One Year

One year ago today, our world stopped when we learned something was wrong with our baby girl.  I remember the day so perfectly.  I remember I wore a pink top and Chad wore a blue striped shirt.  We were SO excited to find out if our precious baby was a boy or a girl.  We had our gender/anatomy ultrasound before we met with Dr. M.  I really thought it was a boy, so I was very surprised to learn that it was a GIRL!  We waited in the waiting room after the ultrasound and showed off pictures of our sweet girl to the others waiting.  Everyone was so excited and sweet to us, as we were glowing with excitement.  We could NOT stop smiling!

I remember Dr. M's face when she walked into the exam room.  I didn't immediately think something was wrong (I think I was in denial).  But she quickly told us that our perfect baby was not healthy.  I remember immediately crying and covering my mouth in disbelief.  I remember crying so hard I had to lay down so I would not faint.  I remember Chad and Dr. M holding my hands.  Dr. M prayed with us, and recited Jeremiah 29:11.

I remember crying in the waiting room uncontrollably as I waited to have more labs taken, while other moms were so excited and happy with their babies safe in their pregnant bellies.  I remember thinking why hasn't the world around me stopped, because my world certainly had.

I remember being in total shock as we walked to my car.  We sat there and cried as we called our families with the news.  Lunch even seemed like an impossible task.  It was so hard to believe that everyone else was going on with their "perfect" lives, while ours had just fallen apart.  The cars went by so fast.  Everyone was in a hurry.  I was frozen in panic.

We made it home somehow and just sat there.  We didn't know what else to do.  I know I've never cried so much.  We initially were going to have to wait until the next week for our level 2 ultrasound with a specialist, but thankfully (and I know because God was at work), we were able to get an appointment the next day.

It seemed like the seconds were going by in slow motion.  We decided to pull the guest bed mattress off the bed and put it in the living room floor, so we could sleep with the TV on as a distraction (we didn't have a TV in our room).  I remember we watched Bizarre Foods all night.  I prayed off and on all night as we waited. 

The morning finally came, and we found ourselves at Dr. P's office.  After a lot of questions and a very detailed ultrasound, we were given the worst possible news: our little girl had an encephalocele.  It contained part of her brain.  Although they did not think based on the ultrasound that the condition was genetically-related at all, Dr. P recommended an amniocentesis and some more labs.  We were told our precious baby would either be stillborn or live with severe disabilities.  We were given the option to abort.  However, there was no hesitation to choose life for our precious little one. 

Fast forward through 19 weeks of grief, preparation, celebration, tears, and hope, and on March 4, 2011, I held my precious baby girl Grace in my arms.  It was instant and the most intense love I have ever known.  I can't even put the feeling into words.  I'm sure all you mommas know what I'm talking about.  The second I saw her, I loved her more deeply than anything I ever had before.  It brings tears to my eyes to think about that moment.  I will NEVER forget it.

Fast forward some more, and now we have a 7 month old.  A 7 MONTH OLD!!!  Where has the time gone??  I'm not sure, but I have LOVED every moment of being Grace's momma.  I am SO thankful...beyond words...that I get to be her momma and that she gets to be my baby.  She has taught me so much about love, life, faith, surrender, joy, possibilities, hope, and perspective.  My life has been changed because of her.  And she doesn't even know it.  :)

So why do I keep reliving this day?  Because this day and the days and months after it CHANGED MY LIFE.  I have never been closer to my Father.  He carried me through the darkest days of my life.  He reminded me that He was in control and that He would never leave me.  He gave me strength and showed me so much love and grace.  My faith grew, deepened, and strengthened in amazing ways.

I wish no one ever had to go through this.  This was definitely the hardest thing I have ever had to live through.  I know there are other things that people go through that are much worse than this.  But if you put it into perspective, whatever anyone has to go through is the hardest thing they have ever had to live through.  It's all relative.  You can't compare.  So I'm here today to testify that God will carry you through it.

