Sunday 22 March 2015

Our Story: What happened to Stella?

Our Stella was born three weeks before her due date. She was 7 pounds 4 ounces and ready to meet her family and take on the world! Stella was a bright blue eyed curious baby, who would look around at her surroundings before making her move. She was strong, sitting up at 4 months and taking her first steps holding our hands at 6 months and walking by 9 months. She slept through the night at 3.5 months and continued always sleeping through, although I will say now, Stella slept too well.

Stella started daycare in August 2013 at nearly 13 months of age in the toddler room. She was a strong walker and could keep up with the older kids easily and loved going to school. Of course along with those adventures are the typical viruses that come with it. It was Thanksgiving weekend, early October, Stella awoke from her nap and I noticed she had bright red cheeks and was burning up.  Quickly I took her temperature, called my Mom for support and went downstairs to give her tylenol.  As I was holding her bare diaper cladded body trying to cool her with a wet washcloth, Stella had a seizure in my arms. I thought at first she was shivering with cold. Her eyes rolled back into her head and her body was lifeless. Panicked, not knowing what to do, we ran outside to rush her to the hospital, yelling in the streets for help. Our neighbours quickly came to our rescue and told us Stella was breathing and held her and comforted her. We called the ambulance and Stella was taken to the hospital. Stella had a febrile seizure and had a mild case of pneumonia.

I had a febrile seizure at 2 years old and was told it can be hereditary.  We were told Stella could have more and that they are normal.  Most children outgrow them by age 5.

Stella had a few colds after that, with one cough that lingered a little while. We took her to many visits to the doctor's office and into the hospital if she had a fever, for our own peace of mind. We were prescribed puffers but we told she didn't need them. We celebrated our second Christmas and returned back to work and daycare after a great break together. A week later as I was leaving work, I got a call from Stella's daycare, the worst happened.  Stella's teacher thought Stella was having another seizure but this time she wasn't shaking but stiff with her arms to her side. I ask her teacher to call an ambulance and my husband would be on his way. It was a snow storm that day and I was stuck in bumper to bumper traffic only a few kilometers from the hospital. A parents worse nightmare, not being able reach your child. I wanted to yell and tell the cars to move so I could get to my baby faster.

Stella was resting calmly with her Daddy when I reached the hospital and later was moving about entertaining others in the hospital hallways and watching her favourite dvd's on our portable player that her Daddy went home to get for her. Stella had tests done that came back with no answers, she wasn't sick, it was only a fever that quickly elevated. Stella had a fever for a few days and was back to her old self. A few weeks later, Stella had her 18 month vaccinations. Although I was told it was normal (and I believe that to be true) Stella had a huge egg size lump in her thigh from the shots. Poor baby.

February came along and we found out we were expecting our second baby and shared this news with Stella. We had been invited to a friends baby shower about 1 hour away from our house. Stella had a great time dressed in her full chambray skirt with the few curls in her golden hair. She wasn't herself as she had some diarrhea, I took her temperature. It was low grade so I gave her some tylenol and we decided to go home. By the time we got home, after Stella napped for the car ride, we went into our home to greet our friends for our annual Superbowl party but Stella had a fever. I took her temperature and realized it was 39 degrees. I took her upstairs with my husband and my Mom to cool her down and give her medication and shortly afterwards after Stella was moaning Mama while I held her in my arms she had another seizure. We did the usual, called the ambulance and off to the hospital we went.

Stella had all sorts of tests taken again and rested peacefully sleeping on top of me on the hospital bed. We were told she had pneumonia again. Stella had no symptoms! She was eating and drinking so we were sent home. With the help of my Mom, my best friend and her Mom, Stella's loving Daddy and myself we stayed home with Stella for 1.5 weeks. We followed up with a pediatrician after 1 week and were told it was still there a bit but by the next week she was ready to return to daycare.

We decided after the second febrile seizure we would educate Stella's daycare about febrile seizures and put an action plan into works. The booklet I put together described why she had the seizures, what she would do and look like, what to do and what not to do. I listed what temperatures to give her meds or to cool her down and call me. We felt we would be educate everyone so it wouldn't be such a scary thing.

That Friday was Valentine's Day. I prepared Valentine's for everyone in Stella's class.  I made candy kabobs and Valentine's messages from Stella to spread her love with her classmates. That morning I was surprised with a diamond eternity band to match my wedding band - the one I had wanted for a few years. I went to work happy knowing it was a long weekend and I would be off work early. I listened to a favourite song happily on my way to work. I got off work at 3pm excited to be able to pick Stella up from daycare as I normally wasn't able to. Her daycare called me and said she had a low grade fever that day and they gave her some tylenol. 

