first independent Easter egg hunt with her walker, just days after Daddy's seizure.

My parents and brother Aaron visiting us in Indianapolis that week.

Our little family moving on from the drama of a few days earlier with a visit to White River Gardens.

So I look at how different our lives are on April 19, 2015 compared to April 19, 2011. Instead of just finding out we're expecting another baby, we are now just two weeks from the expected arrival of Baby Boy Seely.  Adria's not learning to walk, she's running around doing her best to keep up with other kids on a soccer field as she tries out organized sports!  Adrian has remained mostly healthy for two years, still with lingering side effects from the seizures but nothing like what he used to have. And we're back to being a few minutes drive from our parents, instead of a 12 hour drive. It's life. Don't get too comfortable, cause you never know what might happen.

Adria (far right) poses with her soccer team on Sunday, April 19, 2015
as part of her first ever organized sports experience.

The Incredible Shunt Alternative for Hydrocephalus

I still remember sitting in the hallway of A.I. duPont Hospital for Children and hearing that CRY. It was one of the most beautiful sounds I'd ever heard. It came from around the corner and before I could even see her, I knew it came from our six month old baby girl. It was the sound that reassured me Adria would be okay after having just undergone head and brain surgery.

Six month old baby Adria that Monday morning before her surgery.

That morning was exactly six years ago today, but I still get emotional thinking about my husband and I sitting in the parent waiting room for a couple hours while our precious little Adria become only the eighth child in the U.S. to have a unique and revolutionary procedure done to treat her Hydrocephalus.  This build up of fluid in the ventricles of the brain is very common in children/babies with spina bifida (Adria has L4-5 myelomeningocele), but the typical treatment is a VP Shunt, which is a tube inserted into the brain to allow the excess spinal fluid to drain down into the abdomen. While this helps the issue, most children (and adults) with a shunt will have complications and malfunctions over time that can require multiple surgeries to correct.

This image shows what a Shunt looks like in babies. Many with spina bifida need this,
but Adria never did because of the ground-breaking procedure her pediatric neurologist performed on her.

Instead of having a shunt to treat her hydrocephalus, Adria's neurologist recommended a procedure called Endoscopic Third Ventriculostomy with Choroid Plexus Cauterization (ETV/CPC). Yeah...try to remember that name, let alone explain to someone what it means... But the fact is, this procedure successfully treated Adria's hydrocephalus and six years later, she has experienced NO COMPLICATIONS from it or every required another surgery!!! This is truly incredible. The only evidence that she even had an operation is a small scar buried in the hair atop her head.

Adria's Recovery

Soon after we heard the familiar cry in the hallway six years ago, we saw our sweet baby and held her in the Recovery Room. It was a large room full of young patients just coming out of surgery with just curtains separating us. Unfortunately, Adria's cries would not stop because she was so hungry. In preparation for the surgery, she had not eaten since the night before and the IV nourishment just didn't cut it for her.

The nurses were concerned about her throwing up if I fed her a bottle. But I started to be in extreme pain too...any mother who has nursed her baby and heard the cries of a hungry baby knows what I mean. Before too long, a nurse heard me complain about it and asked, "Oh, do you still breast feed her?" I told her Yes, and the nurse said, "Well then she can eat! She should be fine to nurse, breast milk is okay for her tummy." Praise the Lord! At that moment, I was more thankful than ever that I could nurse Adria. Within minutes, we were all Much Happier!

As Adria recovered from surgery, she did experience a lot of swelling on her head and looked so different. But Daddy held her in his arms for hours at a time and she recovered well and was transferred from the PICU (pediatric intensive care unit) to a regular patient room late that night.

Adria in the PICU after surgery with swelling on her head and paddles on her hands to hold the IVs in place.
Good thing she had her Soothie pacifier to provide extra comfort!

Daddy giving his baby girl some healing love.

Adria recovering in her patient bed that looked like a giant cage.

Within a few days, we were headed back home with a happy little girl who just had a little bald spot of her head where the surgeon had performed the operation.

The Man Behind the Surgery

Occasionally in life we find ourselves blessed and touched by an individual simply because we were IN THE RIGHT PLACE AT THE RIGHT TIME.

Now I don't necessarily believe this is coincidence; it's more like divine appointment. And for our family, this happened at a most critical time in our lives.

We met Dr. Benjamin Warf when I was five months pregnant with Adria. In the weeks following the ultrasound that first revealed our baby girl had spina bifida, we found ourselves sitting in front of many different doctors and specialists...desperate to learn and understand more about this unique life I carried.

Dr. Warf sat there with us in a tiny room at A.I. duPont Hospital for Children in Wilmington, Del. His kind and humble demeanor immediately put us at ease, even as our minds buzzed with the information he provided. We did not realize it then, but I know this to be true now, he is one of the BEST PEDIATRIC NEUROSURGEONS in the World! This is no exaggeration.

He is the father of six children and actually pioneered the ETV/CPC procedure to treat hydrocephalus while serving as a missionary doctor in Africa for six years. He realized the need to treat this condition without a shunt, particularly in a developing country where a shunt malfunction can quickly become life-threatening. He had fairly recently returned to share this procedure in the U.S. when we first met him.

Warf remained at A.I. duPont Hospital only a short time, but he was there to operate on our daughter's spina bifida closure surgery at birth and this surgery six months later. That following summer he moved on to Boston to further develop and teach this new procedure to medical students at Harvard and work at Boston Children's Hospital. Before he left Delaware, he did teach the ETV/CPC to another neurologists who is still at A.I. duPont Hospital performing this life changing surgery on children.

Even today, six years later, this procedure is still NOT widely known or used in the medical and Spina Bifida communities. I am a HUGE supporter of it and highly recommend any parent research whether this is an option for their child!

Since it's very difficult to explain what this surgery exactly is, I'll let Dr. Warf do the talking.

I just found this great video where Dr. Warf explains Hydrocephalus, a shunt and the benefits of the ETV/CPC procedure! Take a look: