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.

Another Hospital Visit

Adria's leg strength has greatly improved over the past six months! That's the official report from the doctors during our visit to A.I. duPont Hospital for Children on Tuesday.

Was it playing soccer perhaps? Or walking through the long school hallways? Or the weekly physical therapy sessions at school?

It's all working together to significantly improve Adria's strength and stamina, and her orthopedic doctor and assistants were quite impressed with the change  since our last visit in December. Adria walked and ran down the hospital hallway with and without her braces to show them her stuff.

We also discussed the pronation of Adria's feet and how her right foot especially seems to be turning outward more. Her doctor noted that the tendons on the outside of her feet are tight, like many children with spina bifida, and may need to be corrected with more than just leg braces (orthotics) in the future.

That means surgery. Thankfully it's not needed now, just likely at some point in the coming years. The exact type is yet to be determined, but the orthopedic doctor prefers to wait on surgery until the children are older. We've known about this possibility for a while, but have not discussed it much to this point.

I took this picture of Adria today without her braces on. As you can see, she was not too happy about posing for me.... She was actually complaining about her feet being in pain :(

It's incredible that she can even walk barefoot, but it does often cause her pain.

Adria's feet pronate outward without her braces on.

Adria has been extremely fortunate to have only had two surgeries at this point in her life. Many children born with spina bifida have more than a dozen surgeries in their youth. Surgeries to address the build up of fluid on the brain, problems with legs and hips, bowel and bladder issues, and much more. Even just yesterday, a boy we met in Indianapolis who is just a few months younger than Adria, went in for the Malone procedure and Mitrofanoff appendicovesicostomy, which are complex surgical procedures for children with severe bladder and bowel challenges.

While I do not like the prospect of Adria needing surgery in the future, I realize how fortunate she has been. Still, I pray that she will continue to walk and "run" the way she does and not require invasive surgeries.

We'll be traveling north again in July to meet with Adria's urologist at the same hospital and discuss how her life has changed since our last visit in December, when we learned the PERISTEEN procedure.

The physical therapist and other specialists at A.I. duPont Hospital check Adria's strength and leg movement.

All three of our children came along for the morning of doctor appointments on Tuesday.

Chubby Cheek Baby Boy :)

In spite of meeting with multiple doctors that morning, I think the most dramatic part of the day was taking care of the needs of three children in a public restroom!

Johanna who is potty-trained, Adria who requires catheterization, and Judah who had a nasty diaper blow-out. That was a rather time consuming ordeal, but at least Daddy was there to watch the other two while I took care of each child's needs one at a time. Shew!

We have been to the Children's Hospital many, many times since Adria's birth and will continue to do so at least twice a year for the foreseeable future. It's all just part of her life with a child who has special needs.

If you want to learn more about her past doctor's visits, here are a few posts to read:

• The Incredible Shunt Alternative
• Answer to Stinky Situation - Peristeen
• Learning to Catheterize a Toddler Girl
• Brothers with Spina Bifida
• Getting Wheels and Tests

Does Baby Sleep All Night?

"Does he sleep all night?"

This is the question I have heard the most since our son was born over six weeks ago.

No. The answer is No. 

In fact, I'm writing this around 3:30 a.m. because I couldn't get back to sleep after his 2:30 feeding and his 3 year old sister Johanna is having a rather restless night's sleep as well.

But in my experience, it's pretty rare for baby's less than two months old to sleep through the night. They are growing so rapidly at this point and need regular nourishment...throughout the day and night.

That said, when I get the other common question, "Is he a good sleeper?" 

I say, "Yes!"

People ask these questions because pretty much every parent has been there. Disrupted sleep is one of the first major challenges of parenthood. But, we should not have to suffer through sleepless nights too often.

Our baby Judah goes to bed for the night around 10 p.m. Typically, he sleeps 3-4 hours before he awakens crying and hungry around 2 a.m. I rock him and nurse for about 20 minutes then return him to his crib, where he falls back asleep for another 3 hours or so. He's up again around 5 a.m. to feed then up at 8 a.m. to nurse and get dressed for the day.

While I am awake a few times each night with Judah, I say he is a good sleeper because he wakes at regular times and falls right back to sleep after I feed him (usually). I don't have to sing, rock or hold him for hours at night.

Soon, I believe the distance between his nighttime feeding will get longer and eventually he will sleep all night on a regular basis.

Transition to the Crib

Just a week ago, we made the big transition to move him from the small cradle in our bedroom to his own crib in the nursery. The first couple nights, he did not like it as much but has settled in now.

Judah's sisters love on him during his first week home.
He slept in this cradle by our bed for his first 5 weeks.

I do miss the sounds of his cute baby coos and breathing, and it was much easier to just pick him up and lie in bed to nurse when he's right there. However, Judah can be pretty noisy, making it hard for us to rest well. It's especially important that his Daddy sleep well, since lack of sleep has been an apparent trigger for seizures in the past.

So, Judah sleeps in his own room now with a cheap, old baby monitor letting me know when he wakes up. It's the same one I used for Adria six years ago. I actually bought a video monitor when Judah was born, but after trying it out, I decided it wasn't worth $170. I know some parents love them, but I never really needed it before.

