Shaken to the core

We spent last night in the emergency room (see sad, sad pic–>) after Maya had [what turned out to be] a febrile seizure, caused by a sudden spike in temperature.

It was the scariest two minutes of my life as she convulsed with her eyes rolling in the back of her head and clear fluid coming out of her mouth, her head limp like a rag doll but her little body shaking violently …I’m crying even as I type that.

For a moment there — and I shudder to even type this — if felt like it might be the end. It was that frightening and I can’t get the imagery out of my head.

I’m still trying to process what I witnessed my daughter experience and I think sharing it here might help.

I need to back up though to Thursday, when babyschool called around lunch-time to tell me Maya was not acting like herself, was clingy and whiny, and had a low-grade fever of 100.1. In our ten months of experience with her, these symptoms typically mean she has an ear infection. Internally, I groaned. I hate seeing her in discomfort–and that morning, she’d been the happiest baby ever. You’d never know something was amiss.

I knew this would be her sixth or seventh if it was the case (I’ve lost count) so we couldn’t wait til the next day to see her pediatrician. I made an appointment and the earliest they could see her was 5. So I brought her home and she slept all day and I just worked from home until her doctor’s appointment. There, they told us it was, indeed, another ear infection and recommended a new antibiotic in addition to continuing to give her Tylenol or Advil to bring the fever down.

All seemed fine. I work from home on Fridays, so I felt good knowing I would be there for her. She went to bed at 6:40 and woke at 9 (2 hours later than normal). She played for a little but by 10 was ready to sleep again. She slept til 11:55. Then stayed awake til 1 … and woke at 3:15. I fed her and changed her and because her fever was back, I gave her some Tylenol. She was asleep again by 4. She has never slept this much–not even as a brand new newborn — but I knew she wasn’t feeling well and figured the antibiotics just hadn’t kicked in yet.

I had just written this email to a friend about this new sense of being needed:  “Wish I was nursing right now b/c I think sometimes that’s the only soother .. .but eventually she fell back asleep (around 4). So this time she was only awake 45 min. Just glad it’s the wkd. b/c she needs her mama and I’m glad to be here with her, even if it puts a damper on the weekend. I have never felt so needed as I have right now (even moreso than when she was a newborn—then it didn’t matter who held her/who was close to her; I mean, it did, but now it’s a different need. It’s specific to mama, ya know?)”

Literally an hour after I hit send on that, it happened. And she needed me in the worst way.

She was still napping at 5:20 when Luis and his BFF (who is visiting) left to go meet our friends for dinner at one of our fave restaurants — I’d stayed behind so they could have some boy time and that way I could keep an eye on Maya.

At 5:22 — just two minutes after they left) , I went to check on her because I heard some chatter coming from her crib. Nothing out of the ordinary.  She was only half-looking up at me from the crib and didn’t seem like there was anything wrong (except for her being warmer than even before I’d given her the Tyleonol). But I didn’t have even a second to process that — as I was scooping her up, her arms were shaking like crazy … then it was like a scene in a movie: her eyes began rolling back in her head, her head went limp like a rag doll, clear fluid came out of her mouth, and her limbs were convulsing wildly.

I figured it was a seizure of some kind, but had no idea at the time it was related to her fever. I just held her and tried to calm her and ran to the living room for my phone. According to my phone records, I called Luis at 5:23 and told him “Something’s wrong with Maya. Seizure. Come home NOW.”

I don’t know how he got here as quickly as he did — but within a minute he and his BFF were here. We knew we could get to the hospital quicker than any ambulance could get here, so we just left. At this point, she wasn’t convulsing but was making these awful animal-like moaning sounds and though we made it in record time, it felt like an eternity and I couldn’t shake the image of her in so much distress and the fact that all I could do was hold her in my arms and wait for her to stop (with adults or children you’d lay them down  – but the doctors said I did the right thing keeping her in my arms).

