Packing List for Your Child's CHD Hospital Stay
You’re probably here because your child has received the surprising and likely overwhelming diagnosis of a congenital heart defect. You, being the amazing parent we know you are, are working hard to prepare for your child’s birth or upcoming hospital stay. This is new territory for you and figuring out what you need to bring with you might be adding an extra layer of stress. Let us help!
LilyPads Housing was founded in celebration of Charlottesville-local heart warrior Lily. Lily was also born with a congenital heart defect (CHD) and required many long stays at children’s hospitals as a baby. Over the years, we have supported many other heart families during their child’s hospitalization at UVA Children’s Hospital and we’ve compiled a short list of helpful “must-haves” to bring with you. A special thank you to Carolyn Ruocco, a Cville heart mom, for weighing in too and sharing some of her favorite tips and products with us! Read about her son’s journey on their substack Henry’s Heart.
TO-PACK LIST FOR BABY
Clothes with lots of snaps down the sides
Your little one will likely need to be attached to many monitors and the snaps allow easier access with the wires. Also, babies recovering from open heart surgery are not allowed to have their arms lifted up for 6 weeks, so over-the-head clothes are tricky! One example of snap onesies are these!
Socks, Hats, & Mittens
Sometimes all a CHD baby can wear are socks and/or a hat. Having your favorites from home can make their stay a bit more cozy. Mittens are helpful in keeping tiny hands away from the tubes and wires.
While the hospital will certainly have blankets for your child, you might consider bringing some from your personal stash so that they smell like home. You might even snuggle with one, rubbing your scent on it so that your baby can smell you even when you can’t be with them.
Lullaby or Nature Noise Toy
Having a toy that plays music, nature noises, or gentle white noise can be relaxing and drown out the usual beeping sounds of the hospital. Make sure you choose a device that is designed specifically for babies so they will not be too loud for their sensitive ears.
High Contrast Images
Low-stimulation images are great for your baby’s developing brain and provide them with something interesting to study (when their eyes are open).
Let us preface this suggestion by saying that you should talk with your care provider about whether or not to use pacifiers with your baby. Depending on your goals, this tool may or may not be one you want to utilize. Oftentimes, there are so few ways to comfort a baby with CHD and a pacifier will support them with self-soothing.
TO-PACK LIST FOR PARENTS
A Large, Well-Designed Tote or Bag
Having a huge bag (similar to this tote), along with some smaller bags that can fit inside will help you retain your sanity when going back and forth from the hospital. You can designate each small bag a task: snacks, pumping gear (if needed), toiletries, and technology.
If nursing your baby is a goal, the hospital stay is an excellent time to work on your milk supply. Many hospitals will provide you with a hospital-grade pump to use, so it’s likely that you don’t need to lug one from home. However, be sure to bring a hands-free pumping bra, nursing clothes, and a nursing cover (if desired). Check with the nursing staff for instructions on storage bottles, bags, and sterilization gear.
Chargers for Your Technology: Phone, Laptop, Etc.
The chargers are self-explanatory–you don’t want to get stuck at the hospital just to have your electronic gear die on you!
Downtime is inevitable during long hospital stays. Having headphones so that you can listen to your favorite podcasts, music, or watch your favorite shows can help pass the time and settle the nerves.
Nourishing Snacks & a Water Bottle
You may not be the patient, but your health is critical while your baby is in the hospital. Pack snacks and meals that fill you up and make your body feel good. Maintaining hydration is equally as important, so consider bringing a favorite water bottle to sip from. If you forget yours, ask the nurse for one!
Blanket & Pillow
Let’s face it, the hospital is not the easiest place to get comfortable. While they’ll provide you with linens if you’re staying overnight, the quality of the bedding often is lacking. You’ll likely prefer your own pillow to sleep on (or to stuff behind your back while sitting) and you’ll feel cozier wrapped in your own blankets.
A Small Notebook
Having a notebook on hand to jot down questions or take notes during rounds can help you stay organized and process all the medical jargon. You might even want to write down milestones or letters to your baby.
There you have it! We hope this list of essentials is helpful as you prepare for your child’s hospitalization. We know this time is probably scary and challenging for you. We encourage you to lean on your support network–ask for help and receive help when offered–and reach out to us if you are traveling to UVA Children’s Hospital for care and need housing! You are amazing!