I find this post one of the hardest to compose. Even though I have a million descriptions of feelings and thoughts, I have had the hardest time putting into words about this day.
This is the day that changed our daughter's life and opened us up to the fear that can hit a parent and send you on a journey you never see coming.
Here is the story of my Baby and our moment of impact-
October 18th, 2013 - I took our daughters for the 4 month and 2 year checkups at the doctor. We had a nice appointment. The girls were growing nicely and the visit was standard. Our 2 year old didn't need any vaccines but our 4 month old did. That day she was to receive 5 shots. Vaccines have always made me nervous but I believe in the lesser of two evils. We only had minor issues with our older daughter so this time around I was more trusting.
I am haunted by this day.
Here are my beautiful girls, happily waiting to see the doctor..
Late that day my baby was fussy and we put her to bed early that night. Around 7:30 pm I heard a strange noise through the monitor and rushed upstairs. I flipped on a light and my husband and I witnessed our 4 month old having a seizure. Her head was at a weird angle, her eyes were rolled back, her body was tightly shaking. I scooped her up, told my husband she was having a seizure and ran downstairs to take her to the emergency room. My husband wasn't quite sure what he saw but I knew in my gut that I had just watched my baby have a seizure.
Our 2 year old was asleep so my husband stayed home. I called my mom and told her what happened. She is on my way to the emergency room so she went with me. The seizure only lasted a couple of moments so I had to describe to the ER doctor what the issue was. He basically made me believe that I didn't really see what I thought I was seeing and that a child her age having a seizure (without a fever) is rare. He asked me if I wanted to subject my baby to a bunch of un-necessary testing.
He made me doubt myself and so I believed him and thought maybe I over reacted. 1 hour after arriving home, she was asleep and it happened again. I gathered up my daughter, her diaper bag and any extra items I would need. Picked my mom back up and headed straight to the Children's hospital.
I wasn't going back to the local ER again. The doctor at the local ER made me feel silly even when I was sure. My second lesson to trust my gut had been learned.
After a long ER stay where they took blood from my sweet baby, put in an IV and did some testing. We were finally admitted, my husband arrived and with in a short time our daughter had her 3rd seizure. This time all the nurses on the floor were witnesses and told us that yes, it was a seizure.
Watching our baby seize is one of the scariest moments of our lives. It was a horrible, helpless moment. I thank God for the nurses who took care of her and us while we stood by her hospital bed unable to help.
We quickly were introduced to our first pediatric neurosurgeon and our daughter at 17 weeks had her very first Spinal tap. We had to hand over our small baby to a doctor we had never met to have a needle injected in her spine. We weren't able to accompany her and my husband and I didn't speak while she was gone. We weren't able to and we didn't need to, we were both scared.
All of our tests came back negative- The MRI, Spinal tap, Catscan, blood cultures, physical and neurological exams. Waiting while these tests are ran and watching your tiny baby go thru all these huge machines isn't something I will soon forget.
The doctors felt sure that this could possible have just been a reaction to the vaccines and that typically it is an isolated event and so after three days,they were comfortable sending us home.
I was ready to go home and being that my baby only had seizures in her sleep I was grateful that she still slept next to my bed.
We were home for 1 1/2 days and she had 3 more seizures. We went to see our neurologist in the office and she immediately admitted us to the EMU. The Epilepsy monitoring unit. The baby had to be hooked up to a EEG and monitored for 72 hours. It was a long and scary 72 hours.
No seizures happened while we were there so after 72 hours we were again released. We settled back into home life with the constant watchful eye on the baby..wondering if it would happen again.
We were home for 13 days when our she had 8 seizures in a day. The seizures exhausted her so much that she was non-responsive all day and wouldn't wake up for more than a few moments. Becoming a quick expert on hospital stays I packed us up for 3 days and took her to the ER again. We were re-admitted again to the EMU and this is where we finally had sucess. If this is what I can call it.
On this particular Seizure we were able to get it on video and to see what kind of seizures she was having, where they started in her brain and that every time she had a seizure her oxygen levels dipped. They had to give her oxygen and this was like a kick to my gut. I didn't notice that she was cyanotic and what it looked like.. how could I not have known?
They gave her a loading dose of medicine to stop the seizures and started her on her own medication for stopping these seizures.
I learned some good lessons on this trips.
1. Advocate for your child you are the only one who can do it.
2. Ask the questions over and over and over until you are comfortable with the answers (there are none) or at least the path they send your child down.
3. Don't let someone tell you you are wrong or maybe you are over reacting (ER visit) believe in yourself.
I am a mommy who learned quickly what fear tastes like and repeated the silent prayers that you say when you are pacing the floor in a hospital room over and over while you are holding onto your child.
Dear God, please let my baby be okay, Dear God, please let my baby be okay.
I will continue her story in another post as this one is a bit lengthy. We will be told that it adamantly not the vaccine and again I will doubt myself even though in my heart I know. We have learned so much from this journey we have been on..soon we will head down the path of genetics, second opinions and the scary things they will tell you until they know the exact diagnosis. Exact diagnosis is a sentence that doesn't go together.
Share your stories with me as I will continue to share mine!
Please read the second part of our journey Moments that still Impact
Here is a visual effect of seizures on the body, it is a great description of what happens before and after a seizure. I found this very useful as my daughter is unable to tell us how she is feeling.