A year ago today, my life changed. I know it changed the moment you came into our world but that moment you had your first seizure, it scared me. I feared losing you and I will never live my life the same because I know in a heartbeat that it could change. Since then, you've had one more seizure and gone through all the testing to confirm what's going on in that little head of yours. All of the tests have come back inconclusive which is good and frustrating at the same time. But great news is that you have not had another seizure since July 2013 and we're hoping and praying that this trend continues! We love you baby girl!
Here is the letter I wrote to you the day after the seizure. We love you!!!
To my baby,
This past weekend was
one of the scariest experiences of my life, and it also made me realize, life
is much shorter and can change in less than a blink of an eye.
Sunday morning (April
7, 2013), I woke up tired. I was so tired of everything that was going on
and had gone on so far this year. So many illnesses and overall
issues. It was starting to really wear
on me. You woke up, and it was clear, you had a cold. You didn’t
seem to have a fever, but your nose was running and your voice was sounding
very stuffed up. You had started showing
signs of a cold on Saturday so we were ready to keep you home for the day. We talked about what we were going to
accomplish for the day. Daddy had bought
a ton of ready to make cabinets for the garage and we were going to start
organizing the garage so that Daddy could start parking his car in there
too.
The morning started
out normal. Daddy got ready to go to
Mass while you and I played and cleaned (well, Mommy did the cleaning). We all sat down for breakfast and it was the
first time that I can remember you didn’t eat half of your breakfast or
milk. In fact, you pushed them aside and
told us you were all done. First time
you have done that. I just thought you
were learning how hungry you were. So we
played and played and played. You got a
large pink with orange polka dot ball from the Easter Bunny the week prior and
you just love to bounce that ball back and forth, and up and down the
stairs. The giggling we get from doing
this is absolutely priceless. We read
some books and then at 11am, you asked to watch a movie. Your absolute favorite is “Rio” (you
affectionately call it “The Birdies”) and you wanted to watch it but, truth be
told, mommy was getting a little tired of that movie so I convinced you to
watch Tangled (didn’t take much convincing).
There was more to clean but thank goodness, this morning, I decided to
sit and watch it with you.
I was watching
you. Not watching the movie, just
sitting there watching you. I don’t
remember what I was thinking but just knowing how much I love you. You were sitting on the floor (I was sitting
in the rocking chair) watching it when daddy got home from Mass, about 20 minutes
later (thank God he came home when he did).
He went up to change his clothes.
He wasn’t up there 5 minutes when all of our plans for the day
completely changed.
I remember looking at you and wondering what you were
doing. You were slowly, ever so slowly,
leaning over onto your left side as if you were going to lie down and watch the
movie. Truly that’s what I thought you
were doing. Then, it happened. You started to shake. For less than a millisecond I thought, “What
is she doing?” And just as quickly, I
realized, she’s having a seizure! I ran
over to you, picked you up and instantly started trying to do what I could to
get your attention. Your body was limp,
your eyes open but glazed over and looking down to the right. I bounced you, clapped my hands, snapped my
fingers, did everything I could to try and get to you to focus on me. “Evie!
Evie, look at Mommy! Look at
Mommy Evie!” Over and over and over
again.
Daddy came running down the stairs.
He knew from the tone of my voice that this wasn’t me yelling at you for
being in trouble. I was scared. So scared.
Not sure what to do. He started
to bounce you on his knee facing me as we were still trying to get you to
focus, to come to. You started to close
your eyes. You didn’t want to open
them. With each bounce your eyes would
open only for a second. We felt your
head and you were burning up. We called
911.
By this point, I was crying. The
911 operator couldn’t understand me. I
had to calm down a bit and thank goodness for her patience to help me. She asked for our address and almost
instantly after giving her the address, I heard the sirens. She kept me on the phone and I could hear her
talking to the EMS telling them there was an unresponsive 2 year old who may
have had a seizure. I ran to the front
door as I heard the sirens very close and sure enough, a cop had blocked our
street in front of our house and was running up the grass to our front door.
He came in and we ran to you.
Before I knew it, our Great Room was filled with several cops, firemen,
and EMS responders. They kept asking me
what happened. They kept asking you to
look at mommy, lightly pinching your skin on your arm to try and wake you. Daddy was still bouncing you on his knee as
you still wanted to have your eyes closed.
Then, you made one single cry.
You were back! Not fully but that
was the best sound! You continued to try
and close your eyes. The EMS responder
took your temperature. It only read out
100.3 which didn’t make sense as your face was HOT. Your hands and feet were turning purple and
were so cool to the touch. They asked me
if I had any Children’s Motrin or Tylenol in the house. I ran up the stairs, suddenly realizing I was
still in my PJ’s, grabbed them both, and went back downstairs. We gave you some Motrin in the syringe we had
and you clasped your lips around it. It was such a wonderful site for me to
see. You were able to swallow all but
about a quarter of it. Again, a
wonderful you were on your way back moment!
I went and filled your sippy with water and we tried to get you to drink
some water. You were coming to more and
more but you still weren’t completely yourself.
The responders tried to get an oxygen level on your feet but couldn’t so
put it on your finger and found your oxygen level to be very low. The officers suggested we take the EMS to the
ER at T___ ________.
At that moment, I realized again how “undressed” I was and with Daddy
holding you, ran upstairs, went to the bathroom, got dressed and threw my hair
up in a pony as quickly as I possibly could.
