By Kelsie G., Lee County
Chloe Grace Gregware is our two-year-old daughter who was adopted through the Department of Children and Families (DCF) in February 2021. She has an older sister, Mia, who was also adopted through DCF, two years prior. Before Chloe, we had experienced a few drug-exposed foster children, with Mia being our longest experience. Mia was born addicted to opioids and spent 3 months in the Neonatal Intensive Care Unit (NICU) detoxing prior to us fostering her and then adopting her. Mia has her medical issues. As a baby she was distant and rigid. She had speech delays and was very low in her growth percentiles. At 4, Mia was diagnosed with Attention-Deficit/Hyperactivity Disorder (ADHD) and Oppositional Defiant Disorder (ODD). But with all we had experienced prior, nothing had prepared us for our experiences with Chloe.
Chloe was released into our care on January 30th, 2019, after her 15-day NICU stay at Golisano Children’s Hospital in Fort Myers, Florida. Chloe was born at home with her bio-father cutting her umbilical cord with scissors and tying it with a shoe string. She was approximately 6 weeks premature as her bio-mother had limited prenatal care. Chloe was born weighing 4 lbs. 4 oz., and presented with minor feeding issues. She was nasojejunal (NJ) tubed, which means a feeding tube was placed from her nose to her stomach, for the first few days after her birth. She had polycythemia but, other than that, she presented no health issues at that time. Chloe was born intrauterine exposed to drugs. At birth, she tested positive for Crystal Meth, Cocaine, Amphetamine, Methamphetamine, Cocaine Metabolites and Ethanol. It was later discovered, through her bio-mother’s own testimony, that during Chloe’s entire time in utero, she was additionally subjected to significant alcohol abuse. Her bio-mother drank 6-12 beers per day throughout the entire pregnancy.
Upon Chloe’s release into our care, we immediately noticed that things were not right. This was not our first foster “drug-baby,” and we could see that Chloe was clearly struggling. Chloe was unable to successfully feed during ANY feeding, slept all day and all night, never roused for feedings, projectile vomited after every attempt at feeding, had severe diarrhea, distended stomach and generally speaking, she was nonreactive to her environment. We knew the best place to start to get Chloe the help she needed was by having open conversations with her doctors and utilizing their knowledge to get to the root causes. From February 2019 through December 2019, after over 200 doctor appointments in under one year, three hospitalizations (one of which was a 30-day stay) and one surgery, here is the list of Chloe’s diagnoses.
-Gastrostomy Tube Dependent (AKA: Chloe is fed through a G-tube surgically placed in her stomach)
-AUTS2 Genetic Related Disorder
-Gastroesophageal reflux disease (GERD)
-Failure to Thrive
-Intrauterine Exposure to Drugs
-Perioral Foramen Ovale
-Pericardial Foramen Ovale
-Patent Foramen Ovale (PFO)
-Maternal History of Factory V Deficiency
-FASD- Fetal Alcohol Spectrum Disorders
(specifically: Sentinel Physical Findings/ Neurobehavioral Disorder (4324))
Given the listed diagnoses, Chloe takes over 10 prescription medications to either assist, prevent or overcome issues caused by these diagnoses. She sees 13 Pediatric Specialists to treat these diagnoses. Doctors’ offices and medication routines have become a second home for this two-year-old.
In June of 2019, Chloe was hospitalized due to severe malnutrition, respiratory syncytial virus (RSV) and dehydration. During her 30-day hospitalization, it was determined, after MANY meetings with doctors and staff, due to disagreements on which treatments would be best for her, that Chloe needed to have a gastronomy tube surgically placed to allow for proper nutrition, hydration and delivery of medications. During the time of Chloe’s 30-day hospitalization, I never left her side. My husband continued working full-time throughout this crisis because he had already used all of his sick time to care for Chloe during previous incidents when she was sick or had severe bouts of projectile vomiting, or to offer me relief from sleepless days and nights. During Chloe’s hospitalization, Justin visited daily to maintain the bond that he had developed with Chloe over the previous 4 months. In addition, he managed the caregiving that we had to arrange with family/friends for our older daughter Mia to ensure that her needs were also being met. Justin brought me many meals to keep me healthy, and occasionally relieved me so I could leave the hospital for a few hours, all the while juggling his full schedule as a retail manager.
With Chloe’s gastronomy procedure, medical equipment was needed to assist in her care. The following is a list of the medical equipment Chloe requires.
-Infinity Feeding Pump
-Right Angle Feeding Set with Dual ENFit Y-Port
-AMT Balloon G-Tube with Medication Port
-MIC-KEY Low Profile Gastrostomy Feeding Tube Kits
-Hand-Held Infant Mask with Mouthpiece
-Infinity Mini Backpack to carry the pump
-Gravity Feeding Bag
-Universal Securement Device
-Feeding Kit with Flat Top Syringe
-MANY Syringes! Of All shapes and sizes!
