The first ultrasound appointment would mark the beginning of the roller coaster ride of our journey. A missed heartbeat at my 8 week appointment would move to an ultrasound only showing a tiny little bub measuring 5 weeks.

At my 19 week growth scan it confirmed my suspicions that we were indeed having another little girl. A little girl we would name Anabelle. After losing my mother-in-law only a few short months before, Anabelle would be the start of something happy we could all look forward to. A happy welcome to the dreaded start of the new year. She was to be named after my husbands mom: Ana.

I went into my ultrasound appointment alone. Scared. Worried. Another doctor came in, and I knew that moment something wasn't right. I saw a glimpse on the screen. Her face was shaped differently and her belly just seemed small. I left the appointment confused, worried and needing answers. I told the doctor my concerns and instead was met with sad faces and blank stares.

The following day after my appointment I got that call that would change our lives FOREVER. "Mrs. Rodrigues, I am calling to let you know that we received your blood work and your daughter's recent ultrasound pictures. I just want to let you know that we have noticed that she has some chorid plexis cysts on her brain. This could possibly be the result of a chromosomal defect, but in 90% of the cases, they go away on their own and its nothing to worry about”. This is when I asked her what kind of defects it could be and she told me "Trisomy 18 is one of them." Immediately, I went searching and what I found was devastating. Death and "Failure to Thrive'' were pretty much the theme. I told myself I would wait until further testing, but still continued to find out all I could on the subject. Calling, researching, talking with everyone from the online group, parents with children living with Trisomy 18, speaking with doctors and staff with knowledge on the subject.

We were immediately seen by a high risk doctor and prenatal genetic counselor. Our genetic counselor, Caroline, was amazing. We went over statistics, and she let us know what "COULD" be the outcome, but because of my age and testing results, not everything was adding up to a conclusive diagnosis. Many of the Doctors begged us for an amnio but I declined several times. I knew that if the amnio proved she did have Trisomy 18, she would not be given life saving interventions when she was born. This was not an option for my husband and I. So we said no thank you. The risk of the amino far outweighed the answers to find out her genetic makeup.

Her arrival was stressful. I found myself arguing with a doctor that wanted me to have an amniocentesis before delivery. I was 37 weeks and we had learned that morning she had stopped growing 2 weeks prior. I knew it was time to deliver her that day. My husband quickly made arrangements for our oldest daughter to stay with a friend until my mom and sister arrived later that night/early morning. They brought me upstairs in the late evening and things moved pretty quickly. It was decided before delivery that if Anabelle was breathing on her own I would hold her before moving her to the NICU where her daddy would follow.

Anabelle Eileen Martin Rodrigues was born on November 11, 2004 at 6:19am. Weighing in at 4lbs 6 oz and was 17 inches long. She was beautiful, she was tiny, and most importantly- she was ALIVE!

Anabelle showed all the classic signs of a baby with Trisomy 18. Low birth weight, strawberry shaped head, fingers that were crossed and wouldn't open up, small eyes, nose and mouth. Ears that were shaped as if she were a little elf. Small belly. Issues with feeding and breathing. But you know what, we loved her just the same.

The next few days were an emotional roller coaster. From hearing doctors and nurses tell you she would not survive the night to others telling you that I had to just let her go and stop dreaming a life that she would never have. I knew the outcome, and I knew the statistics. The difference between myself and all those people around me was that I had hope. Hope for her,for myself, and for other parents dealing with this diagnosis. I didn't want Anabelle to be just a number in a book. I wanted her to do as well as SHE could do. And that was the most important. I would fight for her and with her as much as she needed me too.

We spent the first 19 days of her life in the NICU at WOMAN AND INFANTS HOSPITAL. I loved her nurses. They were caring, warm, easily approachable, honest, and friendly. They took their job very seriously and loved the babies as if they were their own. The nurses called many times throughout the day. They took pictures when they could and kept us up to date with Anabelle's day to day health.

The day arrived for her to come home. My heart was beating out of my chest. I was worried she wouldn't make it off the machine. That she would pass away minutes or hours after they took the tubes out. I was a wreck, but didn't show it. I wanted her to prove to the doctors that Trisomy 18 isn't always text book. Despite what doctors, nurses, and others who knew our situation would tell us I knew I had made the right choice for our family. I had fought for my daughter when others would not. I had researched and talked to others who had little ones diagnosed and living with Trisomy 18. I had made a plan and stuck with it. I knew nothing was guaranteed. Except for one thing: I loved her unconditionally.

Anabelle left the hospital on November 29, 2004 weighing in at 3 lbs 15 oz. This was the most amazing day. Smiles and tears from hospital staff and doctors. Congratulations from everyone as we walked through the halls of the hospital. A special day for sure. We were going home to make memories and be a family. We had an amazing 13 days at home with her. From decorating the Christmas tree and baking cookies. To a special visit with Santa and family Christmas photos. Memories I cherish to this day.

Anabelle passed away peacefully in my arms at exactly one month of age on December 11, 2004. She was the sweetest little baby. She made it home. She gave us memories and time. Snuggles and kisses. Hugs and love. Our time was short but never taken for granted..

Anabelle taught me to fight for what I believe in. That no one person has all the answers. And that I can do anything that I put my mind to. I learned so much that year carrying her, giving birth to her, watching her here on earth, and then losing her. It's never easy to lose a child, but I didn’t look at it as losing a child. But gaining the best gift of all, an Angel.

If you or someone you know has had or is currently going through a diagnosis of Trisomy 18 please feel free to contact me at kiley@walkingalready.com or visit my blog at https://kileyandjason.blogspot.com. I am happy to help anyway possible.