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Brianna was born at Ephrata Community Hospital at 7:55 a.m. on Sunday, May 2, 1999. She weighed 6 lbs. 4 oz. and was 20 inches long. She had a headful of black hair. She appeared to be a healthy baby girl. We noticed her flat, broad thumbs but never thought it was a sign of any problem. Late Sunday night she had difficulty breathing and they called a pediatrician in to look at her and he heard a heart murmur. So he wanted her transferred to Hershey Medical Center to be seen by a pediatric cardiologist. Monday, May 3 was one of the worst days of my life. We were told by the neonatologist that she has a rare syndrome called Rubinstein-Taybi and that there is nothing they can do for her. They made it sound to us like she wasn't going to live very long. On Thursday, May 6 she had a PDA ligation. That brought down her respirations which was why she was having trouble breathing.
When she was 2 weeks old and we were planning to take her home, her 02 sats kept dropping when she was feeding. So they did a swallow study and found out she was aspirating formula. Her epiglottis in her throat hadn't matured so they would need to put a g-tuve in to feed her until it matured. She had surgery to put the g-tube in on May 26. After a whole month in the neonatal intensive care unit she finally came home on June 4. We were so HAPPY to have her home.
August 24 she had surgery for her tethered cord. She also has reflux of the left kidney. Brianna gets physical therapy once a week because of poor muscle tone. She also gets speech therapy for oral stimulation because she gets nothing by mouth. She gets vision therapy every other week. She is improving greatly with the help of all her therapists. She loves music and water and charms all by her BIG smiles. She's a real sweetheart and we love her dearly. We're thankful the Lord has blessed us with such a special, unique child. Daniel, Kris and Brianna Zimmerman Ephrata, PA KZimme@Supernet.com
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