Harper, an Autism Warrior

After trying for almost three years to get pregnant, Harper came along at just the right time. My pregnancy was going great, and everything was looking good. At my 20-week ultrasound, they found that Harper had little to no amniotic fluid around her, and the umbilical cord was wrapped around her neck twice. I was referred to an MFM doctor within the week to monitor her closely. Weekly scans were put in order until week 23 when my water completely broke, and I was sent to L&D for hospitalized bed rest. She stayed in until 28 weeks and made her appearance via C-section since she was in breach. She still had the cord around her neck, and testing came back that she had developed an intrauterine infection.

She was delivered and immediately sent to the NICU, where chest tubes, ventilation, and antibiotics were started. We were able to visit her the following day after her second round of blood transfusions. We learned then that she had a grade 2 brain bleed and possible club feet. She would need ventilation through a breathing tube and chest tubes for a while. After a month of making little to no progress, she was Medi flighted to a level 4 NICU almost three hours from home.

She was there for another eight months. While there, she was diagnosed with chronic lung disease, pulmonary hypertension, and another infection, and a g-tube was placed. She was on an oscillator for months until she was finally able to wean down to a combo of CPAP and high-flow oxygen. Numerous medications were given around the clock, and we were still holding our breath in hopes of taking her home. A trach was discussed for a while until she miraculously could tolerate a lower flow of oxygen and start weaning down. When she was seven months old, doctors were able to keep her stabilized on 2 liters of oxygen and CPAP with oxygen at night. That became her new routine, and she took to it beautifully! We began our journey home once we were confident that she would be stable.

Harper came home on numerous medications, had weekly blood draw labs, 24/7 oxygen, and CPAP at night, and her g-tube feeds throughout the day and night. By the time she came home, she was almost nine months old and so far behind on milestones. Multiple home therapists were assigned to work with her, and she slowly but surely hit those milestones! She went from barely being able to roll over to rolling, crawling, and eventually getting a walker to help start the walking process. Later on, she was able to start walking on her own with AFOs; She still wears them to keep her from walking on her tiptoes and to retrain those feet muscles.

At the age of 2, Harper was weaned off all oxygen, CPAP, and medications. We were over the moon thrilled to hear her body was healing and growing! Around this time, she was also diagnosed with global developmental delays, nonverbal Autistic, and the possibility of cerebral palsy and muscle spasticity. We never have a dull or boring day with numerous doctors and specialists on board. Working through Harper’s differences hasn’t been easy, especially with communication, but our persistence is a daily effort that is slowly getting easier. She finally got an AAC communication device, and we’ve been working on helping her better communicate to eliminate the frustration. We have also begun to understand more about how to help regulate her big feelings when an autistic meltdown or sensory overload happens, which is more often than not these days.

Harper has never let any of her adversities keep her from doing what she loves. She’s a fighter and such a strong little girl. I admire her and look up to her strength and perseverance each day! She’s our little superhero.
Harper is so loved by her daddy, mommy, puppy Duke, and her two Angel baby sisters, Amelia (21 weeks gestation) and Posie (18 weeks gestation).

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