In the ER, they took her temp (103!) and weighed her (18 lbs 4 oz — which means she’s gained 1.2 since her 9 mth – GO MAYA!) and hooked her little ankle up to a monitor. I was pretty hysterical but after I pieced together what had happened, the ear infection, low fever, sudden seizure and the nurse said it sounded like a febrile seizure–which is apparently quite common and caused when a baby’s fever suddenly spikes for some reason (usually infection-related).

She also said the younger a baby is when they have their first, the more prone they are to future febrile seizures and in fact are 30% more likely than the average baby to see a reoccurence. All we can do to mitigate them (and even that isn’t foolproof) is give her Tylenol or Advil at the onset of even a low fever … but there’s still no way to know if it will still happen. The fever doesn’t have to be high — it’s the RAPID SPIKE that causes these seizures. 😦

They wanted to do some other tests to rule out a UTI or pneumonia (because her chest was also rattling and really congested). So they put her in this teensy tiny yellow gown and did a baby cath — OMG, it was horrific for Maya … and also a chest X-ray which freaked the hell out of her. 😦 Poor kid was poked and prodded for hours.

The whole time, Luis and I just kept trying to stay positive and holding hands and taking turns squeezing her close to us — acknowledging time and time again how lucky we were that 1) Maya was going to be OK and in good hands and 2) that he and his BFF weren’t far when it happened and were able to be here like THAT. Obviously I would have called 911 if they hadn’t been close, but we needed each other in that moment … completely.

Her fever went down to 101.5 and she just snoozed in daddy’s arms as we waited for the test results, which all came back negative. She was congested for sure, but it was likely a bronchial something or other, not pneumonia. They said if she experiences another seizure we’d need to do a spinal (to rule out meningitis) but all the docs seemed sure it was “just” a febrile seizure.

We were finally released around 9:15 with the recommendation to alternate Motrin and Tylenol over a 24-hr period and to see her pediatrician in the morning.

We all slept erratically–no surprise there, with us panicking and checking on her constantly and Maya being uncomfortable all night. She woke at 12 and 4 for maybe 10 minutes each time til we could settle her back down. At 4, her fever was back up to 102.8,so we gave her Motrin. She woke at 6:45 lethargic but fever-free and then snoozed again til 8 on my chest (Zumba plans went out the door for sure!)

She still wasn’t smiling or babbling or even trying to move — but she did eat (she was a starvin’ Marvin!) and after she ate, she slowly became herself again — her color came back, she was cool, began chatting and crawling on the bed, banging her rings and toys together to make “music,” smiling … like herself.

We saw the pediatrician at 10 this morning who reassured us how normal these episodes are and also warned us that she could experience them again. Since her ear still looked infected (which it shouldn’t have, after two days on antibiotics) they gave her a shot of a different antibiotic. Since then, she’s been herself. Tired, indeed, but herself. We will need to go back Monday for another follow-up, but it seems like she is going to be OK.

Rationally, I know this. Yet I cannot shake the image of my daughter, so small and frail, flailing around like that — so clearly gripped by a seizure. It was gut-wrenching and heart-breaking and I hate that at that time, I was thinking, “Oh my G-d, please, don’t take her, don’t let this be it,” as I held her tight and all these uncomfortable thoughts flew around  my head.

The love a mother has for her child is simply indescribable. And while I wish she wouldn’t, I know she is going to trip, fall, hit her head as she gets more mobile. She could swallow something she shouldn’t, or a million other instances of things that could go wrong as she gets older.

But this? I was completely and utterly unprepared and caught off-guard for a seizure. There’s no finger sweep or Heimlich or Ace bandage or Band-Aid for a seizure.

Deep down, I know handled it exactly as I should have … But it didn’t stop me from feeling like I wasn’t doing enough. The weird thing is I felt like I wasn’t even part of what was happening–as though I was watching it happen to me from someone else’s vantage point, crazy as it sounds.

The fact that this could happen again at any time is VERY scary — and I know all parents experience fear but OMG this was just surreal. At least next time we’d have somewhat of an idea of what is happening and why, but still … it was nothing short of terrifying and I’m not exaggerating.

So I leave you with a happy pic of Maya tonight after dinner. 🙂 She was flapping and flailing–but this time, on her own accord and out of joy.

