Reflecting on the last few weeks of pregnancy...

Romans 5:1-5

Therefore, since we have been justified through faith, we have peace with God through our Lord Jesus Christ, ² through whom we have gained access by faith into this grace in which we now stand. And we boast in the hope of the glory of God. ³ Not only so, but we also glory in our sufferings, because we know that suffering produces perseverance; ⁴ perseverance, character; and character, hope. ⁵ And hope does not put us to shame, because God’s love has been poured out into our hearts through the Holy Spirit, who has been given to us.

First let me apologize for not posting more often or sooner.  There wasn't much change in the weeks leading up to Trae's arrival (I'll address his progress in a little bit).  Just a lot of anticipation.  I had a lot of time to reflect on what God was doing in my life by giving us His special masterpiece.  As I contemplated this God continued to affirm that this was his plan.  I believe the verse above was Alton's (Thomas' brother) class verse so it was read during his graduation.  This was the first of many affirmations...Christ reminded me that even though there will be difficulty He will use Trae and his trials (sufferings) and ours, as parents, to build my character in Him. 

Another affirmation came while visiting Thomas' parents church.  I can't remember the verse or even the point (Sorry, Pastor Stan) but the sermon spoke about obstacles.  We are going to have a lot of obstacles to overcome when Trae is born but God is there.  He knows what obstacles are coming before they come to us and to our son.  He knows how we are going to respond.  I can't image what is coming our way but I'm glad that my heavenly father is going to be by my side to encourage and help my son to overcome anything that may slow him down.  It was good to be reminded of this even if it wasn't the point of the sermon.  :)

Lastly and most importantly...God affirmed and showed me that Trae's condition wasn't my fault.  My sin did not cause this but God has plans to use Trae and his uniqueness to glorify himself.  This message was spelled out for me in the passage in which Jesus and this disciples encountered a man born blind...

John 9:1-4

As he went along, he saw a man blind from birth. ² His disciples asked him, “Rabbi, who sinned, this man or his parents, that he was born blind?” ³ “Neither this man nor his parents sinned,” said Jesus, “but this happened so that the works of God might be displayed in him. ⁴ As long as it is day, we must do the works of him who sent me. Night is coming, when no one can work.

As I heard this tears fell from my eyes because I knew that there was a time in my life where Jesus was not in the fore front of my mind.  I thought that God was using my child to teach me a lesson for deserting him.  But this passage showed me that not only was I completely wrong but that he was using my family to glorify Him.  I don't know why in the world he had chosen me, a deserter and sinner, to have a son and a family that is meant to glorify him but he did.  I am thankful for that and for my child that was coming soon.  This was the biggest lesson.  My God loves me enough despite myself that he still wants to use me for His good.  I am amazed by that.  God knew before I was born that I would desert him and yet he still mapped out this specific plan for me...Crazy, huh?  This plan was not easy to accept but I am eager to see how God will be glorified and what I will learn from God and Trae.  

Health wise, Trae remained healthy throughout the end of the pregnancy.  There were several questions as to whether his legs would be normal or not.  As your may remember Trae's feet were swollen in the first few ultrasounds by the end this had gone down.  The length of his femurs seemed to normalize as well.  This gave us hope for his lower extremities and his overall health.  I was cautious though because I did not want to be disappointed if the ultrasounds ended up being wrong.  I continued to prepare of myself for the worst.  

As for my health, I was placed on partial bed rest a couple weeks before the scheduled c-section due to borderline high blood pressure.  This was preventive to ensure that I did not have preeclampsia.  After weeks of finishing up paperwork at home and sitting around bored the time came to deliver our masterpiece...

 

You knit me together

Psalm 139: 13b "You knit me together in my mother's womb"

This has been a crazy couple of weeks.  We are preparing to move while fitting all of our doctor's appointments in while working and finishing up the school year.  Let me take a second to brag on my husband, Thomas, with everything that has been going on since March he was still able to finish the school year more than successfully! His grades stayed above average and he was able to secure scholarships for next year! He makes me proud to be his wife :)

Let me get back on topic.  Trae continues to grow normally according to ultrasounds.  He weighs approximately 2-3lbs.  They still believe that all organs are normal.  The measurements for his belly and head are also normal.  The last ultrasound provided some good news, the swelling in his feet has gone down!  There is no indication now that his feet are clubbed, the swelling was attributed to his development.  Thank God! His legs are now thought to be bowed, outward.  The opposite of the typical "cowboy" bow.  His knees will come together.  It is unsure what is causing this as Thomas and I heard two different things during this report (we will clarify during the next appointment).  One was that the joint where his knees will be is oddly formed.  The second was that the femur was curved.  We will clarify for you once we know.  With some slight corrections by an orthopedic Trae should still be able to walk.  I am hoping that when we speak with the pediatrician during the first weeks visit that we will be able to get a referral to the Shriner's Hospital in Greeneville SC. 

