I vacillated on how detailed of a story to tell about Jill’s seizure Thursday night. I want to protect her privacy and respect her story as her own, while still being transparent. After much thought I decided to give you an account of events because her story is my story, and my story is our story…and if her epilepsy can help others understand and cope and support another…then her suffering will not be wasted. I will warn you though, this will not be my shortest post.
My mom was home watching the kids while I went to an OB appointment and then stopped by Stitch Market and chatted with my friends. When my phone rang at 7:45 p.m. and I saw the name “Mom” on the caller ID, my heart sank. My mom NEVER calls when she’s babysitting.
“I’m so sorry to call you, but Jill is hysterical. I can’t get her to stop crying. I’ve tried everything and I’m kinda freaking out.”
I could hear her crying in the background. It wasn’t a regular cry. In fact, it was much like the hysterical cry she cries after having a seizure. I sped home, rehearsing my speech in between prayers, in case I got pulled over.
By the time I got home (I was about 30 minutes away), she was asleep, but had thrown up twice. Even though she was asleep, I wanted her to know I was home again, so I picked her up knowing full well she would wake up. She did, and I immediately noticed she was floppy like a rag doll. Within minutes, she threw up again. Andy got home then and his concern was obvious…something was wrong. Her cry, the way she felt…call it a parent’s intuition, but we both immediately knew.
Since her hair was now sticky from vomit, Andy offered to get into the shower with her. She was shivering. Not just a little bit shivering, but shivering like she was rolling around in the snow in a bathing suit. He turned up the hot water and stood there with her…but the shivering didn’t stop. It was at this point we noticed her pupils were HUGE. You could only see the thinnest outline of that bright beautiful blue. We wondered if maybe she had had a seizure and my mom didn’t notice (her seizures don’t look like the full body jolting you see in the movies, but that’s for another post). In fact, she was acting more like she was postitctal. Even though it was well past her bedtime by this point, Andy said “Don’t put her to bed. Just hold her for the next few hours until we go to bed.”
Within half an hour of his comment, she was throwing up again…and minutes later we were calling 911.
We have an emergency “rescue” med that is a gel based Valium…basically, if we can get the seizure to stop on our own, we simply send the paramedics away and let her rest.
First dose: no change. Second dose: no change.
The paramedics gave her a third dose (of a different) anti-seizure med: no change.
Not that this has ever really helped anyway. We always end up going to the ER.
And off we went to the local emergency room. I wasn’t panicking. This wasn’t my first rodeo. Of course I was scared and sad for my sweet girl and my mama’s heart threatened to burst, but she has epilepsy…that means she’ll have seizures, right? It’s kind of like when your kid has the stomach flu. You are sad. You wish you could whisk it away, but ultimately, you know it will pass and you just have to get through it. I realize how odd that sounds when you apply it to a seizure, but epilepsy is part of our life and so we have learned to adjust.
It’s all blurry now, but it took another 3 – 4 (?) rounds of medication to finally get her seizure to stop. This is fairly standard for Jill. Her seizures are unusually aggressive and typically last 60-90 minutes and require LOTS of meds to make them stop. (This isn’t true for most seizure patients…but she has a “complex case”.) Andy and I sat next to her. Tired and sad, but totally fine. We hedged bets about how long until they would release us to go home. We both figured about 2-3 hours of monitoring and then we could crawl into our cozy beds.
I even texted friends and family to say she was fine and we would be home in a few hours.
The doctor made it a point to commend us. “I just have to thank you guys. You are the most calm seizure parents I have ever met in my career. Thank you.” We smiled. I just thought to myself: if only you could see my insides buddy. I’m a mess.
“Andy…is she seizing again???”
And so began the real events of the night. Her seizing started again. This was a first. She has always stopped and then all was well. Doctors gave her more medication. It didn’t stop. More medication. It slowed…stopped?…started again?…it was so hard to tell. By this point, she had SO many sedatives in her system, nothing was normal…but her eyes were the tell tale sign. At one point my mom had mentioned that she had fallen, but hadn’t seen if she had hit her head. I remembered the story my Neurologist told me of families who have just assumed a seizure was simply a symptom of their epilepsy…instead of the normally tell tale signs of meningitis.
Because the seizures just weren’t stopping, we ordered a CT Scan just to be sure we weren’t assuming it was her epilepsy and miss something as big as a brain bleed. I stood behind leaded glass when Andy looked up at me and mouthed “She’s seizing again.”
My heart sank. It wasn’t stopping.
WHY WASN’T IT STOPPING????!!!!
