Skye's first 100 days

When our son Heaven was born on July 26, 2008, we called him our miracle. My wife Aires and I waited for six years for Heaven.

When our daughter Skye was born on December 15, 2012, we called it a miracle that she survived her first hour. Aires and I waited if Skye would make it through.

Both Heaven and Skye are APAS babies. APAS stands for anti-phospolipid anti-body syndrome, common among women who have difficulty getting pregnant or carrying a full-term pregnancy. Aires endured countless reproductive immunologic treatments to see the pregnancies through. Heaven was born at 31 weeks; Skye at 34 weeks.

There was much excitement with Heaven. With Skye, trepidation. At 24 weeks, our doctors suspected a chromosomic disorder. Aires had too much amniotic fluid. Skye was too small for her gestational age. One particular ultrasound image revealed a clenched fist.

We Googled "clenched fist ultrasound pregnancy." The results were heart-breaking. For the first time, I came across the term, Trisomy. Trisomy refers to babies with an extra chromosome. There are many types of Trisomy. Skye's turned out to be Trisomy 18, a lethal trisomy.

The more we researched about Trisomy 18, the more uncertain we were about the pregnancy. Skye's condition was confirmed when she was born. Her neonatologist cited clinical impressions: small face, low-set ears, clenched fists, rockerbottom feet, weak cry. Only a chromosome analysis could confirm the condition. The test came two days later. The geneticist confirmed that Skye has Trisomy 18 or Edwards Syndrome. With it came another confirmation that Skye has three holes in her heart.

"Incompatible with life." This is the most common description for a Trisomy 18 baby. About 95% of them do not live beyond the first month. They die due to respiratory or heart problems.

Skye survived the first hour, first day, first week and first month. And now her first 100 days. We too have survived sleepless nights. All we wanted then was to take Skye home.

We no longer wait if Skye would make it through. We just treasure every second, minute, hour, day and night we have with her. To us, Skye is the miracle of all miracles.