Tucker, Jessica Mary

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[left:31f90694c3]http://www.cherubs-cdh.org/Album/new/tucker-jessica.jpg[/left:31f90694c3]We were in shock when our second daughter was born with CDH. I remember she opened her mouth to cry, and nothing came out. They took her from me and bagged her (blowing holes in her tiny lungs). She was given oxygen and taken from the room. It was hours before we got the whole story. Doctors were telling us our baby had a life threatening birth defect we had never heard of. She was put on a vent and given nitric oxide. At 3:00 am (before she was 1 day old) they told us her only chance was ECMO. She had three chest tubes and was no longer responding to the nitric oxide. She was rushed to Columbia Presbyterian in NY. We wondered how she could ever survive. We turned to God and put Jessie in his hands. Jessica had her surgery while still on ECMO (total of 6 days). The doctor repaired the hernia with a gortex patch. Her liver was up in her chest and was enlarged. When it properly positioned, it did not fit in her stomach. Jessie needed three additional surgeries to completely close the suture. She recuperated there for 3 1/2 weeks. Then back to Morristown for another 3 weeks. I spent all my time at the hospital which was very hard on my then 6 1/2 year old. Thank God for my mother in-law who got on a plane to come and take care of us. Jessie surprised all the nurses when she started breastfeeding easily. But, she wouldn't nurse long enough, so the feeding tube stayed in. She came home 2 days before Halloween with the feeding tube, oxygen, apnea and pulse ox monitors. Within a week, she DC'd the tube, and slowly but steadily gained weight. I nursed her every 3 hours around the clock. Jessica had a bronchoscopy at 3 months. A washing showed a pneumocystis. Her pulmonologist told us you usually only see that in HIV positive patients. Because she received blood while on ECMO, Jess needed the blood test. Thank God it was negative. Jessica remained on oxygen until she was almost 7 months old. She is developmentally right on track. She is walking and putting two words together. However, her head size is less than the 5th percentile. They tossed the term microcephaly at us, though she is not symptomatic. We thank God every day and pray for Jessie's continued health and progress. Jessica 16 months old, R side hernia, gortex patch, nitric oxide, ECMO, pectus Right lung fused at top 85% capacity. Happy active girl, loves ice cream.

Written by Jessica's mom, Sophia Tucker (New Jersey)
1999