1. Jamal and Jackie’s Journey Brittney Fitts, Katherine Miller, Kevin Salvas

2. Present Level of Performance: Jamal Jamal is 3 months old and was born prematurely at 26 weeks, putting his adjusted age at 1 week old. He currently resides in the NICU, although his condition is stable, and plans for his discharge have begun. Jamal is strong enough to receive nutrition by oral feedings, however has demonstrated signs of GER. Therefore, he still receives the bulk of his nutrition through a nasojejunal tube. Previously, Jamal experienced apnea associated with bradycardia. Due to this, after being discharged, he will continue to be monitored by an apnea monitor, as well as receive caffeine treatments. At this point in time he is receiving an oxygen and air mixture through nasal prongs, and he will need to continue receiving oxygen at home. Shortly after being born, Jamal experienced a Grade III intraventricular hemorrhage. At 6 weeks old a retinal exam showed the presence of retinopathy of prematurity. An auditory brainstem response (ABR) test given at 11 weeks old did not show any concerns for Jamal’s hearing at that point in time. Jamal will need a caretaker present around the clock that is trained to administer oxygen therapy, use the apnea monitor, and administer CPR. Also his caretaker will need to support his nutritional needs through both oral feedings and through a nasojejunal tube.

3. Present Level of Performance: Jackie Jamal’s mother, Jackie, is a 20 year old single mother who lives approximately 30 minutes from the hospital. She works full time as an office assistant. She has the support of her sister and parents, however her parents live a distance away and her sister has children of her own to support and care for. Jackie is a dedicated, if young and inexperienced, mother that visits Jamal at the NICU most evenings after work. She has concerns regarding her ability to provide the care and therapies Jamal will need, as well as work to financially support both of them. She is thrilled to report that Jamal seems to be looking at her steadily on a regular basis now when she holds him during her evening visits.

4. State the Problem Mom is a young (20 year old), single mother Mom is overwhelmed, and doesn’t know how to care for Jamal She is mentally, emotionally and educationally unprepared to care for a baby who is premature right away Potential financial hardship and lack of resources Lacking support system to help with caring for Jamal Uneducated about risk factors involved with a baby who is born premature

5. Accommodations Counseling/Parent Education FAP Team Nursing Services Service Coordinator Social Work Services Nutrition Services Assistive Technology (feeding equipment)

6. Potential Strategies

7. Family and Medical Leave Act o Unpaid job-protected leave Employee Assistance Programs o Temporary counseling, Government Nutrition Assistance o SNAP o WIC Legislation

8. Pros Cons More time to adjust More time to become comfortable caring for Jamal Temporary May not qualify for certain services

9. Department of Behavioral Health Respite care paid for by the state o Would compensate Jackie’s sister if she was able to care for Jamal

10. Pros Cons Jackie is not financially responsible for childcare Keeps family involved in Jamal’s development Jackie’s sister may not be able to care for Jamal Jackie’s sister would also need to be trained to provide medical care for Jamal

11. Community Child care/Nurse Jamal attends a community child care center with a personal nurse while Jackie is at work

12. Pros Cons Jackie is able to go back to work Jamal’s medical needs are met Child care is expensive Potentially difficult to find a facility that will meet Jamal’s needs

13. Who is Involved? Parent Doctor Nurse Social Worker New Mother Support Group Early Interventionists Daycare Staff Nutritionist Counselor for Mom Family/Friends In-Home Caretaker/Provider

14. Resources March of Dimes- Virginia Chapter Address: 4191 Innslake Drive, Suite 201, Glen Allen, VA, 23060 Phone: (804) 968-4120 Graham’s Foundation- Online Support Group for mothers who have babies born prematurely NICU/Children’s Hospital of Richmond at VCU- (804) 828-9000 Chesterfield Community Services Board (CSB) Infant Program Address: 6801 Lucy Corr Boulevard, Chesterfield, VA 23832 Phone: (804) 748-1227 Infant and Toddler Connection of Chesterfield - Central Point of Entry for early intervention services in Chesterfield County, VA Address: 101 Buford Rd., Ste. 110, Richmond, VA 23235 Phone: (804) 768-7205

15. Least Restrictive Environment Jamal services will be rendered his natural environment at home as much as possible. Jamal may also receive services in a daycare setting (if possible) or caretaker and will not be excluded from other children or activities due to being born premature (as medical concerns provide).