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Amazing Grace: Hope in the Face of a Rare DiseaseWhat would you do if your child was diagnosed with a rare disease and you weren’t sure how long she’d have to live?
My husband and I met in our freshman year in college. We had been together since 2004 on our sophomore year, managed to finish our degrees and went on to pursue our own careers. Talks of getting married came up every now and then, but we were planning to save up first. In January 2009, however, we found out I was pregnant.
Our respective families were a little disappointed at first. Eventually, the disappointment turned to excitement, as our baby is the first grandchild on both sides of our family. To say that she is wanted and loved by everyone is an understatement. My husband and I would spend hours poring over articles about pregnancy, and even spent time dreaming of what he or she would become one day. My husband would even recite to her all the countries and their capital cities, while classical music played in the background.
I had a relatively uneventful pregnancy, but nearing my 37th week, my blood pressure remained high. For fear of preeclampsia, my ob-gyne decided that I my baby should be delivered at the soonest possible time.
Sophia Adele was born on the 12th of September, 2009. She was relatively small, but her APGAR scores were perfect. She gave me a scare though, when during her first night of being roomed-in with me, she turned blue. I screamed for my mother to wake up and call for help. The nurse on duty then assured me that Sophie's small body just couldn't handle the cold air-conditioning. A warming lamp was placed over her, and soon her cheeks returned to a healthy color.
Needless to say, I did not sleep well that night, or the nights following that incident. I was so afraid to lose Sophie when it had only been days that I held her in my arms.ADVERTISEMENT - CONTINUE READING BELOWCONTINUE READING BELOWRecommended Videos1 of 4 NEXT
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