Emma's Story

My daughter Emma Nora was born at 3 pounds, 16”. She was Baby B and her twin sister Ella, Baby A. The day they were born Emma was measured by the MFM specialist at just over 5#. After an emergency c-section delivery because there was very little fluid in Emma’s sac. Once delivered Emma was helicoptered to a nearby Children’s hospital. She was diagnosed with IUGR, Failure to thrive, Adrenal Insufficiency, and GERD. She spent her first 30 days of life at the NICU which was devastating to this new twin Mom. I had spent a lot of time in a twin Mom group on Facebook excited to learn how to juggle twin life. For the first month I learned how to juggle NICU parental visiting hours while her sister sat in the waiting room with her father. It took some time to learn how to care for her from her doctors and nurses. I couldn’t wait to have my girls’ home together.

Emma has made tremendous strides since her birth over 8 years ago. She has maintained her blood sugars with a good diet to maintain her adrenal insufficiency. She had a NG and then G tube at 10 months and 13 months, respectively. Last year at 7 years old, her G-tube was sewn up because she has successfully learned to eat and take her medicine on her own. Her strabismus has been corrected with an adorable pink glasses.

Emma is a developmentally delayed 2nd grader who is currently in a 12:1 classroom. The classroom is smaller which allows her more 1:1 attention from her dedicated and adored teacher. She has been learning to tell time, count money and read books. Emma began life non-verbal and slowly learning sign language from the Early Education speech therapists. She has received physical, occupational and speech therapy at school since she was 2.5 years old. Emma is a talkative, funny, smart, adored daughter who loves to make cards for her Momma. They always have drawings of the two of us holding hands and smiling. She comes to me several times a day for lots of hugs and kisses which couldn’t make me happier.

It was pretty terrifying for me to get her ZTTK diagnosis in the beginning, especially since there were only a handful of cases in the world. Our lives are so much richer and fuller for bonding with the parents of this group who have helped me with their constant love and support more than they will ever know.