The CT Scan came back normal (which I figured, but everything was so weird we had to check).
Three hours of seizing off and on later, and the emergency doctor wanted us transferred to a larger children’s hospital with a Pediatric Intensive Care Unit. He literally could not give her more medication at this point. He had maxed out what she could have, and if he gave her more, not only would it be downright dangerous…he didn’t have the resources to save her if it went south. It was about 2:30 a.m. at this point. Andy rushed home to get me an overnight bag with some clothes, a toothbrush, and some deodorant.
I sat next to her. Terror creeping into my heart. This wasn’t “just a seizure”. This wasn’t like the last few times. This wasn’t we had grown to be accustomed to. She was still seizing off and on.
You’re not supposed to seize for three hours. It’s not okay.
And then her heart rate spiked to 207 (it shouldn’t be over 140)…and her chest started heaving in and out…her little tummy sinking unnaturally low into her body. When I alerted the ER nurse, I watched her face turn to horror and she sprinted out of the room.
Jill was going into respiratory distress.
The sheer volume of meds were causing her little body to shut down.
And this is when my cool as a cucumber attitude vanished. And so did the calm demeanor of the entire ER ward. Suddenly, there was a team of about 10 people swarmed around us. Doctors, nurses, you name it, were running…yelling…and had a look of concern on their faces that I have never seen on a medical professional. My trembling fingers texted Andy to come back NOW. The nurse handed me a pen to sign the transport papers…with a visibly shaking hand. I kept talking to my girl. Stroking her hair as an army of people amassed with all the equipment to do an emergency intubation. At one point, I stepped into the hallway and watched through the window.
And for the first time in my life, I prayed that God would not take my sweet girl that night.
This was serious. This was life and death. This wasn’t anything close to routine.
And I prayed the most desperate prayers of my life. “Dear Lord, please let her stay with us longer. Please don’t take her home quite yet. Please heal her. But if you do, please don’t let it crush our family. Please let us turn to you instead of away from you. You are good. All the time. No matter what happens. But please, I beg you to let us see those big blue eyes for a little longer.”
I walked back in the room and went back to talking to her. Telling her I was right there. That she was so brave. That I loved her so much. That I missed her.
As someone with an intubation tube came closer to her mouth, her breathing slowed. Her heartrate came down. She fluttered her eyes.
“Wait. I think she stopped! She’s responding to me!” I yelled.
They all looked at me like I had 7 heads. To them, she was completely out of it. Unresponsive. Certainly unconscious but for the open eyes. But my Mommy heart could see the subtlest of difference. When I spoke to her, the edges of her eyes crinkled just the most microscopic bit. Her eyes, while seemingly frozen in place and unable to track, glittered when I smiled at her. Three different people came to see what I was talking about and they all thought I was insane.
I insisted. “I know she looks terrible, but I’m telling you…someone’s home. She can hear me. See? Look at her heartrate!”
The lead doctor furrowed his brow. Looked at her now normal monitor readings. Held his hand out to stop the intubation team. “Stop. Mom’s know. Hold on. I’m going to try something crazy. Mom…can you pick her up and just hold her? Keep talking to her.”
And so I did. I stroked the blonde silk atop her head. I rubbed her sweet milky skin. I inhaled her scent. I took note of her warmth. I didn’t know what was going to happen in the coming hours, but I was going to treasure this moment. God was still good. No matter what. I just kept repeating that over and over. It became my mantra.
The longer I held her, the better she got.
Now, please realize that by “better” I don’t mean she perked right up and started giggling. But she was certainly no longer so close to the unthinkable.
It was as if the entire room let out one big breath at the same time.
We were still transferred via a critical care ambulance at 3:00 in the morning. This isn’t just a regular ambulance with a paramedic…but an actual Critical Care Nurse is in the back. Serious stuff. But we were transferred with no intubation, which was a good sign. She was doing okay. Out of it, and mostly unresponsive, but okay. (Funny how quickly definitions change.)
We pulled up to the children’s hospital and were given a sterile, private room where I had to recount the night’s events. For a minute, I almost had an out of body experience. I heard words jumble out of my mouth that were unintelligible to the average person. Hypoxic Ischemic encephalopathy. Coreoathetoid Cerebral Palsy. Likely Ataxic. Postictal. Early onset epilepsy. MRI shows grey matter consistent with diagnosis. On and on and on. And it shocked me. To hear my voice and all those crazy syllables jumble out with no effort.
But God is incredible.
