Psalm 139:13-16

"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."

Thursday, January 20, 2011


Yesterday, we had an appointment with Dr. B in the ADU for a biophysical profile (BPP).  The biophysical profile is an ultrasound that looks at fluid, breathing, movement, and tone.  Everything was fine.  We will now go weekly to the ADU for BPPs, and we will also start going weekly to our OB (the other Dr. B) for BPPs.  Basically, they are looking at viability.  The only other thing we learned was that Grace is breech!  I love her personality!

We also had an appointment with our palliative care nurse practitioner and doctor (another Dr. B).  We talked about many things, and started working on a care plan for Grace.  We made all the decisions we need to make up until Grace is born.  I feel like I should preface this by saying that Chad and I have mulled over these decisions for three months now.  We are the type of people that look at consumer reports just to buy a camera.  So needless to say, we have prayed many, many prayers, along with many others, about the decisions we would have to make for our precious baby girl.  These are the hardest decisions we have ever had to make.  You may not understand them, but they are the right ones for us and for Grace.  We pray that you will understand our hearts.  Every decision that we made is based on what is best for Grace and her quality of life.

-We decided to have a C-section delivery.  I will only have an epidural so that I be as awake/aware as possible.  I want to spend the most time that I can with Grace.
-We decided to make Grace a DNR (do not resuscitate).  This means that if she is born not breathing or without a heart beat, we will not have anything done to resuscitate her (no CPR, no meds, no intubation, no mechanical ventilation).
-Grace will most likely have an MRI shortly after birth, and if we decide yes to surgery, she will probably have surgery to repair the encephalocele the day after she is born.  (Can I just say I HATE the word encephalocele??)
-We also talked about funeral options if Grace does not live.  We haven't made these decisions yet, but we just want to have those plans taken care of so that we do not have to make those decisions later. 

God has given me such peace that these are the right decisions.  I am so thankful for that.

"And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus."  Philippians 4:7


  1. Karen, I know Grace and Sawyer are different but I have been in that same room having that same conversation. I know it is an awful spot to be in and you just want to say, "okay, you can stop joking now" and you wish you could walk out and wake up from this bad dream.
    Your decisions are the best for Grace. YOU know what feels right and that's all that matters! I am praying so hard that she will come out screaming and perfect! Dr. B (ADU) is the best BUT God is the Almighty healer!

  2. Praying for you and your family - you seem like such a strong woman and wonderful mother!

  3. I found you through kelly's korner. :) I just wanted to pop in and say I will be praying for you...we were in a similar situation with our daughter, and I ache remembering the pain of going through a pregnancy not knowing what the outcome would be. My heart hurts knowing what you're experiencing right now. I'm sorry you're traveling this journey, but I am inspired by your faith!

  4. I found your blog by accident because our blog titles are so similar, mine is 'our gifts of grace'. It is about our daughter Grace Elizabeth who is significantly mentally and physically delayed. Our daughter was adopted from Guatemala, she had 'something' happen to her between her 5th and 6th months of live that caused what we believe is brain damage.

    Anyway, I just wanted to comment because of the similarities and let you know I will pray for you, Chad and Grace. I can't imagine how painful these decisions must be. Blessings, Anne

  5. I will keep you and your sweet family in my prayers. What a wonderful way to celebrate your sweet baby girl! God is Good.

  6. I am in awe of the beautiful decision you are making for your daughter. God bless you! We will be praying.

  7. I really wish I had appropriate words to express, or better yet, I wish I had words to make a moment of this better for you. Grace certainly is a lucky little girl to have you as her Mommy, just as you are so incredibly lucky to call her your daughter. Keep your head up... the sun is brighter that way! :)

  8. U should look at there blog it sounds like might be in the same boat but they will make u have hope

  9. I came to your blog through Kelly's Korner and your story really touched my heart. My husband and I too had to make some hard decisions before the birth of our daughter Emma Noelle. Twenty-two weeks into my pregnancy with her the doctors found many abnormalities on ultrasound. We were told that abortion would be the best option. We chose life for our baby girl. Only she and God would decide how long her life would be. We planned on loving her for as long as we could on this Earth. Plans were made and so were many hard decisions. Many people did not agree with our choices but we did what we felt God was leading us to do and what was best for Emma. On December 1, 2004 Emma was born crying and breathing which no one thought she would do. She was immediately diagnosed with a very rare syndrome called MIDAS syndrome and the diagnosis of HLHS was also confirmed. We were very encouraged with her prognosis because of how well she seemed to be doing. Sadly when she was 2 days old the doctors told us that they had decided that she was not a suitable candidate for surgery to fix her heart. They said that they could try to help us find a doctor to do the surgery but that most likely no one would do it. They said that most likely Emma would not make it through the many surgeries that would be necessary anyway. We decided to let her pass away peacefully rather than on a cold operating table. We were able to take her to our room and spent 2 more wonderful days with her before she passed away peacefully in my arms. The 4 days that she lived were the best days of my life. Although they were also the hardest and saddest days too I would never give those days up. I am so glad that we chose life for our daughter and got to spend time getting to know her. I understand the place where you and your husband are now. You are praying for the best but still having to prepare for the worst. No parent ever wants to have to make the decisions we have had to make. I pray that you will feel peace about your decisions and with whatever may happen before and after you daughter's birth. I pray for a miracle for your baby girl because I still believe that God can perform a miracle. I pray that you will get time with your daughter...time to hold her and get to know her. You will constantly be in my thoughts and prayers. If you ever need someone to talk to who has been where you are please feel free to e-mail me at There are so many times I wished that I had someone to talk to who could understand what I was going through at that time. There are also things that I wish I could go back and do while Emma was still here with taking video, more photos, hand and foot print impressions, etc. If only someone had been there to help me think of those things. I think the most important thing is that you seem prepared for anything that may happen and you have made the right decisions for Grace and your family. Good luck and God bless. ~Melissa Moss