Judah taking a nap in his crib. He sleeps on his back at night, but naps better on his belly.
We can keep a close eye on his during the day.

Precious sleeping boy

I share all this about Judah's sleep patterns because getting your baby on a good sleep schedule is one of the most critical aspects of keeping your sanity as a parent.

Advice for Good Sleepers

For new parents, I have a few pieces of advice for helping your baby to sleep better:

1. Don't sleep with your baby!

If there is any advice I hope you take from me, it is this: Do not sleep with your baby! Aside from it being dangerous for your baby, it is the number one way to ensure that neither of you will get a good night's sleep. Sure, baby might cry less at first when he's in bed with you, but he will quickly become dependent on you and not able to develop good sleep patterns. I have heard of this issue with many young parents and even extreme cases where their 8 year old still wanted to sleep in the parent's bedroom! Spare yourself and help your marriage and your baby by heeding this advice.

My exception to this rule is in the morning. After Judah's 5 a.m. feeding, I'll often keep him in bed for extra snuggles :)



2. Schedule naps at the same time every day

Good sleep patterns at night start with a good schedule during the day. In the first weeks of life, babies generally sleep A LOT. Some days it seemed that Judah only awoke to eat and went right back to sleep. But now he's awake more and takes a nap in the morning and a long 3-4 hour nap most afternoons. I'm still developing a good Sleep, Eat, Awake schedule for him (since I have him out and about too often...), but I know that when babies get regular rest during the day they sleep better at night.

3. Create a night-time routine

Just as with the day schedule, it's important to create an environment and routine at night that let's baby know it's time to sleep. Ideally, lie baby down in the same place and at the same time every night. I'm just starting the following routine with Judah, now that he's in the nursery:

• Change his diaper and clothes
• Turn the lights down low in his room
• Play a CD of quiet lullabys (most parents probably have a playlist on their iPod or phone these days)
• Rock him while he nurses
• Lay him down in the crib before he's completely asleep (if possible)

It's best if baby is not dependent on being held to fall asleep, but don't let that stop you from enjoying this special time!

4. Let him cry a little

If you have done all this and baby is fussy in bed, it's okay to let him cry a little while trying to fall asleep. Full on screaming and wailing will need your attention, but sometimes it's good to give baby a few minutes to learn to calm himself. And during the night as baby gets older, he might make fussy sounds but don't pick him up right away. Wait a few minutes to see if he's really waking up to feed or just between sleep cycles.

5. Be Relaxed

The more relaxed you can be while feeding your baby (whether bottle or breast) before bed and during the night, the better chance he will relax. If you are tense and upset, your baby will sense that and likely act the same. Try to focus on the wonderful miracle of life that you're holding, not how exhausted you are because this child is being difficult! I know this is no easy task at times.

Just My Opinion

You can take it or leave it, but these are my words of wisdom after having three babies. Our girls have been great sleepers through the years, and I attribute it to these tips.

Of course, some days I am the biggest offender of my own advice. I take the kids here and there with no care or worry about baby's schedule, just making sure he gets fed! Life's no fun if you're too rigid, but keeping some type of schedule definitely helps create order. And it's especially helpful when it comes to answering the question....

Does your baby sleep all night?

The End is Here...of Kindergarten

Today was our little girl's last day of Kindergarten. Adria sobbed on her way home from school yesterday. She is deeply perplexed that the school year is over.

She's had a fantastic year of learning, making new friends, and improving her mobility.

From what I see and hear during my visits to her school, she is loved by her classmates and teachers and is known for her out-going, witty personality!

This morning we watched Adria perform, along with about 150+ other kindergarten students in her school, for their end-of-year program. In spite of the roasting hot auditorium, it was cute to watch her get so enthusiastic with her singing and dancing.

We have been pleased with our decision to send her to the local public school, even though her Daddy and I never attended public school. She was in a classroom with two fantastic teachers, who were great at encouraging their students while pushing them to do their best. Adria thrived in this environment and often assisted other students with their work (so I was told).

Adria poses with her fantastic teachers just before leaving her kindergarten class for the last time!

When I told Adria's teachers that she cried because this school year is over, they said, "She has such a love for learning. We are sad for her to leave us, but we know she will do great in first grade!! She has really touched our hearts this year!"

It is exciting to see all the educational skills that Adria has mastered this year, including:

• Counting to 100 and beyond easily
• Reading and writing over 60 memorized sight words
• Adding and subtracting numbers up to 10
• Sounding out words and reading small children's books
• Understanding more about different areas of science
• Typing on a computer and using the internet

In addition to increasing her mental abilities, Adria also improved her mobility through weekly physical therapy appointments and was able to achieve the following:

• Walking up steps - at first holding the rail with one hand, now she can walk up and down 3 steps without holding onto the rail! She continues to work on alternating her feet and doing more steps without requiring a rail.
• Balancing as she walks along a 4-5 inch wide beam.
• Jumping on one foot! She came home a couple weeks ago and showed us this impressive skill with her left foot; she's still trying to do it on her right foot.
• Playing on the majority of play ground equipment independently.

