Every once in a while, you get the chance to meet someone so special that they change your whole perspective on life. For me, it was the day I met Emilee. Miss Emilee was only 24 days old when I had the pleasure of meeting her and her parents. Born 4 weeks early with a plethora of genetic abnormalities working against her, this sweet tiny girl slept as sound as could be. At just over 3 weeks old, her mommy and daddy worked together like a well oiled machine. Changing, feeding, checking monitors, and adjusting tubes and cords. By now, they had a system for taking care of sweet Emilee, and she was just along for the ride.
As I stood back to photograph, I also watched. I was in awe of the amount of strength both Emilee and her parents had to be able to continue to fight and have such a positive and hopeful outlook. Granted Emilee didn't know any other way than what she was doing, but her parents did. Logan and Lauren could have easily give up hope in such an abnormal and strenuous situation. But they didn't. They stayed strong. For themselves. For each other. And most of all, for Emilee. I could tell you more about how meeting Emilee made me feel, but it wouldn't really mean much because I only met her that one day. That is why I am going to turn this story over to her mother, Lauren....
"To start our story off at the very beginning. We tried for a little over year before we got pregnant with Emilee. Unfortunately, I was diagnosed with Epilepsy soon after we decided to try and get pregnant. With the medication that I was initially put on, I wasn’t allowed to get pregnant. So that put a pause on our plans for about 4 months. We started trying again, and it took about 6 more months until we got pregnant. Roughly 12 weeks into the pregnancy, we found out that Emilee was sick. We were told that she had a very rare genetic disease and there were only a handful of documented cases and they didn’t think that she would survive. For the next couple months, the genetic counselor at our doctor’s office somewhat pushed for us to terminate. We thought very hard about that and in the end, we just couldn’t do it. The rest of the pregnancy was very emotional. She seemed to be doing everything that she needed to be doing, the only problem was that she wasn’t gaining weight. The doctors very much did not think that she would make it full term and always made sure that we understood that that was a possibility. On my 36 week check up, the doctor said that I needed to be induced because I had almost no amniotic fluid. Emilee was taken by c-section and weighed 2 pounds 7 ounces. She came out with deformed legs and we knew then that she wouldn’t be able to walk. She was placed on oxygen right away because of rib deformities, she had some fused ribs, which made her struggle to breath. The same day she was born, she had to undergo a surgery. She wasn’t able to defecate by herself, so she was given a colostomy. She only had one kidney, so to make sure that she wouldn’t go into kidney failure, she was given a vesicostomy.
As time went on, she was diagnosed with more and more: Arthrogryposis for her legs, Caudal regression syndrome for her colostomy, Chronic Lung Disease and Respiratory Insufficiency Syndrome for her lungs. She had an av canal, pulmonary hypertension, a tortuous aorta, and multiple ventroseptal defects in her heart. When she was a few weeks old, she lost her voice and turned out she had Tracheomalacia, which is a weakening of the trachea. Her spinal cord was severely curved because of scoliosis.
What was the catalyst to all of these defects was her chromosome 8. It didn’t turn out “quite right”, in layman’s terms, so that’s what the doctors think is why she had all of these wrong with her. The diagnosis is so rare that it doesn’t have a name, so the doctors called it by its technical term: Trisomy 8 q, monosomy 8 p, and duplication of homogeneous 8 chromosome. The doctor’s had never seen anyone like Emilee and they liked to call her “a very complex baby”. But to us, she was our rare little girl that we had always dreamed of. That’s where we got “unicorn” from. She was and always will be our unicorn girl."
Today was the worst day of our lives. Today, your mother and I said goodbye to you. We love you with everything that we are and couldn’t stand to watch you suffer. Baby girl, you were everything to the both of us. We dreamt of you everyday before you were in your mom. When we found out that you were coming, it was the best day of our lives. I’m so sorry that you were so scared today. Your mama and I thought that we were doing what was best for you. We both are unsure about that now. We struggle with whether we took every precaution to comfort you. I pray that we did. We tried and we stayed, even though every moment of this morning will haunt us for years to come. I love you Emilee. I just need to find a way to live without you. I’m not sure that is possible, having known you. Having held you. I’m unsure how to go back to a life where you aren’t there. I pray that your mother and I can find a way to cling tightly to the good days. Holding them in our heart as we have to go on. Emilee, I love you! I miss your soft skin, your smell. I miss watching your face as you sleep or looking into your eyes. I miss reading to you.
Good night my sweet Emilee.
To stay up to date on the organization as it grows and helps other families with little ones in the NICU, please like the Team Little Unicorns Facebook Page. To donate to Team Little Unicorns, please visit their GoFundMe Page. Initial funds are being used to get the Team Little Unicorns Organization up and running. Any subsequent donations will be given to the NICU at Memorial Hospital located in Savannah Georgia.