I grabbed you a pair of summer PJ’s, some undies, diapers, and your
blanket. Looking back, I actually
chuckle a bit when Daddy asked me if I wanted you in undies or a diaper. We put you in a diaper (even the responders
said, diaper). There was no way I was
making you potty train today.
Daddy put a diaper on you, and we wrapped you up in your blanket and
headed out to the Ambulance. We got in
there, I sat on the stretcher with you on my lap. You were fighting so hard to sleep when we
all wanted you to stay awake. The EMS
responder told me what they would have to do if you had another seizure on the
way to the hospital. I don’t remember
everything he said, just hoped and prayed we wouldn’t have to have that
(thinking back, he said something about potentially shocking you and it would
have to be through the rectum). He then
placed a blood pressure cuff around your arm, and it squeezed and you let out a
little cry. The fireman who had been helping
us in the house came over to the ambulance and told me everything was going to
be okay. He then told you to get better
and to come see him at the fire station.
He said bye and I looked at you and said “say bye bye” and you turned to
him and said “bye bye.” I think it
melted us all. Your little voice, so
little and so sweet, still not feeling 100%, but you were coming around!
Once in the ambulance, we got strapped in and took off. I remember sitting on the stretcher seeing our
neighbor’s house in the background (he used another driveway to turn around) as
though it was almost a surreal moment. I
sat there looking at Daddy’s car as he started following us to the ER. I never had really thought about it until
then, but it must be so frightening for people to get transported to the
hospital in that fashion. I realize I
was as secure as could be but that ride was so incredibly bumpy, nothing like
appreciating your own car as well appreciating that you weren’t in potential dire
consequences. As we pulled out onto __ and then through the
light at ______, I
hoped and prayed Daddy would be able to stay behind us and not have too much of
an issue. Funny enough (now that the ordeal
is over), Daddy got stuck at that very first light as it turned red while we
went through.
The ambulance person told us that we would get there in about 5 minutes
and called it in. You were fighting so
hard, trying to stay awake, but the events of the morning wiped you out. You would open your eyes with each bump but eventually,
you succumbed and passed out. The
ambulance person told me that it happens a lot when someone has a seizure. Your body has worked so hard that it is now
exhausted and results in the person “sleeping it off.”
As we headed to the hospital, it was again, surreal, to see all the
cars at the side of the road on ____, knowing they were pulled over because of the ambulance we
were in. The ambulance person told me
that for the most part, they keep the sirens off as they can disrupt and scare
the passengers. But once we hit that
traffic, he told me they were turning them on to get through that segment. It didn’t bother me one bit, it actually
wasn’t very noisy at all, much nosier in the car when one passes you. I was sitting there, holding you as you
slept, watching you and also watching the cars wondering what they thought of
the person that might be in there (I do this quite often when I see an
ambulance). The sirens went off again as
we turned onto _________ to get through the busy intersection. We
were almost there.
Once at the hospital, they asked me if I wanted a wheel chair. At first I declined but they both insisted as
it was a long walk and I was still holding onto you. We entered the ER, which was a ghost town as
it had been moved and renovated, hence them saying it would be a long walk. They had recently changed the layout of the
ER and the “new” ER was a bit of a walk away.
Once we got to the ER, they put us in a room right away. The nurses came in the room and immediately
started filling out the patient forms and checking on you. Once they were finished, and the doctor took
a look at you and ordered many tests, and then we sat there, waiting and watching
you. At this point, you had started to
look like your normal self. Color came
back to you and you wanted to play. We
waited for each test, and each test result.
All came back normal. They
checked everything they could. They
looked in your eyes, ears, nose, checked your oxygen levels and your temperature. We had been there for hours and poor Daddy
hadn’t had anything to eat, he was starving, so the nurse told him that he
could go, it would be a while before any further tests or results came in. The nurse then came in to get some blood for
the next test. You cried and I could not
blame you. I felt so helpless, all I
could do was hold you and try to comfort you.
But then she said she wanted to get a urine sample. I give props to all the people who helped us
along the way. This was the only thing
that annoyed and bothered me. She told
me after the fact she could have put a collection diaper on as she was getting
blood because, and no one can blame you, you peed during that process. I’m sure you were scared and it hurt. But the next one hurt more. She ended up putting a catheter in and you
screamed, a blood curdling scream. I
tried so hard not to cry with you. I
held you tight as you were fighting so hard at this point. It hurt and you were uncomfortable. The nurse made a joke about your legs being
so tight and closed that she hoped her teenage daughter would be the same. So inappropriate but I just gave her a quick
smile and continued comforting you.
Daddy came in just as she finished and we all hugged each other, while
you cried.
We sat there for a few more hours waiting for results. You actually got very comfortable sitting on
Daddy and watched cartoons. It was the
cutest thing to see. Finally the doctor
came in and said they could find nothing.
She was diagnosing it as a Febrile Seizure and explained what that
meant. She comforted us and told us that
as scary as it sounded, some children seem to get them and all those children
outgrow it by the age of 5. I asked her,
could it happen again? She said
yes. Because Evie had had a seizure, she
could be prone to them when she gets a fever.
I am so thankful to have you baby girl.
This was the scariest moment of my life and one I hope not to
repeat. I love you so much.
Love,
Mommy
