Under the Weather

Jacob has a fever, and I hate that the first thing I think of is seizures...

It's been a long time since we've dealt with febrile seizures around here, and I praise the Lord that Lily will very soon be six and officially too old to get any more. But I can't say the same for 4 1/2 yr old Jacob. He hasn't had a fever in forever (as opposed to Samantha who seemingly ALWAYS has a fever, but has thankfully never - so far - seized), and I'm hoping it passes quickly. I'm feeling a little OFF myself, which I hope turns out to be nothing, because sick little boy + sick Mama + nursing baby who wakes up at night does not = a happy household...

So prayers for our little household are appreciated.

(Jacob on a field trip earlier today...this should have been my first clue.)

(His total breakdown in the car on the way home should have been my second clue. NOT FUN.)

In other news, Lily's eczema is currently in a state of withdrawal - not sure how to better describe a condition that, at least in her case, goes through periods of varying intensity, but never seems to completely go away. At least not yet! I know the current healing is in response mainly to all the prayers for her legs from my recent Facebook post - and partially to the new cream her sweet, concerned daddy bought her ;)

Continued prayers for COMPLETE healing appreciated - you know how much more rashes and the like itch when they are on their way out!

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Spoke Too Soon

Yesterday, Jacob had another seizure.

It was exactly one year and two days since the first two. He woke up crabby (NOT NORMAL), and was hot to the touch but had no fever. Strange. So I sent him to school, where he remained hot and crabby but still had no fever. Strange. Eventually they called me a second time and said he just wouldn't stop crying (NOT NORMAL), and I said I'd come and get him. I brought him home and he immediately fell asleep on the couch. He woke up screaming and couldn't be consoled...probably didn't help that I took his temperature again. This time, it was 101.2 - first fever of the day. We gave him Tylenol, and not 10 minutes later, I heard a shout from the couch.

The second I heard that sound, I knew what was happening. My heart sank, and I ran to the living room. I saw his body stiffen, his head back, his body shake. He shouted/gasped out loud once more before I got to him. I told my mom in the kitchen she had to leave the house - she happened to be here for his first seizure a year ago, and it was too much for her, so I knew I could not have her nearby. She willingly ran out of the house, and I scooped my little boy off the couch and laid him flat on the floor.

Within a moment, my dad was there, asking what he could do. I told him to call 9-11, but when he scrambled to find a phone, I pulled mine out of my pocket and dialed 9-11 myself. I told my dad (still looking for a job) to go look at the time - to the second - and to not forget what it said. I stroked Jacob's hair, prayed out loud so he could hear, whispered to him, stroked his hair some more. I turned his head to the side and looked in his mouth to make sure his tongue was where it belonged. I didn't like the color of his face or his lips, but though his breathing was erratic and in gulps, I knew he was still breathing as he should.

When the 9-11 operator asked me his location, I said, "On the floor at home." Haha, like she knew where that was. I told her his actual location, told her this was not his first seizure, and kept her abreast of everything that was happening. At one point, I called to my dad (keeping an eye on the time out of the room) that his seizure had ended, once the jerking stopped, but then I realized that wasn't true - his breathing was still not normal, his face was still the wrong color, his body was still not his own. He foamed at the mouth, and finally a few seconds later, he limped to the side. It was over.

The 9-11 operator asked me how long it lasted, and I said, "Less than a minute?" My dad called from the kitchen that it was closer to two. I continued stroking his hair, whispering in his ear, calmly answering the 9-11 operator's questions. I told her he was breathing normally and was in the regular post-seizure sleep. She said that paramedics would be there any minute and to call back if I needed anything else. It was the first time a 9-11 operator had ever hung up before the paramedics had arrived.

I told my dad to open the front door so we were ready. I pulled off Jacob's damp underwear and covered his bottom half with a blanket for some dignity. His top half was still burning up.

