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Mended Little HeartGuide

Diagnosis 3 In The • Ask if alarms can be silenced in your hospital room. Sometimes, especially with babies who are cyanotic, alarms will go off frequently. Some of these alarms can be silenced in the room but will continue to alert staff at the nursing station. • Unless your baby or child needs certain procedures or medications at set times, you can ask that no one wake up your child. Sleep is important for your child’s recovery. • Many parents and caregivers are concerned about their child getting IVs. It’s very hard for parents to watch their child get stuck with a needle over and over again for an IV. Ask the staff to send someone who has a lot of experience drawing blood or starting IVs in children. You can also ask that IVs or blood draws not be done in your child’s bed. The bed should feel like a safe place for your child as much as possible. • Be prepared for differences between the amount of care your child receives in the ICU/ NICU/PICU/CICU versus the step-down unit. Many medical professionals are present in the ICU around the clock. In comparison, you may feel abandoned when your child is moved to the step-down unit because, suddenly, your baby or child is alone much of the time, and nursing care is less frequent. This is a good sign because it means your child is well enough to be in the step-down unit, but many parents and caregivers report feeling terrified about this. Before moving to the step-down unit, ask a nurse to describe the differences in the level of care so you are well prepared. • Use websites or blogs to keep family and friends informed about your child. There are several ways to do this. Some people use Care Pages or CaringBridge sites. Others like to create closed, or private, pages or groups on Facebook and invite family and friends to view their status updates. These are all good options to update many people at once and avoid the hassle of making multiple phone calls or sending separate emails. If you have a close friend or relative with you, that person can post for you when you’re unable to. Plans for Your Child’s Feeding, Clinginess, Pain Management and Emotions Each baby or child will have a different experience in the hospital, but there are some things to know that can help parents or caregivers manage a hospital stay. • Feeding your baby or child in the hospital can be challenging. For breastfeeding or bottle feeding, see the sections on Nutrition in this Mended Little HeartGuide. Some babies or children will not be able to eat for a period of time and will get nutrients through an IV. This can be scary for parents and caregivers, but know that your child is getting nutrition. Other children will need a feeding tube so they can get the nutrition they need. Babies with a feeding tube can still be breastfed and/or bottle fed, but sometimes they need extra calories they can get through a feeding tube. 1 General Information 2 Prenatal Hospital 4 Living With CHD 5 Forms 55


Mended Little HeartGuide
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