Tuesday, February 16, 2010

Happy Sara

Just great, they give me my dad's haircut again, gee whiz....

Sara is feeling much better this morning. She had some pain yesterday, but some stronger pain medicine helped with that. She mostly slept through the afternoon and night, waking about every 2 hours to eat a bit. Her bowels are already awake and working - praise God! We will continue to go slow with the food. Thankfully we will get to hold her today, which makes for one happy momma! She will receive 10 days of antibiotics and so we are thinking we will be home the middle of next week. Jennifer and I may have to wear name tags to recognize each other, ha! I'll tell of that later.

The surgery was successful. Sara's shunt was taken out of the right side of her brain and a new one was placed on the left side. Why the switch? The other side has had 2 infections, better safe than sorry in case there is something lingering. Also, there is a need to equalize the pressure on the left side. It was originally placed on the right side because that is where most of the damage was done from the intraventricular hemorrhage (brain bleed) and infarction (stroke) she experienced at birth and her first few weeks. The shunt has helped that side, even though there is visible damage (more on than in a sec). Her body is still producing excess cerebral spinal fluid (hydrocephalus) and the left side needs more attention now.

The doc is 90-92% confident this shunt will work and find that equilibrium. Too much pressure and it squeezes the brain. There are other options down the road that can be explored in case this shunt doesn't work. But they are more complicated and it is better to see if the easier solution will work first. Another problem with the right side was that due to the damage, her body was producing more proteins on that side which was part of the problem with the clogged shunt. If the shunt continues to get clogged there is an option to let it drain into the heart. Sounds dangerous, but it's somewhat common and can work.

From the CT scans, there is visible damage to the back of Sara's brain. There are gaps. Check this website out to learn more about what areas of the brain control what functions - Brain Map. From what I understand, it seems the damage is mainly in the occipital lobe. This explains why the doc is daily amazed at her vision and eyesight. Her ability to focus, track, respond to stimuli, respond to people - he continually marvels, as we do to. It seems with the damage seen on the CT scans, he is amazed at how well she is doing. And that is one important thing he has told us - you treat the child not the x-rays. From the x-rays there is no way Sara should be doing what she is doing.

What developmental difficulties will Sara have? No one knows. The doctors mention speech, reading, learning, math difficulties. To what degree? No one knows. But I do know God has given Sara two parents with educational degrees and teaching backgrounds. And I know Jennifer and I have never been more committed to doing all we can to help her, along with her therapists and others.

Abigail, our 8 yr old, asked Jennifer a few days ago - "Mom, why did God give Sara to us, why couldn't He have given us a baby without all of Sara's problems?" Jennifer replied what we believe - "God gave Sara to us because He knew we would be just the right parents and older sisters that she would need to meet all her needs. And Sara would be just the right daughter and younger sister that we need for our family" But know this, it has been a process of God through the Holy Spirit working in our hearts to get us to that point, we didn't just arrive there in a instant. Hopefully I will be able to write more about that one day.

Our Creator God has made us wonderfully and fearfully. He has given our brain an incredible ability to rewire and accommodate for damage, especially at an early age. He is gracious and merciful and works in ways we will never understand this side of Heaven. And He has a plan and purpose for Sara's life as He does for all our lives. God has decided several months ago that Sara will live. He is the author and giver of life - physically and spiritually (through Jesus Christ). And so now we get to go on this incredible journey as a family to see how God will work in Sara's life, our lives, and make His name known and make Himself look glorious! Thanks for going on the journey with us and praying for us.

One of Jennifer's favorite verses right now - Zechariah 2:5 "And I will be to her a wall of fire all around, declares the Lord, and I will be the glory in her midst."


  1. I'm so happy to see this happy Sara. I know that your family is having to go through such trials, but you are doing so with such grace and strength.
    It is inspiring.
    With love and prayers,