More than a Diaper Bag: Practical Tips for Car Travel with a Special Needs Baby
Car travel with a special needs baby takes planning and foresight to a level that can challenge even the most experienced or organized parent. Not only do you have to consider meals, diapering and entertaining the baby while on the road, you might also have medical equipment, medications, and situations unique to your baby’s diagnosis that need to be worked into your packing and planning. The realization that more than the usual contents of a diaper bag was needed to meet my baby’s special needs hit me hard when I started packing for our first pediatrician visit two days after my daughter was discharged from NICU. It only took a couple of day trips for me to fully understand that organization and planning, not only, met Clara‘s physical needs, but also, helped us to make the most of our time together as a family.
For Clara’s first two years we lived an hour away from the Children’s Hospital where she received her medical care. Between therapy, eight specialists, and a pediatrician, we drove over 5,000 medical miles a year. An average appointment day was five hours. We started off with only the usual “preemie apnea” monitor, then added portable oxygen with back up tank, pulse ox, suction machine and a feeding pump. By the time we made our first four hour road trip, we felt confident in our ability to face challenges on the road. Yet, we still learned something new about organization and entertaining babies with every trip. When our son Alan was 5 weeks old and Clara was 11/2, it was time to tackle the twelve hour drive to visit Grandparents. Whether you are travelling for medical reasons or family fun, here’s some tips about making car travel easier that I learned from spending hours on the road with a special needs infant and then with two under the age of two.
Pack with a Plan
Pack the night before is advice that’s heard often because it’s really good advice. No more throwing stuff into a suitcase the morning of the trip! Packing yourself, a baby, and getting everybody dressed and out the door all at the same time is overwhelming in any situation. If you are not a list maker, seriously consider becoming one. Don’t try to write the list from memory the day before you leave. Keep a notepad handy and add to your list as you go through your week. Make sure you include items you only use a few times a week, at specific times of the day or night, as well as cleaning or sterilizing supplies. Check medical supplies such as apnea monitor patches, oxygen tanks etc. and plan their next order before your trip. Ask your supplier if early delivery or delivery to your destination is possible. Always pack one more than what you think you will need; it’s common for medical supplies to be defective and for tired parents to drop or lose things.
Prepare food and medications in advance. Powdered formula labels give guidelines on how many hours the formula can be stored once mixed, always make the largest batch you can. Formula, breast milk, and undiluted formula concentrates can be frozen for travel. We premeasured formula into bottles with travel caps so a feed was always ready. The little bottles and white caps the hospitals give you will last forever as long as you don’t clean them in anything hotter than the top rack of the dishwasher on a regular setting. We’re still using the same ones NICU gave me when I was pumping for Clara over three years ago, except now they carry her powdered thickener and my salad dressing. The white caps also fit larger standard baby bottles; scoop formula powder into them the night before then add bottled water and a nipple for feeds when you’re out.
The way you pack changes as your baby’s needs change. For us, I started with a grab and go diaper bag that was always packed with the basics. I restocked as soon as I could so all that was needed for our next car ride was food and medications. When I was packing for two babies, I switched to a small soft-sided cooler that was split into hot and cold sides. The lined hot side carried G-Tube supplies, pacifiers and burp clothes. Diapering supplies and a change of clothes were tucked behind the liner to keep them apart from the feeding supplies. The food and an ice pack went into the cold side before we left. I only carried what was necessary into the building and extra supplies stayed in the car. Now I use three small bags for day trips with both kids, one for diapering, one for toys and snacks, and one for a change of clothes. Changing your organization as your baby changes and grows helps you give more attention to your special baby than to his special needs.
For longer trips, we divided everything into clear plastic storage bins. Anything having to do with feeding went into one, baby clothes in another, medicines and syringes in another. Diapers and wipes stayed in their cases. It was easy to carry an overnight bag and the food and medicine bins into the hotel for an overnight stop. In the morning we prepared food and medications for the day and replaced what we used from the grab and go bag.
Maximize Minimal Space
To save space we planned on doing laundry and buying diapers, wipes and formulas during our vacation but our hosts would have been happy to stock up for us if we had asked. Don’t forget vertical space. Soft sided rooftop carriers can be found for less than $100 and are worth every penny. That extra space lets you keep the supplies you will need daily in easy reach.
