We've chosen a name!!!

About a month ago, a name popped into my head. I didn't really know where it came from or why. Bryan and I had picked a name about 3 months ago but decided that we would like to pick something a little more meaningful than our first choice. We felt like this little girl needed a name that really represented who she is and what she is doing in our lives.

I was talking with a friend that has become very close to me recently and she mentioned something that I had never thought about until she mentioned it. Our little girl has been diagnosed with Potter's Syndrome. In the bible, God has been compared to a Potter and we are the Clay.

Isaiah 64:8 (New International Version)

⁸ Yet, O LORD, you are our Father.

We are the clay, you are the potter;

we are all the work of your hand.

Wow, How amazing!!! We must not only submit to the ways of the Lord, but also to His prescribed means. The Lord says He wants us to be as clay in His hands. Think how a potter will take the clay in his hands, work it, roll it, and shape it according to any design he wants. So, I am trusting that the ironic name of her syndrome indeed is related to HIS works. He, as the Potter, is molding us into exactly what he wants and using us as the clay to spread HIS word.

The name that popped into my head was Eden Grace. I decided to look up the meaning of each name immediately.

Eden means the following:

1. A delightful place; a paradise.
2. A state of innocence, bliss, or ultimate happiness

Grace means:

1. Blessing

2. Good will

3. Favor, Thanks

Another interesting thing from my past is the church that I was raised in from the time I can remember. I was saved and baptized at this small church in Longview. The preacher of the church lived next door to us and our families were very close for many years. The pastor had a passion for this church and the people of our community that I didn't understand at the time. The name of the church started out as Eden Drive Baptist Church. They kept that name for a few years and then decided after much thought to rename the church to Grace Church.

It's interesting to me that my Potter has brought me back to a place that is much like the beginning of my life. The beginning of the world as we know it was also in Genesis and the Garden of Eden. I am now doing what my family was committed to doing in a similar community. My Potter has put me and my baby Eden at a small church in a small community. I have been blessed with feeling as though I am in a time of pleasure. Our number one focus should be HIM. That will give us pleasure.

I had asked my mom what she thought of the name Eden Grace and how it related to what we are living now. She said, "So I guess I see all of this as more of a current thing....Baby Girl will always be in a state of innocence. Going from her safe momma cave straight to paradise, and if she's really lucky, into a delightful "Jackie hug." : ) Never experiencing this fallen place. It's her own story." (Jackie Burnett was an amazing lady that I grew up with at Eden Drive, Grace church and then at Fellowship Bible Church. I don't remember a time that I didn't know her. She was someone that you always felt like you were safe and happy with. She didn't let you out of her presence without giving her a BIG hug. I was very lucky to know her and George. Jackie passed away last year and has been greatly missed by so many people. But, she will be there to give Eden Grace a big hug and I have much comfort knowing that.)

Doctor's visit

We went to see Dr. Natour on Wednesday, May 19th. I am approximately 24 weeks now. Of course, we prayed for a miracle but we didn't see one. Dr. Natour has really been a true Godsend. She answers all of our questions with patience and sincerity. If she doesn't know the answer, she finds out for us. She did a sonogram and things had changed a little. Baby girls kidneys have grown to cover the span of her ribcage, so about the same size of her entire tummy. We could see the pockets of fluid in the cysts covering the kidneys. There is still little to no fluid surrounding her tiny body. (In the picture above, the ribcage can be seen in this direction (<) and the right kidney can be seen.) Poor little girl has no idea that everything isn't normal. She is kicking and punching around in there like crazy. So at least she seems happy. She is breech right now and Dr. Natour doesn't expect that she will turn around on her own. Therefore, it appears that I will most likely have a C-section when the time comes. We asked if we could donate her organs and will be finding out the answer to that soon. Dr. Natour wasn't sure if the kidneys might be toxic to the other organs, which would make them useless to another baby. I thought I would be a little more upset than I was but it was actually very exciting to see her on the monitor. That's our little baby and these are some of the few pictures we will have of her for our lifetime.
Bryan put it best, "When I am able to think really clearly,
I realize Eden's little body/life is not ours. None of our lives are ours.
God needs her now. For Him to take a life this soon means he really
needs her for greater things. Plus we will get to see her again when
we are lucky enough to be brought into Gods kingdom. We should feel
honored that OUR baby is being chosen to be by His side.
She's THAT special!!"