One of the nurses has an 8 year old with a seizure disorder and although I was BEYOND exhausted and it was 5:00 a.m. by now, we exchanged stories. For the first time in my life, I found someone who got it. Who knew exactly what I was going through. She rattled off medical terms and complicated medication names…and she was speaking my language. As weird as it may sound, it was a balm to my tired soul. At 5 in the morning. On no sleep. 7 months pregnant.
But my girl was deeply sleeping in the bed next to me. And she wasn’t seizing. And her vitals were normal. And life was so brilliantly beautiful.
I was able to catch about an hour of sleep before Jill woke up at 6:30. Groggy. Floppy. A shadow of herself. But still Jilly.
Jilly Bean on the mend.
Her seizing never returned. She slowly gained some strength. I watched from my chair bed as a group of 15 PICU staff did the rounds and the head doctor told the story of how my girl came to this room. And I realized that I hadn’t overreacted. It was for real. Hidden among words uncommon in the English language, I heard the severity of what happened just hours before.
But she was here. I was here. God is good. No matter what.
We hung out until about 4:00 in the afternoon.
We got home and I hit my bed and slept. And slept. And slept.
Why was it so bad this time? I don’t know. A call to our regular neurologist today will likely be long and have lots of notes.
But for now, I’m just happy to be home as a family.
Epilepsy sucks.
But God is good. Always.
No matter what.
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Wow. I don’t know that I’ve ever had such a strong emotional reaction to a blog post before. I was scared for you. I was crying for you. What a terrifying night. Your prayer to the Lord – heartbreaking. And real. I can imagine how hard this was to type out, let alone live through. Thank you for sharing this with us. I’m sure one day, Jill will thank you too. As serious as this was and as tragic as it could’ve been, this is a beautifully written story. In the midst of the scariest moments, God was working. And you saw it. Beautiful.
Thank you Lord for protecting Jill! Thank You for keeping Jeanette and Andy calm when they needed to be and for making Jeanette see the response in Jill in those hardest moments. Thank You for “mother’s intuition”. Please give the doctors wisdom to figure out why this time was different and to know what needs to be done to keep it from happening again. Thank You, Lord, for Your goodness.
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Wow, my heart if heavy right now. But, like you said, God is good and watched over your family that night. I will continue to pray for you and Jill. I am sure it was hard to write that blog and relive it but I thank you for sharing the long version with us.
God is good! All the time! Tears streaming. Thanks for sharing.
-Jen
wow! so, so thankful you have a good end to this scary story! my daughter has CP and we were told she could have a seizure at any time… she has never had one yet, but with all her abnormal brain activity it is very likely. scary stuff! thanks for sharing your story. God bless you!
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wow – what an amazing story. crying tears – how scarey. praying for your family…. and praising god, too.
Wow. I just don’t have the words to say how heavy my heart was reading this. God IS good ALL the time, so glad she is feeling better. I will pray for your family.
Thank you for sharing. Though I am not a momma yet, posts like this encourage me and I know I will remember that one time I almost cried reading a blog, remembering that one momma who believed and prayed, knowing God was good no matter what.
I completely understand the argument of her privacy vs. ‘our’ story. I get that and choose to share our story also. I’m so glad you chose to share too. Your strength strengthens us…others. Your prayers to God remind us of who is in charge. I cried through this post. For many different reasons. I don’t have to explain them to you. You know. I am so sorry that this is your story right now. I was explaining to Dave that night of your IG pic how serious her diagnosis is and how scary it must be at times. Sometimes I smile up to Heaven and utter…’how much more do you really think I can handle!’ Keep doing what you are doing. You and Andy are special parents. You have a special family. God knew exactly what HE was doing when he placed you all together. I’m so happy Jill has recovered and that you, through prayer, could see her glimmer in her eyes. I just want you to know we care and included you in our prayers that scary night. Love to you all.
I’m sitting here crying for you, because that is just too scary. Gosh… I can only imagine the terror. I remember when Bella began hemmoraging after one of her surgeries and I was so deathly afraid. I can only imagine your terror. I’m so thankful that God saved Jill. Please rest and get some good snuggles in with that sweetheart of yours.
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I am SO glad she came out of it okay. I am so sorry you have to deal with all of this but you are truly courageous and a wonderful mama. It is amazing how a mother can know when the tide turns by something so simple as a spark in the eyeys. Amazing.
Tears. Prayers. The fear that went through me reading this post….I just don’t know how you guys get through this stuff. You have such an amazing faith and strength. I’m glad you are home and she is okay – you must be simply exhausted, emotionally and physically. I don’t even know what else to say about all of this….praying for you all!