Delivery will be a C-section.  After listening to the recommendations of my OB and the doctor monitoring his development through the ultrasounds we feel comfortable that this is the best option.  Trae is in a breech position which could still correct but neither doctor feels comfortable with a vaginal delivery.  They don't feel comfortable with this option because they are unsure of the range of motion in his shoulders and how the hands will affect a vaginal delivery.  They are concerned that he would get stuck which may cause breaking in his hands or shoulders.  After hearing this I was willing to let go of my desire for a vaginal delivery for the safety of my son.  I keep finding more positive reasons to have a C-section, including being able to pick his birthday, being able to plan so that family can make arrangements to be there, and many others.  I am sad though and I feel that I won't get the whole experience of giving birth.  Yes, most of you (women especially) are probably thinking, is she crazy? Well those of you that know me already knew that...but in this circumstance I wanted to know what a contraction felt like, I wanted to experience the panicked drive to the hospital, and even having my water break all over the place.  Although I am sad that I may not be able to experience these things I understand that this is what is best.  God may still allow me to experience these things.  God has all of this under control and this is something that I have to reminded of several times throughout this process especially after our visit to the geneticist.

We had a consult with a geneticist to discuss a possible diagnosis and testing to ensure a correct one after he is born.  During this we just reviewed what had already been discussed including the phocomelia.  It was explained that phocomelia is a spectrum type symptom which means that it could include anything from missing fingers to entire limbs (Trae) to a lack of limbs at all.  We discussed the types of tests that could be done to ensure that Trae receives the right diagnosis.  Depending on the test and what insurance covers these tests could cost anywhere between $1000 to $6500.  It seems like a lot but if we have him tested then we will not have to test our other children as we will be somewhat prepared for what could happen.  We have a 25% chance of this reoccurring per pregnancy, that does not seem like a lot but this could be the dominant percentage for us.  Having Trae's genetic tests will help us to better understand what we may encounter as he grows and as we have more children.  We left this appointment feeling good as we have a plan for when he will be tested and praying for continued provision. 

A couple of days later we got the written report from the genticist.  It pretty much said everything that was discussed but the most likely diagnosis was provided..."Robert's Syndrome".  Thomas and I heard the doctor mention this and we had done some research but the only symptom that fit was the phocomelia.  Nothing else had been mentioned.  The report had the characteristics listed, this was scary.  It mentioned facial deformities and possible intellectual disabilities.  We were confused because none of these characteristics including the facial characteristics had been mentioned to us.  The ultrasound doctor had even said that if it was Robert's Syndrome that he would have a normal intellect.  The report was overwhelming but I was able to remain positive and remember that everything we know right now is just a "best guess".  We won't know anything for sure until Trae is born. 

The next morning though...the overwhelming feeling hit and I spun into what I like to call "crazy-town".  This is a place that I go when my thinking becomes irrational.  This time I was being irrationally negative.  I thought about how even thought I was able to conceive I could not do it correctly.  I couldn't grow a baby right.  I did not know how I would parent a child with intellectual disabilities.  I was sad because if he had the facial deformities then he would not look like Thomas or I.  I knew none of this was true but I could not help thinking about it.  Talking with Thomas did not help because he just gave me the cliche answers.  He will help me parent and he will be with me and I knew this but it did not shake my mood.  So as I was driving around in between visits I switched to the local Christian station to help me seek Christ on this day as I needed him.  As I was praying and calling out to him a song came on the radio...the lyrics that came through were:

"God knows everything you need,
so you ain't gotta worry

You may be knocked down now
but just believe what He said, He said

I won't give you more, more then you can take
and I might let you bend, but I won't let you break
and No, I'll never ever let you go" (Group 1 Crew)

Once again God provided me with his comfort and reassurance.  Through this cliche phrase that we tell everyone going through a hard time, God provided me with exactly what I needed.  He will let me bend but I won't break.  When I think about it now bending in some materials causes the material to stretch and grow.  I want to grow so that I can parent Trae as he sees fit.  No matter how overwhelmed I get I know that God has a plan and his plan is best for Trae and our family.  He will not abandon us no matter what and he already knows the certainty of Trae's diagnosis, trials, and triumphs as he is the one knitting Trae together as I write this.  I believe that DNA (genetics) is the technical term for what David was trying to describe in the verse I quoted eariler; Psalm 139: 13b.

