Preparing your child for surgery and waiting between procedures can be a stressful time for your family. And if your child’s health is critical, you may feel a little uncertain. Our Interstage Monitoring Program (ISMP) helps ease some of those worries. This program is designed for parents of children with single ventricle heart defects, such as hypoplastic left heart syndrome, or babies who are dependent on a shunt for any reason. These types of heart conditions usually require a series of three surgeries to redirect blood flow.
ISMP monitors your child’s health between their first and second surgery.
The first surgery is typically the Norwood procedure, but may be different depending on your child’s specific heart anatomy. It takes place during the first weeks of your newborn’s life. After the procedure, your baby is closely monitored in the intensive care unit until they are discharged.
Our program allows parents to communicate with their baby’s care team while the baby is at home between surgeries.
ISMP has many benefits, including:
- Daily monitoring of feeding, weight, heart rate, and oxygen saturation
- Close contact with your child’s care team via email and MyWVUChart
- Ongoing support and encouragement
LLooking at data in real time gives your baby’s care team important information. The team uses this data to make decisions that help keep your child healthy and:
- Improves care for your baby
- Decreases your healthcare expenses
- Speeds up care for your child when needed
- Reduces trips to the emergency room
- Lowers your child’s risk of ICU admission
- Shortens the time of your clinic visits
WVU Medicine Children’s Heart Institute is proud to be one of the first in the nation to offer this innovative program – free of charge – to our patients and their families, thanks to the Claire Gianni Foundation.
How ISMP Works
The time between the first and the second surgery is known as the interstage period. The baby’s health can change quickly during this time. Swift changes in treatment or even hospitalization may become necessary. ISMP communicates the baby’s health information with the care team.
As a parent, you play an important role in monitoring your baby at home. Our ISMP helps make that a little easier. We will teach you how to record your baby’s information on a MyWVUChart flowsheet, allowing your child’s medical team to have immediate access to information about your baby’s health status and any changes.
Your baby’s nursing team reviews the data every day and meets weekly to discuss your child’s progress. Our ISMP team will email or call you at least once a week. If a problem is detected, we will contact you to discuss the plan. Our providers are on call 24 hours a day, seven days a week.
What to Expect
Before your child is discharged from the hospital after their first procedure, our team will provide you with instructions for data entry and provide equipment, including:
- Feeding equipment (if applicable)
- Oxygen saturation monitor
We will show you how to use this equipment to get important information about your child, and we will instruct you in how to:
- Weigh your baby
- Check their heart rate and oxygen saturation
- Document how much they eat
- Document wet and dirty diaper counts
We will answer any questions you have about your child’s heart defect. We will show you how to identify and respond to possible issues or “red flags” (listed below).
Follow-Up and Other Care
After your child’s first surgery and before their second surgery, they will need frequent medical care and evaluation. We work closely with many doctors, including your child’s pediatrician and cardiologist, to make sure your child receives the best possible care.
We require caregivers to have CPR training before their child is discharged from the hospital after their first surgery.
Contact your nurse coordinator if any of the following occurs:
- Low oxygen saturations (less than 70 percent)
- Baby is working hard to breathe
- Weight issues
- Does not gain an average of 20 grams/day over seven days
- Three days in a row of weight loss
- Feeding issues
- Baby stops breathing during feeds
- Feeding difficulty
- Increased sweating during feeds
- Vomiting or diarrhea (more than three episodes in 24 hours)
- Excessive spitting up
- Bloody stools
- Fewer than four wet diapers per day
- Irritability or other behavior changes that worry you
- Temperature over 101 degrees Fahrenheit
Please do not hesitate to contact your ISMP care team with any questions or concerns.