Services
Journey of a Lifetime (JOL) offers compassionate emotional, spiritual, educational, tangible support and advocacy from diagnosis, through pregnancy, at birth, during a NICU stay, and up to one year postpartum.
Services include, but are not limited to:
- Prenatal Diagnosis Education
- Individualized Birth Plan Development
- Prognosis Education
- NICU Education
- Individualized NICU Care Plan Development
- NICU Support
- Discharge Support
- Transition Support
- Bereavement Support
Perinatal Palliative Care
Most simply, Perinatal Palliative Care is concurrent care.
It is a coordinated care strategy that comprises options for prenatal and newborn care that include a focus on maximizing quality of life (e.g. symptom and pain management and amelioration of suffering as well as life-prolonging treatment and other medical care) for babies with a variety of conditions considered to be life-limiting or adverse during pregnancy and in early infancy – no matter the diagnosis – in lieu of a potentially shorter life span, while treating the baby as you would any other baby.
Perinatal Palliative Care aims to improve the quality of life for both the baby and the family by addressing their emotional, spiritual, and physical needs throughout the pregnancy, birth, and postpartum period.
This specialized care respects the life and dignity of the unborn baby by honoring the parents’ wishes and supports the process of pregnancy continuation, the importance of embracing the time these parents will have with their baby and making memories. With a multi-focused approach – honoring the parents’ values, beliefs, culture, and faith, as well as symptom and pain management, and amelioration of suffering – perinatal palliative care can be provided concurrently with life-prolonging treatment and other medical care.
It encourages shared decision making through communication in an environment that encourages parents to process their emotions and discuss their values.
Perinatal Palliative Care also holds sacred the process of dying and the transition into life after loss with the least amount of trauma possible.
The desire of Journey of a Lifetime (JOL) is to foster hope, build trust, validate the parent’s concerns, facilitate communication with empathy and to maintain the parent’s voice. JOL’s goal is to provide education, psychosocial assessment and support, and assist with care coordination.
Trauma Informed Care (TIC)
Following the unique model of care developed by Be Not Afraid, Journey of a Lifetime (JOL) provides Trauma Informed Care (TIC). Trauma is defined as “an injury to living tissue caused by an extrinsic agent and/or a disordered psychic or behavioral state resulting from severe mental or emotional stress or physical injury.” (Merriam Webster Dictionary)
Prenatal diagnosis of a congenital anomaly can have significant emotional and psychological consequences for parents of affected babies, with many experiencing shock, sadness, anger, fear, guilt, and grief. After diagnosis, a significant proportion of parents report levels of anxiety and depression warranting clinical intervention.
At its heart TIC seeks to provide safety and connection. With that, the body can literally move out of the physiological state of fear and panic. Our desire is that parents (re)gain agency!
NICU Support
The NICU (Neonatal Intensive Care Unit) provides complex medical care and treatment to newborns (neonates) and babies with anomalies or other physiological needs.
With varying levels of acuity ranging from a Newborn Nursery to a high acuity Level 4 NICU, there is a NICU to meet the needs of every baby.
At JOL, our Manager of Palliative Care Case Management Coordination has 20 years of nursing experience in a Level 4 NICU, caring for the most complex and critically ill babies and their families. Using her clinical knowledge and experience, she is ready to support JOL families who may find their baby and family on a NICU journey.
Whether it be arranging a NICU tour prior to birth, educating, and preparing the JOL family for their time in the NICU, and/or walking alongside the JOL family in the NICU with real time education and advocacy, JOL is a partner and support during your journey.
13 For you formed my inward parts;
you knitted me together in my mother’s womb.
14 I praise you, for I am fearfully and wonderfully made.
Wonderful are your works;
my soul knows it very well.
15 My frame was not hidden from you,
when I was being made in secret,
intricately woven in the depths of the earth.
16 Your eyes saw my unformed substance;
in your book were written, every one of them,
the days that were formed for me,
when as yet there was none of them.
Psalm 139:13-16 ESV
