I’ve been meaning to write this post for a long while but it seems that I just never have enough time to get it started or completed. I’m going to try to dedicate 10-15 minutes/day until it’s written. I’ll also add to the post as needed. This was actually started a few months ago but I just now got around to finishing it.
No one wants to find themselves preparing for an extended stay at the hospital, especially for unexpected reasons. When we first got Shyanne’s leukemia diagnosis I was in shock and just kind of throwing things in a bag.
When my husband would come to visit I’d have him grab a few more things. I had planned on washing clothes at the hospital but that has not happened yet and we’ve been doing this for around 8 months now.
We also found that we needed snacks/drinks because Shyanne was so little she hadn’t transitioned completely to table food yet. The hospital has several places to get food but everything is so EXPENSIVE!
I started making myself a list of things we needed because I like lists as they help keep me organized. It also helped me check off things every time I had to repack for the next round which reduced some of the stress.
I’ve asked some of the Momma’s in one of our groups about what they’d suggest and I’ll include those suggestions as well. You’ll need to check with your hospital about what is allowed/not allowed because each place is different. I know I wish I’d been able to bring my Keurig but that’s a No-No here. An air mattress would’ve been nice too (I actually bought a couple but never brought them.) I’ve never really had a chance to lay down much so it wasn’t at the top of my list.
You’ll definitely want to pack toiletries, medications for yourself, OTC medications (always check with the nurses/doctors before giving anything to the patient though). You’ll also want to pack some favorite snacks/drinks but make sure the patient is allowed to have them beforehand.
We found it easier to have sets of things so that we didn’t have to pack/repack between stays. We had a hospital set of dishes, clothes, and toiletries. This made it less likely for me to ‘forget’ something that we would need.
Here’s my list, in no certain order, as I’m just going around the room snapping pics:
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This is our packed wagon. A folding wagon was essential to helping me transport all of our stuff back and forth from the hospital. I learned to keep the wagon tucked away in the room because of an unexpected PICU stay one time… it was a nightmare trying to pack everything and load it on the hospital cart at 3:00 in the morning.
I bought this one first and the handle broke off but this one has been much more heavy-duty and I love that it can be pulled or pushed. It also comes with a canopy and belts so we can use it for rides and such.
We are allowed to bring something to cover the window in the door for privacy. I chose this blanket that was gifted to us when I was pregnant with her. We’ve had so many people say how much it has helped them to see this verse.
On the other side (facing the hallway) is her Tiny Super Hero cape with all of the patches that we’ve gotten so far. She also has a ‘mask monster’ warning sign as she loves to steal everyone’s masks when they least expect it.
This little wheelie cart has been a lifesaver as well. We keep a lot of our snacks/drinks in here and it can double as a footrest or small table when needed. I like to have some drinks/ drink packets on hand because I can usually get ice and/or water easily.
The bonus is that it tucks underneath this chair as our space is limited. Sometimes I bring a chair cushion and I can place it on the lid to make it a little more comfortable for using as a footrest.
I actually have a second one that I like even better but we leave it at home because it’s easier for Daddy to pull as he is taller. When we need something they stick it in the tote and whoever comes to visit next can bring the tote to us. Then we get what we needed and load the tote with things to send home like our dirty laundry.
The other kiddos will sometimes put special notes/items in the tote for us too.
That brings me to our laundry bags which were actually intended for dirty diapers but they work well as laundry bags for now. We have two so that we can continually rotate our dirty/clean clothes to/from home. I did bring some laundry pods just in case I had to wash clothes but I’ve never even found the washer/dryer here as it isn’t on our floor.
Another must-have was this inflatable tub as our hospital didn’t have bathtubs. Shyanne loves taking a bath and this has been a lifesaver. It also worked well for helping her when she was still learning to sit. (The tub ball pit pictured was a different tub at home but the same concept.)
I have a shower bag that hangs on the back of the bathroom door. I also hung my ‘bag of bags’ here. These are used to pack up loose items and the big bag holds our huge foldable luggage bags as well. These heavy-duty bags come in so handy for packing everything from clothes to toys but they fold up small to save space.
The hospital usually has a high chair we can use but we do have a folding high chair at home if we need it. I always keep some pool noodles on hand. They work well to provide a little extra cushion/support for high chairs and especially for the metal crib bars.
