Mom to Emmaliese Fuerte
Born December 8, 2011
Died January 15, 2012
Being pregnant with Emmaliese was wonderful. No signs of high blood pressure, swelling, or morning sickness, and I actually had just my baby bump, not round all over. I had a very uneventful pregnancy and labor. After nine hours of labor and three pushes, Emmaliese was born at 7:32 am weighing 7 pounds, 8 ounces and measuring 20 inches.
I held my baby girl for a few minutes and then handed her to my husband so that the doctors and nurses could clean me up. Emmaliese was with us for about 10 minutes and then she was taken to the nursery to get cleaned up and checked out. That was the last time I saw my beautiful baby’s face free of tubes, tapes and breathing aides. About four hours later I still had not seen my baby. I buzzed my nurse and instead a pediatrician told me that some babies need extra help breathing but that she would be fine, that I would have her in my room by night time. That never happened ,and three days later I was discharged from the hospital without my baby. Doctors didn’t know why my full term healthy baby girl could not breathe on her own, why she needed help from a ventilator. She had no infections; all the tests they ran came back negative.
On her third day she was transferred to Lucile Packard Children’s Hospital where she had surgery to be placed on an ECMO machine because she was very septic and needed an extremely large amount of oxygen. Seeing my baby girl on that machine broke my heart. A week after being placed on ECMO, she made progress and was taken off the machine, but she still needed help from a conventional ventilator. Doctors at LPCH ran more tests, and the only thing they could tell us was that she had a viral pneumonia but that they still didn’t know why her lungs were so sick. They gave her antibiotics and she was put on a morphine and sedation drip. My little girl became the big girl of Room #4 because she was surrounded by preemies.
Emmaliese was in the NICU for 36 days and she never got off the ventilators. She had all kinds of specialist look at her case and in the end they tested her for Surfactant Deficiency. It took a little over three weeks for the results to get back, and in those weeks while we were waiting, we spent as much time with our little girl as we could, never giving up hope and looking forward to the day that we would be able to take her home with us. The results came back and they confirmed what the doctors had suspected: Emmaliese was born with a rare genetic condition that unfortunately, in her case and in most cases, proves fatal. She was diagnosed with Surfactant Deficiency ABCA3: her lungs couldn’t exhale; they were unable to exchange oxygen and carbon dioxide. My baby girl’s lungs didn’t do their job and she couldn’t breathe on her own.
Emmaliese was a fighter; she even pulled her breathing tube out once. My husband and I only held her a total of five times each. Yes, I wish that I had my baby home with me, but I wouldn’t trade the days that we got to spend with her for anything. My little girl hung on until the doctors were able to find out what was wrong with her. In her case nothing could be done and her body was starting to show signs of stress and of being too tired. She was also diagnosed with Chronic Lung Disease due to being on ventilators for so long.
She taught me how to be brave and strong. My husband and I made the hardest decision and decided to take her off the ventilator; she became the most beautiful angel! Neither my husband nor I knew of this genetic deficiency. We have been tested and as of today we are still waiting for the results. Once we get the results we will know the chances of this happening again with further pregnancies. I never thought that I would be in this club that no one wants to be in. I never thought that I would have to bury my daughter. When I first saw the positive pregnancy test I never thought that this would be how it would end. I always thought that I would carry my baby in my arms and not just in my heart. I will never forget her big beautiful eyes and that smile that would always brighten our day.
Milagros blogs at www.rockstarpinkbow.blogspot.com.
You can contact her at firstname.lastname@example.org.