Support Baby Avonlea through her medical challenges

“Something’s wrong with her ear, call “Peds.’” were words that hit our ears like a gong as soon as Avonlea entered the world. This would be the first of many moments to come where we would discover our daughter had difficult medical issues to face early and often in her life.

This birth defect, called microtia, was just one of a number of challenges and medical complexities we would learn about and face together as a family. She also had shoulder dystocia during delivery leading to muscle tension, a torn muscle in her neck and torticollis - therapies would be needed to help with them.

Learning about the long list of additional medical issues and diagnoses she would face has been a process of education in and of itself. Along with her stage 3 microtia (missing an ear) and aural atresia (ear canal/eardrum/ear bones etc. missing) making her deaf, there was hemifacial microsomia on the left side of her face and head (face is smaller and underdeveloped and is missing parts). Also retrognathia (abnormal jaw position), hypoplasia (underdevelopment of jaw) and laryngomalacia (floppy airway) impact her mouth, throat and neck. Moving from her head to the rest of her body she is affected by hypotonia, an overall weakness/low muscle tone of the left side of her body (palsy like on that side) which is still an ongoing process to get to the bottom of with her physical therapist and neurology. She also had and continues to have a feeding disorder with oral and pharyngeal dysphagia (difficulty swallowing), along with motor and mechanic issues with her mouth, lips and tongue. When trying to feed she choked, spilled milk, sputtered and was unable to move her lips and tongue well to drink. These issues have impacted many of her operating functions but early on the most significant challenge we faced was that since birth, Avonlea was unable to do what the majority of babies can do naturally - suck, swallow, and breathe easily.

Little by little we were discovering these different medical issues and realizing how they were combining to create a medically complex situation that was going to take a lot of time, focus, and persistence to overcome. It’s been quite the journey already and the intense pressures we have all felt over a prolonged period of time now have truly put us to the test. Many of Avonlea’s conditions will continue for the next few years of development and some will be permanent parts of her life. We are thankful that in the face of all of these struggles she has an incredibly joyful demeanor and seems to be one of the most resilient human beings to ever be given the gift of life.

We are posting this Go Fund Me to help offset the high costs we’ve absorbed daily while trying to ensure our daughter could eat, sleep, breathe, grow, develop, and in time, hopefully thrive. We have had to take up Avonlea’s case and advocate for her in a difficult and messy medical system. At times we have fallen through cracks due to the complexity of her health issues and in many cases we have had to seek second opinions and go outside of our insurance network to obtain medically necessary devices she has needed and also obtain the care she has needed due to her specific concerns and long wait lists that she could not have endured. Simply getting her to take in enough calories has been a front burner issue since birth. She has also struggled with sleep due to congestion from severe GERD, sandifer syndrome (movement disorder that presents similar to epilepsy with sudden/violent spasms of head, neck, and back arching), mild obstructive sleep apnea and hypopnea (shallow, restricted breathing which leads to apnea). There are also vestibular issues present due to the lack of components of ear anatomy which contributes to her struggling to rest for long periods of time due to sensory input issues. She has struggled sleeping on her back and has had to be held upright after every feed and for the majority of sleeps due to severe reflux, startling and her neck. With sleep being critical to her growth we have bent over backwards to help her be able to sleep enough. We will continue to learn more about what she experiences and feels as she grows older and more verbal.

With an immense amount of work, perseverance, and seeking out helpful therapies, we have begun to see some forward progress with her bottle drinking. Avonlea was never able to successfully nurse due to everything going on with her little body, however Rachel has tirelessly pumped for her. In fact, due to Avonlea's reflux and other symptoms, wheat, dairy, soy and eggs were cut out of mom's diet, so Avonlea's milk did not have these proteins. Throughout Avonlea’s life early on she had colic and still to this day, whenever she cries hard her floppy airway gets agitated, making her swallowing and breathing panicked. We also discovered she was silently aspirating any thin liquids (milk, formula, water, juice, etc.) as well as refluxing both milk and purees (as she became older). We have been able to help stabilize her feeding with cheek and jaw support, thickeners and medication, yet her feeding is still a struggle for her and us. It is a very slow going and exhausting daily task every feed trying to help a baby learn how to feed. Upon the addition of puree’s into her diet, we learned that the battle with her feeding disorder is continuous. The therapists she has have helped us to see her go from taking an hour to drink only 1 or 2 ounces to drinking quantities more like a baby should, however it is not without struggle and challenge still to this day.