If you are visiting family or friends ask about borrowing a portable crib or a pack and play. Check online for services that rent baby furniture by the day. Do not assume that your hotel will have a crib available because they offer one to guests. Reserve loaner equipment in advance, especially during busy seasons. If your room does not include a mini-fridge or microwave ask if one can be moved to your room for your stay.
Many parents of special needs babies wonder about car beds when they think about car travel. Car beds require a doctor’s prescription, keep it with your vehicle registration because some states require that you must present if you are stopped on the road. Check the length of the car bed to make sure your baby will fit. We were lucky, our Early Intervention service had a loaner we could borrow the only time we needed one. Con: The baby is lying flat the entire time, not a good idea if reflux or excessive oral or nasal secretions are a concern. Be aware that if you try to elevate the baby’s head or the head of the car bed it might not provide the same level of protection in an accident. Pro: Clara was small enough for the car bed to double as a cosleeper when the Ronald McDonald House we stayed in did not have a crib for her.
Call your Home Health provider to find out if your equipment is available in a travel model. This can be a big sanity booster, even if you are just making frequent short trips. I learned this after pulling over three times in 30 minutes to reset a feeding pump that alarmed with every bump in the road. I had seen another parent with a portable pump at an office, and I called our home health company from the side of the road asking what we had to do to get equipment that fit our lifestyle. The answer? Just ask. Some companies require a prescription for travel models.
Medical equipment batteries usually have longer lives than everyday small appliances. But this varies with age, condition, and model. A cigarette lighter DC/AC power inverter is a handy backup – and also works great with electric breast pumps on the road. Some devices pull more energy than others; you might want to take the power cord or handbook to an electronics store for help selecting the proper inverter. Make sure to include chargers on your packing list.
Most insurance companies will allow you to refill prescriptions seven days before the actual refill date. Call your pharmacy to find out your insurance provider’s policy if a refill is due during your trip. Using a national pharmacy chain makes it easy to refill at your destination. Prescriptions can also be transferred from pharmacy to pharmacy if necessary. If you will need meds compounded when you’re out of town make arrangements to temporarily transfer the prescription to a compounding pharmacy before you leave
Save your syringes! Some hospitals will let you keep the capped oral syringes that the nurses use, ask if they don’t offer. You can clean and reuse these. Do not hot sterilize disposable oral syringes, cold sterilize or clean them with dish soap and water. We used to draw up 24 hours worth of Clara’s medications every morning. The bottoms of the plungers were marked (“Z” for Zantac, etc) and the capped syringes were placed in baggies labeled with the time the meds were due. We used the same system for travel. The day’s baggies went into a cosmetic bag that stayed with me while the bottles and extra syringes stayed in a storage bin I pulled out once a day for refills. Remember to shake the prefilled syringes before giving the medication and to store meds that need refrigeration in a cooler. Never leave medications in a hot car. Store capped syringes so the plunger can’t get pushed (trust me, it can get messy). Don’t forget extra pre-filled flushes.
Your baby might still need PRN’s when you’re away from home. Sometimes I carried a marked, pre-filled syringe and sometimes I just brought the whole bottle. The last thing you want to do on vacation is hunt for a 24 hour drugstore for Tylenol or Mylicon. And you might as well pack a mercury-free thermometer. They don’t take much space, and it’s better than hunting for an E.R. because the baby feels hot.
Google “dirty hotel rooms” and you’ll get the picture really quickly. Price has nothing to do with cleanliness – we learned our lesson after letting Clara play for 15 minutes on the floor of a room already reduced to $150/night. We took her straight to the manager, who took one look at her black hands and knees and gave us another discount and a king sized sheet for the floor. The hotel was too busy to shampoo carpets during tourist season. Don’t make assumptions about the cleanliness of microwaves, mini-fridges and loaner cribs. And remember, in some hotels the bathroom sink doubles as the kitchen sink and is cleaned with the same cloth as the rest of the bathroom. I plan on sanitizing everything upon arrival and always put down a towel before handling formula or medications in a hotel room.
