March 28, 2013

she's growing!

Well, Olivia is finally growing at an acceptable rate for her doctors and we couldn't be more excited!  Though she has always shown weight gain at doctor appointments, it was never a significant amount of weight.  But this week we had two appointments, one with Olivia's pediatrician and one with the neurologist, and both doctors said they were pleased with her growth over the past few weeks!  Seriously, I was so happy to hear that they were pleased with her weight....those words haven't been spoken about her growth/weight since we left the NICU.  I may have shed a few tears of joy while driving home because I finally feel like we are on the right track with Olivia and getting her figured out.
I think this girl is finally figuring out what the doctor's office looks like.  I've gotten this look several times before doctor appointments this week.

In fact, just over a month ago, Jason and I had the conversation that we would be okay with getting a feeding tube for Olivia because feeding times had become so stressful for all of us.  There were many days that I would be in tears with how long it was taking Olivia to eat, how much she was throwing up or just how difficult it was to feed her.  Most of Olivia's feedings were (and some still are) done with us bouncing on an exercise ball in the middle of our living room just to keep her calm so she can stay focused on eating and not just crying. (Special thanks to some precious friends for this tip when dealing with a fussy baby!)  Fortunately, we have doctors and therapists that didn't give up on us fighting to not get a feeding tube and we changed formulas again but found something that Olivia tolerates well and seems to enjoy.  With the encouragement and support of Olivia's doctors and therapists, we have FINALLY reached a "normal" baby daily growth rate and Olivia is slowly making her way back on the growth chart, weighing in at a whopping
11 pounds 14 ounces and 24 inches long.

precious clean baby :)

So our hard work is beginning to pay off and though we continue to struggle at times to get Olivia to eat, things are SO much better than a month ago.  I finally feel at peace and at ease with her growth and I'm not constantly worrying about her eating or weighing her all the time.  Though we do have to still increase her calories and keep track of how many ounces she is getting each day, we can rest a little easier and that makes feeding time more enjoyable for all of us.

March 18, 2013

another EEG

Last week Olivia had her fourth EEG since birth.  It was a bit of a last minute thing because Olivia began showing signs of seizure activity a few weeks ago and despite an increase with her current seizure medication, we began seeing seizures more frequently and for longer periods of time throughout the day so the neurologist wanted another EEG to better assess what is going on in Olivia's brain as she is growing.

Fortunately, we were able to do the EEG locally and we got to have the same tech as last time so it was a familiar thing for all of us.  Most of Olivia's seizures occur when she is waking up so the tech wanted her good and asleep so we could wake her up and watch what happens.  This girl was snoozin!

And was not too happy with us when we woke her up....
She had one of her seizures during the EEG so the tech got a really good picture of what happens, both in her brain and physically. 
We were told they would send the EEG to be read in Little Rock and then we would hear back from our neurologist locally by Thursday.  Well, I got a call Wednesday late afternoon from the nurse that the neurologist needed to see us Thursday morning because Olivia's EEG was definitely showing signs of seizures.  Even though the EEG confirmed what we had been seeing at home for a few weeks, hearing that we needed to see the doctor as soon as possible sent Jason and I into a bit of a tizzy Wednesday night.  Fortunately, we had small group that night to distract us a little and also to be prayed for by our amazing friends.
So Thursday we went to see the neurologist and Olivia wasn't too excited about being back at the doctor. Ha! 
We kinda went in with our minds set on the worst case scenario so what we were told wasn't too horrible.  Olivia is having infantile spasms, which is basically a form of epilepsy.  Of course we have known since Olivia's birth that she would be at risk for seizures but we were just praying that with medication, seizures would never happen.  However, our neurologist told us that the type of seizures Olivia is having is very common for babies who go without oxygen for a period of time during birth.  And it is definitely common for these types of seizures to manifest 4-10 months after birth so with Olivia being 6 months old, the neurologist said she wasn't surprised this was happening.  We have started a new type of seizure medication that will hopefully "cure" these infantile spasms and we prayerfully will never see them again.  The risk of the new medication is peripheral blindness so we are praying hard that that doesn't happen to Olivia.  And after only three days of this medication, we are already seeing a reduction in Olivia's seizure activity so we have full confidence that this medicine will take care of these seizures and hopefully Olivia won't be on these medication for more than a few months, which will also reduce her risk of peripheral blindness.
Even in the midst of all the unknowns about Olivia's future, we know that God is good and His plan is so much greater than ours...and that is the truth that we have to cling to to make it through each doctor appointment with Olivia because it is so difficult as parents to know there is nothing we can do to "fix" is simply our job to love her and trust God with her life.