appointment with Sac MFM July 30th ish

We drove to Sacramento which is about an hour away. At this point, my mom, and sisters knew and were already praying. Kevin chose not to tell any family on his side until after this appointment. A guy thing I think. He is very logical and fact oriented. The concerns here were the enlarged ventricles in the brain, SUA (Single Umbilical Artery), and the CDH (Congenital Diaphragmatic Hernia). A little background on the SUA.....in a normal umbilical cord there are 3 vessels, 2 arteries, and 1 vein. We arrived and waited to be called.

They started the scan and it took about an hour. The technician said the doctor would complete the scan and talk to us about the findings. The doctor came in, a very nice gentleman, and explained that our baby did in fact have the CDH and SUA but he was unable to see anything unusual with her brain. He also said her heart looked good and he saw 4 chambers. Praise God!!!! I have learned that in this situation, there is good news, but it doesn't necessarily affect the outcome. However, I will praise God for every hurdle we cross.

He said her stomach was in her chest cavity and this causes undeveloped lungs. The hernia is on the left side. The genetics counselor came in and asked in terms of severity how was the liver involved. We did not at the time understand the significance of left side or liver up. She suggested that we may need to be referred to UCSF for a consultation by them. He said that would be an option.

He then suggested an amnio, which I agreed to and they did on the spot. The amnio I thought would prepare me for what to expect once the baby was born. They said they would do a FISH on the most common chromosomal defects associated with CDH. Which are Downs (Trisomy 21), Trisomy 18 and 13. ON a side note Trisomy 18 and 13 are what the journals say "incompatible with life". Then that we would get the rest of the results in about 10 days.

The genetics counselor then took us to her office. She gave us a print out of info on CDH and another on UCSF and their program. She explained that they like to get results out as soon as possible since we had the option to terminate up to 24 weeks.
Wait...did she just say terminate? I had not even fathomed the idea let alone imagine it would be an option. I politely that would not be something we would choose to do. She said that they would want to do an ECHO on the baby's heart and get the results back from the amnio prior to referring us to UCSF. UCSF will not intervene if the amnio came back with any abnormalities or the heart had any defects.
They scheduled the next follow up for August 27th. That appointment was very long and we were exhausted, but went home to be with our waiting children.

Ok this was way long..... sorry if I give too much information I tend to overstate the details

The call from the specialist group July 29th ish

My mind still preoccupied from the news the day before, I woke up knowing we all needed to go and pick up our oldest son Alex from the airport. The entire time I was thinking "When are they gonna call, when are they gonna call" as I was driving down interstate 580. Apparently, I was driving to fast because I got a ticket. Crying as he was writing the ticket, Kevin kept reassuring me that it was okay, that he was surprised this was my very first ticket. He was trying to make me laugh. We got to the airport and picked up Alex. We were all hungry so we stopped to get something to eat. While we were there "they" called. Sacramento Maternal Fetal Medicine called we had an appointment for the next day. She was trying to explain that she would email me forms to fill out and bring with me. I was so out of it I couldn't comprehend what she was saying. I told her that. She explained what I needed to do and told me to stay off the internet until we saw the doctor and he told us what our baby's situation was. That was the best advice yet. For the rest of the day I tried to just concentrate on the kids that needed me now. Alot of these details are fuzzy at this point.

The day we found out...... July 28th ish

At 19 weeks pregnant Kevin and I were so excited at the possiblity of finding out if we were having a boy or a girl. We brought along our 4 year old in hopes he would be more excited about the baby. Up to that point everytime we asked if he wanted a baby brother or sister he promptly answered "no". As the technician went through the scan I had the sinking feeling something was wrong. She concentrated on the brain, the blood flow, and the abdomen for a long time. Her face was in a scowl. With my other 2 kids they always said things like "Oh look at her face" or "I see a leg, another leg, and uh thats not a leg". She was dead silent. She asked "Have you already had your AFP test?" I answered yes. Then she asked "When do you see your doctor?" I said right after the scan. I wanted to be wrong so I asked "Can you tell if it is a boy or a girl?" She quickly said "I think it is a girl". Then she asked us to go to the waiting room and wait for our appointment. I told Kevin "There is something wrong, something is not right, she acted "different" when she was doing the scan." Kevin said I was just worrying too much. I do worry alot about everything, so I tried to push the feeling aside. They called us back, and the doctor entered the room. No smile, no nice greeting. She said "I am Dr. Bouchard nice to meet you." Then she said that she didn't have good news. She said they thought they saw enlarged ventricles in the brain, there is a 2 vessel cord, and the baby had a hole in the diaphragm. I looked at Kevin, his jaw was hung open. I already had tears streaming down my face. She was still talking but I wasn't listening. I had to ask her again what they saw. She said they would refer us to a specialist to confirm what was seen in the ultrsound they had just done. We were shocked and confused. I didn't know what to think. We got home not knowing what to tell our older kids. My daughter Kylie kept asking "What is it boy or girl?" At this point that was the furthest thing from our minds. Something was wrong with our baby. We both got on the internet and looked up 2 vessel cord and diaphragmatic hernia. What we found was even more devastating than we thought. Basically, that both of these are generally soft markers for other defects or conditions and most are not compatible with life. We read and read and cried all night. I wanted to crawl in a hole and not come out. We decided to go to bed and wait for the call from the specialist for an appointment. Plus, we were picking up Alex from the airport, he was coming home from a summer visit with his mom. So we went to bed devastated.