When you pass through the waters, I will be with you.  And the waves will not overcome you.  Do not fear, for I have redeemed you.  I have called you by name, you are Mine.  I am the Lord.

Here is a ultrasound picture of Grace from that day:

And here is Grace one year later:

Beautiful Heart

This is a picture from our first ultrasound with Grace!  I love it!  You can clearly see her heart, and I remember being able to see it beating at that appointment when I was seven weeks pregnant.  That was one of the best moments of my life.

One of the things many of the doctors commented about, even after the diagnoses of the birth defects, was her "beautiful four chamber heart".  I always loved when they said that, because I knew she would have a beautiful heart, both literally and figuratively.

My baby girl is beautiful, heart and all!  :)

"You hem me in - behind and before; you have laid your hand upon me.  Such knowledge is too wonderful for me, too lofty for me to attain."  Psalm 139: 5-6

Our Gift

I'm linking up with Kelly's Korner blog for her "Show Us Your Life" post on special needs families.  Mostly, I just hope to help families with babies with the same/similar diagnoses as Grace.  I know personally when I was pregnant with Grace and we first found out her diagnoses, I was absolutely desperate to find other families of babies with the same diagnoses.  So here's the story of our precious gift, Grace Elizabeth.

We had been married for six years when we found out we were pregnant with our first baby in July 2010.  I had the perfect pregnancy, and I LOVED every minute of it!  Everything was going great with no complications.  Until October 21.  We went for the "big" ultrasound to find out gender and that our baby was perfectly healthy.  I will never forget that day.  We had our ultrasound and, to my surprise, we found out we were having a girl!  I was so excited!!  Chad had really wanted a boy, but was also excited about the baby.  Nothing else about the ultrasound was remarkable to me.  I do remember the person doing the ultrasound never said she was healthy, but I really didn't think much of it.  To be perfectly honest, I never even had a second thought about the health of our baby.  We waited to see our OB, and shared our pictures and news with the others in the waiting area.  Everyone was so excited for us as well.  They finally called us to our room, and Dr. M walked in shortly, and our hearts literally broke as she immediately said there was something wrong with our precious baby girl.  I started crying uncontrollably and had to lay down so I wouldn't faint.  Dr. M said she wasn't exactly sure what was wrong, but that our baby probably had either a cystic hygroma, Turner syndrome, or (the worst) an encephalocele.  Dr. M prayed for us and shared in our grief.  She referred us to a maternal-fetal specialist, who confirmed our worst fears with the diagnosis of an occipital encephalocele the next day.  The prognosis was poor.  We were told that she would probably not live long, and that if she did, she probably would not have any quality of life.  The exact words of one of the surgeons was that "she probably won't ever know the world around her".

The next 20 weeks of the pregnancy were filled with grief, love, prayer, and celebration for our precious daughter.  We had many doctor's appointments, and Grace was also diagnosed later with microcephaly and agenesis of the corpus callosum.  After much prayer, we decided to have a C-section and to make Grace a DNR.  Grace was born March 4, 2011, and to our doctors' surprise, she was alive and well!  You can find her birth story here.  She was a fighter from the first second of her life!  Our love for her was instant and more than I could have ever imagined.  She had surgery to remove the (large) encephalocele and about 10% of her cerebellum when she was 5 days old.  She came home when she was almost 2 weeks old.  She developed hydrocephalus, and had a VP shunt placed when she was 2.5 months old.

She is now a little more than 3 months old, and she is doing really well!  She has some developmental delays, but we hope to start physical and occupational therapy soon.  Grace's neurosurgeon is surprised and very pleased with how well she is doing!  He says that we will not know the full story on her delays until she is a little older.  He predicts that she will mostly have problems with her motor skills.

I feel chosen and blessed to be Grace's momma.  I thank God everyday for her life and the miracles He has done.

