Part 3-update

After last week's appointments, we spent most of our weekend in a daze. We tried to keep busy to keep our minds busy. Our 1 year old is really good at distracting us. 

Sunday, we decided to take our prayers to church.

We shuffled into the back pew of the church with my Grandpa.It was ironic to me the whole church service was based on "prayer' and how and when we should be praying. It seemed so fitting. And the final hymn of the day was "What a friend we have in Jesus". It's one I've known since my Sunday school days. But the words really hit me that day.

As I was choking back tears, I could see my Grandpa wiping away his own.

My Grandpa of course knows what is going on, but is not a man of many words. He doesn't need to be. But he's also not a man of many tears. I can count on 1 hand the number of times I've seen my Grandpa cry. 

On Monday, August 19th, I got the call that our amniocentesis test came back with 98% positive result for T18. Of course, this is the "preliminary" and official results are to come later this week. But this was all we needed to hear.

I felt every piece of hope I had get torn from me that day. The odds weren't in our favor anymore, but I had hoped and prayed for some kind of miracle.

I feel like I am about to spend most of my days in a hospital/clinic setting- weekly doctor appointments that are anywhere from 2-4 hours long. Our next will be with the genetic counselors(Friday), and then we will have a Fetal Echo Cardiogram(a week later)  to better understand what our baby's heart will be like once he is born.

I met with my original OB this last Tuesday. He hugged me.And we cried together. 

This man has seen and delivered hundreds and hundreds of babies. He's seen the cysts on the brain and there's always been a happy ending. NEVER in his career have they turned out to be T18. We are the first in his career. We talked about how we would proceed from here on out. If we go the route of comfort care, I will deliver with my doctor. If we go the route of interventions, we will be with the high-risk doctors and NICU doctors. These are all decisions that will need to be made, yet ones we really don't want to think about.

I recently made a trip to Labor and Delivery because I was having contractions. I didn't know where to go and I didn't know who to call, so I called my original OB and made the hour drive. It's where I felt comfortable. There was no mistaking I was contracting, which made me feel like I wasn't crazy, but also made me worried. If this was to be true labor, they wouldn't stop it.  They stopped contractions twice for me when I was pregnant with our daughter. But the survival rate of T18 babies is so low,and my baby is already so small, they would not want to do anything that would cause me harm or risk; especially being the outcome would unfortunately be the same.

It sounds harsh, but this is the reality. Of course we would do what we can in that case, but no extreme measures that would put my life at risk. And logically, this all makes sense.

I do not yet know how much extra monitoring will occur through out the rest of our pregnancy.While this is a high-risk pregnancy, its not "High risk", simply for the fact that nothing can be done, and in the end, my health is fine. 

Medicine is not advanced enough to fix DNA structure.

It may all sound negative and hopeless, but its not.

His clenched hands could be fixed, his clubbed feet could be fixed,and his heart issues could be fixed (To an extent). But his DNA just isn't right. Every cell that splits and makes a new cell, is creating a new "bad cell". 

Facts are all we have to go on at this point.

We have prayed and begged for a miracle. And if God wanted to, he could heal our baby.  But deep down we know, this was not the plan God intended for our little boy. So now, I've stopped praying for God to "fix" him. I've started praying and begging for strength and guidance.