September 13, 2012

NICU update...MRI results

I apologize for not blogging this when we found out the MRI results on Tuesday but the results were not what we were hoping and it has taken me a few days of processing to finally put into words what is going on.  Obviously some of the medical jargon is muddled in my brain but here is what we heard from the neurologist and our plan of action for our sweet Olivia....

Olivia has a significant brain injury to the outer part of her brain.  From the way the neurologist described it, the injury covers a large amount of her brain.  Because the injury is significant, the doctors have no idea how this will affect her growing up.  What they do know is that she will have developmental issues but to what extent and exactly what those issues are we will not know for months to years.  This is probably the most frustrating part for Jason and I because we just want to know what to expect, like if her speech will be affected or her physical abilities, but unfortunately we don't have any clear answers so we have to move forward knowing anything (or everything or nothing) could be affected by this brain injury.

HOWEVER, we have a God who is bigger than all of this.  As Jason keeps reminding me, God doesn't make mistakes, His plan is perfect and Olivia's circumstances are not a surprise to Him.  SO we are trusting God for BIG things!  We are praying for complete healing.  Olivia has been a miracle since birth....statistics show that when a mother has a complete placental abruption, most babies don't survive but God spared her life so we know that He isn't done with her yet!

For now all we really know is that Olivia will have speech therapy, occupational therapy and physical therapy multiple times a week, just as she does now at the hospital, once we are home.  Jason and I will learn her therapy routines and do them with her as much as we can.  We will love her and do everything in our power to get her the best care possible.  We KNOW that she is going to do great things and absolutely amaze the doctors who have been studying her brain for the past three weeks.

Olivia's story is just beginning and though we do have moments of fear looking into the future, we are doing our best to take one day at a time, focus on getting Olivia home as soon as possible (which we did find out will be sometime around my actual due date of September 29) and daily humbly laying and crying at the feet of Jesus begging for His grace and mercy over her little brain.

6 comments:

  1. We will continue to pray. God does have a testimony and story through sweet Olivia's life. We will be walking and praying beside you as that story unfolds and He shows His greatness through her!

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  2. Read this beautiful prayer yesterday, and it helped me greatly! Looking at Olivia and how far she has progressed in 3 weeks is nothing short of a miracle, and we, too, are filled with hope. I know this, she has the BEST parents and sister, not to mention God's immense Grace. She is blessed as are we.

    O God, so mighty and so gentle
    I bow before you in humble adoration.
    With a calm and quiet spirit
    I climb into your lap,
    there to rest.
    In my resting fill me with hope
    so that I may trust you forever. Amen.

    -Jo Hoover
    Upper Room Worshipbook

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  3. Your daughter is more than a diagnosis or prognosis. These words provide a vague glimpse at how her brain looks. What it doesn't tell you is how amazing she is and will continue to be, and how her strength that allowed her to survive is the same strength that will continue to help her not just live but thrive. Yes, her life will be different than what you expected, but there is beauty in letting your expectations go so that you can just enjoy every miraculous day with your amazing daughter. You will make peace with this diagnosis, and you will move out of worrying about what she can't do as soon as you start to just enjoy what she can do.

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  4. We won't stop praying for a big miracle!!!!!

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  5. Hi - I found your blog thru Kelly's Korner and wanted to let you know I know exactly how you feel. My 2 year old was born at 29 weeks 5 days and had Level 2/3 (borderline 4) brain bleeds plus PVL. They gave us a pretty grim worst case but no real answers since it is sort of hard to predict. He has MILD cerebral palsy but he is so smart and funny and lovable. His pediatrician said he has the vocabulary of a 3 or 4 year old. I just wanted to let you know that even though he can't walk yet (he is SO close) that if I could have looked forward a year or two I wouldn't have worried quite so much. I know that not every situation turns out so well, but I will pray for your sweet baby! If you have any questions or need anything let me know. Sometimes it is easier to talk to someone who has been there (54 days in the NICU!)

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  6. I'm sorry my email is not attached - mardi32@gmail.com

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