The paramedics walked in and I actually recognized one or two of them from their two visits last year (once for Lily, once for Jacob). They sat on the couch and looked down at Jacob, curled on his side on the floor. We chit-chatted about their seemingly frequent visits, about how everything looked as it should. Though his breathing was good, they turned on an oxygen tank and placed the mask near his face. Good thing - he would have freaked out if he woke up and found that thing strapped to him, after the asthma diagnosis and nebulizer treatment at the pediatrician's a couple weeks ago (whole other story). I had my dad get an ice pack from the freezer and they put it on the back of his neck or on his back directly to help cool him down. He seemed to respond to the cold, though he still wasn't actually "awake".

He eventually came out of it, and became aware of his surroundings again. I'm not sure how long he was out - 10 minutes? His eyes opened and he started sobbing and although I kept telling him how exciting it was that the police man and the "ambulance guys" came to visit, he did not find it exciting in the least. He cried and cried, and I put his head in my lap - stroked his hair some more. He freaked out when Lily kept trying to give him a sippy cup of water to drink.

The paramedics asked me which hospital I wanted to take him to. "I'm not taking him to the hospital," I shook my head matter-of-factly. "I'll call his pediatrician and we'll take him there if they need us to." No one argued. No one suggested otherwise. They all nodded like that was what their opinion, too. It's funny how different things are after they've happened once or twice. You have authority. You have clarity. You have peace.

That's what really struck me through this whole situation: I was super calm. I took action. Even though it had been a year since I last had to deal with this, I instinctively knew what to do, and that everything was OK. I didn't hesitate. I stayed focused. I called out orders without please or thank-you and made no apologies. There could be no other explanation than the Lord was with me, holding my hand as I held on to my little boy.



(Back to sleep on the couch, after the paramedics left.)

Jacob: One Year Seizure-Free

Yesterday marked one year since Jacob's two seizures.



(above, saying "cheeeeeeese"...)



Here's to another year (and a lifetime!) seizure-free, silly boy!







Related:
Jacob's Seizure
EMT and ER Photos

Lily: One Year Seizure-Free

Last week marked one year since Lily's seizure. We're so thankful and so blessed that it has not happened again, and are happy she's quickly approaching age 5 and even age 6, when febrile seizures will officially be a thing of the past. This is definitely one of the only times when I want my kid to grow up faster.



(Here's how she spent her one-year anniversary last Friday with Jacob and Jillian, a.k.a. the 3 little zombies watching Winnie the Pooh.)

I just realized that last week also marked the would-be 5th birthday of the first baby that we miscarried - I was due March 5th, 2006. (The 2nd miscarried baby was due January, 2010 - last year). Every once in a while, I wonder how different our lives would be with that first baby, what kind of parents we'd be if we'd had a different first child than Lily.

FYI, in this scenario, I never picture Lily replaced, just born SECOND, which is extremely unlikely since Lily was conceived just a couple weeks after that first baby was due, but it's not impossible!

It's strange, the things your mind thinks of when you're lying awake in bed sometimes, isn't it?? My goodness, how noisy and funny and chaotic our household would be with all 5 kids running around! They'd be 5, 4, 2, 1, and 9 months. Can you imagine?!

Phew - and I thought I was busy now ;)

Anyway, here's to the next seizure-free year!

Related:
All seizure-related posts
All posts about miscarriage #2
(Should I publish the things I wrote about miscarriage #1? Would anyone want to read them?)

EMT and ER Photos

Note: These pics were added 02/10/11 - always meant to add them right after the fact last year, but I guess I just didn't want to look at them...

At home, a couple minutes after he came out of the first seizure:



Jake's seizure had stopped before the EMTs arrived, but he wasn't lucid until after they strapped all that stuff onto him, so you can imagine his confusion and fear once he really "woke up" on the floor amidst the hubbub.

In the ER later that night, after his second seizure:



Every doctor and nurse to come into the room would comment on his cute Spider-Man shirt, and ask him how he liked Spider-Man - and every time, Jacob would freak out, because he didn't know who that was or what his shirt said, and just heard everyone talking about spiders all night!