  10. I just read your entire blog and I want you to know I am praying for you. I admire your strength and your faith in God. My husband and I lost our son almost a month ago. We knew that he had a few birth defects, but did not expect him to be premature. He was born 13 weeks early with several different birth defects. He fought a good fight for 11 days and then we were faced with the toughest decision of our life. We chose not to let our Gavin suffer. This is the toughest thing that I have ever been through in my life, but I also have peace because I know Gavin served his purpose on earth and is now in Heaven and he is perfect. I continue to see and hear how Gavin has "touched" other people. My heart aches for you and I want you to know that you and your sweet Grace will be in my daily prayers. Melissa S.

  11. I found you through Beth at At His Feet. Will be praying for ya'll. I can't even begin to imagine what ya'll are going through but God knows. But I do know that our God is a God of miracles. My step-son was in a car accident this past July and had severe head trauma. Today he is fine other than the scars to remind him of God's miracle in his life. Then in December my MIL had a stroke that the Doctors said would leave her blind, and now we spend most days watching tv together. She's still not 100% but everytime we go to a Doctor their so amazed at her progress.

  12. I came across your blog through Kelly's Korner...We also have a beautiful Grace Elizabeth. She is 6 years old. She is the most beautiful, upbeat, positive little girl. It will be easy to remember to pray for your Grace Elizabeth and we will do so as a family.

    Jen in Connecticut

  13. Blog hopping from Kelly's Korner.

    I am praying for you, your husband Chad, and your sweet, beautiful daughter Grace Elizabeth. From one Mama to another, know that my heart hurts for yours, but the Grace of our Lord is sufficient, always.

    Also wanted to pass along another Mama's blog, for encouragement:

    Her son Joshua was born with encephalocele and lived for 67 beautiful days.

    Hugs and love to you from Michigan!

  14. I found your blog on Kelly's Korner and just wanted to let you know that I will be praying for you, your husband, and sweet baby Grace.

    Your story really touched my heart because my cousin dealt with difficult news while she carried her son. At around 3 months, she was told that her baby boy did not have a brain. Then it was revealed that he had severe Spinabifid. Later it appeared that he did have a small brain, but doctors said he would likely not survive to be born. They said if he did survive birth, he would be paralyzed and have no quality of life at all.

    My family and I prayed so hard for this child and for Hollie & Chase as they dealt with such heartbreak. We prayed for God's will no matter what.

    Logan did survive birth and did have Spinabifida and required surgery immediately. But he was not paralyzed - even after surgery. He has an excellent quality of life! He will be 2 in April and is just now trying to take a few steps on his own...yes, that's right...he will walk one day they think! He doesn't talk right now, but therapists think he will in time. For now he is learning sign language to communite, and let me tell you, he is so intelligent!

    God is an awesome God! He chose not to heal Logan completely, but he performed so many miracles on that baby from the time of that first sonogram. Hollie is a nurse and could see the same things doctors saw, but even the doctors had to admit the miracles taking place.

    So keep praying and don't give up on your miracle.

    I wish I had blogged every step of this journey for Hollie, but you can read some of it and see Logan's pictures if you go to my blog. On my current blog, you will see a link to my ministry blog - God's Gals Ministries. Look at the labels: click on "Logan" and read all about this precious boy. I hope his story will encourage you.

    God bless you on this journey.

  15. Hi. I'm visiting for over at Kelly's Korner too : )
    I just wanted you to know that I've been praying for baby Grace. God has put her on my heart in the deepest way and I will be praying for you and for her throughout the rest of your pregnancy and the birth of your precious baby girl. I can't explain why, but I feel God pressing me to tell you that everything is going to be okay. That He is working behind the scenes in and through your circumstances and in ways that we will never be able to see with our human eyes. Don't give up hope for Grace. Our faith can move mountains.