Blessings

So, I've kinda had a long day today.  I guess I'm just feeling emotional or tired, or both.  Nothing special happened today...just changing diapers, feeding a hungry baby, burping a crying baby who just wants to eat some more, etc.  I didn't even put on makeup or fix my hair.

I know I've posted about our daily exercises, but we've added some exercises recommended by the speech therapist we saw Monday.  I watched the speech therapist do the exercises with Grace Monday, but I did them for the first time myself today.  She.HATED.them.  We had major tears.  It was so sad.  Then I started crying and got sad thinking about all of the extra things we have to do for Grace (which really is nothing compared to some other babies).  I just thought why does she have to go through all this and why can't she just be like any other "normal" baby??  I quickly felt extreme guilt for my self pity, because AT LEAST I HAVE A BABY.

I try to be thankful, but it's just plain hard sometimes.  But I WILL be thankful for all the blessings in my life, because God has surely showered them on my family and me.  I will give thanks to Him because He is good.  His mercies are unending and new.  His love carries me.  He is always faithful and true.  He has redeemed my life.  He blessed me with a miracle. 

This is my new favorite song!  Going through everything we have been through since October has given me a new perspective about many things, and this song reminds me of God's faithfulness to us.

Also, here are our latest photos!

Honesty

If you don't want to read this Momma's honesty, then don't read this post!

First of all, I just want to ask that you continue to pray with us as we prepare for Grace.  We are praying for wisdom with decisions and that we will make the right decisions for our baby girl.  I've written it before, but the amount of responsibility we feel for her life is indescribable and overwhelming.

I had a doctor's appointment with Dr. B yesterday.  Stats: I've gained 16 pounds total, we measured 30 weeks, and Grace's heart rate was in the 140s.  Everything looked good.

Our minds are set on Grace's quality of life, and this is what we are trying our best to base our decisions on.  Because everything is really unknown, we are basing these decisions on what we know from Grace's medical team: the doctors, nurse practitioners, and nurses.  We learn more and more with each ultrasound, although we won't really know everything we need to know about Grace's quality of life until she is born.  I hope I'm making sense!

During our meetings with our palliative care team, we have been discussing doing everything for Grace versus no heroic measures for her.  Our thoughts are if Grace is probably going to have poor quality of life, then why would we do everything?  Why would we do everything to keep her alive just to be alive, living and breathing?  I realize for some, this is quality of life.  This is very much a personal decision, but for us, just living and breathing is not quality of life.

So, doing everything means having Grace via C-section delivery, having surgery to repair the encephalocele after, and anything else that Grace will need to live.  It is so unknown.  No heroic measures means we can try to have Grace via vaginal delivery, not having surgery to repair the encephalocele if it will not improve her quality of life, and taking her home as soon as possible probably with the support of home hospice.  There are also other variations and decisions to make for either of these options.

I guess I feel like I am ultimately deciding between an unknown life possibly full of suffering, or merciful death for my baby.  Just writing that brings intense emotion and many tears.  Feelings of guilt and selfishness live there also.  Please pray with us as we will live with this for the rest of our lives.  Sometimes I find myself thinking this will all be over soon.  But the truth is Grace will always be with me for the rest of my life, either in her life or in her death.  We continue to also pray for a miracle, and for healing for our baby girl.  My whole life has been changed by Grace's precious life.

"Forever, You are the God of my story.  Write every line for Your glory."

Death and Life

I have focused a lot of time thinking about Grace and her diagnosis and what it means for her and our family.  I have thought mostly about the worst outcome, trying to prepare myself for what may happen in our future and for decisions that will surround that outcome.  To be honest, I have thought a lot about Grace dying.  I guess in my mind, I have thought that her dying would be the worst outcome that could happen.  However, last night, I started thinking about Grace's life...I have focused so much on Grace dying, and not so much on her living.  But I've discovered that I'm also afraid of her living.  I'm afraid of what her life will be like.  I'm afraid of what mine and Chad's lives will be like.  I hate the unknown of everything Grace's diagnosis means.  Will she know us?  Will she suffer?  Will she have any quality to her life?  What will her daily life be like?  Will she know that we love her?  I'm afraid of the answers to those questions.  Most of all, I hate that my baby girl has to live with this.  I pray for God's mercy and grace for her life.  I choose to trust Him...I struggle sometimes with that choice, but then I realize that I really have no other choice.  He is in control of Grace's life.  I trust that He made her fearfully and wonderfully, that her frame was not hidden from Him when she was made, and that all of the days ordained for her were written in His book before one of them came to be.  So I choose to trust Him.