Life is already hard enough right now the last thing you need to worry about is making sure you have everything for your upcoming hospital stay. I hope this list helps you and alleviates the stress of packing. This packing list has some items geared towards infants and the Norwood, but can easily be adjusted for older children as they go in for the Glenn and Fontan.
For my son’s first surgery, we were gone for about two months. I had to be there a month before he was born just in case I went into labor early and once he was born, we were there for five weeks. Luckily, we were staying at the Ronald McDonald House (which by the way is an AMAZING charity) so they had a lot of stuff we didn’t need to pack. They had laundry facilities and supplies, cleaning supplies for our rooms, and endless amounts of food. It truly was a home away from home. I cannot rave about them enough. (And no, I’m not getting paid to say that. )
There are some things on the list that I want to elaborate on before you go “what the heck did she put that on the list for?”
Giftcards-One thing that I highly suggest doing is putting money on a Starbucks card (or any coffee place that’s close to your hospital) weeks or months before you go. You can do $5 when you can or $25 when you can. Any amount ahead of time helps. I put about $20 from every paycheck on the card and I had about $200 on a Starbucks card by the time we went down and that covered our breakfasts and if we wanted a coffee in the afternoon for a pick me up. I actually had money left over by the time we got home because we didn’t go everyday.
Also, research what restaurants are nearby. Our hospital had a Subway so I did the same thing with a Subway gift card for our lunches.
Side note– The Ronald McDonald House had volunteers that brought sack lunches to the PICU family lounge every weekday. This was so great for days when we couldn’t leave for a few minutes.
This is a great thing to tell family and friends that want to help as well. Gift cards are truly the best gift. Again, search nearby restaurants. We had an Applebee’s across the street from our hospital and our family offered to order us food online for us to pick up. It was awesome and such a good break from cafeteria food.
Bottles, Brush, Dish soap and Bottle Sterilizer- These items you won’t need while baby is in the hospital. These are for when you are back at the Ronald McDonald House or wherever it is that you are staying. Often times when heart babies are released from the hospital they will have you stay at the RMH (or wherever you are staying) for a day or two to see how your child does outside of the hospital setting. If you are staying at the Ronald McDonald House, they will have dish soap and brushes you can use so it is up to you if you would like to pack those in your bag.
Another thing I wanted to elaborate on was Tupperware. This is great especially if you are staying at the Ronald McDonald House. Almost every night they have volunteers come and make dinner for the families and there is usually a ton of food left over.
What my husband and I did the second time around was switch every other night who went back to the House and got dinner. Shift change for the nurses was between 7-8 morning and night and if you were outside of the PICU during that hour, they wouldn’t let you in. Dinners at the Ronald McDonald House were usually done around 6 so it was perfect timing. One of us would leave around 5:15 (Las Vegas traffic is no joke), get there right before dinner was ready at 6:00, pack it in a Tupperware for the both of us, and bring it back just before shift change.
Every hospital is different so make sure to find out what is allowed and what isn’t in your child’s hospital room.
Our PICU let us eat in the hospital room, we didn’t have to eat in the family lounge so that was nice.
Snap up bodysuits– These are optional. You child won’t be able to wear clothes until their incision is mostly healed anyways. However, once they are able to wear clothes the snap up bodysuits are the best because the nurses still have access to all the lines and leads that are on your child’s chest. Before then, your child is able to wear hats, socks, and leg warmers. Here are some great ones on Amazon that I have personally used.
Pacifier– The hospital will give you a pacifier when your baby is born and although that is great, I HIGHLY encourage you to bring your own ORTHODONTIC pacifier from home. The nipples are different and the orthodontic pacifiers will help keep your baby’s palate from arching. Yes, I know it would be a while before that happens, but you don’t want your baby to get used to the wrong pacifier and not take the orthodontic one. Better to get them used to the correct one from the get go.
Formula– This is also for when you are back at wherever you are staying while your child is in the hospital and your drive home. The hospital will have formula for your baby, so you don’t need to worry about it then. (You can also put some money towards a Wal-Mart giftcard, or wherever you normally shop, in case you unexpectedly have to start formula feeding like we did. That way, when you get home from the hospital you have a little bit of savings to get some.)
The last thing I wanted to delve further into is the notepad/day planner you should bring.
The notepad I used to write down questions for the nurses and doctors. You might think you will remember but I can almost guarantee you you won’t. So many different things arise while your child is in the hospital and sometimes things go so fast that you don’t have time to catch your breath. When you get a moment, think and write down any questions, no matter how small or silly they may seem. (Also check out my post on Questions to ask your child’s heart surgeon.)
What is this medication for and how long is my child expected to be on it?
What do these numbers on this screen mean?
What is our goal for weight gain?
What is that medication for again?
What is our feeding goal? (For my son, he couldn’t leave the hospital the first time until he could hold down 2 ounces of formula)
The day planner I used to write down what happened each day. Every day I wrote down how many milliliters he ate, what his weight was, and if anything important happened.
After my son’s first surgery he became very jaundice so I wrote down his bilirubin number every day. He also went into cardiac arrest twice so I wrote down what days those happened on as well.
Anything that you think is important, write it down. The nurses and doctors have a lot of patients and as much as we love them, they can’t remember everything. They might ask you how long ago something happened and it’s good to know the exact day.
I left some extra bullets on the list so that you can add anything else you think you might need.List Revised
For Mom and Dad:
- Hand Lotion
- Extra Pillow for napping at hospital
- Computer/Tablet and Charger
- Cell Phone and Charger
- Playing Cards
- Sweatshirt (hospitals get cold)
- Comfortable Shoes/flip flops
- Day planner
- Cash for Vending Machine
- Hair ties/Bobby Pins
- Pump/Pumping Supplies
- Snacks (gum, mints, etc.)
- Toiletries (toothbrush, toothpaste, dry shampoo)
- Extra Clothes
- Gift card
- Small duffel bag to bring items back and forth to hospital
- Tylenol/Ibuprofen (for your inevitable headache)
- Breast pump/supplies (nipple cream, etc.)
- Bottle Sterilizer
- Bottle Brush/dishsoap
- Snap up Onesies
- Mobile to attach to crib (make sure to double check with your hospital that this is okay)
- small CD player or music player to play lullabies and soft music
- Stuffed Animals
- Orthodontic Pacifier
- Leg warmers
- Formula (if needed)
- Boppy Pillow
- Baby Nail Files
I truly hope this list helps you and if there is anything YOU want to suggest that helped you with your heart warrior then please let me know! I would be glad to add it to the list to help other parents.