Thankfully we don’t need them for the crib anymore but they can be placed whole along the sides (under the sheet) to keep the baby from hitting the sides or they can be cut to fit each individual rung to help protect the baby’s head.
We also found that these silicon bibs were great as they can be washed off easily. I started off bringing clothes bibs but one silicon bib can replace a pile of cloth to save space.
I’ve made sure to bring some of her cups, plates, and spoons to keep things as ‘normal’ as we can. I try to keep everything as easy to clean as possible.
I did bring a small dishpan, bottle brush, and straw brush along with some dish soap and my Norwex rags. I can use the dishpan to wash up dishes when needed and the brushes help get things clean. The Norwex rags help me keep things clean without using harsh chemicals.
Our hospital has asked that we don’t bring other cleaners as they may not be compatible with what they use.
I found that these organizers make life so much simpler. I’ll show more pics of some in a bit but this one hangs outside of the closet door. It holds our art supplies and my coffee cups in the top slot.
I was bringing a small kitchen scale to keep track of how much she was eating but her appetite has been really well so I don’t bring it anymore.
The next slot has her plates and bowls, then comes her cups and my manual pump/bottles for the days when she doesn’t feel well enough to nurse. I have scaled back on the items I’ve brought and swapped them out as needed.
The bottom slot has some essential oils that I use for her nausea and my headaches. I just put a few drops on a cotton ball and set it near us, as needed. Again you should check to see if these are allowed.
This also holds some creamer for my coffee and some instant coffee. I use a stroller hook off the diaper bag to hold my Norwex rags so they can dry between uses.
I found that a diaper organizer works great to keep the diapers, wipes, creams, and shampoo neat and tidy. It also holds her hairbrush, nail clippers, file, tissues, extra straws/utensils, my reading glasses, expo markers, pens/paper, puke bags, and other miscellaneous small items that I need to keep close at hand, like the DVD remote.
The organizer also fits neatly in a small bag so I don’t have to pack/unpack it between stays.
We use the drawer to hold some of her snacks and foods. The cabinet holds the extra snacks and supplies that we might need. I have a couple of small baskets to keep things organized as well. All of these organizers fold down or stack inside each other to save space when packing.
I bring some of our creams from home but I always check with the staff before using them. I also use them at every diaper change while she is getting chemo and she only got a rash during this last round. They mixed up some Magic Butt Cream to use and I have gathered the ingredients to make some more if we ever need it again.
This was what I had found on Pinterest and the hospital had most of the ingredients. I think they substituted the anti-fungal with Nystatin and they left out the A&D but it worked very well.
Here are some pics of the inside of the closet where I use a hanging shoe organizer to keep her socks, bows, leg warmers, and hats organized as well as some of my vitamins and such. I found this great pill organizer on Amazon that helps keep my vitamins organized.
These shoe organizers work great for so many things… I have another one at home for her central line supplies. It hangs within arm’s reach of her changing table so I can easily access everything I need.
I also have two hanging organizers that I use for our clothes. Some of the closets are big enough that we can fit them both in together but sometimes they aren’t that big. I hung my clothes in the bathroom this time around. I have our clothes packed in reusable grocery bags to make packing/unpacking a bit easier.
We bring a lot of snap onesies/sleepers for when she is hooked up to IVs. We also bring her own PJs and regular clothes so she can get dressed every day…. Everyone loves to see what cute outfit she will be wearing.
We tried to pack at least 2 weeks of clothes for each of us as we never knew when someone would get back
We also bring a variety of toys. The toy bin was sent to us after her diagnosis by her pediatrician… they are too sweet! It has gotten lots of use as we’ve been bringing it with us every time. We just swap out the toys we bring each time to keep things interesting. If you don’t want to bring toys you can check with your hospital’s Child Life program for toys you can use during your stay.
I pack our electronics like my laptop, tablet, and DVD player in a backpack to make it easy to carry. I also keep a charger for each in the backpack as well as a supply of DVDs to keep her occupied. When we are home we just pull out what we need and then replace it when we repack.
I keep two cell phone chargers because they are expensive if you need to buy one at the gift shop. One of them is an extra-long charger because sometimes the outlets are a bit farther away from where you need them to be.
