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202104Brianna 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 head full 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.

IMG_1538_6_202When 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-tube 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.

Update

Brianna started eating solids by mouth at 7 months old and liquids soon after and she did not aspirate so her g-tube was removed soon after her first birthday. Her kidney reflux has been resolved without surgery and with LOTS of prayer.

IMG_1493_4_2Brianna started crawling at 18 months and walked just a few weeks before her 4th birthday because her grandma told her she would walk by the time she was 4. :) She started wearing glasses when she was about 2 years old. Brianna started preschool at age 3 and loved it. She was in a universal preschool program with typical children and other special needs children. She loved it! She is now in a Life Skills Kindergarten class and she is doing well. She is verbalizing some and also uses sign language and a mini mo communication device. She is 7 years old and will be in 1st grade in the Fall. She loves to go to "ool". She has lots of friends there including her teachers, therapists and some wonderful fifth grade buddies.

Brianna became a big sister in July 2004 to Preston. She loved him from the start and calls him brother. She also has a little sister, Larissa. She was born in February 2006. Brianna was very excited that we had a "girl baby".

IMG_1530_5_2baby02She loves music, especially Veggie Tales. She also loves swimming and swinging. She enjoys meeting new people and loves to give hugs. 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

dankris@dejazzd.com and kookinkris@gmail.com