consult with neonatologist

On the last post, I mentioned a meeting that we were scheduled to have with the neonatologist.  I want to update you on that meeting. 

 First of all, I want to say how appreciative we are of the Perinatal Loss Office at NorthSide Hospital.   The Loss office has coordinated so many of our meetings and doctors appointments for us.   They are the ones who arranged the meeting for us, to discuss the results of the MRI that I had several weeks ago.  The loss office also has put a birthing plan into place, and has circulated it to those who may need it in the hospital.  Their goal is to make this process as “easy” as possible.  They have been a huge support to our family, and I am glad that the hospital has invested in this service for their patients.  Hopefully none of those reading this will ever need their services, but we are truly thankful for their help.

The doctor that Chad and I met with was extremely helpful and kind, although, it wasn’t all good news.  One thing that I have learned through this process, is that care and concern can be heard in the WAY that things are said.  Even if the news is the same, having someone communicate with empathy is so much easier to accept than one who communicates with only facts.  Does this make any sense?  This neonatologist seemed to know a lot AND care a lot.  Another thing that I like about him, was that he was humble.  I really do not like the arrogance of those who want to predict the future.  Only God knows what the future holds, and all things are possible with Him.  This doctor was careful to give us the facts, and all of the statistics, but steered clear of predicting the future.  He said that every case is unique, and we are uncertain of what will happen with Josiah.  I really appreciated this....

The big take away from the meeting, was that although the anatomy of Josiah’s brain looks much better than expected, the MRI is not designed to detect the neural activity and functioning of the brain.  He said that if Josiah is a full Trisomy 13, even if the brain anatomy looks normal, it may not function as it should to allow him to have a long life.  

The main cause of death, from my understanding is apnea.  The child simply stops breathing, because the brain doesn’t tell the lungs to breath.  This could happen at within hours of his birth, or it could be days, weeks, or months.  We just don’t know how long he will be with us.  

Obviously, this is an overwhelming thought.  I am wondering how I will ever stop looking at him, wondering if this breath will be his last.  He said that sometimes the child is sent home with a monitor, that will alert parents of this type of episode.    I really can’s spend too much time thinking about this, because it is just too much.  

This Friday the 21st, I am scheduled for the amnio.  The quick results will be back within 2 days, if it is unclear, the extended results will take 2-3 weeks to be returned.  So for now, we focus on keeping our minds in the present, and trusting God for today.