Birth Date: June 1, 2018
Diagnosis: Dysphagiay & Hypotonia
Theme: Sun, Moon & Stars
Due Date: March 1, 2022
Juliana's Story
Juliana was born June 1, 2018 by scheduled c-section. I had a very complicated pregnancy with severe anemia, gestational diabetes, polyhydramnios, and group b strep. She was born dark blue and not breathing, with low apgar scores, and was in the NICU for the first 24 hours. My sister was actually the first to see her (not me) due to this reason. At birth, she was diagnosed with hip dysphasia, hypotonia, and borderline failure to thrive as she lost close to 10% of her weight in the first day. For the hip dyspahsia, we had to double diaper the first year but it seems to have corrected itself now. The other things not so much...
At 7 weeks, Juliana stopped breathing and was admitted to the hospital overnight, resulting in a diagnoses of BRUE (Brief Resolved Unexplained Episode). She was in early intervention from the time she was born to the time she turned 3 when they no longer do early intervention in New Hampshire. She received physical therapy, speech (communications disorder/speech delay), and occupational therapy for the first 3 years of her life and continues to receive occupational therapy and speech therapy. At two years old, she was diagnosed with sensory processing disorder. She has a very hard time with any lights on, if there is any noise that is slightly loud, if there is anything out of place in the house, if she is not able to wash her hands 100 times a day, and if she has any dirt on her clothes.
From around 1.5 to now, 3 years 4 months has been our hardest period. In February 2021, she was hospitalized out of state for 5 days due to RSV, Fluid in her ears and lungs, pneumonia, and unstable oxygen. She was shortly after diagnosed with asthma due to her frequent respiratory infections. She often gets sick even when no one else does. Things seemed OK for a little while ... other than the frequent illnesses and sensory stuff, but then again when downhill around March 2021 when she was diagnosed with sleep apnea and had her adenoids out. Then in May she had tubes placed in both ears for frequent ear infections That didn't seem to help much as she got another ear infection almost exactly a month to the day that the tubes were placed. In June 2021, she ended up with Parainfluenza 3 which turned into croup and she spent 5 days in and out of doctor's offices, urgent cares, and hospitals again. In August, she was diagnosed with RSV again but this time we were lucky enough to stay out of the hospital. Also in August, she was diagnosed with dysphagia meaning that she aspirates on 70% of liquids. Anything that is not solid (ie: drinks, soups, medicines, etc) has to be thickened.
We are currently working with out of state doctors to figure out the cause. It is suspected she has a cleft as well as an autoimmune disorder and a suspected genetic disorder that occurs in 1 in 17000 kids.
Juliana M.
New Hampshire
"Juliana absolutely loves her quilt. Thank you!"
