Sunday, July 18, 2010

Sweet Baby Girl

My darling daughter had another seizure last night, well this morning. I know that some of you who read this have watched your children seize more than you'd like, once is more than any of us need. I watched Ella seize for about 2 days straight within a day of being born. I remember the helpless feeling that there was nothing that I could do, and it seemed there was nothing that the doctors could do either...absolute frustration and helplessness. After 3 days of seizing she had tremors, I think they lasted another few days...and they were just as bad because it just felt like she was still so sick, she was. As soon as they got the seizures and tremors under control in the NICU she didn't have another episode...until almost 3 years later. I thought we were lucky. I read so many peoples stories about their kids and was so grateful not to have seizures. I felt like we had so many obstacles and was glad not to have that. And then they happened. No matter what we have done over the last 15 months, they keep coming. At first directly related to fevers and infections, but now, no trigger. We can't associate it with anything. The last 3 have been within 6 weeks, exactly 2 weeks apart each. I feel as though we are holding our breath now, just waiting for another one. If you have never seen your own child seize, I pray you never do. It's horrible. The last 6 seizures we have called 911 and gone to the hospital, for this one we stayed home. Joe heard her at 2:45am and jumped, knowing exactly what it was...we can hear them through the baby monitor. We administered the medication and waited. The full 2 minutes we watched her seize felt like 2 hours. Sitting there, doing nothing was horrible. As soon as the seizure was over she was back...back to being Ella. She made her normal noises and eye contact and even a popping noise that she does with her mouth. She smiled and was our little girl. We stared at her for about 15 minutes, waiting to see what would happen and then exhaled as the seizure didn't return. We picked her up, put her in our bed between the two of us and then slept off and on looking at her all night. She didn't move, that's what Valium will do to you, and she slept with her hand on her daddy, her hero. She's still a little sluggish today, but mostly back to herself. I don't know how much more of this I can take...it's emotionally and physically exhausting, but for now, our family is home and healthy.

...oh, and Will busted his lip at church today...crazy few hours of life.

Here is a picture of the kids from this evening:

3 comments:

Rob and Amy said...

I am so sorry to read about this Andrea. You guys are so incredibly strong for her. I pray thst was her last seizure ever!

Kristie said...

Finding Ella seizing that first time was one time too many for me. Pretty sure I'll never get that image out of my head. :( I don't know how you guys do it. So very thankful that the Lord provides you with grace and mercy to care for the sweet girl He's entrusted to you...

Oh, and Will and JT too. :)

Beck said...

I am tearing up reading about her sleeping with her hand on her Daddy. You guys are becoming pros at this - something you never wanted to do. Praying for little E. May this all subside soon...