"...Grows as God causes it to grow"

I went on a women's retreat recently and our theme verse was Colossians 2:19 in which I was reminded that the body "grows as God causes it to grow".  God used just these words to remind me that Trae is growing how He caused him to grow.  I can't worry about how he grows because God has caused him to grow the way that he is growing.  I don't think that I worry about his growth anymore but I do worry about how to care for him  I want to make sure that he is going to receive all the best services so that he reaches his potential.  I have to remember though that what I think his potential and what God's potential for him may be different so when things don't turn out the way I think they should its because God has a different plan than mine.

So now that you have been updated some of the things that have been swimming around in my head it's time for the update about Trae's development.  In the last blog we had an ultrasound with Dr. J and weren't really pleased with the information (or lack of information) that we received.  Dr. Welt agreed to see us to ensure that everything is going well.  Trae is growing well.  His organs are developing normally as they have been.  Trae was moving quite quickly during this ultrasound.  Dr. Welt was able to get a good measurement of his femur (thigh bone) and this has caught up.  If you remember there was some concern that it as short.  We were very thankful for this.  Due to the Trae's quick movement it was hard to see his bottom leg bones though so there is some question about the cause of the swelling in his feet.  The swelling has not increased which is also a praise.  There was some thought about the swelling being caused by the leg bones being too far apart which would affect the development of the cartilage that would form his knees but Dr. Welt explained that it is really hard to tell why his feet are swollen.  This will most likely have to wait until his birth to determine accurately.  So really everything is going very well! We are starting to discuss delivery as it was explained that there is not a lot of information about how to get a child without arms out of the womb.  I would really like to have a vaginal birth but there are some things that could affect this.  First he has been breech for most of our ultrasounds and they won't allow me deliver my first child breech.  Then there is question as to whether his shoulders would cooperate even if he is positioned correctly (explained by Dr. Sarkodie during my appointment on Monday 4/23).  As we continue to pray for everything to remain in God's will for Trae's growth we will also be praying about discerning God's will about a healthy delivery. 

I had my sugar test - I failed the one hour test.  Then I sat through the three hour one but I passed this so no diabetes for this girl! Dr. Sarkodie explained that this sometimes indicates that there is something developmentally wrong with the baby's shoulders...I think we figured that out without the sugar testing :) 

Thomas and I are finding the humor in our situation and I know some of you may not be ready for this yet but we feel that this helps us to remain positive (we want this to also encourage you all as well).  Proverbs 31:25 says "She is clothed with strength and dignity; she can laugh at the days to come" so this lets me know that our humor is a characteristic that is pleasing to God as we learn to follow him in the path that he is laid before us.

You make beautiful things...

But the voice of truth tells me a different story
And the voice of truth says "Do not be afraid!"
And the voice of truth says "This is for My glory"
Out of all the voices calling out to me
I will choose to listen and believe the voice of truth

-Casting  Crowns

We have gone to the doctor again.  The Lord answered our prayers about not adding anything new to the mix by allowing everything to stay the same.  Trae is growing normally! This was comforting to us.  I think I have explained that due to the size of the practice we see two doctors, my regular OB and the doctor that examines the ultrasounds.  Even then there are different doctors who examine the ultra sounds our favorite, Dr. Welt, and our not-so favorite, we'll say Dr. J.  When we went to have our most recent ultra-sound done on March 29th Dr Welt was not there.  I had thought that I had made sure that I had scheduled this with Dr. Welt but I must not have communicated my request well so we saw Dr. J.  The ultrasound tech did the ultrasound and then we waited for Dr. J.  The amount of time we waited made me nervous because I began to think that they had found something else.  After what seemed like forever Dr. J came in and immediately asked "what questions do you have".  Well since the tech had not given us much information we needed to know what she had seen; so I asked about the development of the organs.  She assured us that all organs continue to look good.  His femur remains short and his feet swollen but everything else looked good.  

