For many parents of children with a congenital heart defect, the hospital becomes their default home away from home. Yet no matter how many days and sleepless nights you spend in a hospital room, or how well you know the names of nurses, respiratory therapists and cardiologists caring for your child — it’s still incredibly stressful.
But there are things parents can do to help make the experience a little more comfortable. We asked three heart moms to share tips for making the hospital stay manageable. Here’s what they had to say.
Kelly’s daughter, Sawyer, was born with hypoplastic left heart syndrome. Sawyer spent roughly the first 10 months of her life in and out of the cardiovascular ICU at Riley Hospital for Children in Indianapolis.
Grey has two boys. Heart-healthy Corbin just turned 3. Logan, who is 18 months old, was born with a number of congenital heart defects, including dextrocardia, pulmonary atresia, double outlet right ventricle and transposition of the great arteries, as well as ventricle and atrial septal defects. He was in the hospital from birth until he was 30 days old. Logan had his first surgery at nine days old. For his second surgery, Logan spent 10 days in the hospital.
Rick is mother to Isabella, who is now 3 years old. Isabella has tetralogy of fallot with pulmonary atresia. Isabella also contracted a bacterial infection that led to endocarditis, or a swelling of the inner lining of her heart. Isabella had two open-heart surgeries before her first birthday, and she will have more surgeries in the future as her pulmonary arteries grow.
These three heart moms had similar advice that includes staying active in your child’s care, asking for help, connecting with others, and being your child’s advocate. Also, remember that it’s hard to be a good caregiver if you aren’t taking care of yourself first. These tips, along with those found in the Mended Little HeartGuide, won’t take the stress of a hospital stay away, but they can make it easier and help you feel more confident.
These heart moms agreed: Stay as involved as possible. “Do whatever the hospital will allow as far as holding your baby and changing diapers, clothes, blankets and having bath time. If you’re not sure if you’re allowed to do something, ask. It can be easy to feel like you’re missing out on the normal parenting experiences,” says Kelly, “but often the nurses and doctors are willing to work with you so that you can still have opportunities to be regular ol’ mom and dad.”
Often when moms feel like something may be going wrong, they doubt themselves thinking the medical professionals know best. Trust your intuition, and do not be afraid to speak up.
After her daughter’s first hospitalization, Rick knew how her daughter reacted to certain treatments and medications. At a subsequent hospital stay, Rick spoke up when she became uncomfortable with some of the drugs Isabella’s doctors were recommending.
“Isabella had some doctors who wanted to restart medications or tube feeds, and I didn’t feel that she was ready,” Rick says. “Or if I felt something wasn’t right because I remembered how Isabella tolerated certain medications or procedures previously. I finally got the doctors to understand.”
Parents often have to learn how to be a strong advocate for their child. Also, it’s better to speak up and be wrong than to not say anything and have a bad result.
“Rounds” are when a team of doctors, nurses and other health care providers caring for your child go over his or her status together. Sometimes this is done in a conference room, but often rounds take place in the hallways outside patient rooms. In recent years, caregivers have begun inviting parents to participate in rounds, as was the case with Samantha Kelly.
“It was very important for me to know what was going on with my child medically,” Kelly says. “I respectfully voiced concerns and asked questions as they came up. I felt more comfortable knowing the numbers, understanding the changes and being part of the conversation. Establishing myself as part of the care team helped establish a healthy and respectful relationship with the medical staff and helped me to better trust the people who were caring for my most precious daughter.”
“It was so hard leaving our heart warrior to go to our room for the night,” says Grey. But, she adds, “Nurses have seen it all. They can handle it all. And they know how to comfort kids. If our kids need attention, it will be given. If they want to play, the nurses will entertain. They’ll help them get back to sleep or they’ll comfort them. In fact, they look forward to being able to interact with the kids on a different level than medical. They don’t get that chance very often because we parents are always there. Get your sleep.”
“When people like your family and friends say they want to help you when they come to visit, welcome that offer,” Rick says. She and her husband, Jeff, were at Isabella’s bedside around the clock. “Take short breaks and you’ll feel much better.”
“Life still goes on outside of the hospital walls,” says Grey. She and her husband, Jake, also have a 3-year-old son, Corbin, who still needed to go to preschool and do things while his younger sibling was in the hospital.
“Corbin’s world didn’t stop because ours did. Once our heart warrior, Logan, was stable, Jake and I would take turns going home to be with Corbin,” she says.
It was bittersweet, Shannon recalls. “Being at home in your own bed gives you a sense of normalcy. I knew my heart warrior was being taken care of, but it was still hard being so far away — a twoand-a-half-hour drive.”
Give Yourself a Little Grace “When things get overwhelming, know that it’s OK and necessary to take care of yourself,” Kelly says. “Go on a walk, go home for a home-cooked meal, meet a friend at the mall and just do something for yourself. It will help you feel rejuvenated and better prepared to care for your child. You can’t pour from an empty glass.”
In the Mended Little HeartGuide, there are excellent tips for caregivers to help you stay healthy, mentally and physically, during a stressful hospital stay.
Kelly and her husband, Patrick, say they have made great connections with other heart families, “but none so strong as the ones I made with other mommas who were in the trenches with me. They were right down the hall, fighting the same battles at the same time. There are healing powers in 20-minute coffee breaks with a friend who understands, so reach out.” Mended Little Hearts chapters provide ways to connect online and in-person so parents can get the non-medical answers they need and know they are not alone.
While no hospital stay is easy, you can make the best of it by being as involved in your child’s care as possible, connecting with other families in your unit and accepting help when friends or family offer. If you’re feeling overwhelmed, be sure to ask the hospital staff for guidance. Child life specialists and social workers can often point parents toward resources to help ease the burden of a hospital stay. For more tips on managing a hospital stay, please check out the Mended Little HeartGuide at www.MendedLittleHeartGuide.org.
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