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You are a warrior mamma! You are my hero and your prayer! I envy your faith and your willingness to outright ask Him for what you need. This made me cry but it also inspired me to have a bigger faith than what I know. I’m so glad that she is ok, and on the mend. I hope your drs can give you more information on the hows and whys. Until then, I hope you get some rest yourself… You are growing a human by the way…
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Aw man that’s a hard weekend. Know that I’ve been praying for you guys. In college my roommate had a seizure disorder (not epilepsy and they really didn’t know much about it) man those nights when I’d come home from class and she’d be post seizure and we’d have to go to the ER each time (dorm rules). My roommate’s mom had just passed away that year and I can see how much it could have helped if she’d been there. I’m glad Jill has you as a mom to care for her!
On a light note..thanks for making me bawl! ;) But on a serious one, wow..is all that I can say. You & Andy are truly amazing parents, its awesome to see how God is using you. I’m sure that you could think of some easier ways ;) it just was so amazing to read your prayer and realize how DAILY I take so much for granted. Thank you for sharing, while I can totally understand your apprehension.
Praying that you are all getting rest! And yes GOD IS GOOD!!
Denissa
xo
Thank you for sharing. I can’t imagine what you must have been going through. My eyes were tearing up as I read this and I don’t even know you besides through your blog. But I’ve found that you can really get to know people this way and I commend your strength and your faith during this crisis your family went through. My prayers are with you and little Jilly.
Praise the Lord. He is so good. Thank you for sharing your heart so beautifully.
so glad to hear jill is doing better. how scared you must have been.
thank you for sharing your story, her story, with the rest of us.
i will continue to keep you guys in my prayers.
Jeanette – thank you for your courage and strength to type your story out, time and time again. Thank you for being so transparent with your readers, whom you don’t know and don’t have to trust with your private family information – but you choose to anyway. Your stories, your strength as a mom, your love as a family – it blesses me every time. I am always so moved when you write and share your heart. I will be praying for sweet Jilly and your family. God IS good. I’m so so glad that you can remember that, even in your darkest night.
Much love to you and your family,
Kayla
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Thank you for sharing your story. I can’t imagine. My oldest had a complex febrile seizure at 2 years old and it was the scariest thing I have ever been through. 45 minutes of sheer terror. I can relate to hearing medical terms and whatnot come out of your mouth and not even knowing how you can be speaking. God bless you and your sweet family.
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Oh, I cried and cried about this. I am praying for Jill and your family. You are right, God is good. He is on the throne and knows you and Jill more than any doctor does. I will continue to pray for you!
Verna Lantz´s last blog post ..Friday Smiles
My heart pains for you for your sweet baby girl, I don’t know what words to say but I do know that I am so very sorry that you have I endure this, I cannot even imagine. Seeing your daughter your baby in such horrid pain and having to plead with god not to take her home, you are strong beyond words and I Thankyou for sharing your story and I will pray for your sweet girl and for your sweet family . God bless.
Wow, that was a read. Such a roller coaster I can’t even think of what it must have been like for you in the moment. Thank you for sharing it. Thank you for sharing your never ending faith. Thank you for reminding us on how to do that. I am so thankful for the ending of this story. You amaze me! God is good and with his strength, we can do anything.
You don’t know…me…but I also have Epilepsy. It does suck. Your post made me cry and cry and cry. How very scary for you and your hubby. Your daughter is beautiful and precious, I am so glad the doctor listened to you….I’m glad Jill is home…when you are at your lowest…God always has you…and this post is evident of that. Thank you for sharing. <3
Tracy
Dear Life From a mom of Boys
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It’s weird how you can never meet someone, but feel like you know them. After following your blog for a yr and a half to 2 years, I feel like I know you and your little family. Reading that post almost quite literally broke my heart. It felt like a close friend was telling me a story of what happened to one of their littles. I am so truly sorry Jeanette that not just you and your family, but that Jill had to go through that. I am so thankful she is ok. And you are absolutely right, God is good all the time. All the time, God is good.
i couldn’t agree more – God is good all the time no matter what – even in sucky situations!
glad you are all home and Jill in on the mend!
blessings to you!
xoTiffany
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Wow. Your faith is amazing. It speaks volumes to the woman that you are. I am due with my first daughter (being induced tomorrow actually) and reading your words brought real tears to my eyes. I cannot imagine the feeling you experienced with Jill. You are so right. God is good. Always.