Waiting

By this time tomorrow, I will know my baby girl Grace!  I still cannot believe it!  Many, many people from all over the world are praying for our family, and we are so thankful.  I just wanted to post our latest pictures of our family :)

Daddy and Momma :)

39 weeks!

 36w4d - getting chubbier and chubbier :)

 37w4d - sweet lips!

 38w4d - one smushed little girl!

Birthday Week

Happy birthday week, my sweet Grace!  Your daddy and I are celebrating you this week as we wait to meet you Friday!  I cannot believe we are so close to getting to meet you and see your sweet face!  We are praying extra for you this week, that God would continue to use your life to give Him glory, and that He would heal you.  We pray that He would guide us as your parents as we make further decisions for you after you are born.  We pray that God would be with your "team" of doctors, nurse practitioners, nurses, etc, and that He would be with our family and friends as they can't wait to meet you.  We pray for continued peace throughout the week as we prepare for you.  We pray that we will get to spend the most time with you as we can, as we celebrate your precious life.  Most importantly, we pray for God's will to be done through our family.

I feel so blessed to be your momma.  I feel chosen.  Thank you for changing my life.  I love you to the moon and back!

One Week!

I cannot believe by this time next week, Chad and I will meet our precious baby girl Grace!  We are excited as we prayerfully await her arrival.  We have been her parents now for 38 plus weeks, and are so excited to see her face next Friday.  Please join with us as we pray for her, all of our team of doctors, nurse practitioners, nurses, etc., and our families and friends as we prepare to meet this sweet girl.

We are scheduled to check in at 6:00 am next Friday, March 4, for our C-section at UMC.  The rest that will happen that day is unknown to us, but we know that our God knows exactly what will happen.  We trust that He will guide us as we long to make the best decisions for Grace as her parents.  We know that He will be near to us throughout it all.  We have found peace in His presence and power.

Thank you is inadequate to express our gratitude for all of your love and prayers for us during the past few months and in the coming weeks and months.  Literally, I don't know how to thank you.  We are truly blessed to have an amazing group of people praying on our behalf.  We pray that somehow you will know how much your care and concern means to us.

From the bottom of my heart, thank you.

Family Photos

Andrea Reed with Now I Lay Me Down To Sleep came to our home a few weeks ago when I was 33 weeks pregnant to give us family photos.  NILMDTS is an amazing foundation...there is a link to the website on the right side of my blog.  The photographers donate their gifts to families like ours.  Consider donating to support their mission.  We will be donating in honor of Grace, as well as Andrea our photographer.

Here are a few of my favorite photos...

I love this quotation from the NILMDTS website: "Dearest Baby, may you know, our greatest blessing was having you."  Grace, you are our greatest blessing.

35 weeks!

Our Gracie girl is 35 weeks today!  I cannot believe that we will meet her in about 4 weeks!  We will have a C-section either March 3 or 4, unless of course she decides when she wants to meet us!  We are both excited and afraid.  Excited to meet her and see her and LOVE her!  Afraid of further decisions we will have to make and what her life will be like.  We continue to pray for wisdom with decisions.  We trust that God is with us, and that He will carry us. 


From "Unredeemed" by Selah:

Life breaks and falls apart
But we know these are
Places where grace is soon to be so amazing
It may be unfulfilled
It may be unrestored
But when anything that's shattered is laid before the Lord
Just watch and see
It will not be unredeemed 


Here are some pictures of our precious baby girl!  We love her so much!!!

We love you, sweet girl, and are amazed at how your life is changing the world!  Your momma and daddy cannot wait to meet you and kiss your chubby cheeks! You never know the miracle the Father has in store.