The nurses were great and gave him a matchbox car to race around his bed - sound effects included (note the open mouth):



After his one incredibly awful, scary test that I don't even want to mention, the nurses gave him this stuffed horse for being so brave:



It's been in his crib at home every night since. Not as a reminder of what happened, but as a reminder of how grateful we are it hasn't happened again.

Eventually, he got his second wind, and it was jump-on-the-bed time for this happy little stinker:



But then he was sleepy, and settled in...



Sweet dreams, baby boy:

Another Seizure

This time it was Jacob.

Twice.

Yesterday was an awful day. Jacob woke up feeling a little warm and acting a little crabby. Nothing to get me worried. At noon, I cuddled him up, and a few minutes later, he started seizing.

In my arms.

As I laid him on the ground, I realized he was burning up. How did he get so hot so quickly? He shook - eyes rolled up to the side - for what felt like a lifetime, but was actually just a couple minutes. Memories of Lily's seizure came flooding back. Are you kidding me? Didn't we just go through this? Didn't this JUST HAPPEN?

The paramedics came and all the tests they ran - sugar, heart rate, etc. - came back normal. We decided not to send him to the ER because I knew from experience that they wouldn't do anything for him we couldn't do ourselves in the comfort of our own home. We gave him some Motrin and eventually put him to bed. He woke up happy and full of energy, jumping around and laughing in his crib, like the whole morning never happened. This was hours after the Motrin had worn off, and he had no more fever.

After Ryan came home, we took the family out to run some errands. As we sat in the Wal-Mart parking lot, Ryan glanced at Jacob and saw he we having another seizure. In his car seat. Quiet as can be. What would have happened if we hadn't even noticed?

We took him out of the car and laid him on the ground until it was over. He looked at Ryan, who asked him, "Are you OK buddy?" and Jacob nodded. "Uh-huh." My heart melted. There was my little boy again.

We called his pediatrician again (who saw him earlier in the day after the first seizure), and she told us since he had two within 24-hours, we had to take him to the ER. We got there around 9 p.m. and were immediately taken to an exam room, past everyone waiting. Guess they thought it was pretty serious, too.

After they ran all their tests (which I don't even want to mention...too upsetting), everything came back normal, and we were cleared to go home around midnight. We couldn't decide if it was a good thing or a bad thing that they couldn't find out what was wrong with him or what caused the fever - sometimes it's nicer knowing where to put the Band-Aid, you know?

We got home close to 1 a.m.. I took a pillow and blanket into Jacob's room and settled in for the night on seizure watch - no way was I leaving him alone. So I slept "with one eye open" which is really not sleeping at all. Then Samantha was ready to eat (and boy was I ready to feed her!). Then Lily woke up crying. Then I was back on seizure watch until Lily started crying again. And then Samantha was ready to eat again. And so it continued until 6:30 a.m. when Jacob woke up for the day, happy as a clam and raring to go.

Needless to say, I was not ready to get up. My eyes were burning. My whole body and brain were exhausted. Fortunately, we had no more incidents today and he never had another fever (not sure how much the 'round the clock Motrin/Tylenol is to thank for that), and now he's back to bed for the night - butt up in the air and head smooshed into his bumpers, just how he likes it.

I can't help wondering when - not if - this will happen to Samantha? How old will she be before her first seizure? How long before Lily or Jake have another? Will we be on seizure watch for each of them every time they feel slightly warm, until they are 5 or 6 and grow out of febrile seizures? Will we take medicine with us everywhere we go, like parents of kids allergic to bees who always have to have an epi pen with them, so we can start cooling down a fever the moment we think it's coming?

I took lots of pictures. Crazy, I know. Will post when I get them downloaded.

