Baby Emerie with Mom & Dad

Finding out that we were going to be a family of four was so exciting for us. Our daughter Grace was going to be a big sister. Michael and I were going to have the 2 girls we've always wanted. We were sooo excited! We had already chosen a name for her, Emerie Hope.

I already wanted to start buying matching outfits for both our girls. It was going to be fun dressing them in matching outfits and having those mommy and daughter dates when they both got older. Everyone was so happy for us. At that time everything seemed so perfect.

When I went for an ultrasound at 27 weeks something was wrong. The ultrasound tech hardly said a word to me. It was very quiet in the room, and I sensed something was wrong. The next day I get a call from my Doctor's nurse. They wanted to see me asap! At that moment I realized that something was very wrong.

I saw my Doctor the day after getting the phone call. I went alone, because Michael had to work. I kept praying all the way to my appointment for it to be nothing. When she went over the ultrasound results, my world came crashing down. All I heard was heart defect, kidney defect, omphalocele. I couldn't follow what she was saying after that. I wanted to scream at the top of my lungs! I had to sit down and try to keep calm, because I had to drive back home, all alone. I called Michael and tried to explain what was happening. We both didn't understand. I cried on my way home. I honestly don't know how I made it safe. When I opened the door, I went straight to Michael and we both started crying. We didn't know what to do or say. He ended up calling off work that day. It was too much to handle all at once.

I was sent to a specialist for an aminocentesis, and ultrasound. The genetics counselor came in and told us it might be something called trisomy 18. She said Emerie would probably be stillborn and if she did make it out alive, she wouldn't make it to her first year. I know it isn't the counselors fault, and I know she had to explain everything to use. I just wanted her to shut up and to stop telling us all these bad things! The next question was if I wanted to terminate. That felt like a stab in my heart. Of course not! That would never be an option for us. Only God knew when he would take Emerie, not some person.

During the following week we got a call confirming that Emerie was diagnosed with trisomy 13. As the days went by we didn't talk about anything that was going on. I guess, because Michael and I were really hurting, but didn't want the other to know. Neither of us wanted to face this horrible reality. At my next appointment, Doctor Sadjadi wanted me to watch a video, Carrying Colin. It was the most beautiful and touching story I had ever seen. She encouraged me to contact Amanda at Embrace The Journey. I wasn't going to, but after watching Carrying Colin my whole attitude changed.

I came home and emailed Amanda right away. She was a total blessing to our family. In the weeks that followed, she came to our home and guided us every step of the way during this sad journey we had ahead of us. I couldn't wait to get everything over with. Amanda and Doctor Sajadi encouraged us to Embrace our journey with Emerie while she was here. We did everything we could to try and enjoy the time we had left with Emerie, even though she was in my tummy. On mother's day, Stephanie the photographer for Embrace The Journey, did a maternity shoot for us and that was a blessing all on it's own! We also received a 3D ultrasound session and a teddy bear with Emerie's heart beat recording. Everything was so imperfectly perfect. We didn't know what was going to happen, but we just wanted to love on Emerie as much as we could while she was here.

On memorial day I sent Amanda a text, because I hadn't felt Emerie move since the day before. At this point I was 37 weeks. We started packing our hospital bags, but there was an empty feeling. I knew that something was wrong. When we finally got to the hospital, our worst fears had came true. My Emerie Hope had gained her Angel wings. There was sadness in the air, everybody could see it in our faces. We went home and did as Amanda told us. To just absorb everything and to keep loving on Emerie. It was the hardest thing ever. On Wednesday May 28, 2014 our Angel was born. During my c-section, Amanda's mom Cyndi was there to help us with everything.

After Emerie was born Stephanie came to the hospital to take pictures of our family with Emerie. It was the worst day of our lives. Everything that we had hoped for was no longer going to be. Thank you to Amanda and Embrace The Journey program. Without you everything would have been different. It has truly been a blessing to have met Amanda, Stephanie, and Cyndi. Because of Emerie I am the person that I am today. Because of them I embraced my journey

   

Back to Trisomy 13

You can read more about Trisomy 13 and receive incredible on-line support through the private message board on www.livingwithtrisomy13.org

-The support, information and encouragement provided by the PPFL parents is not meant to take the place of medical advice by a medical professional. Any specific questions about care should be directed to a health care professional familiar with the situation.