1.) pseudonyms “Clem the Phlegm” (thanks Julia), screaming Mimi, Minnie
2.) We did crazy amounts of testing during pregnancy which revealed nothing. We do not know which gene is mutated, therefore we cannot perform a specific test for the disease.
3.) 32 or 34 weeks gestation, Clementine began to plateau in her growth just as Beckett had. My care was transferred to Brigham & Women’s in Boston, a tunnel connects them to Boston Children’s Hospital.
4.) I was induced at 38 weeks pregnant, Clementine was born VBAC on August 16th 2012, 1 year and 11 days after her brother.
5.) Testing was performed at 2 hours and 8 hours old, both blood tested were positive. Clementine had inherited the same genetic condition as her older brother.
6.) After 3 weeks in the NICU, our family of five went home. We settled into a comfortable routine, I quit my job to take care of our kids full-time.
7.) Clementine thrived at home just as her brother had, it was amazing to watch.
Pictured: Ben and Beckett at the playground. While Clementine was in the NICU, we lived in housing near the hospital. During the day one of us would take the kids to play and the other would go to see Minnie in the NICU. We would trade off at lunch and then have dinner all together.
Pictured: Our first ride home as a family of five.
Pictured: Minnie’s first Halloween.
Pictured: Christmas 2012.
Pictured: Easter 2013.
Pictured: Beckett and Minnie, because they were so close in age and developmental ability Ben and I treated them much like twins. They were inseparable.