Over time with all of the elements of her care involved she has undergone extensive diagnostic tests. These tests have included ultrasounds, hearing tests, vision tests, frenectomies, in office monitored medication trials, CT’s, MRI’s, X-rays, sleep studies, swallow studies, UGI, echocardiogram, EKG, cardiac workups, auditory brain stem response tests, genetic screenings, airway evaluation, EEGs, labs, ER visits, anesthesia and surgery.

Avonlea's medical journey has involved multiple visits per week to various specialists in several locations around Tampa Bay who focus on her various issues. In her short life she has been to 169 total appointments with 29 main providers. Her care teams include her pediatrician, neurologists, craniofacial teams, otolaryngologists (ENT), gastroenterologist (GI), audiologists, opthamalogist, geneticist, chiropractor, occupational therapists and physical therapists, dentists, orthodontist, lactation consultants, cardiologists, oncologists, early interventionist and SLP, feeding specialists. We have a joke that the list of departments at Johns Hopkins All Children’s Hospital (JHACH) that Avonlea HASN’T been to is shorter than the list of those she HAS been to.

Unfortunately, we have also recently learned that Avonlea has a walnut sized soft tissue mass in her left eye orbit against her optic nerve, pushing her eye muscles to the side, woven between the fat and up against her sinuses. We are in process of working with an expert pediatric oncology vascular tumor team at JHACH. Her oncologists have been consulting with other tumor boards to best determine how to move forward with the mass due to the delicate location affecting her eye. Unfortunately due to the difficulty and fragility of the location a biopsy is not possible at this time. She is currently on an in office monitored medication trial with her oncology doctors where the dose will continue to increase to try to reduce the size of the mass.

Procedures, therapies, labs and tests have been a regular part of her life already and we know that there are surgeries that lie ahead as well - one of them was just completed. According to her Craniofacial surgeon, due to Avonlea’s diagnoses, there is a strong potential she will have difficulty learning to talk and form words and will likely need speech therapy. When her teeth come in we will work closely with her craniofacial surgeon/team to monitor her jaw growth and the compression and bite of her teeth/jaw. The first three years of her life will be particularly challenging and we'll have to see how things progress in the years following as she grows.

While we’ve seen her make progress the road has been very intense and seemingly unending and the effects have resonated into every aspect of life as you would imagine. For the majority of her life to this point we have taken two steps forward and one step back with her health. Often, our regular routine has been a grueling multiple days a week commute to appointments that are 45 minutes to an hour away to get her the special pediatric care she has needed. This increased travel has added to the financial strain and physical fatigue, along with wear and tear on our car. We have driven about 30,000 miles back and forth for Avonlea’s appointments in the last 9 months.

As first time parents we have done our best to navigate life caring for a baby who has some very special needs and that is challenging in itself. In addition, managing and tending to Avonlea’s appointments and complexities, we have both had difficulty handling the stress, lack of sleep, intensity of appointments, therapies and feedings. Rachel also works full time as she is the one who carries our health insurance and Derrick had to stop working in order to provide the stability needed to get Avonlea through this time. In the midst of all of Avonlea’s medical care Derrick and Rachel have had some health challenges as well that have added to our costs. In all of this we have incurred quite a bit of debt and have fallen behind on our mortgage. We are in a desperate place where we need others to link arms with us in more tangible ways, especially financially. We are hoping this Go Fund Me will help to alleviate the heavy burden that we are facing financially and in turn enable us to breath a little bit lighter as we continue the difficult but worthwhile process of ensuring our little girl’s health continues to improve day by day.

Your generous donations will go towards:

Thank you! Avonlea is 10 months now and loves to smile & giggle, swing, smell mommy's roses, explore and play with Fleury (her doggie)

With heartfelt gratitude,

Derrick, Rachel & Avonlea