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Mended Little HeartGuide

Introduction Contents SECTION Understand your monitoring responsibilities. You may be asked to do monitoring at home for infants with single ventricles. A nurse or other medical professional may call your home to help you keep track of pulse oximeter and weight readings, for example. Be sure you understand your responsibilities; know what you need to monitor and how. Don’t feel trapped in your home. Many parents and caregivers are afraid to take a baby or child with CHD outside of the house for fear that they will be exposed to germs. During cold and flu season, it might be a good idea to limit outings with your child, but in general, getting outside and interacting with others is helpful for your mental state and your child’s. Use common sense: Keep hands washed, avoid people who are sick, drink plenty of fluids, eat a balanced diet and get enough sleep. These things will help your whole family stay healthy. Talk to your doctor about immunization options that may minimize risks during cold and flu season. Get support. It is also natural for parents and caregivers of children with CHD to feel like they can’t leave their son or daughter in anyone else’s care, but you need to find ways to take brief breaks and stay healthy. (See the Taking Care of Yourself section of this Guide.) Find someone you trust to babysit and take a 15-minute walk around your neighborhood once a day. Remember, your child would not have been discharged from the hospital if he or she was not well enough to be at home. Reach out to your family, local support group, church and your state’s Department of Health and get support! There are resources available for you. Depression is not uncommon in caregivers. It needs to be addressed and treated. You are not alone. About My Child’s Heart Table of Don’t feel guilty when things don’t go perfectly. Sometimes you can do everything right and something will still go wrong. Your child may fail to grow or gain weight. He or she may have symptoms that need to be addressed. There is enough guilt involved in having a child with CHD; the last thing you need is to blame yourself for setbacks that may occur. You are doing the best that you can. If you feel like you can’t manage, get help. Caring for a child with CHD right after surgery is scary. You may be afraid that your child will get seriously ill or even die. It’s normal to feel that way. Trust your instincts. If you feel like there is something wrong with your child, don’t doubt yourself. It is far better to check it out and find out that there is nothing wrong (even if you feel a little embarrassed) than to have something wrong with your child that isn’t addressed. As a parent, you know your child best, so trust your instincts. Never feel bad about being persistent. No one advocates for a child as well as a parent. Go To 64


Mended Little HeartGuide
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