34 weeks/MRI testing

34 weeks

A couple of weeks ago, I had a fetal MRI.  I wasn’t too concerned about the test, because I didn’t consider myself “claustrophobic”.    The testing would take about an hour, after an hour of the registration process at Children’s Healthcare at Emory.    Because I was so confident in my ability to complete this test without moral support, I asked Chad to meet me afterward for the consultation with the radiologist.   

They covered me in warm blankets and put earplugs in my ears.  They then asked me to remain completely still for the duration of the test, which would be around 45 minutes to an hour.  They gave me a panic button, and then put me into the large, dark, tube.  I made the mistake of keeping my eyes open the first time, and I had a mild panic attack!  It is really felt like I was trapped inside this small space, and the loud noises were really frightening.  I didn’t last 30 seconds before I pushed the button.  

They removed all the warm blankets, put a cold rag on my head and then we tried it again.  This time, I closed my eyes before I went in and left them closed the entire time.  I prayed a lot!  I also had to talk to myself the entire time to remain calm and still.  It was a real growing experience!  I told myself that I was doing this for Josiah, and the results would be worth it in the end.  

I hope that I never need another one of these tests!  If so, perhaps an open option would be better.... or at least a sedative! 

Chad and I were really surprised to hear some of the results that the radiologist gave us.  We were told initially that he had a Dandy Walker Sign, which is a problem in the back of the brain that effects his cerebellum.  According to the MRI, he actually does not have this problem.  This was good news!  Also, we were told that he had an underdeveloped jaw, but according to the MRI there was no evidence of this.  This news was very encouraging to us.  

The bad news was that he has one eye that is very small, and is past the time period of development to grow.  The doctor did not feel like this eye would be functional.  Also, he confirmed a large cleft lip and palate.  

We have a visit with the neonatologist , who is also a geneticist, in a couple of days to help us discern what all of this new information means for Josiah.  According to our perinatal specialists,  if Josiah is a “full” Trisomy 13, his prognosis remains poor, despite the good results of the MRI.  The Harmony Test that I took early in my pregnancy can not discern if the Trisomy is partial, mosaic, or complete.  If he is partial or mosaic, his chances of survival are much greater.  

I have been hesitant to complete the amniocentesis  test for many reasons, but we have  decided to schedule it soon.  I am not a big fan of any needles, especially really long needles!  Please pray for my peace that day, and for Chad for the following 2 days.  I am supposed to take it easy, and not do any lifting afterward.  This will mean that Chad will carry the weight around here, there is a lot of physical activity in this household, especially with our 21 month old.  The full results will take about 2 weeks to be returned.    The purpose of the results, will help us decide what type of care to provide for Josiah after birth.  

Every time I go, I am always reminded of the chance of “fetal demise”, or preterm labor, and all of the other things that can go wrong.  We know this, but we are trying to just make the best decisions that we can make along the way.  It is very sad.... I feel very sad as I write this post.  It is a heavy season for us, but we are constantly encouraged by the support that you all have provided.  Thank you again for your encouragement and all of the things that you do..... it does not go without notice!  It is times like these that we are reminded of the highest quality of people are around us.  We have such sacrificial support, and we are SO grateful.