"For you created my inmost being;

you knit me together in my mother’s womb.

I praise you because I am fearfully and wonderfully made;

your works are wonderful, I know that full well.

My frame was not hidden from you when I was made

in the secret place, when I was woven together

in the depths of the earth. Your eyes saw my

unformed body; all the days ordained for me

were written in your book

before one of them came to be."

Psalm 139: 13-16

Wednesday, May 30, 2012

Life with a shunt

Well we were hoping to make it a month without a trip to the neurosurgeon, but today we found ourselves back in the office again. At our last visit, her shunt was turned up again which slowed down the amount of fluid coming off of her brain. We were happy to see that the swelling that she had had around the shunt only came back a little and we thought we were ok. Unfortunately, over the past 3 days I noticed her head circumference was increasing, and her fontanelles (soft spots) were getting firmer. Yesterday the fontanelles started bulging, and this morning her eyes began to “sunset” and she was having trouble keeping them aligned (common for some babies, but not something that she has had trouble with before). These are all signs that too much pressure is building up in her brain. A quick phone call and we were back in the office for another adjustment. It appears that she cannot tolerate the slower setting, so for now we are sticking with the faster one. Although she was not quite “herself” the last couple days, she handled the increased pressure fairly well, even smiling for me in the waiting roomJ
Today was a huge reality check for me. Thanks to much prayer, Meghan has done amazingly well these past 13 weeks of life! We have settled her firmly into our family, and despite weekly therapy appointments that “remind” you that everything is not 100% normal, I have come to a place where it at least feels normal. Today was a “gut check”. Life with a shunt is not normal, and sometimes, it is scary. I am so much more thankful today for all the mundane moments we share at home, and even more thankful for the limitless grace, strength and peace that is extended to me by my Savior. The only way I can continue to walk forward without fear, is because I know He has already been there, and is leading me on.

O Lord, you have searched me and you know me.
You know when I sit and when I rise;
you perceive my thoughts from afar.
You discern my going out and my lying down;
you are familiar with all my ways.
Before a word is on my tongue
you know it completely, O Lord.
You hem me in—behind and before;
you have laid your hand upon me.

1 comment:

  1. Sarah, Do we ever really know what tomorrow brings? God has given you the tools you need to keep Meghan safe. There are many reasons you are her Mommy. I have followed your journey from the beginning and I have prayed everyday for strength for you and Joe, knowledge and guidance for all the doctors, and continued love and support from friends and family. Meghan is so beautiful and so blessed to be a part of your family. I will keep you all in my thoughts and in my prayers, thank you for sharing her with all of US.