We will never forget what happened last night … but we got through it and hope to never go through this again.

I love you, baby. You are our shunshine. ALWAYS.

How about you? Have your children ever experienced a febrile seizure? How many did they have? When did they outgrow them?


21 thoughts on “Shaken to the core

  1. Oh Melissa, I am here crying for you. How terrifying an ordeal. What really hit me was that I would have thought and asked the same thing: please don’t take him (her). I’m so glad she’s okay, but I’m sorry that she (and you guys) might have to go through this again. I hope you guys defy the norm and never have to go through this again.

    Sending big hugs from NJ (including one from Nate to Maya).

  2. Oh Lissa, I can’t imagine how scary this has been for you guys. If it eases your mind at all, I suffered from febrile seizures as a baby, and they passed. I don’t know the details but I know my mom says that I just “grew out of them.” Hugs!

    1. Thanks, Lara! I hope this doesn’t sound weird but I am so glad to hear how many people have experienced them as babies themselves or their babies.So glad to know you were ok and grew out of them. I hope this was Maya’s one and only … but for now … just holding our breath!

  3. My son had a febrile seizure at 19 months old. When we got to the er his fever had spiked to 105.9(previous checks had shown it to be around 100). It turned out that he had roseola which the high spike with seizure is fairly common with. From that time on the minute he showed any sign of fever we started medication and still do even thoughhe has

    1. He has never had another and is now 7. I still flashback occasionally on finding him in his crib seizing. Needless to say I rearranged his room that week and moved him into a big boy bed within a month which helped push the picture out of my mind. I hope you never have to go thru that again!

    2. Hey Jen, she was diagnosed with roseola today!! (red splotches all over her neck and belly suddenly). We are doing the same thing — starting medication with the sign of a fever … just need to find out from the pediatrician how that works with teething–I don’t want her on a constant flow of Advil or Tylenol (b/c for some babies, teething incites fevers). Maya hasn’t actually begun officially teething yet so we don’t know how that will go. Glad your son is ok now but wow that must have been scary–105.9! And I thought her temp was high!

  4. I’m sorry you had to go through this. I can only imagine how frightening this would have been. I’m crying as I write this. I’m glad that she is ok. big hugs

  5. Oh geez, that is just horrible. Really a mothers nightmare. My son has never had a seizure (he’s nearly 3), but he did bite through his tongue at 10 months old. Its crazy how well composed you can be during an emergency. At first, we had thought he just bit his tongue really bad, but as we were applying ice sticks/freezer pops, we noticed how much his tongue looked like a lizard. Needless to say, we rushed to the hospital. I hate blood and let me tell you, there was a lot. But like I said, it’s crazy how you know what you need to do. While we hate going through it, we’ll probably have to go through more gut wrenching events. Just know that you held up fabulously and should be incredibly proud of yourself.

    1. Oh wow that has to be awful, Tawnya!! OMG!! Thanks … I’m still struggling to comprehend what happened. Maybe someday I’ll feel proud of how I handled it but for now … just hanging on!

  6. Oh man, Liss. This was tough to read but I am SO SO SO glad that everything turned out OK. Big hug to you and especially to Maya. xxxx

  7. You are amazing parents and Maya is a strong wee girl. I remember my sisters boy had a fever when he was roughly 1yr old, he was spaced out and went floppy seizing. She is a nurse and in hindsight she thought she would have been able to deal calmly with Kaleb going through this, but she was screaming and luckily we were there (Hubby is an EMT) and stayed calm for Kaleb and my sister. I admire you for being strong when inside you wouldve been uncontrollable. Im sending all ur love from NZ and hold her and each other tight. xx

  8. Thanks for the post. My 18th month hold had her first febrile seizure this evening. I was very glad to hear from the physician that I’m not an isolated case. Whew! You’re emotional experience is pretty much mine as well.

    1. I am so sorry to hear you experienced one of these traumatic experiences. I know they’re not rare, but we had never heard of them til it happened to Maya. Soo scary. Hope your little one is OK now!

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