Spotlight Friday! Introducing Lauren Rae! She was prenatally diagnosed with Heterotaxy Syndrome at a 29 weeks follow up ultrasound. She was born full term in July of this year. Although we feel blessed to have gotten a prenatal diagnosis, allowing us to do some research and brace ourselves for the challenging road ahead, nothing really prepared us for what was to come. Lauren spent the first week of her life at the hospital to be poked, proded and scanned to confirm the details of her diagnosis, which includes: Asplenia, right-sided stomach, midline liver, intestinal malrotation, GERD, right atrial isomerism, complete atrioventricular septal defect, double outlet right ventrical, and pulmonary stenosis. Despite all of this, she was able to come home without any procedures and only three medications, enjoying a normal newborn lifestyle for the next three weeks. At 5 weeks, we brought her to the ER with digestive concerns and episodes of oxygen desaturation. She was flown by helicopter to the Childrens hospital of Atlanta, where she has spent all but a few days since. At 6 weeks old, she had a BT shunt placed in her heart and began feeding through an NG tube. Two weeks later she had a partial LADDs procedure, appendectomy and cardiaplication. The cardiaplication proved unsuccessful, and consequently her continued reflux caused her airway to swell, restricting her breathing. At 9 weeks old, she added Laryngomalacia to her diagnosis list. At 10 weeks old, she had a fundoplication, G-tube placement, and supraglottoplasty. She has proven to be quite the fighter and is recovering well from her most recent surgery. Our next goal is for her to gain weight and grow as much as possible in preparation for her big open heart surgery to repair her AVSD and promote more normal heart circulation. Lauren is little miss social, winning thr hearts of all the nurses on the cardiac floor. She loves country music, getting her hair brushed, and long walks through the hospital while in mom and dads arms. We look forward to taking her home so we can extend those walks through the neighborhood.
Posted on: Sat, 11 Oct 2014 00:26:07 +0000
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