Family Medical Motherhood

The Baby Had A Seizure… So We Had To Order Pizza

August 2, 2014

 

Nora had one seizure cluster today. We refer to her seizures as “clusters” as they involve several 1-second to 60-second seizures over a 10 to 20 minute span.

These seizures leave Nora drained, her body loose and jelly like. It’s exhausting to experience with her. Every ounce of her body tenses, her eyes shoot, locked in one direction, or rolling loosely to the sky. Her core, arms and legs tense, rigid in your hands. Her eyes track you between each seizure but her bright-eyed countenance is lost.

You can’t control the seizure, but you can time the seizure, turn her on her side, monitor her breaths, wipe her sweet tulip mouth and talk to her.

Everyone says something different when they hold Nora during a seizure.

Tyler holds her close and whispers gently, “I’ve got you baby. Daddy’s got you. Almost done. Just a few more…”

Tia sweetly coos, “You’re so patient… yes you are. So patient.”

Nanna softly reassures her, “It’s okay. Yeah, you’re okay.”

Me? It depends. If we are alone I sing, “All day, all night, angels watching over me my Lord. All day, all night, Angels watching over me.”

If I’m in a group, I whisper, “It’s okay sweet girl. Momma’s right here.”

In the hospital, when Nora was diagnosed with a seizure disorder, my initial assumption was that stopping her seizures would require some calculated dosage of medication twice daily and that would be the end of it. Boom. Seizures under control. That’s how medicine works, right?

I wish it was that simple.

Every brain is beautifully unique, therefore treatment of each brain is also unique.

The day we wound up in the emergency room, Nora had between 6 to 9 seizure clusters within a 24-hour span. Since we have been home from the hospital she averages between 1-3 seizure clusters per day. This is quite an improvement. We are so thankful for the medical support that has gotten us to where we are today.

Although Nora is having less seizures, it is not considered a successful treatment unless she is seizure-free.

You see, seizures come at all hours of the day and night. They disrupt Nora’s play, sleep, and even her appetite. Seizures steal her energy, ability to focus and play. All of which are fundamental components to her development. In Nora’s specific situation, her ability to engage and work towards developmental milestones is critical due to her unique brain structure and the many unknowns in her future. In treating Nora’s seizures, the goal is to minimize the amount of seizures while allowing her to be as alert as possible. A seizure-free sedated baby can’t work towards reaching developmental milestones either…. You see, it is remarkably delicate.

To combat Nora’s clusters, our neurologist recommended an aggressive 7-week steroid treatment. The treatment includes intense short-term side effects; a weakened immune system, potentially high blood pressure, irritability, hyperactivity, and weight gain (increased appetite). The neurologist put the fear of God in me with her emphasis on the weakened immune system, “I’ve had healthy babies catch common illnesses and actually die due to a compromised immune system.”

Tyler and I thought and prayed about putting Nora on this treatment. So many unknowns. But, if it worked, Nora could be rid of her current seizure clusters. Though the neurologist made it clear other types of seizures might develop in the future, the treatment brought us hope.

Tyler and I agreed that the potential benefits for Nora were worth the short-term side effects of the steroid medication.

Just a few days before we were supposed to start the treatment, Nora went a day without a seizure.

I called the neurologist. Hopeful. She said we could hold off on the treatment as long as Nora was seizure-free.

Nora went another day.

We felt so normal. So relaxed.

You see, after you experience a seizure with Nora, whether you hold her or not, you are exhausted. It’s like your body is tensing with hers, your mind bending, your heart racing.

Soon after its over you might find yourself prone to binge on some type of comfort food. Once, while with my family, Nora had a seizure and my mom, cousin and I had a craving for one of the all time greatest comfort foods. Pizza. Obviously.

When several family members returned from an outing they said, “you ordered pizza without us?!”

Our reply was, “The baby had a seizure, so we had to order pizza.”

It was only logical.

We had two beautiful seizure-free days with Nora before she had a seizure… then another seizure…

We went ahead with our plan to start the steroid treatment.

Nora started the treatment 6 days ago.

We are told that we will know if the treatment is effective within the next week. Although we will need to remain on the treatment for the full 7 weeks regardless of her response as it takes that long to taper off the medication.

We are hoping and praying Nora’s body responds to this treatment and leaves her free of seizure clusters.

Will you pray for Nora every day this week?

Pray around your dinner table, as a family. In your churches as a community. Pray beside your bed in the quiet of the night. Pray in the morning over your coffee and kindle. Pray at noon on your lunch break. Pray in the evening as the stars come to light. Pray your heart out for hope, for healing.

 


Photo credit: Jessica Rice Photography

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  • Reply Joanie Brandt August 2, 2014 at 8:46 pm

    Dearest Jesse, Tyler and Nora,
    Jesse, you sure do have a beautiful way with words and I can almost feel what you are experiencing. When I finished reading this latest, I find I am tired and my stomach has done a few flip flops. Tears are in my eyes, not out of pity, but out of being so very sad for the three of you. I would never pity a family that has such a gorgeous little soul to care for and live for. I just want you to know I pray for Nora, for her seizures to subside, and for the proper medications, as well as for the two of you and your entire families. The words you speak or sing to Nora when experiencing a seizure, are so assuring to that little one God has entrusted you with. Continue being as strong as God helps you be and I will continue to pray for you. Nora is on my mind more often than you can imagine, as are you, Jesse and Tyler. Jesus, I trust in you. That is my prayer for so many trials that come along, and I know He is always with us and is certainly at your side. Dear God, please bless this family and Nora with your never ending love and mercy. Nora, you are a beautiful little girl and God will never foresake you. Love to the three of you.

  • Reply Kelley August 2, 2014 at 9:27 pm

    We will be praying morning, noon and night for your sweet girl. Pizza is totally our comfort food too 🙂

  • Reply Keith England August 2, 2014 at 9:46 pm

    Yes I will.

  • Reply Brenda Madsen August 2, 2014 at 9:56 pm

    I Prayed for Nora last night, although I didn’t know she had begun this treatment. I will continue to pray for her for the next 7 weeks.
    XO Brenda

  • Reply Betty Koolhaas-Noble August 2, 2014 at 10:01 pm

    Yes, I will pray for Nora as many times possible everyday. She is on my calendar and my heart. I love you Nora and know many people are praying for you along with me.

  • Reply Kimberly August 2, 2014 at 10:26 pm

    Sending up prayers from Kansas tonight! Love to you all.

  • Reply Sheryl pedroza August 2, 2014 at 10:44 pm

    On my knees for baby Nora. It is an honor to pray for you all. god is faithful.

  • Reply Marilyn Demler August 3, 2014 at 1:27 am

    Yes, Jessie, yes I will pray before I fall asleep, when I wake, when I’m going for a walk, when I’m driving over to sit with Nora’s cousins. Your beautiful, sweet family is my thoughts and prayers many times a day.

  • Reply Lauren Joslin August 3, 2014 at 2:02 am

    Yes. I will pray. I’ve been praying. The saints are lifting your family up in prayer.

  • Reply alida August 3, 2014 at 7:07 am

    Praying for Nora and your famiy

  • Reply Eva August 3, 2014 at 7:47 am

    Nora is in my prayers daily. She looks so strong and alert in this photo. Your words are beautiful and honest. You are amazing parents to Nora.

  • Reply Jacks August 3, 2014 at 10:30 am

    We are praying daily.

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