The UCSF appointment..... worst day ever.

Forewarning, this is going to be a long one so get comfy.

We got up at 5am. I am not a morning person but could not sleep so I was up when the alarm went off. We were going to leave at 6am so we would make sure we got there at 9:15am for the appointment time. My mom and sister came over to take care of the kids and make sure they got off to school ok. I left 2 pages of instructions for them, can you say overkill? I was so nervous it was all I could do to keep myself busy.

I took us 3 hours but we got to San Francisco and at UCSF at 9am. We actually could have been late, we had to wait a long time for the untrasound. I actually feel asleep leaning on Kevin while we were waiting. He got a little drool on his shirt. Oops. The scan took so long. I knew they thought they saw something on Averi's brain again because the technician pointed it out to the visiting doctor we agreed could watch. That made me nervous. Other than that they didn't see anything new or different from what Sac MFM saw (we asked the doctor). Once they were finally done they advised us to go up to the office to speak with Dr. Wu who was expecting us.

We went up to see the doctor and he explained what they found. First, he explained that the stomach was next to Averi's heart and her heart was pushed all the way to the right. He was very nice and explained all of this in a way that we could understand it. He asked us if we had considered termination. There is that question again. Really? I explained that this was not an option for us. He then explained that they did a calculation called an LHR (Lung to Head ratio) and that Averi's was 1.05 at the lowest. Which put her in the mid-range as far as severity. He then went on to explain that do to this we did not qualify for the surgery, since they have found in their research that this surgery was not beneficial for mid-range cases. This all made sense to us and we understood that Averi was not in the best situation but also not in the worst. He did explain that they had a "suspicion" that Averi had brain damage. The ventricles in her brain looked enlarged and that they thought they saw these dots around the enlarged ventricles. He said an MRI could confirm or rule this out. They measured Averi at 23 weeks and 5 days, right on target.

This was not the good news we were hoping for but not the worst news ever either. So we went on the the ECHO. The ECHO also took a long time. Averi was so active it was hard to get all the stuff they wanted to look at. The technician asked me to walk around and come back. We went to the cafeteria and we saw Dr. Wu who asked us to go back to the office when we were done with the ECHO. As we resumed the ECHO Dr. Wu and his colleagues came into the room. My heart sunk, I immediately felt that this was not good, that they were so anxious to talk to us. They told us to make sure we go back to the office and talk to them. The technicians doing the ECHO got all the info they could and said that Averi's heart was a geneticly sound heart. WOHOO God!! He said it would have to be watched because compression from the other organs could change that. I was happy to hear this but still had that sinking feeling anticipating what the doctors wanted to talk about.

This is the hard part (this is an honest and humbling recollection of our feelings please keep in mind how difficult this was for us).....
Back at the office, Dr. Lee and Dr. Wu took us to the conference room. Dr. Lee said that he was concerned about the information regarding our baby. He was specific in regards to Averi's brain and the possible brain damage and the SUA. He said we would not be able to get an MRI with in the next couple of days to confirm it or not, but in these situations when something like this is seen it is way worse then what is seen on the ultrasound once the baby is born. He also said that the SUA that Averi has actually puts her in the very severe range because they had only 15 babies born their with CDH and SUA and only 1 survived and that baby was very ill and in the hospital for months. He all but told us it would be best to just terminate. That we should sleep on it and let them know the next day. That it would not be lying to tell people we lost or miscarried the baby. They kept talking about how we would go about doing termination but I wasn't listening. I couldn't listen, I just cried. He made it sound like Averi was not worth the bother she would cause, that Averi would be a huge inconvenience. I have been feeling her kick me, move around, and knew when she had the hiccups for weeks now. She moved around so much when the techs push on my belly for the scans. How could I just terminate? I can't lie to myself or God on judgement day. Was he being for real? I asked to use this bathroom so I could loose control for a minute. They said that we could use the room until we were ready to leave. For the first time in 15 years my husband cried in front of me. I wanted to leave so bad, couldn't wait, but knew I needed to give Kevin a moment.

I could barely talk as we drove home, but pulled it together long enough to call and check on the kids. Every fiber of my being knew we were meant to have this baby, that I could not justify termination. For the first time in my life I questioned everything about myself. Kevin was so fearful that Averi would suffer that he actually contemplated the option of termination. This shocked me. My heart just ached. How would we work through this? I didn't want Kevin to blame me if this went horribly wrong but I could not fathom the idea that I made that choice. I was in turmoil. Kevin assured me that he would not blame me. He said his fear was on the flipside that he thought that he would wonder everytime we saw a miracle if that could have been Averi as he contemplated termination. I just kept asking God to somehow show Kevin what I was feeling and what I saw for Averi.

We explained what happened to my mom and sister when we got home. My mom being a God fearing woman said that she believed God had a plan and what Dr. Lee said just didn't seem right. The rest of the day I told Kevin that I couldn't do that I wouldn't do it. He said that we would call them and tell them we would have the baby.
I told him that all along I felt we were going to deliver at UCDavis and transfer care to Sac MFM and for me it was now confirmed. We were emotionally drained and went to bed.