Thankful for our Miracle

I'm awake at almost 2am right now, thinking about my precious baby.  I just called to check on her in the NICU.  She is doing great, and hopefully she will be home on Thursday!  I can't believe I only have one more day without her home!  I CANNOT wait!  No more just seeing her in the NICU.

I just keep thinking about the miracle of her life, and I have to share my thankfulness for Grace.  She is our miracle.  We dedicated her life long ago to our Lord, and I just want to praise Him for all that He has done for her and for our family.

Thinking back, we have had the darkest days.  Days that will forever be in my memory.  The day we found out something was wrong with our precious baby.  The days of ultrasound after ultrasound looking at the birth defects.  The days of doctors appointments seeing and hearing the words "encephalocele" and "agenesis of the corpus callosum" (words I have come to hate).  The days I thought about what I would bury my daughter in.  The day we picked out what cemetery we liked best.  The days of unknown. 

Praise be to our Father for the most glorious day of my life...Grace's birth day!  I will never forget the first time I saw her.  She was perfectly beautiful.  We loved her from the first second of her life more than we thought was possible. 

Just to think about when we didn't even know if she would be stillborn.  Or if she was born alive, we didn't know if we would have much time with her.  We were prepared for the worst.  Now we know that she is a fighter and is doing much better than anyone ever expected...she is doing great!  We are just thankful beyond words!

Thank you, Lord, for our miracle Grace!  Praise be to You for her life.  We dedicate her to You.

Jeremiah 29:11 "'For I know the plans I have for you,' declares the Lord, 'plans to prosper you and not to harm you, plans to give you hope and a future.'"

Just.can't.help.it.

Sweet, sweet, sweet!

All these pictures are wearing me out!

 Hello world!

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."

John 11

I am reading several books currently, and one of them is "I Will Carry You" by Angie Smith.  The book is about Angie's baby Audrey, who changed the world.  I will post Audrey's story.

Something that I read from her book is ministering to me today.  She writes about the story of Lazarus from John 11.  Angie wrote she became fascinated by the story of Lazarus.  She wrote, "The Greek word translated Lord...is kyrios and denotes sovereignty."  Lazarus' sisters Martha and Mary called out to Jesus as the One who had the power to heal, recognizing His dominion over everything, including life and death.  Angie wrote, "A plea offered in submission and humility to the One who holds the fate of their brother in His hands - what a beautiful image of trust."

This is the part that is really ministering to me.  Angie wrote, "What Mary and Martha say in their message to Jesus is not as interesting to me as what they don't say.  They don't refer to Lazarus by name, nor do they ask Him to heal their brother.  While we can infer that they were conveying a need for help, they don't actually ask Him to do anything specific.  This request is similar to the one that Mary, the mother of Jesus, made at the wedding feast in Cana.  We are told that as the wine started to run out, she said to Jesus, 'They have no more wine.'  She doesn't explicitly tell Him the solution she is looking for but rather states the problem and waits to see what He will do about it."

This ministered to me because ever since I have learned about Grace's diagnosis, I have prayed specifically for things based on the solution I am looking for: Grace to live and to be "normal," for her to have quality to her life, for her to know me as her Momma, and Chad as her Daddy, and to know that our love for her is forever.

Angie also wrote, "I am pretty comfortable saying He is in complete control until the ground grows weak beneath me.  At that point I tell Him what He should do to fix it.  While I know there isn't anything wrong with asking God to intervene, there is a gentle surrender that I was drawn to in this story."  She continues..."Recognize who He is - kyrios - and tell Him the problem.  Leave the rest to Him."

God, I surrender all to you.  I surrender Grace to you.  I recognize your sovereignty, your power to heal (both here on earth and in heaven), and your dominion over everything.  I trust you.  Grace, the one you love, is sick.  I leave the rest to you.

Our life...our prayer

I just wanted to post an update on Grace and her prognosis/plan. We are always learning more about what Grace's diagnosis means, and this is what we know as of today.

We met with two pediatric surgeons, as well as our genetics counselor and nurse. They confirmed with our fetal MRI results that Grace's encephalocele contains part of her cerebellum, but that there are no other known anomalies. Because of this, the probability of me delivering Grace full term and alive is good. Surgery to repair Grace's encephalocele will probably be soon after delivery.

One of our main questions today was what will Grace's quality of life be. After researching occipital encephalocele, I have learned that Grace could have severe neurological defects. Dr. L confirmed this. He said basically that Grace probably would not have much/any quality of life and probably would not know the world around her. Even though Chad and I were not surprised because of this news, it was still not easy to listen to it confirmed.

Our main prayer for Grace is that God will fulfill His purpose for her life...however long or short her precious life will be. That is our main hope. We will trust God to fulfill His purpose. Secondly, we are also praying that Grace would not suffer in her life. Because of this, the palliative team will be involved with her care. We are praying for wisdom with decisions for our baby girl.

I pray daily for a miracle (she is already a miracle!) and that Grace knows how much her Momma and Daddy love her. We love her so much. We choose to celebrate Grace's life.