We went to CHOP expecting to receive news on how hard the road would be to get Silas in a good position once he was born, but never thought we would be told our little boy would not even make it to birth.

If that day was not going to be hard enough I woke up with the stomach flu.  Not ideal for hours of pressing on your stomach to get pictures of his condition, but I was determined to get the best advice for him.  We had to be at the hospital at 7:30am and did not leave until 5:00pm.  I had a two hour echo, two hour ultrasound, and a fetal MRI.  In between those tests we met with a genetic counselor.  At the end of the day is when we were able to talk to the physicians about their findings.  Though out each test I could pick up on other conditions happening within his body, but was unsure of what it all meant put together.  By the end of the day I was pretty sick and exhausted, but was anxiously awaiting to hear what the plan was for him.  The news was devastating.  We were told that Silas had an extreme case of HLHS, which we had know, but that he also had another defect of his pulmonary valve.  Dr. Rychik explained they had only seen a few cases like his.  With those two defects combined he was going into heart failure.  Due to the heart failure he was not able to handle the fluid building up. This has caused a condition known as Hydrops.  It is where they find fluid build up in at least two areas of his body.  Silas has extreme fluid in his stomach, bilateral pleural effusion, and in the brain.  He will pass away before he is born at which time I will be induced and deliver a little boy.  Or I will develop a condition called Mirror Syndrome where my body mirrors what is going on with him and can be life threatening for me.  We both will be monitored closely until either of those happen.  I will also get an amnio soon so we can see if this was caused by a chromosomal or genetic disorder we missed in the bloodworm.  Information to help with future babies or when our children start their own families.  I do not like to cry in public, but how could I not break down completely with this news.  We knew our lives would completely change when we had him due to his HLHS, but we were just happy to have a chance to fight for him, to live a life with him no matter his condition.  Now we feel robbed of that.  I could not wait to get back to our hotel room and just let ourselves mourn our son.  It was the worst night.  Still is.  The waiting is awful.  To still feel him kick just reminds me of what I won’t have.  I will not just simply except that he will die just because.  I believe God gave us Silas for a reason and will take him home early for a reason.  If I don’t believe that my sadness will turn to bitterness.  I truly trust God and his plan, but it still feels cruel.  We may not see His plan for a long time as to why.  I know my Heavenly Father does not do things to His children to be mean.  He is still good.  He will guide us through this time.

He will always be our Strong Silas!