As you watch your child’s remarkable recovery after surgery, you are excited for the day when you can take them home.

Most parents look forward to the simple, everyday experiences in the comfort of a familiar place. If you’re bringing home a new baby, you want to feed them and hold them close. If your child is older, you want to see them in their own bed, feeling safe and secure.

At the same time parents are looking forward to a return to “normal,” it’s common to worry about your child’s safety when you leave the hospital and to feel overwhelmed by your caregiving responsibilities. Even at home you can continue to get help and advice from your care team so that you can give your child the best care possible.

Once you are on your own, you may feel like you can’t remember how to do everything or can’t handle it all. Life can feel very messy at this point. Remember that you are just beginning the process of learning to care for your child. Be patient with yourself and give it time.

You will soon become an expert in all the skills you need and know who to call when there’s a problem. Get started at home by prioritizing what’s most important and creating a routine. Always reach out to your care team when you need medical advice, or to others in your support network when you need to talk.

Tips for Going Home From the Hospital

  • Be the rock

    One of the most important things you can do is give your child patient, consistent love and attention. The research shows that children recover well both physically and emotionally with a lot of love and support. If there are days when you’re struggling on the inside, you may need to dig deep within yourself to find a sense of peace and calm that you can show your child on the outside.

  • Build confidence to care for your child

    In the hospital you practiced key skills with the care team, but it may take awhile before you feel confident caring for your child at home. It’s common for parents to find the daily tasks – like wound care, feeding, bathing, and giving medications – complicated and challenging at first. You may need some help in the beginning but, over time, you will be an expert at these skills.

  • Gradually get back on a schedule

    When you are trying to get organized at home, start with something easy – like what days you will do laundry – and then work up to creating a schedule for giving medicines. Set alarms on your phone to help you keep track of medication time. Be flexible about the schedule and make changes when needed. Even the smallest step toward setting up a routine will make you feel more in control of the situation.

  • Focus on sleep

    The hospital can be a difficult place to sleep well, and after you leave your child’s sleep-wake cycles can be disturbed for awhile. An older child may spend extra time sleeping when they first get home, but an infant’s sleep may be very disrupted. There are some strategies that can make this part of recovery a little smoother. Establish a sleep schedule and try to stick with it. Be sure that your child gets natural light during the day, and start a calm bedtime routine in the evening. A white noise machine may help your child sleep.

  • Pay attention to your child’s emotions

    As your child’s body recovers after surgery, their mind is also recovering from the stress of being in the hospital. Many infants and children do not seem very troubled during their hospitalization and recovery. But some children and infants cling to their parents, are easily upset, or show other signs that they are struggling. Watch for changes in your child’s personality, or other signs that they may have experienced the surgery as a psychological trauma. Talk to your care team to make sure these aren’t a medical problem.

  • Lean on your support system

    It can be really helpful to connect with other CHD parents who understand what you are going through. Their advice and reassurance may feel the most reliable to you. While many parents find support from family and friends, others struggle to talk about their CHD care journey with people who have not experienced the same things. The most important thing is to make sure you talk with someone when you need to, and don’t isolate yourself from others.

Transitioning to Life at Home After the Hospital

Children just frankly do better when they’re able to have a more natural life rhythm, when there’s not beeping and noises.

Austin, CHD Parent

PARENT TIPAsk for Help if You Don’t Know What to Do

It’s hard to leave the safety net of the hospital. When you notice a change in your child’s health or behavior at home, you may wonder “Is this normal or is this a sign that my child needs to see a physician?”

When you have even the smallest question, find the right medical professional who can get you the answers or information you need. Look at the list of providers you made in the hospital, or find phone numbers on information from your care team. You can always start by calling your pediatrician or pediatric cardiologist. For non-medical advice, you can also call a parent or parent mentor. Keep all of the important people stored in your phone or on a list so their numbers are easy for you to find.

Parents who repeatedly speak up for their needs and their child’s needs often get the best care and attention for their child. Try not to sit with worry and uncertainty about your child’s care because this can negatively impact your wellbeing. If asking for help feels uncomfortable for you – or if you are afraid to call the physician or another parent – you must find a way to put your discomfort aside. Your child’s welfare depends on it.


It is possible for children to have complications after going home. Some of these problems are minor and can be treated by talking with your care team over the phone or at an outpatient visit with your physician. Some children do have a complication that requires them to go back to the hospital for additional treatment and monitoring. It’s important to be in regular communication with your care team so that they know what is happening with your child and can give you the best advice about what to do.

Yes. Parents feel a real pressure to meet their child’s care needs at home. While you may not be trying to look for the worst, you do have an important job in both caring for your child and watching for changes or problems that the care team needs to know about. Even if you live near the hospital, it can be scary not to have the nurses right there to ask questions, or the monitors to alert you to possible issues.

As time passes and you see your child grow and thrive, you will start to relax and understand that you do know how to care for your child, and in fact are the very best person in the world to do so.

For parents of children with CHD who are frequently in the hospital, it can feel like as soon as everyone is settled into a home routine, their child has a complication that lands them right back in the hospital. Every parent experiences this differently. For some parents, the transition gets easier and faster and for some parents it does not. Some parents say that the logistics of the transition get easier with each hospital stay – like what needs to be done, how to get things arranged, how to help their other children adjust – but that emotionally it doesn’t get easier.

You can start by asking your pediatric cardiologist’s office or the social worker on your care team if they can connect you to a parent mentor or group in your area or at your hospital. You can also reach out and connect with other CHD parents online.

Some advocacy groups such as Mended Little Hearts will try to connect you with a parent who has a child with a similar diagnosis.

Conquering CHD has educational videos that aim to address commonly asked questions from parents and families affected by CHD.

Learn more about where to find emotional support