You never actually want to live out an episode of "Grey's Anatomy", but on Christmas morning it felt like I was living my very own terrifying episode. We went to bed Christmas Eve excited for the morning, and for our flights out to see family later that day. None of those things happened. What happened instead was waking up to our precious almost 19 month old daughter having a seizure early Christmas morning. Every parents' worst nightmare.
A few people have been asking what happened, how are we doing, and how Emilyn is doing since last week, and we have been trying to keep people up to date via facebook. It's been hard to keep up with everyone or remembering to post an update, so I thought I would blog about it for anyone who wanted to know more. So, here's some more information of what happened and what we know at this point.
Emilyn is doing so much better. She is still recovering from her mild ear infection and croup (what they think must have caused the seizures) but each day she is doing better. As those of you who know our sweet girl, know she is FULL of life, and a very loving life kind of girl. She loves to sing and dance and be silly and just has an overflowing love (or hate ha ha she's an all or nothing girl, she wears her emotions on her sleeve!) for life. Seeing her lay in the hospital bed for 6 hours sedated and recovering from the seizures were the hardest moments of our lives. When she was finally coming out of the drugs and sat up and belted out "let it go!" as she swayed back and forth, we thought our hearts would burst. A glimmer of hope.
Since that awful morning we have both been filled with so much uncertainty and worry over the unknown. Emilyn had what they call "complex febrile seizures", which means more than 2 in a 24 hour period or lasting more than 10 mins each. Initially we were told she had three separate seizures, all over 10 mins long and about an hour apart each. The first was at home and she was still seizing when the EMT's arrived (we don't know for sure how long that one was). We just talked to the doctor who treated Emilyn at the hospital and he informed us that they do not know if she had three separate seizures or one really long seizure (approx 3 hours). They had her on medication and whenever it would start to fade she would either seize again or it would still be happening. They said there was seizure activity for much of the first few hours. They gave her a different medication to stop the seizures for good, had that not worked or if she had another one we would have been whisked down to Seattle Children's Hospital.
The worst part with febrile seizures we have discovered, is there is often no warning (as in Emilyn's case). Emilyn went to bed on Christmas Eve her normal self, she had a few meltdowns earlier that day but that's a typical day. That is part of what makes it so stressful and the fear to set in as you wait for the next one to happen. She may never have another one, or she may have several and hopefully outgrown them by the time she is 5. This is what keeps me up at night, as the fear creeps in with the darkness. Will she have another...will I hear it...will she be okay? All these questions float through my head, and the scary thought that I have no way of knowing. It is not for me to know.
We placed our fears and trust down at our Savior's feet, without the strengthen of our faith I don't know how we would have made it through those first few hours. We clung to His hope and promises as we watched them do countless tests trying to figure out what was wrong with our baby girl. And every day and night we do the same as we pray we don't have to relive that first day again.
Looking back at how our day unfolded I can see how God carefully took care of "simple" details that put us in the best possible situation for what we were facing. Emilyn normally sleeps in her own room at night, but thanks to getting 8 teeth back to back this fall she hasn't been sleeping well (she was never a good sleeper), and would normally end up in our bed in the early morning (we honestly don't mind having her there). So when she had her seizure she was sleeping in my arms and I noticed it and we were able to call 911. Also, since Chad has work responsibilities Christmas Eve we always fly Christmas day to spend the holidays with one of our families. And, we always fly out on one of the flights that leave before the sun comes up, except this year. For some reason all the morning flights were significantly more expensive or were sold out, I was frustrated with this when we booked the tickets, but looking back I am grateful. We were both thankful we were both home and not on our way to the airport, in an airport or in the air when Emilyn's seizure happened.
Our Christmas has not been what we planned, it kind of went by without us even knowing. We were supposed to be spending a week a half with my family in the freezing north. ;) Laughing, giggling and watching the three girl cousins run around in their matching Christmas pjs. Spending lots of time cuddling and making new memories to cherish and look back on through the year when we are so many miles apart. Our visits are so few and so special that its been really hard to think about the memories we are missing out on. As hard as this is I can't help but find myself so thankful that God was in the details and he had a plan with how our Christmas went. Although I may never understand why this was the plan over the much more appealing original plan, I trust that He knows what He is doing.
Emilyn has her neurologist appoinment January 12, and we are anxiously awaiting what answers that may hold. Until then we are enjoying the giggles and cuddles of our sweet girl. We are so thankful that Emilyn, in between coughing fits is back to putting on constant dance recitals and concerts. We are back in the land of belting out the only 3 lines of "let it go" that she knows and gibberish songs.
Thank you dear family and friends for you love, support and prayers. We take comfort knowing our girl is being prayed for from every corner of North America. We love you all!
