Friday, December 31, 2010
Honesty
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."
Wednesday, December 29, 2010
About 10 weeks/70days to go??!!!
In MANY ways, I cannot wait to meet our baby girl and know her and love her. I cannot wait to know what she will be like. The unknown of the past months has been so hard. Just to know Grace, I cannot wait!
In other ways, I am so afraid and anxious about Grace's birth. Forget the actual birth, I'm afraid/anxious about being responsible for her life! As we continue to learn as much as we possibly can about Grace while I am pregnant with her, we continue to pray for wisdom regarding decisions for her.
More than anything, I cannot wait to love Grace...to hold her, to see her face, to care for her.
In other news...
-I passed my glucose tolerance test! Thank you for praying!
-We have a regular OB appointment this week with Dr. B, and we have an ADU appointment next week.
-We celebrated Grace this Christmas! We had Chad's family Christmas Wednesday before Christmas, and we traveled to Pontotoc to be with my family Christmas Eve after I got off work. Everyone loves Grace so much already! Aunt Lori gave her a beautiful bracelet with pearls and aquamarine (Grace's birthstone). Pawpaw and Nanny gave Grace her first stuffed animal and a recliner for her room. Aunt Kristen gave her a sweet outfit and a purple pillow pet. My parents gave Grace a diaper bag, some pictures for her room, her first ball, and a stuffed purple and pink puppy.
Please continue to pray for us over the next 10 weeks as we prepare for Grace's birth. Our lives are forever changed by our baby girl!
Wednesday, December 22, 2010
A Baby Changes Everything
Grace has already changed mine and Chad's life in ways that we could have never dreamed. I have never known love like the love I have for my baby, and I haven't even met her yet! I can't wait to meet her! My ticker says I have about 78 days to go!
Unlike any other baby, Jesus was the baby that changed, is changing, and will continue to change everything. Because of Him, we have life and can live eternally with the Father. I am so thankful for baby Jesus. My whole life has turned around. I was lost, but now I'm found.
Merry Christmas!
Thursday, December 16, 2010
Wednesday, December 15, 2010
In Whom I Trust
Hey! I just wanted to post an update on what's been going on with Miss Grace. We had an appointment today. She was so, so sweet on ultrasound today! Of course she never lets the doctors have it easy (I love it!). Her head was basically on my right hip bone! She also had her hands covering her face the entire time!! We got to see her beautiful lips and nose, but not her eyes! She is a funny and I think stubborn little girl! We love her so much! There wasn't really any new news, which is what I prayed for. She does now meet criteria for microcephaly (having a small head), which the doctors said is expected. I did read on the report that her encephalocele is 5 cm in greatest diameter (originally, it was 3 cm). The fellow also measured the area where the two bones in her head did not form like they were supposed to, which caused her encephalocele. It measured 1 cm. Dang that 1 cm! It's hard to believe that such a small area caused so many problems. We also met again with our palliative team nurse practitioner to continue to talk about goals and plans for our sweet girl. We talked about doing everything versus no heroic measures. These are certainly decisions that neither we nor any parent should have to even think about. But that is our reality now. We are praying for wisdom with decisions and are basing our decisions on Grace's quality of life. Please pray with us for the wisdom that we need. It is indescribable the amount of responsibility we feel for this little life. Her life is truly amazing, and a miracle from God!
I also had my glucose tolerance test today. After 4 rounds of urine and blood samples, I was finally finished! I felt like I got out of jail when I was done! I met my friend Anna for lunch and got something "really good fattening to eat" as my mother-in-law said! I'm not sure if anything has ever tasted so good! Thank you, Roosters. I will know results tomorrow. I am praying that I do not have gestational diabetes.
Also, we met our new OB, Dr. B, last week. We really liked her! We measured 25 weeks (2 weeks behind), and Grace's heart rate was 156-158. We are so thankful for an amazing team of medical professionals who are here with us.
Finally, we are trying our best to celebrate our baby Grace's life. If you have any comments to help with this, please let me know!
Saturday, December 11, 2010
Peace
God is giving me such peace in the unknown road we are going down. Somehow - I know with a lot of prayer by so many interceding on our family's behalf - I feel peace in my heart.
I choose daily (sometimes hour-ly, minute-ly, second-ly) to trust in the peace that God is giving me, instead of the chaos of the unknown in my mind. This is certainly not always an easy choice. But He is peace when my fear is crippling.
Isaiah 26:3 - You will keep in perfect peace him whose mind is steadfast, because he trusts in you.
Philippians 4:7 - The peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.
Wednesday, December 8, 2010
You Are All I Need
"I believe You're my healer. I believe You are all I need...And I believe You're my portion. I believe You're more than enough for me. Jesus You're all I need...Nothing is impossible for You. Nothing is impossible! Nothing is impossible for You. You hold my world in Your hands."
I have been a Christian since I was 13. I have always known that He is all I need, but I just recently have really known this. There is a difference in knowing something with your head and knowing something with your heart. To be very honest, I have felt like I need not only Him, but my husband, my family, my friends, my job, etc as well. Whenever we learned that Grace was not well, I really felt like I needed her to be well. (Don't misunderstand me...I desire Grace to be well!) I mean really, is He all I need?