Ambulance and ER Photos

In the ambulance...still spacey:



Saying, "Cheesecake!" for the camera while watching Micky and Minnie cartoons in her ER bed:



Little girl, big bed:



It was encouraging that she wanted to steal the breakfast our nurse Laura brought me:







Trying to recreate one of Jacob's ER photos:





After returning home from the ER:



Encouraging to see:

A Seizure Update

I have been on 24-hour seizure patrol since Wednesday morning. Lily is still running a fever and has other flu-like symptoms, but at her follow-up visit yesterday, her pediatrician said he really thinks it's just a virus that needs time to pass, and if her fever still has not broken by Saturday, they want to see her again. (It started Monday night - such a long time for such a little girl to be SO HOT unless constantly medicated...and you know we're not fans of constantly medicating. But I guess the alternative is fear of another seizure should her fever spike or stay too high, so we'll take the lesser of two evils.)

I have not really slept much. The night of her seizure, I slept in her room. And SLEPT is entirely inaccurate since I mostly just laid there examining every little sound and movement and change in breathing she made. Yesterday morning around 8 a.m., I was really paranoid it was going to happen again. I made sure the pattern of the morning was completely different than the day before, and it wasn't until my neighbor arrived to watch Jacob while I took Lily to the pediatrician that I felt myself calm down again (though I made her talk to me the whole car ride there since I couldn't see her). Every time I left the room for a few minutes or fixed lunch or went to the bathroom (31 weeks pregnant, remember), I would call, "Hey, Lil' - how you doin'?" and any kind of sound from her would count as a positive response.

It wasn't until yesterday evening when Ryan got home that I started to relax a bit - to realize that it had been a few minutes since I had looked at her and she was still fine - and last night, I slept in our room with her monitor turned on super loud. (SO wishing we had that video monitor on our baby registry right about now!) I would have actually had a decent night's sleep if she hadn't woken up so many times. So now my eyes are burning and my brain is tired and I'm physically and emotionally spent. I can't wait until her fever breaks so I can really turn off my brain and take a super long nap. And maybe do some grocery shopping. It would be really nice to have some milk and bread and ice cream...you know, the essentials.

(I totally ate everything in site after we got home from the ER...turns out I'm a comfort food eater.)

Right now, she's sitting on the couch with Jacob watching Blues Clues, and the baby in my belly is doing somersaults. I need to take Lily's temperature and give her some medicine. She's generally lethargic and mopey until the medicine kicks in. Then maybe I'll see if I can sneak in a nap while they stare at the TV for a little longer.

A Seizure

Today, Lily had a seizure. Here's the e-mail I sent to family earlier this afternoon:

>>
just want to let you know what happened this morning. let me start off by saying that everyone is absolutely fine right now. keep remembering that as you read...

lily's had a fever (mostly 102 range) the last day and a half. this morning, she still had the fever when she woke up. i gave her some medicine and brought her downstairs. she was standing in the living room, one hand on the couch, drinking milk with the other, when she seemed to trip or spasm a little, cried out, and suddenly dropped her cup and fell down on the carpet. i didn't think much of it since she's been pretty clumsy with the fever the last few days. i came over to help her get up, and that's when she started shaking on the floor. her eyes rolled to the side and all four limbs jerked slightly and the seizure lasted no more than a minute, though at the time i thought it was never, ever going to end. i had her turned on her side to make sure she didn't swallow her tongue or in case she threw up. by the end, she had frothed a little at the mouth.

as soon as it stopped, she started crying with her eyes closed. classic lily cry. she looked like she wanted to open her eyes, but didn't have the energy. i kept telling her to look at me, and she flicked her eyes open once or twice, but it was just too much effort. she laid there with her eyes closed, clutching her blanket and twining her fingers through it...which to me was the best sight in the world - that was so LILY of her.

the second it was over, i called 911 - or maybe even before it was over, i don't know. the police arrived after just a couple minutes, and she was lying there on the floor in a sleep-like state when they came in. they spoke loudly when they arrived and lily's eyes flickered open to see what in the world was making that noise. i asked if they could not talk SO loudly, but they said they had to, to see how she responded, and then i felt bad, "oh, ok, of course! i'm sorry." she definitely realized they were there and then made sure MAMA was there, then closed her eyes again. she was definitely responsive, just acting super SLEEPY. they said that was totally normal after a seizure - that the body is recovering.

