Our involvement with your child extends far beyond cardiac care. We also want to make sure your child is growing and developing well overall. Our complex care physicians and therapists work together to make sure your child achieves the same developmental milestones as their peers.

Your child's care team includes:

• Cardiologists
• Dietitians and nutritionists
• Primary care physicians
• Occupational therapists
• Physical therapists 
• Speech-language pathologists
• Palliative care specialists
• Social workers
• Pharmacists

For parents, the thought of leaving the hospital and caring for their infant at home can be scary.  At AU Health, we are your support team and are here for you and your baby every step of the way!

Before you go home

While at the hospital, we will thoroughly educate you and your family on what you need to know to confidently and safely care for your child at home.

We'll explain:

• Your baby’s diagnosis: We go over your child's heart condition and talk about what you can expect. Find out more about single ventricle physiology. 
• How to monitor your infant: We show you how to take and input your child’s vitals every day. Recording their weight, heart rate, and pulse oximetry daily is important because, back at the hospital, we monitor this data and look for trends that let us know how your child is doing.
• What to feed your baby: We'll work with you to determine how much and how often to feed your child to ensure adequate weight gain, which is key to successful outcomes.
• Early signs of distress: You will learn how to tell if something is wrong, when you need to call us, and when to come in. We encourage telehealth video calls for those times when you are not sure but want to connect with us for our input.
• When to come in: If you are concerned, call us immediately, we can pre-alert the pediatric emergency department (ED) and ICU before you get here so that there is no wait, allowing us to treat your baby faster.

Home monitoring equipment

In order to successfully keep track of your baby's progress at home, you will need special equipment to help you. We provide the following, and make sure you know how to use each, before you go home. You will receive:

• A digital scale: To weigh your baby. Gaining weight is a big factor in health and survival during the interstage period.
• A pulse oximeter (pulse-ox): Will check your child's blood oxygen level. This is important to make sure their oxygen level doesn't drop too low.
• An oxygen tank: For emergencies such as difficulty breathing or low blood oxygen levels.
• A tablet: Each day you will input your child’s weight, heart rate, and pulse-ox readings into a personalized tablet that compiles data about your child's well being.  We will be able to monitor how your child is progressing and make adjustments and recommendations based on the information you enter.
• Their heart "passport": AU Health provides a personalized booklet for you to bring with you whenever your child sees a health care provider. It gives an overview of your child's condition, describes what care they are receiving, and includes important contact numbers.

What if I am unable to care for my child?

We understand there are circumstances that can make caring for a sick child hard on a family - you might be sick yourself, have a disability, or there might be other circumstances that make caring for a child with a heart condition difficult. If this is the case, we will make arrangements for outside help to come in to assist if you are unable to manage home-care for your child.

Your child be seen by their cardiologist every 2 weeks (or more often as needed). In addition, we will call you regularly to check-in to see how your baby is doing and how you are coping. In between, we encourage you to connect with us through:

• Phone calls: Parents can call us any time. You can ask us about medications, reactions, or anything that is of concern regarding your baby’s health.
• Telehealth visits: To prevent unnecessary emergency visits to the hospital we offer telehealth calls. Calling us for a "live visit" gives us the opportunity to assess your baby and advise you on whether you need to come in or not. Telehealth is a great tool because our non-local patients are able to get in touch without having to always make the long drive to CHOG.
•  Complex Care Clinic visits: Our high-risk clinic customizes your child's visit depending on their needs. We make every effort to organize appointments with complex care physicians, nutritionists, pharmacists, and speech/physical/occupational therapists to see your child on the same day.