On the same day we had an appointment with my regular OB, Dr. Sarkodie.  Her report was equally as encouraging.  I am growing normally; actually, I am above average where I had been below before.  Trae's heart beat continues to be normal and strong.  She asked about how my ultrasound went and I explained that I had seen Dr. J.  She was not excited to hear this so she let us know that she will review Dr. J's report with Dr. Welt and they will determine if another ultrasound would be needed before the next 4 week appointment.  I did not hear from them by Wednesday when Dr. Sarkodie had said so I called on Thursday.  She returned my call herself (we are so blessed to have such an amazing doctor) and explained that Dr. J's report was incomplete and she wanted more information so Dr. Welt agreed to see me on Wed April 11 for another one.  Dr. Welt did not see anything to be worried about but agreed at the request of Dr. Sarkodie.  So we will have more information then.  Right now we are relishing in the fact that he is growing, has healthy organs, and is moving regularly.  

I heard the song that I quoted above the other day and thanked God for the reminder that we are choosing to follow the voice of truth.  I keep getting confirmation that Trae was given to us for God's purpose.  Thomas and I choose to have a positive attitude because of our faith and our belief that Trae was made beautifully as God saw fit.  We have received so much support from family, church family, and friends that we can not be anything but positive.  (Thank you all for the prayers, notes, etc - you do not know how much they mean) During all of this we were reminded of how blessed we are just to have a child that is growing and flourishing despite his abnormalities which despite the sadness we felt added to our reason to rejoice.  Don't get me wrong we have our worries but there is much to praise God for.  In the Easter story we noticed in Matthew 28:8 that Mary Magdalene and Mary were "afraid yet filled with joy" as they went to tell the disciples about Christ's resurrection in this defining moment in their lives.  Thomas and I agree that Trae and his life will be and already has been one of our defining moments.  We related whole heartedly to the women involved in the Easter story...and on Easter morning no less. 

From My Point of View

I'm sure by now many of you have realized that Courtney wrote the first post.  Also, I'm fairly certain by now that many of you are wondering what I am thinking about everything that's going on.  Let me be clear Courtney and I are in agreement about everything that she said in the original post; this is just me taking a slightly different spin on it.  This is looking at the situation "from my point of view."

I haven't exactly kept it a secret that one of the things I wanted to do as I grew older and became a father was to be able to play basketball (or any sport) with my children and coach their rec basketball (or another sport) teams.  I wanted to do that because my dad had done that for me, and it was one of the things that I feel was important to me and made me feel important to my dad.  However, while I am not writing it out of the question that Trae would like to and would find a way to play basketball, that likelihood is unlikely.  One of my grand dreams of being a father is, for all intensive purposes, gone.

I don't know why I was holding on to this dream, though, or that it's surprising that I am going to have to give it up.  There have been many times in my life when God's plans and my dreams have conflicted, and I have had to give my dreams over to Him.  In high school, I wanted to play basketball for the school, and I did for one year.  However as a sophomore, I was cut from the JV squad.  I wanted a degree from my favorite college, Virginia Tech.  I got in, but I messed around while I was there and was eventually suspended.  I dreamed of having a calm life without any great tragedies.  That, too, was going pretty well until April 16, 2007.

Many people know what happened on April 16, and for those of you who do, please indulge me for a second as I fill in those who don't.  On that day, a gunman went on a rampage on the campus of Virginia Tech.  By the end of the day, thirty students and professors had been shot and killed, plus the shooter.  One of those killed was my good friend Stack.  Most people knew him as Ryan, but to me and my friends in the Marching Virginians, he'll always be Stack.  He was an RA, and he was one of the first ones who was killed.  He was just doing his job as an RA when it happened, and it wouldn't be a lie to say that there were things that he did that I hoped I could do just as well him.  He was pursuing a double major, in the band, an RA, in other clubs, and still found a way to maintain a 4.0 GPA.  And then, he was just gone.

Some of you, maybe even all of you, are wondering at this point what these things have to do with Trae.  Well, I'm getting to that; this wasn't just a rabbit trail.  Each of these times I had to give a dream over to God, I have found that He has given it back.  I have truly experienced what Paul says in Ephesians 3:20a, "to Him who is able to do immeasurably more than all we ask or imagine."  I now play basketball at Milligan College, something I never imagined was attainable for someone who only played one year of high school ball and is seven years out of high school.  He led me to Milligan, a place I had never heard of, but one that has proven to be a blessing many times over.  The shooting at Tech He used to bring me even closer to Him.