I don't know if I can clearly communicate this new-found heart knowledge, but God has given me such peace in knowing that He truly is all I need. Even if everything in my life was turned upside down (I certainly feel like this is the case lately), He still truly is all I need. When all is stripped away, I know that He is still with me. He is more than enough for me. More than enough. Wow. I believe it. He is ALL I need.
Matthew 6:8 "For your Father knows what you need before you ask him."
Isaiah 58:11 "The Lord will guide you always; he will satisfy your needs in a sun-scorched land and will strengthen your frame."
Philippians 4:19 "And my God will meet all your needs according to his glorious riches in Christ Jesus."
Friday, December 3, 2010
My Jesus
Saturday, November 27, 2010
Carrying Grace
I guess I should give a brief update. We had an appointment with the ADU Wed. We got to see our precious baby girl on ultrasound. She is beautiful! The person that did the ultrasound was so sweet...she did a 4D ultrasound for us! We got to see Grace in greater detail than we have before...we determined that she definitely has my nose! She was just waking up for us during the ultrasound. She is such a sweet girl! Anyway, we met with Dr. B after who basically said no changes since our last appointment. Then we met with Ms. J from the palliative care team. The meeting was great. We did learn about another diagnosis for Grace, which is agenesis of the corpus callosum. I told J that we had never heard of this diagnosis before, either that no one has ever told us this diagnosis or we have been too overwhelmed with information/emotion that we haven't heard this diagnosis. Basically, with the two diagnoses (encephalocele and agenesis of the corpus callosum), Grace could have up to severe neurological delays. J suggested that we plan goals for the pregnancy, Grace's birth, and after Grace is born. She suggested that we plan for the best outcome, the worst outcome, and a middle outcome. I asked her what she thought about what the neurosurgeon had said the day before, and she said she thought that he focused just on the encephalocele, not on both diagnoses.
So Chad and I celebrated Thanksgiving knowing what we know. Chad said he felt angry and like he didn't have anything to be thankful for this year. Sometimes the grief we have is overwhelming. I can't say I didn't feel the same way at some points during our Thanksgiving celebration. But I chose and am choosing to be thankful for the life that is inside of me. I know it's different for Chad and me, since I am carrying Grace, but I choose to celebrate her life. She is alive. I can feel her. I am constantly reminded of her life.
I do not understand why we are having to go through this. Is there really an answer to why? But I trust that God is in control. He will carry us through this. He is carrying us through this. Because, despite what anyone thinks or says, it is only because of Him that we are able to live through this.
So even though I sometimes feel angry and like I don't have anything to be thankful for, I choose to be thankful that He chose me to carry my baby Grace. Because no one could love her like I love her. No one else could be her Momma. I pray that He receives the glory.
Wednesday, November 24, 2010
Beautiful
Tuesday, November 23, 2010
Thanksgiving
I spoke with a neurosurgeon today, who basically gave me the only positive news that we have received since Grace's diagnosis. Let me preface this by saying that I am a very realistic person. I am also a planner. Throughout all of this, I have wanted and continue to want to prepare for the worst possible outcome. My faith allows me to believe in miracles and to have hope. But today, I received reasons to believe in miracles and to have hope from a medical perspective.
The neurosurgeon basically said that because Grace is and will continue to develop throughout the remainder of my pregnancy, we will not know for sure what we are dealing with until after she is born (she will have an MRI after she is born to determine exactly what we are dealing with). He also said that Grace's encephalocele is small, and it contains a small portion of her brain, (her cerebellum) as well as cerebrospinal fluid. He said that the amount of brain involved in the encephalocele can change, meaning the amount can get smaller or it can get larger as Grace develops.
The current plan for Grace after she is born is to have surgery to repair the encephalocele, and most likely to have a shunt to correct her hydrocephalus.
The neurosurgeon said that Grace could have up to normal functioning (today was the first time I have been advised of this possibility). His advice was to prepare for the worst, but to hope for the best. Now I know--from a medical perspective--what the best could be.
Please pray for the best outcome...
-that the amount of Grace's brain involved in the encephalocele will get smaller, even that no amount of brain will be involved
-that the part of Grace's brain that is involved in the encephalocele will be functioning
-that Grace's functioning will be normal
-that our God will heal Grace, that He would continue to fulfill His purpose for her life, and that He would continue to draw us and others nearer to Himself
Thank you so much for joining us in prayer for our baby girl. We are very thankful that you would choose to pray for us and to love our baby girl. Thank you is not enough.
I am thankful for Grace's medical "team", reasons for hope, the prayers of so many family and friends, my supportive husband Chad, and of course our very special baby Grace. We are so blessed.
Please also pray for us as we have another appointment with the ADU tomorrow. I know we will have another ultrasound (!!!) and will meet with the palliative care team. I'm not sure what else our appointment will involve.
Sunday, November 21, 2010
"The Lord is close to the broken-hearted and saves those who are crushed in spirit."
Friday, November 19, 2010
Desperate Love
Last night was hard. We grieved like we haven't before. I asked WHY...why if God could let this happen to our baby girl...the baby we desperately wanted and waited for (the baby we continue wanting and waiting for)...why He can't just fix it? WHY?