i asked one of the policemen if he could go next door and get my neighbor to watch jacob. he came back and asked if he could bring jacob over there b/c he had woken her up and she had to get dressed and everything. of course, whatever you want!! so jacob (who hugged each of the policemen's legs when they first arrived - our welcoming committee!) happily went off to barbara's house like it was this big adventure, chattering and saying, "bar-bra! bar-bra!" as he went.

lily laid there on her side, eyes closed, in a still, sleep-like state, breathing heavily and loudly, until the ambulance came. somewhere in there, i went upstairs to change out of my pajama pants and called ryan, who left work immediately to meet me at the ER. the EMT suggested i wrap her up in a blanket and carry her out to the ambulance, to which one of the police officers interjected, "CAN you carry her?" looking at my belly. i said that i definitely wanted to carry her, i just needed someone to pick her up off the floor and hand her to me. so they wrapped her up in one of our blankets - amidst her protesting, which was another good sign - and handed her to me. it was surreal, walking out of the house to the ambulance amidst snow flurries, with my baby girl wrapped up in my arms, resting atop my big belly.

i tried to make the ambulance ride sound exciting for her, but she was just freaking out that i was going to leave her. i assured her i was coming, too, that i wasn't going anywhere, and held her hand as they strapped her onto the bed with their special toddler harness. she was quiet but fearful and held on tight to my hand, with many a, "mama!" just to make sure. the ride there, i tried to get her to look at everything out the back window. i could tell she was interested, though still very still - only her eyes moving as i pointed things out. the ambulance driver noticed a big change in her responsiveness just from when we left the house to when he took her out into the ER, which was encouraging.

when we got to the hospital, she was again very afraid i would leave her. i held her hand all the way to her room in the ER. the nurses were very nice, especially lily's nurse laura. lily was a little freaked out by the finger cuff pulse thing (it had a light on the end of it, and the nurses told her it was a "princess light"), and especially by the blood pressure cuff on her arm ("a little hug!"). she didn't care when i took her temp rectally since we had already been doing it at home for a couple days. her fever wasn't too bad and everything else checked out normal.

soon, the doctor came in and explained different types of seizures to me...he said that this fever-related seizure she had (febrile) could happen to anyone and doesn't mean anything long-term. sometimes, it's the body's way of handling the fever. (ryan arrived some time in here.) they took a urine sample from lily (she peed into a pink bedpan i put on the potty for her - there was much lollipop bribery involved), and gave her some motrin and said just keep keeping her medicated until the fever passes. she has a follow-up appt with the pediatrician tomorrow morning.

i still can't believe this happened to our kid. it's the kind of thing you hear about happening to OTHER people's kids. i kept thinking about how this happened once to my brother when he was little and how it never happened again...that gave me some comfort. (i was only two, but i still remember standing outside waiting for the police to arrive.) it's amazing how many horrible thoughts can go through your head in that one brief minute while it's happening...things i don't even want to put into words here...

so anyway, she's home now and she's fine. i knew everything was really going to be ok when she started stealing jacob's toys and running away with them. ahhh she's back........

thanks for reading this long e-mail. i just wanted to let everyone know so you could pray for lily - and for her mama on vigilant seizure watch. not letting that girl outta my sight.
>>

She is still running a fever and has typical flu symptoms (tells us she's cold, has a cough, is going #3, is generally clingy/lethargic). Aunt Ilse, thank you THANK YOU for coming up today to spend the day with us after you found out what happened, even after I insisted that you didn't have to, because you could hear in my voice that I just did not want to be alone on seizure patrol. You're an excellent "2nd in Command" while my mom is away in Florida. (Hi, mom - please stop worrying!)

I'm exhausted. Mentally, physically. I'll be sleeping in Lily's room for a while...no other choice since I can't let her out of my sight. I'm sure I'll sleep with one eye open, and continue to monitor her every move for some time - at the very least, until her fever breaks. I'm still so scared. So unsure. The site of her on the floor...like that...I can't get it out of my head. I keep telling Ryan how blessed he is that he didn't have to see it, because I will never forget...