Wednesday, March 25, 2009

25 Weeks, and more seizures

We've made it to 25 weeks!  I am so thrilled.  Our baby's eyes might start opening by the end of this week.  Abby's eyes were fused shut when she was born and didn't open for a while.  

I remember a 25 weeker born soon after Abby who "lived" across the aisle from Abby.  She was breathing all on her own and was throwing the biggest and tiniest screaming fit I had ever seen in her isolette.  Her eyes were wide open.  It was almost unbelievable that a baby so small (probably under 2 lbs) could be so feisty and healthy.  

(For those who have given birth to a 25 wkr, I am by no means saying that all 25 wkr's are this fortunate.  I just like to remember that baby during this time of my pregnancy, encouraged by the gestational mark we have achieved!) 

I saw that baby again after Abby was discharged from the NICU and attending a therapy program in Knoxville for ex-preemies.  She was very healthy looking, just tiny.  

Abby definitely seems to be having new seizure activity.  I spoke with the neurologist's nurse today about what we have been seeing.  The doctor has ordered blood tests to check her Keppra and Zonegran levels.  We asked for another EEG but I'm not sure that will happen any time soon.  Hopefully we can get the labs drawn without too much drama this afternoon.

For those interested, the new seizures she is having are Absence seizures and probably Complex Partial seizures.  She has had Absence seizures before, but they have become more frequent lately.  When she has these it's like she is in a daze, "staring" off to the left and unable to respond to us for 10-20 seconds.

 The new seizure activity manifests itself through "automatisms" and rapid breathing.  (automatism:  unconscious and repetitive movements).  For Abby, it looks like she is gently bringing her hair over her face on the left side, over and over again while turning her head from side to side.  She also seems agitated during and after the seizure.  They only last about 15 seconds and are sometimes hard to recognize.

We think because she is having more seizures daily that her behavior is being affected.  She has been more "out of it" than usual, not cooperating during therapy or activities and just wanting to be left alone.  She's also been sleeping more than normal, and is often agitated when she is awake.

We are really hoping that we won't have to go back up on the Lamictal again.  But, of course we want what is best for our little sweetie, even if it means more drugs.  With Abby it's been very difficult to find that delicate balance b/w seizure management/drugs and healthy development.  
The drugs probably keep her out of the hospital, but they also have side effects which contribute to all sorts of set backs.

I'm watching her now as she sleeps off one of her tonic clonic seizures.  It really breaks our hearts.