“In our household, we celebrate the small things.”
Caroline Grace, Trisomy 18, 05/11/2015, Grosse Pointe Farms, MI
We didn’t know how much time, if any, we would have with our daughter.
We found out that she had Trisomy 18 at 23 weeks gestation. We prepared for her birth by speaking with various doctors/specialists and other parents.
She did not need to spend time in the NICU. She scored 8 on her APGARS. The NICU nurses came into our room to assist with ng feeding. We left the hospital after 3 days and have since been working with a Hospice and Palliative Care program that have helped us in so many ways.
Caroline will be ONE in 9 days.
When we received her diagnosis, we vowed that we would always follow her lead. God not only chose us to be her parents, but he chose her for us. His plan was intentional.
Caroline has several anomalies ranging from facial paralysis, microphthalmia, clenched fists, weak muscle tone and severe heart defects. She cannot eat orally and is fed via a g-tube.
She will have surgery in July to repair her large VSD and pulmonary stenosis.
She has gained weight slowly, but is almost 16lbs. She can eat orally (and has passed a swallow study), but this is a work in progress. She is slowly opening her hands and uses splits. She receives OT and PT a few time a week from Hospice to help with eating, low muscle tone and opening her hands. We also work with our local school district/Early On so that she receives additional therapy and support.
Caroline, at 11 months of age, can hold her head up, but often gets tired. She is on the verge of sitting unassisted. She hates laying on her stomach, but can almost roll over! She has one tooth 🙂 She coos. She smiles. She even giggles.
In our household, we celebrate the small things. Caroline has a brother and sister who adore her. Parents who chose to give her life. She is loved beyond belief. Every day we get to spend with her is a gift. Although, we don’t know how long her journey will be here on earth, we do know that she is very much compatible with life.
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