Decisions

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

Celebrating the Life of Grace

Saturday, my dear friends Anna, Leanne, and Hart helped me with family and friends celebrate the life of our precious Grace Elizabeth.  This celebration replaced a typical baby shower for Grace.  Before we knew of Grace's diagnoses, my friend Anna had wanted to give us a baby shower, but after learning of Grace's diagnoses, I had decided not to have a baby shower for various reasons.  Mostly, I didn't want to ask others to give us lots of things that we may not need, and since Chad and I don't have a big house, I also didn't want to later have a lot of baby things that we didn't need and be unable to store all of it.  So for these and other reasons, we decided to have a "celebration of life" for Grace.  Words are inadequate to thank Anna, Leanne, and Hart for blessing Grace and me in this way.  I am so thankful that so many people who love Grace were in one place!  Anna prayed, and we all spent time together eating brunch, looking at Grace's ultrasound pictures, and making memories.  Many people wrote a prayer, a blessing, or an encouraging word for Grace and me.  I will treasure these always!  Many people also gave gifts, which I opened later, and I am amazed at the amount of love for our baby.  Thank you will never be enough.  I gave everyone purple Christmas ornaments to let them know how thankful I am for their prayers and love for our family and that they forever will be a part of Grace's life.  Here are some pictures:

Anna, me, and Leanne

Hart and me

Grace's wreath

Purple Christmas ornaments

My mom Patricia, me, and my sister Kristen

Chad and I continue to celebrate Grace.  We also continue to pray for a miracle.  A friend of mine recently gave me an encouraging message, and it perfectly described what a miracle means.  She said she is praying for us and for a miracle for Grace "whether that be her healing or for many people to see God's grace and mercy and salvation through a difficult and painful situation".  This is my prayer also. 

Precious Baby Girl

We got to see our precious Grace yesterday via ultrasound!  It was Chad's birthday also...what a great birthday present!  She is beautiful!  We are amazed at her beauty.  We love her so much and can't wait to meet her!

We are still struggling with making the best decisions for Grace, as well as trying to hang in there because so much of this is unknown and will be unknown until Grace is born.  She is 31 weeks old today.  Praise God for miraculous life!

I love this picture!  Grace gave us the peace sign!  We are praying for peace with decisions and in the middle of so many unknowns.  Grace was saying to her Momma and Daddy "It's ok...I'm ok!"  

She is perfectly beautiful!

I just want to kiss her sweet cheeks!

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."

About 10 weeks/70days to go??!!!

Oh my...tomorrow, I will be 30 weeks.  30 weeks!!!  When did that happen??!  That means in 10 weeks (70 days) or LESS, Chad and I will meet Miss Grace Elizabeth!  My heart is full of joy!  And fear.  And love.  And anxiety.  Oh my.

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!

Chad and me

My sister Kristen and me

 A white Christmas!

28 weeks

Hello, third trimester!

In Whom I Trust

"I will say of the Lord, He is my refuge and my fortress, my God, 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!

Carrying Grace

We got back tonight from our Thanksgiving celebrations.  I worked Thurs from 7-3 while Chad celebrated the holiday with his family in Magee, and as soon as I got off work, we went to Pontotoc to celebrate with my family.  It certainly wasn't the same this year as years in the past.  Chad and I have a different perspective now with all that has happened in our lives over the past few weeks.

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.

Beautiful

 

Before you ever took a breath

Long before the world began

Of all the wonders He possessed

There was one more precious

Of all the earth and skys above

You're the one He madly loves

Enough to death

You're beautiful

You were meant for so much more than all of this

You're beautiful

You are treasured, You are sacred, You are His

You're beautiful

Thanksgiving

I just wanted to post some updates and ask that you continue to please pray for Miss Grace.

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. 

Desperate Love

Yesterday, we had our 24 week appointment, and as I drove to the appointment, I realized that it was only 1 month ago that we learned Grace's diagnosis.  It feels like it's been 10 years since then.  All of the emotions of that day quickly came back to my mind.  I wish I could LIVE in the moment of learning that our baby was a girl--when we knew that she was PERFECT--before we knew that something was wrong.  I wish I could live in that moment forever.

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.

Update!

This post is an update to a prayer request.

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.