It should be becoming clearer what this has to do with Trae.  I trust that, even though I am having to give up the dream of playing basketball with my son, He'll give it back, someway and at sometime.  Who knows, maybe Trae will end up playing basketball with his old man.

He's fearfully and wonderfully made...

Okay, so I've done it...I have started a blog.  I'm not someone who would make things public like this but our unborn son wants you all to know about how God made him special and how his mommy and daddy are preparing for his arrival.  With that said, this is Trae's story...

The week of Thanksgiving 2011 we found out that we were expecting our first child! Things were going and continue to go well.  On February 29, 2012 we found out that our little bundle was a little boy! Having already picked a name we immediately started calling him by his name Trae (short for Richard Thomas III).  The nurse conducting the ultrasound on that day was quiet.  I asked many questions which she answered...but once the doctor, Dr. James, came in she informed us that there were some concerns about his limbs.  First his arms were described as short and his femur (leg bone) was shorter than normal.  It also looked as if he had clubbed feet as they were swollen.  Finally his legs were turned out, or in a frog like position.  She explained that this could be a positioning issue and recommended that we have another ultrasound in three to four weeks with a different doctor.  I appreciated her explanation and her humbleness to suggest that another doctor should take a look.  We were sent on our way with encouraging words and a challenge to remain positive.  Luckily, we already had an appointment with our regular OB for the monthly check.  We called everyone we knew to start praying for God's will and for strength to be able to handle whatever He had in store for us and little Trae.

On March 1, 2012 we met with our regular OB, Dr. Sarkodie.  She did her regular questioning and inquired about our ultrasound.  We told her that we had it the day before this appointment; she told us that she did not have the reports from the doctor.  Thomas and I explained what had been expressed to us, she immediately called for the nurse so that she could hunt down the reports.  After reviewing it, she confirmed that there were some concerns and that they had nothing to do with his position.  She began providing us with a lot of information.  Basically, she said that this would be a chromosomal issue.  Our doctor scheduled us for a follow up ultrasound with another doctor, who had more experience reading ultrasounds, for March 5 - the following Monday.  She also recommended that I have a "QUAD screen" in which I would have blood drawn to test for some chromosomal disorders including Spina Bifida, Down's Syndrome, etc.  Thomas and I both realized at this point that it was definite, our child is going to have deformities.  We did not know what all this would mean and the hardest thing for me to stomach was the fact that the doctor could not tell us anything about his ability to be viable outside of the womb.  We emphasized to our doctor that no matter what all of this means we are supporting Trae's life whether that is for a day or a lifetime.  She was very supportive of this decision and agreed to help us get connected with additional doctors as needed to help us prepare for his birth and life.  Thomas and I left and began the mourning process...we mourned the idea of having a "normal" child.  To remain positive we focused on the fact that all of his organs were forming normally including his spine and heart.  God kept reminding me of Psalm 139:13-16...

 ¹³ For you created my inmost being;
   you knit me together in my mother’s womb.
¹⁴ I praise you because I am fearfully and wonderfully made;
   your works are wonderful,
   I know that full well.
¹⁵ 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.
¹⁶ Your eyes saw my unformed body;
   all the days ordained for me were written in your book
   before one of them came to be. 

We spent the weekend with our families processing the information we had.  Thomas and I got to a place of complete positivity and peace.  God has allowed us to have this child, His child, and we would be able to handle whatever needs he had.  

Today, March 5, we had the follow up ultrasound and met with a new doctor, Dr. Welt.  He looked at the ultrasound and confirmed that Trae has no arms; his hands are located at the shoulder.  Trae's legs are in an odd position but his feet were not clubbed, only swollen.  This swelling is due to too much space between the two lower leg bones (fibula and tibia) at the knee.  Normally they would be closer together and wouldn't be as free to move as Trae's are, explaining the strange leg positioning. The cartilage for Trae's knee will not form until about 38 weeks (18 weeks from now) but if this forms then the lower leg bones will be pulled together reducing the swelling.  Trae was diagnosed with a genetic syndrome called Phocomelia Syndrome.  This accounts for his arm abnormalities.

God knows what he is doing and we have full faith in that.  Sorry this initial post was so long but everyone should be up to date.  With this blog I plan to keep everyone informed of his growth and development from now (gestational age 19 1/2 weeks) through birth and beyond, as best as I can.  God will be glorified through the life of Trae. I only pray that we will also glorify Him as we parent the child He gave us.