-Z-Vibe for oral aversion treatment
-ARK’s Spoon Tip for the Z-Vibe Feeding Therapy
-Flat Textured Spoons
-Sensory Toothbrush because, yes even that can not be a typical experience in our house.
It was at this time that a transfer of care for Chloe was being considered by DCF, since Chloe’s gastronomy tube qualified her to become a medical foster child. We were already very attached and loved Chloe too much to trust her care to anyone but ourselves. So we fought to maintain her care, requesting letters of recommendation from doctors, nurses and facilities that outlined our ability to successfully manage and administer the increased level of care Chloe now required. Thankfully, all the specialists agreed that we were doing an exceptional job, and DCF allowed us to continue with Chloe’s care.
In the beginning, Justin and I took turns rotating Chloe’s night care, but quickly found that it took both of us to change out the bedding after Chloe would projectile vomit, while simultaneously soothing her and taking care to assure that her G-tubing did not accidentally get ripped out. Chloe would vomit 3 to 4 times a night, had medicines that needed to be administered, formula that
had to be added to her overnight feed to ensure that it did not spoil, and Chloe would wake up in-between all of this crying out in pain due to her GERD. Justin and I supported Chloe in tandem in order to be successful with her care. In the mornings, Justin would leave to go to work and I would go to Chloe’s doctor appointments, pharmacies or the grocery store and, if I was lucky, Guest Teach at a Lee County School. By December 11th, 2019, we were both absolutely exhausted. I was melting down in tears for ridiculous reasons and on December 11th at 2am, while cleaning up after yet another projectile vomit by Chloe, Justin had a seizure, necessitating a call to 911 for an ambulance to go to the ER. After many medical tests, it was determined that Justin’s seizure was stress-induced due to simply over-exhaustion. We realized that in order to maintain our own health, we had to find more resources to assist us with Chloe’s care. We reached out to Chloe’s doctors, PPEC (Prescribed Pediatric Extended Care) medical daycare, and nursing friends. They all recommended that we apply for a night nurse through Medicaid. This was the FIRST that we had heard of this! Not one nurse or doctor prior had even mentioned this as an option or possible future need! With our mouths hanging open, we immediately applied and were approved in January, 2020 for a night nurse 7 days a week from the hours of 10:30pm-6:30am. To give you an idea of the level of care Chloe requires, I’ll just go down her typical day. Please note that this does not include one-off daily situations such as clothing changes due to diarrhea, cleaning up projectile vomit due to GERD, basic baby care and her weekly doctor appointments.
8 AM - KATE FARMS (tube-feeding formula) combined (4.5 oz.) - Cup Feed what baby will tolerate (usually 1 oz.) Bolus/Gravity Feed remaining ounces (usually 3.5 oz.).
9 AM - Breakfast FEEDING THERAPY - Present Chloe with 3 types of textured foods (solid, puree with DUOCAL, and crunchy) with a refusal bowl. Allow 30 min. of feeding time. Offer positive praise on all successful placement of food in mouth. Do not only praise for eating, tasting counts.
9 AM - Administer LEVOTHYROXINE 25 MCG (0.025 MG) ORAL TABLET through G-tube.
11 AM - KATE FARMS mixed (4.5 oz.) - Cup Feed what baby will tolerate (usually 1 oz.) Bolus/Gravity Feed remaining ounces (usually 3.5 oz.).
11 AM - Administer MONTELUKAST 4 MG ORAL GRANULE through G-tube.
12 PM - Administer FAMOTIDINE and Erythromycin 40 MG/5 ML ORAL LIQUID though G-tube.
12 PM - Administer CYPROHEPTADINE 2 MG/5 ML ORAL SYRUP through G-tube.
12:30 PM - Lunch FEEDING THERAPY - Present Chloe with 3 types of textured foods (solid, puree with DUOCAL, and crunchy) with a refusal bowl. Allow 30 min. of feeding time. Offer positive praise on all successful placement of food in mouth. Do not only praise for eating, tasting counts.
2 PM - ALIMENTUM, DUOCAL & KATE FARMS mixed (4.5 oz.) - Cup Feed what baby will tolerate (usually 1 oz.) Bolus/Gravity Feed remaining ounces (usually 3.5 oz.).
4 PM - Perform PHYSICAL/OCCUPATIONAL THERAPY EXERCISES for maintenance. Currently: Physical Therapy: Playtime with Chloe on one knee, attempt actions to do backwards steps to strengthen balance and coordination of right leg. Occupational Therapy: Focus on pincher movement, have Chloe move small toys to container. Use Cheerios to make even smaller pinching movements. Continue to work with scooping motion and texture stimulation.