This verse has really helped me lately.

Isaiah 41:9-13 (New International Version)

⁹ I took you from the ends of the earth,
from its farthest corners I called you.
I said, 'You are my servant';
I have chosen you and have not rejected you.

¹⁰ So do not fear, for I am with you;
do not be dismayed, for I am your God.
I will strengthen you and help you;
I will uphold you with my righteous right hand.

¹¹ "All who rage against you
will surely be ashamed and disgraced;
those who oppose you
will be as nothing and perish.

¹² Though you search for your enemies,
you will not find them.
Those who wage war against you
will be as nothing at all.

¹³ For I am the LORD, your God,
who takes hold of your right hand
and says to you, Do not fear;
I will help you.

In verse 10 alone, the Lord promises strength, help, and protection. He gives two commands: "do not fear" and "do not anxiously look about you." Among Satan's subtle and successful traps is the art of distraction. The Evil One knows that fear can choke faith. He works hard to make unsettling circumstances a person's sole focus. Once a believer's attention is diverted from God, natural human tendencies take over. In the absence of prayer and worship, anxiety and doubt grow unobstructed.

Staying focused on God can be hard. The flesh prefers to seek security by thinking through all possible angles: our tendency is to weigh what we think could happen against what "experts" say will happen, and then to evaluate possible ways of preventing our worst fears from coming true. Instead of becoming more confident, we begin to realize how powerless we are.Thankfully, we serve an almighty God who says, "Surely I will help you" (v. 10). You can count on Him.

Your Hands - JJ Heller

How did we get here???

If your life was like a painting, the strokes that are being 

added to the canvas today may not make much sense when 

viewed alone.  However, God doesn't waste any strokes...

for He sees the final picture... You may think the color being 

used today is too gray...(but) the time will come when you 

will see that...the meaning of the painting would be weakened 

if the gray strokes were not included in the exact places they 

appear.

