So a little history about Jessa.....
When I was about 20 weeks pregnant, Jessa's right ventricle of her heart was enlarged, boggy, and not contracting well. We were followed by a cardiologist once a month up until our delivery date. Of course they prepared us for the worst case scenario...multiple heart surgeries and possible pacemaker within the first year of her life. July 27th around 10:50am Jessa Michelle Piotrowski was born weighing 5lbs 3oz! She was immediately transferred to the NICU for observation. Her echo showed that her right ventricle was still enlarged and her QT interval was prolonged. The decision was made to transfer her to Childrens Memorial Hospital so that she can be monitored by a cardiologist 24/7. Jessa had daily echo's and ekg's. Gradually her heart function and size was back to normal. She was released about 1 week later. When we brought Jessa home she was just DARLING! Although she was tiny... 4lbs 11oz, she was a very easy and content little baby.

We started to notice around 3-4 months of age, that she wasn't quite reaching her "milestones." She could not track objects with her eyes, hold her head up, or tolerate tummy time. Her pediatrician suggested we start her in the Early Intervention program. Jessa started to see a physical therapist twice a week, occupational therapist once a week, feeding therapist once a week and just recently vision therapist once a week. She is a busy little girl!!!!
Needless to say, Jessa has been progressing well. Although she wasn't making leaps and bounds, we are so pleased that Jessa is continuing to make gradual improvements.

Although Childrens Memorial Hospital has provided great care, we have decided to take Jessa to the Mayo Clinic in Rochester, MN. And so far, we have been pleased with how efficient they are. And needless to say, Jessa has been such a trooper, as she has been put through many tests in the 1st year of her life. She has had EKG, EEG, MRI, ECHO, SKIN BIOPSY, BONE AGE TEST (x-ray), and several blood and urine draws. She is currently followed by a great team of specialists. Neurologist, Ophthalmologist, Cardiologist, Endocrinologist, and a Gastroenterologist. So far over she has been tested for over 200 metabolic disorders. Also chromosomal abnormalities, hormone levels, liver and kidney functions have all tested negative or within normal limits.

Jessa has been diagnosed with Hypotonia(low muscle tone), Global Developmental Delay(although she is 1yr old she has the development of a 3 month old), Optic Nerve Atrophy(the brain doesn't get complete vision information, therefore, vision can be blurred), Cortical Vision Impairment(confusing, but from what I understand..the brain is not processing the visual information), and Involuntary Movements. Her EEG's have been abnormal (which means seizure-like activity) so Jessa has started to take Keppra (an anti-seizure med) and she has been doing much better.

As a mom, it is frustrating to not have any answers. What caused her to have this heart issue in utero and how did it miraculously heal itself 1 week after birth? What has caused her to have hypotonia, developmental delays, optic nerve atrophy, and seizures? Was it something I did when I was pregnant???
Something caused or is causing these medical conditions for Jessa. And I am well aware that it may just be idiopathic. But I feel that I have to be her advocate right now. She is giving us pieces to this complicated puzzle a little at a time, now we just need start putting it all together.

I am a little biased of course, but Jessa is a gorgeous little girl. She has the biggest blue eyes, and longest eyelashes anyone has ever seen. She carries so much emotion in her eyes. She loves to be tickled. She lights up when she hears her big sister laugh. She can follow me with her eyes as I walk across the room. She smiles when the wind blows in her hair. She kicks her feet in the water when its bathtime. She laughs out loud when Dave nuzzles her neck. She brings so much joy to our family. We love her so much and we are so blessed to have her in our life....just the way she is :)