August 5th, we had our next appointment for a follow up with the specialist. I had been drinking a ton of water before this because of my low fluid due to her kidney. So I thought this appointment could be better and that maybe her fluid would be better. We also would get the advanced test results back. Again going in with high hopes but so nervous. We went in and they gave us the ultrasound. We saw her little mouth opening and closing, drinking fluid. She was curled up so it was a little hard for them to see. The doctor came in again after the ultrasound, she did not have good news. The results came back that she technically did not have the full trisomy 21, 13, or 18 but there was some extra material on the 13th chromosome. Which could mean a partial trisomy 13 and since it was partial it wouldn't come through on the first test we had. But she said we could send it in for a micro array to find out where the extra material was coming from on the 13th chromosome. I of course broke down again. All I could say is "I just want this baby so bad."  So we left knowing that our doctor would call us to let us know when those results would be in. Oh great, more waiting.  This time our hope was that the extra material was just some fluke thing and she could be ok. But again we were warned that it was not likely because of her other issues. With the trisomy there could be even more issues that would not be seen on ultrasound. Which could cause her a very poor quality of life. We went to church and prayed but I mostly cried. My husband had hope still, but I was so drained and sad. I just had no more room for hope.

 The rest of that week I stayed home from work. The next day I couldn't be alone so I took my dog and went to my moms. She took care of me, fed me pancakes and tuna melts. I needed my Mom and her food more than ever. Those who know him know, my dog is such a dope so he helped a lot to keep my spirits up. That day I felt my baby "Brielle", move for the first time. I felt flutters before but this was real. My mom could even feel it when she put her hand on my stomach. I felt like this was a sign, she was saying it's not so bad in here mom I'm OK! I was waiting today to find out when we could get the results of this next test. They told me we wouldn't get them for 8-11 days. This was a problem. The next week I would be 24 weeks pregnant and our doctor needed a decision from us if we wanted to keep her. 24 weeks is the cut off to terminate a pregnancy. Which we didn't want to do, but didn't know if our baby would live more than a year And within in that year she would be suffering. This is common for children with trisomy 13, especially with the issues our baby had. We were still in denial. We could take care of a disabled child, at least she could die naturally. We were not ready to make this decision. We had looked up many heart warming stories of those that survived many years after birth with this chromosome issue and we thought we could be one of those families. Another problem, which was the last thing I thought about was my own health. If the baby died in my womb, I could get preeclampsia, liver failure and other really scary things. My husband automatically said that we can't risk that. Since we could not know for sure if it was trisomy 13 causing these issues, she made us an appointment at children's hospital in Boston to get second opinions. It was going to be a long day of ultrasounds and genetics counseling.

The night before our second opinion appointments, I cried so much. Which had been normal for me lately. I have been waking up in the middle of the night and every morning sobbing. I felt her kicking and all I could think about is how am I suppose to give up on my baby. My husband also felt her kick for the first time as well and he felt we couldn't give up on her either. That night I had the mind set that I can't end this pregnancy. I love this baby so much already, my heart was so full but so broken.

August 8th, we had our second opinions. We started with a echocardiogram, then a ultrasound and ending with a meeting with a genetics counselor. What we knew before this is that our baby was measuring small, her heart had two holes, one of her kidneys had cysts and she had an extra finger. At the end of our day at children's we learned that her heart issues  were more severe and would need multiple surgeries and possibility of heart catheters, her lung artery and lung valve being so small would also lead to poor lung development. Which could lead to needing a lot of work on her lungs as well. We found out that the kidney we knew had cysts on it was so large if was measuring the same size as  a kidney of a baby 5 weeks older. Not only that but the smaller kidney that they believed to be the working one also had cysts on it. Plus the tissue of the kidneys looked "abnormal", because it was showing bright white on the screen compared to other parts. She had extra toes and fingers. The umbilical cord is two valves instead of three. These were just the issues that we could see through a ultrasound. We were told that she is most likely surviving because my body is giving her what she needs, she was surviving off of my resources. The possibility of her having even more was very big since her chromosome test did have extra material on chromosome 13.  So after this day our hopes of a normal child with good quality of life were no longer there. We felt we could make a decision at this point. We did not want our child to suffer, we set up the appointment to end the pregnancy.

Here I am writing this story the weekend before my surgery. I had set it up on Friday so we had to wait for Monday-Tuesday for our appointment. This has been the worst weekend of my life. I feel her kick and it makes me so sad every time. A lot of crying and looking up stories of other women and couples who have been through this. I have never had surgery before so I'm terrified. I had a choice of being induced and going through labor or having a D & E surgery. My doctor thinks that the surgery is best for me because going into labor is so emotional and we've already been through so much. I will be asleep for the procedure and it won't take as long. But being 23 weeks I am so scared that I might have complications. My husband has been my savior. I am so grateful for having him and amazing family/friends for support. Even though we are both heartbroken we feel like we are making the right choice for baby Brielle. She won't suffer, she will be our little angel. We plan to keep her ashes and spread them in Wells, Maine; where our first vacation together was and where I vacationed growing up with my family.

Life after surgery there is still a lot of precautions we have to take to make sure we are able to have a healthy baby. We will finally get the test results back to find out about the extra martial and where it came from. We will also both have to get tested to make sure it didn't come from us. If it wasn't from us the chances of it happening again are 1-10%. If it did come from us some how, even though we are normal, we will have to go through fertility procedures to avoid the same complications. I never thought starting a family would be such a long and painful road but all we can do is continue supporting each other and hope that some day we will have the little family we always wanted. But Brielle will always be our first child and I will always keep her in my heart