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The Full Story

Amanda P


I delivered my twins, Roman and Luke, at 30 weeks and 1 day. Roman spent 124 days in the NICU and Luke spent 243 days in the NICU. They both weighed 2 pounds, 6 ounces at birth.


I was very high risk during most of my pregnancy as I was thought to have a condition called twin to twin transfusion syndrome, which can affect twins that share a placenta and cause uneven sharing of blood supply between them. This can affect growth and other things. I found out at 18 weeks that Luke also had esophageal atresia, where the esophagus is not attached to the rest of the GI tract, and possibly spina bifida.


I was told I would need a C-Section and was scheduled for delivery at 36 weeks and knew Luke would need immediate surgery. I was also told that Luke’s diagnosis was rare and complicated and might affect his quality of life. Instead of the originally planned 36 week C-section, I began showing signs of labor 10 weeks early at 26 weeks. I was put on strict bed rest but still had to travel to Duke (1.5 hours away) twice a week for monitoring. On the evening of week 30, my water broke and I went to my local hospital and was then sent to Duke via ambulance for delivery.


I was not prepared for the pain of active labor. My labor progressed quickly in the ambulance and once at Duke, I had to deliver vaginally without any medication. I was not prepared for all natural vaginal birth with no epidural. It was all a truly traumatic experience.


Once my twins were delivered, they were rushed straight to the NICU - as Roman had breathing issues and Luke was born with his spinal cord visible. It was a good five hours or so hours before I was able to see my twins. All I knew was what the NNP yelled out “look at that head of black hair on Roman!”


After birth was a whirlwind - they’re throwing everything at you: breast pumps, ice pack panties, squirt bottles, and stool softeners. As a first time mom I had no idea how to pump. I was so grateful to the nurses and other members of the staff that were able to help me and answer my questions during this scary and confusing time.


Within 23 hours after birth, I was signing consent forms for Luke’s first of soon to be 14 surgeries. I was so sleep-deprived and learned that on the consent forms there are the words “risk of death” - words a new mom or any mom never wants to sign off on but knew it was necessary to help my baby. The NICU was a roller coaster of good days and bad days - I quickly realized my twins' NICU journey was also a spiritual journey for me: my faith and trust in God is what got me through.


To other NICU mamas: do not get discouraged. Be your baby’s advocate. Do not be afraid to speak up or ask questions. Lean on your NICU support teams - such as the Mother’s Day Project! Do kangaroo care - skin to skin as often as possible. And remember your baby is growing and getting healthier each day - some days they have set backs and that’s ok! Keep your faith and have trust in the hands and knowledge of the staff that are tending to your baby! All babies grow at their own pace and as the saying goes, preemies might be tiny, but they are mighty! Today my preemies are six years old and thriving!

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