Our rooms have had an Xbox or gaming station in each room but I have only used it to play DVDs a couple of times.
I have been using the bungee cords from the wagon to hold the DVD player upright on the crib. When she was smaller I would just place the DVD player on the top of the crib facing down so she could see it through the clear plastic. I put the DVD player on charge every night so it’s ready for the next day.
I also have a large notebook and my bill pay sheet in the backpack as well. The notebook lets me write down things I want to do when I am home… it’s also full of sketches that I’ve done of various things like floor plans for future renovations that we need to do at home.
Life doesn’t stand still when we have a crisis so things have to continue to happen like paying bills. My bill organizer sheet keeps me on track so the people at home aren’t waking up in the dark.
We’ve brought different things at different times like the message board which helped make some ‘photo shoots’ a little more special. Our Child Life Specialist and Arts in Medicine people have helped create some beautiful backdrops for little miss as well.
She started potty training during her treatment so we bring her little potty and stool with us. They will stack together and fit into a small bag to make packing easier.
We had a wonderful person who gifted us the little rocking chair and it had become a necessary item during our stays. She is able to sleep in the chair and the rocking helps to calm her down when she is fussy. Space is limited so we try not to bring too many large items although she would’ve loved her bouncer.
I don’t carry a purse so I bring a bag to carry with me when I go downstairs to get food or whenever she needs to leave the room for a procedure. I have a couple of diapers, wipes, my wallet, an extra mask (I forgot my mask during the chaos of an emergency surgery once), and a book to read. It’s kind of like a mini ‘go bag’ for while we are here.
I have found that bringing our own pillows and blankets helps make things a bit more comfortable. A neck pillow is a must-have for me as I spend most of my time sitting up to sleep while holding her. The Boppy pillow also comes in handy as well as our blankie that we use as a nursing cover.
I try to bring a couple of extra blankets/pillowcases/covers so we can swap them out when we send the dirty clothes home. It’s important to wash things often to reduce the chances of infection while she is going through treatments.
We also bring a variety of books and puzzles to help keep her occupied. We have an amazing Arts in Medicine program here that has helped to keep us busy during our long stays. Sometimes I’ve brought some sewing supplies and they’ve provided me with a sewing machine to use.
As you can see, we pack a lot of things that might not be ‘essentials’ but have been essential to making life easier over the past several months. There are things I’d like to have packed but didn’t due to space/ease of transporting.
If I find that we need something I can usually have someone bring it within a few days and then I can also send things back if we don’t really need them. It’s sometimes hard to find a balance between what you need and what you can have in the small amount of space you have available.
Some other great items that were mentioned in our group include:
- air filter – we had a room with a filter
- Jumper/bouncer – we wanted to bring ours but our space was limited
- Inflatable kids pool to use as a playpen – our hospital provider play mats as the therapists like to use them when working with the kiddos
- mini fridge
- Side snap onesies/footless sleepers – very helpful to run lines through and allow access for vital checks
- Posey bed, if your kiddo is in a regular bed – we had a crib with sides and top enclosures
- Mesh laundry bag
- Instant coffee, coffee syrup, and shelf stable milk/creamer to make your own ice coffee.
- Empty spray bottle and EOs to make your own air freshener spray
- Air mattress to put over the pull out couch/chair
You would definitely need to check with your hospital about some of these items as we aren’t allowed to bring many of them to ours.
We also have some baby monitors set up at home some can peek in on everyone there at times. We have this set and a couple of these. We can talk through them and communicate with everyone as long as the internet is working well at home. We also FaceTime as often as we can to help keep everyone connected.
I’ve also found that keeping things as close to our routine at home makes transitions easier for both of us. As we transition away from hospital life we can start making small changes to help make life easier at home as well.
Some more wonderful tips shared by some moms are:
- Have a ‘Do Not Disturb’ sign so you can rest/nap, when needed
- Order meal trays ahead of time so you don’t have early morning calls from dietary – this can give you a chance to sneak in the shower before your little one wakes up
We hope that you never find yourself needing this list but if you do maybe it can help you come up with your own packing list to make life easier.
What things would you bring to make your stay more comfortable? Let us know in the comments.