Monday, March 4, 2013

Trisomy 4

Trisomy Awareness, featuring Brianna, with Trisomy 4P

Brianna born 9, 12, 2007 is currently 5 years old. She was born at 36 weeks weighing 5.1lbs measuring 16", she was on the smaller end but as far as we knew then, nothing was wrong with her. She stayed 5 days in the NICU learning to eat by mouth. We took our perfect little girl home. The next few months flew by, how I wish we could go back in time, she had a hard time sucking a bottle and was always congested but as far as we knew everything was ok and those were just preemie problems. At 5 1/2 months old Brianna stopped breathing and fainted unexpectedly in my arms... Remember we didn't know Bri had anything then, we were in for a surprise. That same day March 9, 2006 Brianna had her first of many surgeries to come. She had emergency surgery at 2a.m for intestinal malrotation and remove her appendix. Since this was considered an abnormality she was sent for a brain CT scan and genetic testing. Still in the PICU we learned then that our baby has Agenesis of the Corpus Callosum (missing the center of her brain) and that she had a chromosome translocation of chromosome 4. (At that time they didn't do the micro array) so we didnt get the "Trisomy 4 diagnosis). This, this is where our journey begun. From then on she had 2 more surgeries before she turned one year old. Brianna was discovered to have aspiration dysphagia and received a feeding tube at 6 months old. She was later discovered to have severe reflux GERD so she had the fonduplication surgery. In between surgery number 3_6 Brianna was hospitalized numerous, countless times due to uppet respiratory infections, pneumonia, lung collapses, and respiratory viruses such as RSV and Adenovirus. She later received ear tubes placed followed by removing her adenoids. Her latest surgery and scariest by far was a 43 day hospital stay where she had her 6th surgery to place a tube in her left lung to drain the fluid that had built up. Brianna spent 14 days on a ventilator, 21 days in PICU and a total of 43 days at childrens hospital of orange county. They were pushing us to give up on her and put her on hospice, they said her left lung was dead and it wouldn't be long until her right one gave out. We decided to leave it up to God, we refused hospice. By the time she was discharged home on Sept 20,2012 her left lung was functioning again (with severe and permanent damage, but it was breathing and koving air again) the consolidation was gone and she came home. This is also when they finally did the micro array finally and got our Trisomy 4p diagnosis. Now 5 months later and counting after they were giving up on her shes running around happy as can be. She is our miracle with Trisomy 4P she is a blessing to me, her mom, her dad and older sister Hailey. Shes had some set backs since getting home but nothing therapy and antibiotics hasn't helped. She is our joy, our pride, our love, our life. Love mommy

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