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.