4:30PM - Dinner FEEDING THERAPY - Present Chloe with three types of textured foods (solid, puree with DUOCAL, and crunchy) with a refusal bowl. Allow 30 min. of feeding time. Offer positive praise on all successful placement of food in mouth. Do not only praise for eating, tasting counts.
5 PM - KATE FARMS mixed (4.5 oz.) - Cup Feed what baby will tolerate (usually 1 oz.) Bolus/Gravity Feed remaining ounces (usually 3.5 oz.).
6 PM - Administer NEXIUM 5MG ORAL POWDER FOR RECONSTITUTION, DELAYED RELEASE through G-tube.
8 PM - KATE FARMS mixed (4.5 oz.) - Cup Feed what baby will tolerate (usually 1 oz.) Bolus/Gravity Feed remaining ounces (usually 3.5 oz.).
8 PM - Administer OTC MULTIVITAMIN WITH IRON with KATE FARMS & ALIMENTUM mixture through G-Tube.
8 PM - Administer- OTC PROBIOTIC FOR BABIES with 5 ML of H2O through G-tube.
9 PM -Administer CYPROHEPTADINE 2 MG/5 ML ORAL SYRUP through G-tube.
9 PM -Administer OTC MYLANTA through G-tube.
9:30 PM -KATE FARMS- give 165 ml @ 30-34 ml/hr. via feeding pump.
9:30PM - Administer SIMETHI
CONE 40 MG/ 0.6 ML ORAL LIQUID in ALIMENTUM feeding bag through G-tube.
12 AM - Administer FAMOTIDINE 40 MG/5 ML ORAL LIQUID though G-tube.
1 AM - KATE FARMS- fill current feeding bag with 150 ml @ 30-34 ml/hr. via feeding pump.
5:30 AM - OVERNIGHT FEED COMPLETE. Unhook Chloe from Feeding Pump; flush her G-tube button with 5 ML H2O. Throw away used feeding bag.
6 AM - Administer NEXIUM 5MG ORAL POWDER FOR RECONSTITUTION, DELAYED RELEASE through G-tube.
6 AM -Administer ALBUTEROL 0.63 MG/3 ML (0.021%) INHALATION through Nebulizer.
Currently Chloe attends a medical daycare, PPEC (Prescribed Pediatric Extended Care), 5 days a week so that Justin can maintain his full-time job. He uses many of his vacation days and all of his sick time for medical care for Chloe when she cannot attend PPEC. I have stepped down from my full-time job as a secretary to being a part-time, “when available” guest teacher in order to care for and transport Chloe to her numerous weekly doctor appointments. This additionally allows me to get the home cleaned, medicines prepped, feedings prepared for both Mia and Chloe and to drop off and pick up Mia from school. Chloe attends a medical rather than regular daycare due to her extensive level of care including feedings, gastrostomy tube care, prescription administration and medical monitoring.
At night, a nurse from Home Health monitors and cares for Chloe due to her gastrostomy tube care, aspiration due to vomiting and prescription administration. Chloe has a night nurse 7 days a week from the hours of 10:30pm-6:30am. The duties include: Adding formula to overnight feeds, administration of medication every 4 hours, monitoring feeding pump for failures/notices, and monitoring Chloe to ensure tube does not strangulate, among other duties.
Due to Chloe’s genetic makeup and diagnoses, her future and lifespan are unknown. She could require her gastronomy tube (feeding tube) for her entire life or could possibly wean off of it with the assistance of Intensive Feeding Therapy, which is NOT covered by Medicaid. She could have autism, potential cognitive and emotional disorders and/or severe learning disabilities due to her genetic abnormality of the AUTS2 related disorder and/or her exposure to drugs and alcohol. She could have heart issues from her PFO. Her list of uncertainties is extremely long. By several doctors’ personal statements made directly to me, it is a miracle that Chloe is alive today, as they felt certain she was not going to survive at the very beginning. Her specialists believe that Chloe is becoming stronger day by day due to the dedication, care and advocacy we have steadfastly provided her to ensure that nothing was missed, overlooked or neglected. What we know for sure is that the road ahead of Chloe will continue to include many doctor appointments and extensive care.
