On April 14, 2008, we were excited to find out that I was pregnant for our second child. A routine ultrasound on August 15, 2008 (21 weeks) indicated that the baby was measuring about 2 weeks small and they were not able to see the face. Something about it made me feel very uneasy. We discussed it with my doctor and we were told it was nothing to worry about. I had felt for awhile that something was just not right; there was minimal movement compared to my first pregnancy for my son, Jackson, and I was not gaining weight. We decided to switch doctors. My new doctor agreed that the baby’s measurements were small and sent us back for another sonogram on Saturday, September 6, 2008 (24 weeks +). Before letting us go, the technician told us to take a seat in the waiting room while she went to see the radiologist. I knew that was not a good sign, but she came back and told us we were free to go. On Tuesday, September 9, 2008, I received a phone call from the doctor asking my husband and I to come into the office to discuss the sonogram. When we arrived, she told us that the sonogram indicated a small and miss-shappen skull, lack of nasal structure, and close set eyes. She would not even begin to speculate what could be wrong, but indicated she was sending us to Johns Hopkins Hospital (2 hours away) for a level II sonogram. We hoped and prayed with every ounce of our beings that the worst case scenario would be a craniofacial/skull condition. Never did we imagine it could be something that would take the life of our baby.
Our level II sonogram was September 12, 2008. I was 25 weeks pregnant. The doctor suspected Trisomy 13 based on the abnormalities found in the level II sonogram. I can’t even begin to recall exactly what the doctor told us. What I do remember is hearing the devastating news that our baby had a lethal chromosomal abnormality that was not compatible with life. I also recall her telling us that in the State of MD, you can terminate at any time for a lethal chromosomal abnormality. I was asked if I wanted an amniocentesis to confirm diagnosis and we agreed. Results from the amniocentesis confirmed that suspicion and indicated that our daughter, whom we had not yet named, had Full Trisomy 13.
The few days that followed were the most difficult as we talked, thought and prayed about what to do. I felt as though the doctors and genetic counselors were urging us to terminate, but it just didn’t seem right. We were offered no support or resources to help us through this time and to make an educated decision. I knew we had to have faith that we would get through this experience and I had to believe that there was a purpose for it. All I knew was that I did not want my child to suffer or to live without brain function. Six days later, while traveling back to Hopkins to meet with the NICU doctors, we decided to name our daughter, Faith Noel. This was the same day that we made our decision to continue the pregnancy.
The next 2 ½ months were spent enjoying every minute with Faith. I was giddy with every movement, rubbed my belly every minute that I could, told her all about her daddy and her brother, and those who would love her in heaven. I begged her to be strong enough to make it through pregnancy and survive labor. I wanted her daddy to meet her and I wanted her brother to hear her cry.
I was induced on December 4, 2008 (37 ½ weeks) and our family was with us at the hospital. They were able to share in our experience, know Faith, and help us to preserve precious memories. I was told that Faith’s birthday would likely be a very bittersweet day. In a sense, it was, but we feel such joy and love for our little girl and the time we had with her. Faith Noel was born at 4:59pm. She weighed 5 lbs 3 oz and was 17 1/4 inches in length. She had chubby round cheeks, dark wavy hair, and long petite fingers. She was amazingly beautiful and a true miracle...a blessing by far. We are so thankful that we got to hold her, hug her, kiss her, and hear her cry and breathe. Jackson was able to fulfill his big brother duties and comfort Faith as she cried. His final words to her were "I love you baby Faif." She fell asleep for the last time shortly before 9pm in our arms and looked like a sleeping angel. Her entire life experience consisted of receiving pure, non-judgmental, unadulterated love. While we understood we may not have long with her, Faith came and went in four short hours taking with her a lifetime of hopes and dreams we had for her. She was given to us to be our angel.
Life will never be the same for us. Faith has changed us forever and she has changed this world forever. Though I can't explain the depth of pain I have felt, I also underestimated the joy. I can say that I never truly understood unconditional love until Faith was placed on my chest. I miss her every moment of every day and I suspect the pain will never truly go away, but I never imagined that the joy, peace and love Faith brought to our family would far outweigh that pain. I am so blessed for this experience and for Faith’s miraculous life. It is because of Faith that we are able to focus on the great experiences and memories of my pregnancy and of Faith's birthday. She has given us strength, hope, and courage.
We celebrated Faith's life with a mass of angels on Saturday, 13 December 2008. It was such a beautiful and touching service and at the end we sent pink and white balloons up to Faith in heaven. We realized that day just how much love and joy Faith brought to this world. She is such a blessing to us. As Faith’s Pop stated in her eulogy, “Baby Faith brought us together as a family, she taught us the importance of every breath, she was a vessel for our love and proof that the Lord is with us and working in our lives every single day.”
We were also lucky enough to have photographer, Jill Meyers, from ‘Now I Lay Me Down To Sleep’ Foundation come to the hospital and spend some time with us before Faith passed away. She captured so many amazing moments. We will be forever thankful and Faith will be forever in our hearts.
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