We got home and enjoyed watching Stella play with the baby doll we gave her for Valentine's Day that morning. She fed her baby her special Valentine candies and gave her some milk. We video taped her in amazement as she hugged her dolly. She was going to be a great big sister.

The next night I had my girlfriends over for a few drinks. Stella played quietly while I prepared for our friends to arrive. Stella got to see all of my friends briefly before heading to bed. I checked her often, as usual, worrying about the fever returning. The next morning we rushed to get ready to attend Stella's second session of swimming lessons.  Although only being better a few weeks I decided to take her and not put her head under water. Stella was asked to jump into my arms in the water, this was something very advanced for our new "swimmer". Stella eventually stepped off the ledge into my arms.

Later that evening, we visited my Mom and Stepdad and planned to share our exciting baby news. I prepared a note for Stella to give her Grandma that read "I am being promoted to Big Sister October 2014".  Stella shared the news with our family happily. We spent the evening together and had a nice dinner.

The next day was the Family Day holiday. We planned to stay home and take it easy. Stella put her finger in her ear and I knew it must be an ear infection, a common thing she got. She wasn't running a fever nor acted out of the ordinary so we decided we would go to the doctor the next day after daycare. We stayed in our pj's all day and Stella played at home with us. She had so much fun playing in her kitchen. She cooked food in the microwave, added spices and drank from a cup while we sat video taping her in amazement at our big girl and how she played. We were so proud of Stella. We made crafts as Stella was crafty like me but that was stopped when she decided to put her markers in her mouth and all over her face. Time for a shower to remove the marker and an early bedtime! In bed by 6:30pm.

Stella woke at 9pm asking for Dada so we went downstairs as it was a Monday night and I was watching the Bachelor which Sean couldn't stand. Stella got a cuddle from Daddy and he took her back up to bed. We went to bed at 10pm and Stella woke briefly sitting up and said "poopoo", laid back down to sleep again. Sean woke up to Stella stirring at 1am, checking on her, she was getting comfortable holding onto her pink bunny.

I normally wake at 6am, get ready then wake Stella at 6:30am for the day. That morning Sean woke and checked on Stella while I showered. It's not very clear to me anymore exactly what happened or what I heard but I remember hearing stomping sounds and Sean ran into the bathroom and I think he said Stella was gone. I jumped out of the shower as he ran back and forth from her bedroom to ours. I called 911 but Sean said it was too late. I didn't believe it and called. He was instructed to do CPR on Stella and he asked me to stay out of the room. I ran downstairs and waited for the ambulance. It had snowed a lot that night and the roads had a foot of snow. The ambulance took forever. I called again and was told it was on its way. The ambulance arrived and only attended to Stella in her room for a few minutes. She was already gone a few hours and there was nothing that could be done.

We waited in shock in our kitchen while the police entered our home to investigate. We couldn't believe what had happened. Our sweet baby passed away in the dark of the morning in her crib on her own without us knowing what was going on. The police were there by 6:30am and didn't leave until after 1pm. We spoke with the police and coroner and told them our story. I had called my Mom moments after Sean told me what happened. That call haunts me as I told my Mom Stella was gone and they rushed to our home. My Mom wasn't able to come into the house to comfort us.

As the day went on, I had calls from my bestfriends who heard the news. They didn't believe what happened and immediately came to us from near and far. Some ran out of meetings and others took cabs from Toronto. That day was the worst day of my life having to greet our friends and tell them what happened.

A few days later the Coroner told us they did the initial look at Stella and saw that she had a minor ear infection (as I thought) and a dry cough, as I knew. Everything else looked fine. The police took all of Stella's bedding, bunny and clothing to investigate and later returned it to us and told us that they could tell that we are amazing parents and did everything we could for Stella.  They could see it by our home as soon as they walked in. It was so comforting to hear this from the people who respectfully investigated our home.

It wasn't until recently that we were told Stella's autopsy report was finalized and her cause of death is unexplained. There was nothing wrong with Stella to cause her to die.  Although her history of febrile seizures we are told did not attribute to her death, I cannot help but remember what we went through health wise.  As we had thought, Stella's death was like SIDS but for babies older than 12 months old called SUDC - Sudden Unexplained Death in Childhood.  Research is being undertaken on the link between febrile seizures and SUDC.  Until more research is done, we have no cause, no reasons and no answers.

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