Due to the extensive amount of care Chloe will continue to need, as well as doctor appointments, treatments and lab work, I will not be able to expand my part-time employment availability to anything more than “when available” because the priority of care for Chloe outweighs my ability to work full-time outside the home. Chloe’s and Mia’s care is our top priority. On average, Chloe is currently
going to 4 appointments per week which takes up to 10 hours a week including transportation, face-time with the specialists and scheduling of follow-up appointments. Some of those appointments, i.e., her geneticist, is located at roughly a 4-hour drive one way to Miami and can require an overnight stay to ensure appointment times are met. This requires us to arrange care, transportation and general babysitting for our 6-year old daughter Mia. My time is not only consumed in transporting Chloe to doctor appointments but also in a managerial context. After appointments, I communicate any updates with all doctors/caregivers to ensure everyone is on the same page; I manage medications, order and ensure delivery of all medical supplies, and follow up on all lab work performed. Justin and I learn and review new therapies taught, then conduct those therapies (feeding, speech, occupational and physical) with Chloe every evening to help facilitate her continued development. I take a weekly inventory of all medications, medical supplies and nutritional needs (formula, blended foods, pureed foods and whole foods). Due to Chloe’s chronic projectile vomiting, hygiene care is continuous, bedding is changed nightly, clothing is washed daily, bathing is sometimes done multiple times daily (to prevent skin burns from vomit), care of her gastronomy site is daily and so on. Chloe’s daily care is 24/7 and requires multiple people to help facilitate that it is done properly.
Even the simplicity of hiring a babysitter for a date night, to take Mia on an outing/field trip or an adult night with friends is significantly more complicated. Chloe cannot be cared for by just anyone. She has to have trained babysitters brought in from home health agencies to ensure her care. Friends and family become overwhelmed with the idea of caring for her, as there is so much they must do, no matter how short of a time we would need them to babysit.
Chloe is G-tube fed; this requires special blended foods (KATE FARMS), calorie supplementation (DUOCAL), and calorie rich formula (ALIMENTUM 26 CAL), in addition to pureed foods, snacks and regular foods.
In late 2020, we reached out to The Florida Center for Early Childhood. We were seeing that as she was getting bigger and stronger, that her outbursts, temper tantrums and hyperactivity were more than a typical two-year-old. She was violent, hitting, kicking, biting, and screaming. She would push her nails into you to get you to wail. Being violent to not just the parents and grandparents but to our 6-year-old daughter and our pets. Thinking of the future, as she would become stronger and with future school experiences, we sought help. We spoke to doctors, who simply felt it was her drug and alcohol background, but had nothing to offer us. They felt that “by 5 she may get a better diagnosis, like ADHD or Autistic, to help her.” That was NOT ok for us! We believe in early intervention to allow our children the best chance for their future socialization, their future in schooling and overall general experiences. So, I did what medical momma’s do. I went to Google! I found an article from the National Organization on Fetal Alcohol Syndrome (NOFAS) and it was describing OUR daughter to a T. I took the article to our pediatrician who agreed that it sounded like everything we were going through BUT, Chloe, in her mind, did not have the facial features required for a FASD diagnosis. I did more digging and finally reached out to The Florida Center for Early Childhood on my own, with our pediatrician’s support. After almost an 8 month wait, Chloe was quickly diagnosed by them with FASD. They recommended ABA (Applied Behavior Analysis) therapy, which only children with Autism can get through Medicaid, despite the diagnosis having many overlaps and often being confused with the other. They recommended Speech Therapy, an Occupational Therapy Evaluation and to come back at age 3 for neuropsychological testing.
With these experiences here are our frustrations we have experienced through Medicaid:
-There is NO place for parents to have resources or links to assist in knowing what treatments are available to you. You find out through Facebook Groups, mothers you meet while waiting at doctors offices or Google. Why in this day and time is there not a website available for ease of discovery? -Therapies (such as ABA therapy) that can assist in providing a more “neuro-typical beginning,” if used as an early intervention are only allowed for the 1 diagnosis of Autism and NOT the ones that have become an epidemic to our state and nation… this being FASD and NAS (neonatal abstinence syndrome).
-Doctors are not educated on FASD or NAS and it is everywhere —With a ten-fold increase in just Florida alone and a five-fold increase in the nation.
-Early treatment! Doctors do not keep up with studies on these epidemics, nor does the state. Choline studies have shown with early use, before 5 years old, there can be healing of the damaged brain. How much money ($) in treatments later on could this save? BUT in order to make this happen, early diagnosis has to happen first and for the state of Florida that is not the proactive stance they are taking.
We deeply love Chloe and have become very attached to her. She is our daughter in our heart and soul and Mia adores her little sister. We know how much management, sacrifice, time, energy, dedication, exhaustion, sleep deprivation and love it has taken just to get her through her two years of life. We knowingly accept that this level of support will continue to be our future with her. We love her enough to do this, to love this child deeply, unconditionally and without regret. By owning what the future for Chloe will look like, we have also come to understand the incredible difference changes in the medical world could have for not only her but so many other warrior children just like her! FASD & Intrauterine Drug Exposure is an epidemic. It needs as much focus and attention as autism or ADHD if we ever want to stop the cycle.