"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

Tuesday, January 3, 2012

Hope Floats

If there is a vessel called hope gliding along amidst raging waters in a storm called hydrocephalus, today we got to climb aboard. While hope has always been present, the last twelve weeks since Meghan’s diagnosis have been for me about learning, growing, and accepting that things are going to be different than what we expected. As we face so many unknowns in the weeks to come the type A, color coded calendar me has been trying to function in the middle of uncharted territory and it has admittedly freaked me out a littleJ  I realized about 12 weeks ago that I couldn’t do this on my own and I’m glad I got that out of the way in 2011. It frees me up this year to move on to completely surrendering to God’s plan for my life. Part of that plan included Meghan Grace right from the start even though I have no idea what her life or mine will look like once she’s here. I have been researching, planning, and trying to put as many pieces of the puzzle together ahead of time as I can, but ultimately it is out of my hands, and completely in His. Though it has not been an easy process, through days where I am at peace and days where I am fearful, I am aware that this time has allowed me to prepare emotionally for the next part of this journey. For that I am thankful, because come what may it was intended for me, for Meghan, and for our family.

So why is today different? We met our Neurosurgeon today, and I’m pretty sure she said the actual word “hope” about 8 times in 45 minutes. She told us many stories of kids that she has seen who do very well after being born with severe hydrocephalus- even one who she actually operated on who was in medical school intending to go on to Neurosurgery because of all he had been through in his life. We know we will take things one day at a time, and rejoice over every accomplishment, taking them all as tiny miracles no matter how simple or complex they are. Being in the medical field I know how important it is to be realistic, present all the options, and maintain a firm grasp on what really is right in front of us. However, going through this as a parent I cannot begin to describe how thankful I am for someone that offers hope in the face of a poor prognosis. We know there is a spectrum of disabilities that can come out of this situation, but leaving us room for hope allows us to be the best parents we can be for Meghan.

Since the doctors are not 100% sure what is causing her hydrocephalus, Meghan will have another Ultrasound and or MRI of her brain right after she is born to help identify the cause and make sure that getting a shunt is the right course of action. From the way things have progressed it sounds like that a shunt is very likely. The timing will be determined by how stable she is after delivery. We also met with the Fetal Care Coordinator and saw where we will be delivering her at Cleveland Clinic Main Campus, and walked through the delivery day’s events as best we can “imagine”.  The general consensus is there is an average stay of about 2 weeks in the Neonatal Intensive Care Unit for Meghan after her surgery, so we had time to see where family rooms are, a playroom for Addie, and also talked about getting a room at the Ronald Mc Donald House so that I can stay and be close after I am discharged from the hospital. Provided she doesn’t arrive on her own time, we are scheduled for delivery on February 23.

I am excited to see what God will do in our lives this year. I know there is a reason I have been challenged to grow as much as I have in these past few months. I am thankful for the gift of Meghan’s life, thankful for the gift of truth, and the way that my faith has been increased because of that truth. My resolution this year is to simply live in the moment and be content with today. Tomorrow is not promised, but strength and hope for today, for this moment, are promised abundantly.

“Let us hold unswervingly to the hope we profess, for He who promised is faithful” Hebrews 10:23

1 comment:

  1. Praying for all of you. For God's very best for each and everyone of you. God has truely blessed your precious little one with an amazing family. She will be loved and cared for in only the way God can provide. Our God is an amazing God especially in the midst of the storm. Know our prayers and heart are with all of you.