Thursday, August 18, 2005

Today was a very moving day for me. God has put something in my heart that is truly amazing. While I don't want to go into too many details right now as my mind is still swarming with the ideas of how I want to make it happen, I will tell you that amidst all that we are enduring, my heart is searching for ways of how I can use this experience to help other families. Crazy I know, you'd think I would be concentrating entirely on Jacob, yet I ache to find a way to help other families deal with their own NICU experience.
This is something that has been brewing in my heart since Brianna, I just didn't have all the pieces to the puzzle until now. As I was in a cab with Brianna's nurse leaving Seattle Children's Hospital to come back home, she looked at me & said, Jamie, someday you will be helping other people. I don't know what you'll be doing, but someday this experience you are going through will lead to you helping others. Coincidence...I think not. Although life sucks right now in the eyes of motherhood & medically, through Jacob, God is making me stronger & leading the way. Could this be the 'why' we have been searching for?
There is a song that has been playing on KLOVE recently & the last 2 days it seems like it has been getting played a ton. I must have caught it playing 6-7 times today, on the way to work, at work, on the way to the hospital, and even coming home for the hospital. Earlier in the day, I was only singing the chorus, not really paying attention to the rest of the song. It was as if God was sending me this message all day & little by little I would hear more of it, until finally I really heard Him & listened.
The song is by Superchick, titled We Live. I encourage you to read the entire lyric, however here is the chorus:
We live we love
We forgive and never give up
Cuz the days we are given are gifts from above
Today we remember to live and to love
This is now Jacob's song. I find myself repeating the chorus in my head constantly. It's a reminder that I truly need to focus on the now, not what happened in the past or what may happen in the future.

I hope I can find the joy & feel privileged in knowing that God may have just sent me another angel baby.

Jacob's status hasn't changed. I had a long talk with Dr A. Johnson today about the results of the EEG. The number of seizures has not changed, in fact he had approximately 60 in 24 hours. He did say, however, that the seizures were in multiple areas of the brain on previous EEG's, but this last one they appeared to all be centrally located. He wants to double the Keppra one more time to see if it will stop them in this central area. It's not very hopeful, however, we'll never put him back on Keppra again, especially at this high dose, so we might as well try it now. He will go on another EEG tomorrow to see if the increase did anything.

If the Keppra doesn't do anything this last time, he will be weaned off it & by Tuesday a new drug will be tried. We are also working on getting a "Care Conference" scheduled for Monday afternoon. This meeting will include all of Jacob's care providers, Dr's, nurses, dietitian, physical therapist, etc. We will be talking about some tough issues, but it's necessary so the staff know what they need to do in certain circumstances.

I also felt much more comfortable talking with him about the direction Jacob appears to be headed & I feel like we are on the same page. He also said that the entire staff is so sympathetic to what we are going through, it's just not supposed to happen and doesn't. I felt as though we finally made a connection.
Although the big miracle we all want to see happen doesn't look like it will, I can't push aside the fact that a lot of little miracle's are, we just need to have our eyes open to see them.

Overall Status: Stable
Visitors: Cindy & Larry
Dinner Provided By: The Neuroth's Family

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