I wanted to start this blog so that family and friends could follow Bryan and me through our journey of faith through the biggest trial we have faced in our short lives. I've never been one to share much about myself or things I am going through. I've always been a little shy and frankly didn't think anyone really cared about what I had to say. God has been nudging me to start this blog for the past couple of weeks. As I was reading my Bible last night, it became very clear that He was telling me not to wait any longer.
So, here is the rundown. Bryan and I have been trying to have a baby for a little over a year now. I first got pregnant in March '09 and had a miscarriage at 10 weeks in May '09. I got pregnant again in Sept. '09 and again had a miscarriage in Oct. '09. Each time it was difficult but I knew that God had a plan and he was saving me from something that could have been much worse. I definitely trust his perfect plan. We stopped 'trying' to get pregnant and guess what; I got pregnant in December '09. This was it!!! This had to be the one!!!
We didn't want to tell anyone this time until we got further along. Our doctor, who was not the most comforting person, told us to wait until about week 14-15 before we shared our news. Our parents were the only other people that knew so that they could be praying for us. (On a side note, I never really felt a connection with my doctor but thought I would stick it out with him since he had been through the past two miscarriages with us. I had to have a d&C with the first miscarriage. My doctor didn't remember it or even look at my chart to see my history the second time around. There were several episodes like this.) Our pastor and his wife were the next to find out and then it became difficult to keep it all a secret. We started telling everyone because it seemed that everything was going well this time. So, at about 17 weeks, I decided to switch to a female OBGYN. I asked several people who they recommended and I kept getting the same answer, Four Seasons Women's Healthcare in Tyler,TX. I made an appointment, feeling comfortable with a small practice that consisted of 4 Christian women. Do you think God had anything to to with that one???? I was very excited to see my new doctor and knew that she had to be better than my last doctor. She is wonderful!!!
The Saturday before my first appointment with the new doctor we had decided to go to a local place called Sonocare that would do sonograms and let your family watch. So, Bryan, his mom, my mom, and I went on Sat., April 10. We were going to find out the sex of the baby and get pictures and a short video. The sonographer started to look around and mentioned that she was having a hard time seeing much of anything because there was barely any fluid. It wasn't like this the last time we had a sonogram.....After searching around she was able to tell us that it was a little girl. Yay!!! So, since she is a sonographer only, she isn't supposed to interpret what she sees. She started to tell us more than she probably should have. We appreciated it. She said that the kidneys had cysts all over them. I asked her what that meant. She casually stated that it could be Poly-cystic Kidney Disease. I didn't really feel like I should be too worried. I was very calm, which is not like me. I had to lay there and tell God that he knew what he was doing with this baby girl. The sonographer asked us when we had our next appointment with the doctor. I told her it was scheduled for the following Monday. She seemed very relieved that it was so soon. She said she would call our doctor and discuss what she saw. Still, I didn't feel like I should be worried. I went home and googled tons of stuff and didn't find much about PKD so I figured, "eh, I'm not going to worry about it".
My first appointment my new OBGYN was on April 12, 2009. She was very thorough and told us that she had talked to the sonographer and that she had already scheduled me for a Level 2 ultrasound in Dallas. Great!!! That was my first clue that she was suspicious of something. She did the ultrasound herself next. She was very detailed about what she was looking for and what she was measuring and what she saw. Thank you, Lord!! We finally had someone who would tell us what was going on. We have felt in the dark about everything up until this point. She said that she did see cysts on the kidneys. What this means is that the kidneys are not functioning the way they are supposed to in order to pump urine out. At about 15 weeks, the mother's kidneys are no longer doing all the work to create fluid and filter waste. The babies kidneys are supposed to take over to start producing the amniotic fluid (which is made mostly of it's own urine). The amniotic fluid keeps space in the womb. It also provides oxygen to the baby. As the baby takes in this fluid it creates a positive pressure and allows for the lungs to form properly. So, without at least one properly functioning kidney there is no urine produced. Without the urine, there is no amniotic fluid. Without the amniotic fluid the baby's lungs can't form the way they need to. The kidneys could be fixed, after birth, with dialysis and eventually transplants. But, the lungs cannot. Our doctor wanted us to go to Dallas to see a perinatologist to confirm what she thought she was seeing. Luckily, we were able to get an appointment that Friday, April 16. Bryan and I began praying immediately. We selfishly prayed for a miracle. I told God every day that I knew that he was the only one that could make this baby girl perfect and healthy. But only if that was His plan.
Friday morning came slowly. We got up very early and prayed before we left home, on the way there, before we went in and after we saw the sonographer. The sonographer was very quiet and didn't really have any expressions on her face the entire time she looked at our sweet daughter. She was done in a few minutes and told us that the doctor would be in shortly. We only waited a very short time before the doctor came in.....alone. He had a very serious look on his face and said that he would do another sonogram and he'd probably make a few funny faces as he looked around. He said he wouldn't start talking until he was sure what he saw. He looked around for about a minute and put the wand down. The blurred image of our daughter was suspended on the screen in front of us as he started to speak. (Without any fluid, it's very difficult to see the baby). "Your daughter has a condition that is incompatible with life. Her kidneys have cysts on them that make it very difficult for her to produce enough urine to pump out to produce enough amniotic fluid. Her lungs will never develop properly. She will more than likely make it to term and die within a few hours after birth. He discussed our options. Carry our daughter to term, knowing she would not live. Or, have a procedure that will terminate the pregnancy. (At this point, he grabbed my leg) It's not like the abortion's you see on tv. This baby was a wanted baby. You wouldn't have to feel bad about it." I shook my head as he was saying the last few sentence's. I told him that terminating wasn't an option for me. He told me to think about it. Well, there is nothing to think about..... Bryan said he thought the Dr. answered all of our questions with compassion and wanted us to understand our options.
I asked the Dr. what to call this condition. He explained it was, "Potter's syndrome. The baby will not have very much space to grow, in addition to the kidneys and lung issues, she will have arms and legs that are bound up closely to her and her nose and ears will be smashed to her face."