Then I realized that He CAN fix it. He is the One who CAN. I don't understand why He hasn't, and I won't understand if He doesn't, but maybe I'm not supposed to understand. I'm supposed to trust. I trust Him. I will trust Him. Because He made Grace fearfully and wonderfully. Because her frame was not hidden from Him. Because He was not surprised.
From Angie Smith's "I Will Carry You": "...in this life, on this Earth, I am going to hunger. The hunger will not be satisfied. It cannot be. And when the wind blows through my soul and tempts me to despair over the lot I have been given, I cling to the truth that the Lord has something better for me. It won't always be like this. You will know Him fully one day, and all the hurts that consume you in this moment will vanish and be forgotten. I know it sounds crazy. I guess it's crazy to think that a God could love us so much that He would want to create a place to be with Him eternally, where we can revel in His perfection and rest in true peace."
Isaiah 43: 1-3 "But now, this is what the Lord says - he who created you, O Jacob, he who formed you, O Israel: 'Fear not, for I have redeemed you; I have summoned you by name; you are mine. When you pass through the waters, I will be with you; and when you pass through the rivers, they will not sweep over you. When you walk through the fire, you will not be burned; the flames will not set you ablaze. For I am the Lord, your God, the Holy One of Israel, your Savior.'"
My heart is full of desperate love for Grace.
Wednesday, November 17, 2010
String of Pearls
My heart is blessed because of a Momma named Laura Huene, founder and president of String of Pearls. String of Pearls is "a non-profit dedicated to providing a nurturing and safe place for families as they navigate the path following a fatal prenatal diagnosis that will result in the death of their baby prior to, or shortly after birth." Today, I received a keepsake kit from String of Pearls that will help us celebrate the life of our sweet baby girl Grace. Their services are provided without cost! Please join me in donating in honor of Grace to String of Pearls (www.StringofPearlsOnline.org or PO Box 630454; Littleton, CO 80163-0454). Thank you to Laura and String of Pearls!
Also, please pray for us tomorrow as we see Dr. M for the last time! We are sad, but want to do everything we can for our baby girl, so we will be changing to see a new obstetrician, Dr. B, so that Grace can be delivered at UMC.
Tuesday, November 16, 2010
Update!
OUR MICRO ARRAY WAS NORMAL!
We are so thankful to our God for answering this prayer! I think throughout all of this, the only positive news we have received was that our amniocentesis and micro array were normal. This means that Grace's condition is not genetic, and that the chances of our future children having encephalocele or any other genetic problems is rare.
Thank you so much for continuing to pray with us and for Grace and Chad and me, our family, and our friends as we continue to live this life.
All of the praise and glory belongs to our Father.
Thursday, November 11, 2010
John 11
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.
Wednesday, November 10, 2010
Death and Life
Sunday, November 7, 2010
Church
Friday, November 5, 2010
Healing is in your hands - Christy Nockels - Passion 2010
Thank you, Emily.
Thursday, November 4, 2010
Draw Me Nearer - Meredith Andrews
For your nearness, Lord, I hunger
For you nearness, Lord, I wait
Hold me ever closer, Father
With such a love I can’t escape
For your nearness I am hoping
For your nearness, Lord, I long
I have no need of any other
I have found where I belong
Yes, I have found where I belong
So draw me nearer, Lord
Never let me go
Closer to your heart
Draw me nearer, Lord
Draw me nearer, Lord
In your nearness there is healing
What was broken now made whole
Restoration in its fullness
Lasting hope for all who come
In your nearness I take shelter
Where you are is where I’m home
I have need of only one thing
To be here before your throne
To be here before your throne
So draw me nearer, Lord
Never let me go
Closer to your heart
Draw me nearer, Lord
Draw me nearer, Lord
Never let me go
Closer to your heart
Draw me nearer, Lord
Draw me nearer, Lord
And keep me here
Keep me here
There’s nowhere else I’d rather be
So keep me here
Keep me here
There’s nowhere else I’d rather be
There’s nowhere else I’d rather be
So draw me nearer, Lord
Never let me go
Closer to your heart
Draw me nearer, Lord
Draw me nearer, Lord
Draw me nearer, my Lord
Our life...our prayer
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.
Today
-"God's plan and His ways of working out His plan are frequently beyond our ability to fathom and understand. We must learn to trust when we don't understand."
-"We must learn to trust God if we would glorify God in them [circumstances]."
Psalm 50:15:
And call upon me in the day of trouble; I will deliver you, and you will honor me.
Thank you for your prayers today!!
Wednesday, November 3, 2010
First Post!
"Come to me, all you who are weary and burdened, and I will give you rest. Take my yoke upon you and learn from me, for I am gentle and humble in heart, and you will find rest for your souls. For my yoke is easy and my burden is light."
I Will Lift my Eyes - Bebo Norman
I will lift my eyes to the Maker of the mountains I can't climb. I will lift my eyes to the Calmer of the oceans raging wild. I will lift my eyes to the Healer of the hurt I hold inside. I will lift my eyes to You.