Clip alcohol based hand sanitizer onto your stroller or diaper bag in case you have no running water or are faced with a bathroom that is less than satisfactory. Carry disposable sanitizing wipes that have both antibacterial and antiviral properties to use on bathroom changing tables, booster seats and on restaurant table tops. Stomach bugs are not pleasant travel companions.
We had so many appointments in Clara’s first year that we had to be strict when putting her in the car seat. Like many babies, she would fight it at times but the only thing we could do was promise her that she wouldn’t have to go anywhere on days with no appointments. She quickly learned that resistance was futile. Alan, on the other hand, screamed at any trip that lasted over ½ hour. After an hour or so he might fall asleep, but would wake up crying at any stop longer than a red light. He fought the car seat from birth until he reached 8 months; the same time we finally found the right combination of medications to fully control his reflux. To be honest, when you’re in the car with an infant under the age of one there are going to be many times that nothing will make them happy. You can’t really blame them – car seats can aggravate reflux, the baby is trapped in one position, and the view stinks. Car trips with a newborn or sleepy baby who only eats and sleeps can be a lot easier than trips with an active baby eager to move and play.
We give our babies stretch breaks every two hours when we’re on the road. We carry a blanket for picnic style meals because I can’t make a baby sit in a restaurant after spending hours in the car. We took the babies out of the car seats, swung them through the air, and let them roll around the blanket. We even did diaper changes outside. It was hard for my husband to give up driving straight through, but beating your best time is one of the many things you put on hold when you have a baby. In bad weather the babies had to wait for their stretch breaks or take them inside the parked car, but the important thing was they got a regular change of position and chance to move around.
Taking a favorite toy away for a few weeks then pulling it out in the car can excite a baby as much as a new toy. Some parents like to loosely gift wrap a toy to give older babies an extra activity. Our travel toys stay in the car and are only played with during rides and during appointments so the kids are always happy to see them. If you show your baby DVDs, make sure they are age appropriate and last thirty minutes or less. Believe it or not, two of Clara’s road trip favorites were a bird watching DVD and an aquarium DVD with relaxing music. Riding in the back seat next to them helps break up the monotony. You can sing and read to your baby, hold the pacifier if he can’t keep it in his mouth, and try to make drive time pass a little more easily. And you might as well plan on slipping in a little Fine Motor or Oral Motor therapy if you ride in the backseat.
Overstimulation can happen outside the NICU and in babies of all ages. Constant wind noise, music, and talking can be overwhelming so plan for quiet time to prevent meltdowns. Sunlight and streetlights rolling by can also stimulate so be prepared to shield the baby’s eyes from light without interfering with the driver’s vision. If your baby is on oxygen, has an apnea monitor, severe reflux, or continuous G-Tube feeds then plan on riding in the back for safety.
G-Tubes and car seats are not always the best combination. Pressure from straps and positioning can irritate the stoma or cause it to leak. Use a barrier cream around the stoma to protect your baby’s skin while traveling. Pad or reinforce the stoma with a washcloth or a diaper turned inside out and rolled up. Buttons can open and tubing connections can separate and make a huge mess. Triple check your connections and keep tape handy if this is a recurring problem (make sure to fold over both ends of the tape to make it easier to remove). Put waterproof pads between the baby and the car seat. And keep paper towels, baby wipes, clean clothes, receiving blankets or burp clothes and garbage bags in the backseat for clean-ups.
Ask one of your baby’s doctors if you qualify for a handicapped placard and don’t be embarrassed to use it. For over two years, I parked as far away as I could get from the building so I could load and unload in an empty parking space. The longer walk meant we were exposed to bad weather and I was always worried that a car would whip around my bumper and hit us. In addition to being close to entrances, the extra room around handicapped spaces makes it safer to take care of your baby while you’re out. Requirements and forms for temporary and permanent tags can be found at most DMV websites and a physician’s signature is required. It can take several weeks to get your tag so plan ahead.
Always carry an up to date emergency information sheet with your baby’s medical history, allergies, medication doses and schedule, feeding information, doctors’ phone numbers, pharmacy contact information and any special instructions somebody might need in an emergency.
Enjoy the Ride
Car travel with a special needs baby requires more planning and organization than car travel with a typically developing baby. But that same planning and organization will reduce emergencies and frustration while you’re on the road. Getting organized before you’re hours away from home helps you relax and enjoy the ride with your baby.
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