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Oh man. Tears- tears for how scary that must have been for you and tears for your honest and amazing prayers. Your sweet mama’s heart. I will be praying for you guys and little jilly as she continues to recover.
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Ive always admired you,but After reading this your much more than incredible! I couldnt even read this post without crying!:( i am so sorry your family is going through this. God is good! Jilly is so beautiful and strong. you guys are in my prayers. Your such an amazing mommy. xoxo
i can imagine nothing worse than being helpless to stop our child’s pain-only wishing we could take it from them and suffer on their behalf.
Your story is a testimony of God at work in your life. Praising God that you are letting Him shine in you and through you in this.
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Wiping tears, sighing relief and telling you I love you. Our God saves.
I stumbled across your blog a few days ago and became a follower… Your faith in the goodness of our God is beautiful and inspiring. Thank you so much for sharing this story with us. I’m keeping your family in my prayers!
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Wow. I don’t know what to say. But my thoughts are with you all, how horrific. I had tears reading that. I am so happy that Jilly is ok. Love and thoughts to you all, take care of yourselves.
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Tears this morning as I read this post. Oh how I love sweet Jilly, and your dear family. And I really wish I still lived nearby. God is so faithful and present–but oh my goodness, sometimes life just bites. Love each and every one of you Gibsons!!!
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I’m not sure what to say, other than wow.
I had no idea it was this bad. You seemed so calm through IG. Crazyness. I’m sorry you had to go through that, your faith is amazing.
I cried the whole way through this story. How utterly terrifying for you all. Such incredible strength you have.
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You are such a strong Mama! I pray that someday I’ll have the kind of faith and trust in the Lors that you have! Soo scary to see your baby in such distress! You are an amazing example. Thank you for sharing!
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wow. epilepsy does suck. most people don’t understand that – they think, “ahhh they’ll grow out of it.” if they only knew. thanks for sharing your story. i’m praying for your family and little Jill. peace be yours.
Laurie
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jeannett, i was reading today and read this line and instantly thought of you and your sweet, beautiful jill:
“He comes with us to the hard places.”
He sure does, doesn’t He? jill is lucky to have you. and Him.
and i am so thankful you shared this story with me.
wishing i could give you and your girlie a big hug…
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Jeannett,
I never comment on blogs, but feel so compelled to do so after hearing your story. My heart is sending up prayers for Jilly right now, prayers for strength and healing, and for you as well. Thank you for your honesty and transparency. As a mama, your story and experience is one that is so heart-wrenchingly scary and terrifying, but such a testimony that you were able to look to our Creator at such a time as this. May you be covered in prayer and wrapped up in the Lord’s hands! Thank you for sharing this story.
I sat in my cubicle and cried as I read this. So sad that Jilly has to go through this. But the very last picture made me smile. What a little trooper she is! So relieved to hear that she is back at home!
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oh man. So sad to hear about Jilly’s troubles. I love that you stayed with her the whole time. Her battle is your battle. Way to go for being an awesome mom. I love that the Dr trusted you. We prayed for Jilly and your family today.
You are amazing. Your family is amazing. Jill is amazing. What an inspiration. Thank you for sharing your incredible story and journey. My heart goes out to you.
Jeanette, I am lifting you up in prayer tonight. May God give you rest and peace.
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Praying for you and Andy to continue your incredible strength. Your writing is so moving and vivid. I’m glad you shared…made me kiss the boy one more time before bed. Sending love your way.
Thanks be to God for the wonderful ending to this story!
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Holy moly! Jilly definitely better be recovering after all the drama. :o
And *you* better be recovering too momma.
I haven’t heard the term “Hypoxic Ischemic encephalopathy” for a while. That’s the cause of death listed on Evan’s death certificate. :(
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Jeannett, that got my heart racing, just reading about the events of that night. It’s always later when you’re talking about it with someone that it hits you, just how much you’ve been through and continue to go through.
I can’t believe that you were able to take photos!
Hope that you’re all having a restful week xoxo
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Boy this made me cry. My father has epilepsy and reading anything about epilepsy always makes me think about him and how I react when he has a seizure.
I hope Jill is continuing to get better (I couldn’t actually get to the end of the post). Thinking of you all.
Pru
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All I can muster to say right now is “Praise God.” What an incredible, gracious God he is.
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Oh my gosh. What a terrifying night. I was crying reading this post, and I don’t think it’s just the pregnancy hormones talking. I am so glad that your baby is okay! I hope that if I’m ever faced with a situation like that I can also chant “God is good. No matter what.”
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