Wednesday, May 29, 2013

Riley's Story, by her mama

Post by Lynn

Our pregnancy started off with one baby and an egg about 5 to 6 days difference in age. We returned in two weeks and there were two babies. My husband Jeff and I were so excited, TWINS!!! Their ages were funny to us being so different in age but we were so happy.

Our pregnancy had a few scares however we were seeing the babies growing each ultrasound and we were falling more and more in love with them every day.

Our lives changed drastically at our routine check up at 19 weeks. The ultrasound tech stopped showing us all the neat pictures and said she was having problems getting good head measurements on baby A. She took so many pictures and was very still. She then said she needed to have the Dr check the measurements. The two did even more checks and measurements and they told us to dress and meet them in the office.

We were told that baby A had a defect and it was incompatible with life. Our baby would die either before or during delivery or shortly there after birth. Our hearts broke. I was scared and sure that the Dr was wrong. I asked for them to do an amnio to confirm the findings.

There was no chance of a mistake the news was 100% confirmed. Over and over during our pregnancy we heard the words and had to repeat them ourselves when we had ultrasounds with a tech that didn't know the defect or a new Dr that was not familiar with our family and our girls.

I wanted to bond with our babies and not just call them A or B we had not planned on finding out the sexes however the diagnosis was heart breaking and we wanted to know them both as much as we could. Our little ones were both girls and their names were picked even before pregnancy Our girls are Riley Sophia and Abby Nicole.

Our pregnancy was rocky from that point on and we were in and out of the hospital and on bed rest. Our girls were doing well and growing nicely however I was dilating and having contractions. My girls were born at 30 weeks when my water broke and contractions were not stopping.

Riley did pass away shortly after birth however after meeting other moms online I have found that other babies are surviving to go home with their families and surviving in some cases weeks, months and even years. I never thought babies like our Riley were going to thrive, I was amazed that she could have had more time with us since the definition seemed so bleak.I then found there was so many other conditions that were labeled as incompatible with life. I feel that these infants deserve more than a blanket definition that doesn't give a clear pictures of their potential. There isn't a severity listed with the conditions only that they are expected to pass away before, during or just after birth. I hope to change the terminology so they will be given hope instead of a definition so subject to interpretation.

Beautiful baby Riley <3
*Note: Lynn started a movement called "End Incompatibility With Life". The goal is to change the terminology used in medical settings. You can learn more and join the movement at the page: End Incompatibility With Life

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