What to Pack for your CDH Stay

Packing your car

​If you are like me, basically from the moment you found out you were welcoming a baby into your family, you dreamed of the adorable little outfits that you’d be dressing her or him in. You thought about caressing that sweet, unblemished face and running your hands over those super soft baby locks while gazing into those new eyes, rocking in a rocking chair, or cuddling on the couch.

Then, if you’re like me, your baby was diagnosed with CDH, and those dreams of what welcoming a new baby into the family looked like got a little cloudy. Well, it’s not ideal, but you don't have to give up everything that makes it special.

I’ve put together two lists of what to pack for the NICU. One list is the essentials for mom and dad - things that you may not have thought to bring in previous labor and delivery experiences (if this isn’t your first baby), things that weren’t always obvious to us until we learned about the necessity after living life for a while as NICU parents. And the other list is a list of things that can help you make the very sterile medical environment a little homier and more personalized—ways to celebrate your little warrior.

For mom/dad/caregiver:

  • Hand lotion - Lots of it. With the number of times you’ll be washing your hands and arms all the way to your elbows, trust me, you’re going to get dried out. Choose one that is for sensitive skin and fragrance-free so you can hold your baby's little hand to your heart's content.

  • Chapstick - Speaking of moisturizing, the air in that hospital is so filtered it gets a little dry.

  • A cozy blanket - In our NICU, there was a little shelf by my son’s bed for us to keep some personal items. Sitting in a rocking chair by his bed was a lot more comfortable with a blanket. And eventually, when he was moved to a room that allowed us to board in, that tiny couch was much cozier with a blanket from home rather than just those hospital sheets.

  • Extra clothing - Even if your situation is such that you can only come and visit once a day or every few days, it’s a good idea to have an extra outfit stashed away (for us, it was on that shelf with the blanket). When I first got to hold my son, he managed to pee all over me! Not complaining, just happy to be holding! But I was happy that I had that extra outfit to change into, so I didn't have to wear a pee-soaked shirt out of the hospital.

  • Thank you cards - Life in the NICU isn’t always full of action. There’s downtime too, which I found to be the perfect time to write thank you cards to all the people who had been sending love, support, gifts, and dinners to our family.

  •  A journal - This may not be for everyone, but I found that writing about my experiences each day helped me to process this traumatic and emotional part of my life much more fully. Added bonus—having a record of what daily life was like in the NICU to be able to show my son someday if he’s interested.

  •  Your favorite form of entertainment - The NICU is really good at sucking you in. You can be sitting there for hours and not realize time is passing (typically no windows). As much as you want to be there for your fragile CDH baby, it’s important to focus on giving yourself a mental break so you CAN be there for your baby. Pack a book, crosswords, knitting (whatever gives you joy!), and take a 20-minute breather outside of that NICU.

  •  General “grooming” items - Razor, dry shampoo, deodorant, travel toothbrush and toothpaste, antacids, Tylenol. All of these things can be useful even if you’re not spending the night there. Remember when my son peed on me? You never know when you’ll need a little sprucing up to make you feel more like yourself. I suggest having a little toiletry case that can stay at the NICU (or in your car), so you always have something if you need it.

  •  Comfort Items - If you are staying in a place like Ronald McDonald House, you may opt to bring/buy a few items to make the room more cozy/functional. You can find a full list here.

  • Post-delivery Supplies: For more information on what to pack for delivery, click here.

Now for your Tiny Hero:

items to prepare for NICU
  • Hats/bows/socks/mittens - Just because you can’t fully dress your CDH baby right away doesn’t mean you can’t let them have a little personality. Check with the hospital first, but bringing a hat, mittens, and/or bows really provides a personal touch if allowed. 

  • Photos from home - Photos of the family helped us make our little corner of the NICU feel homier, and I liked to think my son could always see our smiling faces, even if we weren't there.

  • Blankets - I bought my own swaddle blankets and little quilts for my son and slept snuggling with them for a few nights at a time before bringing them in. That way, he was surrounded by something that smelled like mom and like home, even when I couldn't be there. Note: Make sure you label items that you bring from home and post a notice by baby’s bed, saying that they have their own bedding and clothing! Accidents happen (diaper spills, vomit, med spills, etc.) that require changing the bedding and/or clothing. If your nurse isn’t aware that you brought those items from home, they could end up in general hospital laundry and never resurface (personal experience). 

  • Name banner/sign - If you're crafty or know someone crafty, it can be fun to make a little sign for the baby’s bed to add some personality to the generic hospital crib.

  • Baby’s Firsts signs - You know, those milestone cards? Months 1- one year? “First tooth!” “Crawling!” “First Food!”… Some companies make ones that are specific to NICU firsts! We discovered them after we were discharged, but I would have loved them. Some firsts included “First surgery,” “ First time holding,” “Tube free,” “First milk,” and so on. Click here to print free milestone cards.

  • Guestbook - We had a book that we kept by his bed for nurses, doctors, OT, and guests to sign. It was a wonderful place for people to leave messages of love and encouragement and is a great memento for us now.

  • Going Home Outfit - Be sure to include a special outfit to wear on discharge day for your CDH baby!

For more information on what to pack for the Ronald McDonald House (click here) and what to pack for CDH delivery (click here).

Child at the hospital

Thanks to Abby Braun for contributing to What to Pack for the CDH Stay.

Email stories@tinyhero.org to learn about how you can write for Tiny Hero.

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