Babies who have undergone single ventricle procedures are fragile when they leave the hospital and their family members become their main caregivers. To help these babies’ recoveries go as well as possible, we’ve developed the Home Monitoring Program (HMP) to support families during the time in between surgeries. Research shows that close follow-up and daily monitoring of a baby’s saturations, weights and intake has improved survival rates between heart surgeries.
Discharge & Preparing for At-home Care
Our team will discuss the HMP with you in detail before your baby goes home. We will work closely prior to discharge to update and coordinate the care plan with your pediatrician, your cardiology team at Lurie Children’s or the doctor who referred you, and other specialists involved in your child’s care.
You will learn the key components of your baby’s care as you prepare to be discharged and take your child home. It will take some time to adjust from being in the hospital for many weeks. Please take your time, be patient with yourselves and find ways to celebrate your newest family member being home with you.
The care team will also work with you on completing a Roadmap to Home. This document will give you detailed information about each aspect of your child’s care, including general information, medication, feeding and follow-up care. The Roadmap to Home also helps ensure that you and your care team have the same understandings about your child’s care plan. See the Roadmap to Home template.
Tools for Caring for Your Baby
When your baby is discharged, you will be given:
Detailed guidelines and goals for their growth and oxygen saturation levels. See an example.
A pulse oximeter (a painless sensor device that measures oxygen levels in the blood), and baby digital scale and a notebook to record your baby’s daily information. See an example of the daily log sheet.
A one-page healthcare dashboard so that you can quickly and accurately share important medical information with any healthcare team your baby may need. See an example.
Ongoing Follow-up Care with Lurie Children's
Your baby will have visits with their care team in the Cardiology High Acuity Transition (HeArT) Clinic. The clinic is run by a dedicated team of pediatric nurse practitioners and attending cardiologists that communicate the care plan with you and your pediatrician.
A nurse practitioner will review your baby’s health with you each week, either on the phone or over e-mail.
The team includes a psychologist, an occupational therapist, a physical therapist, a social worker, a nutritionist, an education specialist, and neonatologist or cardiologist. These specialists work together to support your child’s development from infancy through the preschool years, helping them reach their full potential. See our neurodevelopmental action plan for the first year of life.
Please call to schedule an appointment in our neurodevelopmental clinic for your baby to be evaluated by 4-12 months of age. The phone number is 312.227.5289.