As a tubie parent, keeping your sanity is imperative. Trying to remain a calm parent while retaining the knowledge taught to you about being a tubie parent and caring for your child with additional needs on the regular is no easy task. Having a child on feeding tubes comes with challenges. Requiring additional work than most parents will ever have to think about regarding their child’s eating habits.
At ChildrenFirst we strive to help you keep your sanity as a tubie parent. Check out these helpful tips that will help you as a tubie parent.
For those new to the “tubie” world, a tubie is a child who feeds through a feeding tube. There are a few different types of feeding tubes that a child could have, which include:
Now that we covered what a tubie parent is. Here are 7 helpful tips for not just surviving but rocking at being a tubie parent!
As a tubie parent, you will need to get yourself a backpack for feedings on the go when you are out and about. You can usually find a specific feeding pump backpack at most DME (Durable Medical Equipment) suppliers. However, you can also make one yourself from a favorite backpack. There are some great ideas on Pinterest to make it work for your needs. Grab a pencil box to store meds, syringes, and extensions in on the go. They are cheap and the perfect size for fitting in a backpack.
*Children’s Home Medical Equipment, Inc. (an extension of ChildrenFirst) is a full-service pediatric Durable Medical Equipment (DME) provider servicing all of your home medical equipment and enteral nutrition needs. We are specialists in serving the most highly technical, medically complex pediatric patients. Contact us today for all of your child’s tube-feeding needs!
Make yourself a medicine checklist and put it in a wipeable see-through sleeve that can be reused. This allows for keeping track of all the feedings and medications to avoid confusion or missing a dose. A handy chart like this also allows for a break every now and again and for someone else to quickly step in and see what feeding or medication is due next and when.
Ensure you know how to reinsert the tubes when they come out. This is especially important for the G-tube as it is surgically placed. It is also handy to make some emergency kits to put in the car and extra in the house if there’s an emergency. Include backup formula and a feeding bag. Having extra supplies for your child’s needs, in general, is always a good idea.
Since many of the items are considered life-saving supplies, it never hurts to have a few on hand for backup since many of these items are not something easily bought, just anywhere. Plus, once you do not need them anymore, you can always donate the extras to another parent for their child.
Since overnight feedings are a guarantee, it is best to have a waterproof cover over your child’s crib mattress and place two pee pads next to each other under the fitted sheet to keep spills and accidents to a minimum cleanup. Keep a bucket nearby and a few around the house if your little one throws up. Which is familiar with tube feeding.
While on the subject of overnight feeds, get a portable insulated lunchbox and some ice packs to keep from refilling at crazy hours. This saves time and getting up in the middle of the night while keeping everything cold and at appropriate temperatures for safe feedings. Depending on the temp required for your child’s needs.
Another thing to think about is what your child wears. Depending on the type of feeding tube they have, especially those with a G-tube, an outfit with zippers or lots of snaps may not work.
It is best to have something the tube can easily slide through. Once you find the clothes that work best for them, stick to those and get lots! Babies go through lots of clothes. Having the kind, you need specifically for their tubes and what works best for them will help bring you an easier day.
Join a tubie parenting group online! Whether you join a group on Facebook or find a tubie mom extraordinaire to follow on Instagram. These groups and people have fantastic tips and are a wealth of knowledge. Social media is a great way to connect with other tubie moms and dads.
Having a support system from parents who are going through similar experiences can help pave a smoother road for your family and make you feel less alone. Parenting is tough, especially parenting a child with medical needs who are considered medically fragile.
The world of parenting a child who needs feeding tubes can be scary. You can’t necessarily call up a relative or friend who has had a child and ask for advice unless they have had a tubie. Find the connections and advice you are searching for in an online forum. This will also help your mental state. Knowing you are not alone on the road you are on and other parents are going through the same, or similar experiences can give you just the boost you need to keep a positive mindset.
Being a parent to a child who has complex medical needs can be exhausting, and you must find time for yourself. Though this is easier said than done, your cup is only so full, and if you do not fill yourself up every now and again, what do you have left for everyone else? Whether you meditate in the morning to get yourself going on a positive foot. Calm is a fantastic app to help you find your zen for the day or sit on the back porch for 10 minutes uninterrupted and drink your coffee or tea; you need a little YOU time.
While a massage every now and again or a weekend away is always a dream, we understand that as parents to kids with medical challenges, you do not always have the option for much time away. Find an hour to get a massage or that pedicure you haven’t had in years or play a game of pool with some friends.
Alternate weekend sleep days with your partner so you can each get a bit of extra rest while making sure there is someone on “duty.” Read a new book, take to journaling your emotions and thoughts, just a few minutes a day, and you will instantly start to feel a little saner. Whatever you enjoy or once enjoyed before becoming a parent and taking a backseat to your own enjoyment, it is so important to find a little bit of time for yourself.
Keeping your sanity as a tubie parent is very important. With the added stress and pressures everyday life is now throwing your way, your sanity will keep the family together and everything on schedule. A tubie parent’s day is not like any other parent’s day. With our helpful tubie tips and advice on self-care, we hope you find a few ways to help keep your sanity.
ChildrenFirst is located in Central Florida and offers award-winning pediatric care. We specialize in caring for medically fragile and medically complex infants and children. From providing medical daycares, pediatric nursing, group home options, durable medical equipment, and specialty therapies, ChildrenFirst is here to help where you need the most. We want to help make your life simpler and less stressful, offering the most integrated medical services.
Parenting a child with complex medical needs comes with its challenges. Fortunately, ChildrenFirst is here we are here to assist you and encourage your child to reach their full potential. Contact us today and discover how ChildrenFirst can benefit you and your child!