The Road Before Us...

Monday was the day that our entire world was turned upside down. I had this intuition that something was somehow "off" with my pregnancy. My symptoms were subsiding, and I didn't know if it was just that time in pregnancy (around 12 weeks) where that starts to happen, or if there was something wrong. So I called the doctor.

They brought me in at 10:30 to check the heartbeat on the doppler. No heartbeat. So, they sent me for a sonogram. They found a good heartbeat, but also found two very concerning abnormalities... an abdominal defect (omphalocele) and more concerning, something called a cystic hygroma. Basically, it is a thick cystic thing filled with fluid on the back of the baby's neck. The fold on the baby's neck should measure 1-2mm. Our baby's measured well over 8mm. Since my miscarriage was also the result of a chromosomal abnormality (triploidy), they sent us to a genetic counselor. We met for a while with the genetic counselor who basically she suspects another chromosomal abnormality with the baby. When I asked specifically what she suspected, she named two trisomy disorders (trisomy 13 and 18) both of which are lethal, usually with the baby being carried to term or close to it, and then either being stillborn or dieing shortly thereafter. An omphalocele or umbilical hernia is also often present with both of these trisomies. She suggested doing a chromosomal test (called CVS), so we went to Holy Cross Hospital to have that done. The doctor there also measured the thickness of the baby's neck, and said that given the severity of the thickness, that research only suggests a 10-15% chance of viability, meaning the baby being born alive (not a normal, healthy birth or life). There was no ray of hope in anything we heard yesterday. The "best case" scenario would be Turner's Syndrome or Down Syndrome, the worst being the trisomy 13 or 18. Some of the students at Stephen Knolls, the school with children with severe and profound disabilities where Spencer used to work, had those coniditons. The genetic counselor also said she was concerned about a possible heart defect, but that it's too early to tell that.

With my miscarriage last Novemeber, there were 3 days in between the day we found out and the day of my d&c.... three heart-wrenching days of walking around knowing I carrying around my dead baby inside me. This, however, is much worse. There's no definitive end.

And I am scared. I don't know if I am more scared of another miscarriage, of the baby being stillborn, or of the baby being born living and us having no idea how long he or she will be with us. I am scared of the possibility of raising a child with multiple severe and profound disabilities.

I want to pray and ask God for a miracle; but what if He says no? I want to pray and ask for God's will to be done; but I am terrified of what that is. I don't know how to pray for this situation or how to navigate it. All I know is that God hears me, He loves us, and that He will carry us through this.