Her physical therapist said, "I lover her independence and willingness to try everything!"

At some point during the year, she became the permanent line leader for her class whenever they walked through the halls. Her teachers gave her this opportunity so that she could set the pace, since she tends to walk more slowly, but they noticed when she had the responsibility to lead, she was more confident and kept her pace faster. I thought this was so great of them to do!

One of the best parts for me has been so many fun class trips and activities at the end of the year, and I have gotten to experience them ALL with her since I am still on maternity leave! It's been sooo great! Here are some of Adria's end-of-year activities that Daddy, Judah and I were able to experience with her.

Kindergarten All-Stars Trip to Funland in Rehoboth Beach

Riding the Fire Engine - Funland was open ONLY for her school's kindergarten class that morning!

Adria totally impressed me by going through a huge obstacle course that was really tough!

Lunch on the boardwalk with her class.

Our family on the beach afterwards

School trip exploring Cape Henlopen State Park in Lewes

Scavenger hunt on the beach

Mommy wearing baby Judah while enjoying the class trip

Adria and friends playing in the sand and water

Greeting the horseshoe crab in the Nature center with her teacher

Walk to the Library in Greenwood

Daddy joined her on this hot day as her class walked to the library.
Adria used her wheelchair for the first time at school, since it was a longer distance.

Field Day at her School

Judah joined me on Monday to cheer on Adria at field day.

They had many relay races and running games...Adria participated in every one.
She later said there were too many sweaty games :)

I loved her style of doing the sack race. Instead of stepping inside, she held the sack in front of her or behind her like a cape and then did her best to "hop" with her braces.

This bouncy ball relay was one of the last morning events. She had a hard time with it and got frustrated, but she was determined to do it. Her teacher even bounced along with her to help her finish.

In all of these activities and many times throughout the year, our little Adria would sometimes trip and fall, but it never seemed to phase her. Falling is just part of her life. She barely acknowledges it before she's picking herself up again and experiencing all that she can!

We are so proud of our little Kindergarten All-Star!

To read more about her school journey, check out these posts:

• Welcome Class of 2027!
• Her First Graduation
• Her First Day of School
• Free Breakfast and Lunch
• When the School Nurse Called

Big Sisters

These two little girls are so in love with Baby Brother... usually.

Sometimes they literally smother him with kisses and other times the videos and games on the iPad are much more interesting.

But they are clearly disappointed by one thing. He's growing too fast!

Yesterday, 6-year-old Adria said, "Mom, he's so 'uncute' compared to when he first came out of your belly. He's getting so big!" And then she let out a few rather pitiful sobs. Another night she saw me holding him and remarked, "He was so precious and little when he was born. He's growing too fast!"

When Judah was first born, just over five weeks ago, 3-year-old Johanna would often say, "Ah, he's so precious, Mom. Awww, he's so cute!"  Now, she says he has a big belly ;)

The "Smother Brother" kisses

It is true, our little man has grown and changed so much over the past two weeks. The Newborn size clothes that were a perfect fit early on, are now packed away, and Judah is filling out the 0-3 months clothes quite nicely...for now.

I knew it would happen this fast. I've seen it twice before. And still, I wish we had just a little more time in that adorable newborn phase when babies are so tiny. Yet, I'm thankful for a happy, healthy growing baby. Who is still super cute, I might add.

Daddy's photo shoot of Judah, just over a month old

Judah's big sisters have had much to say about him and babies, since his arrival. Here are a few sayings I thought were especially cute:

• "Mom, do all baby Men have such hairy ears?" Adria noticing Judah's fuzzy ears.
• "He has the cutest little but ever!" Adria exclaimed after watching me change Judah when he first came home. This was followed by a shriek and, "Baby boy pee-pees are gross!!!" (waahahahahaahaa!)
• "Mama, did you hold Jo-Jo lots and lots when I was baby?" Johanna says as she sees me rocking baby brother.
• "I'm going to have twins when I grow up!" Adria said. My reply, "Haha! That's up to God."
• Her response, "I'm so glad He gave us a little brother like we wanted. Thank you!" Then she blew a kiss toward heaven.
• "Ahhh, baby brother is getting all your lovins'. I wish I got more." Adria said after she saw me give Judah dozens of kisses on his cheeks. Of course, then I had to give her a kiss attack! There may be a wee bit of baby jealousy.
• "Mom, is his belly button all better?" Johanna asked after his umbilical cord came out around 2 weeks. The still attached cord clearly bothered them.
• "This baby makes our family even cuter!" Adria said. 

It's pretty fun and entertaining to have two little "mamas" around to "help" with their brother. They are usually good, but they both seem convinced that they can pick him up...which this mama does not allow! And their affections can get rather overbearing.  But I know they just want to show their love.

I do hope they enjoy it, because he's just going to keep growing and changing faster than they want! Faster than I want too, but it's all part of the parenthood adventure.

Mommy and her precious babies

Speaking of growing, Judah is sleeping in his nursery crib for the first time tonight instead of the cradle in our bedroom. Here's to hoping it goes well, and that I'll just be up the normal 2 to 3 times a night to feed him and not more!