"Aerodynamically, the bumblebee should not be able to fly.
But, the bumblebee does not know that so it goes on flying anyway."
~Mary Kay Ash

Feeding a child with hydranencephaly can be very difficult. This is especially true the first year. Many of our kids eat fine by mouth, some are fed by tube and others use both methods. Even when our kids do eat by mouth there can be a lot of difficulty. Many families find it helpful to have a dietician or nutritionist help follow their care. These experts can help you ensure your child is getting the proper foods/formulas and enough of them. This is true whether your child eats by mouth or by tube.

It is important to remember to keep all your doctors aware of any issues your child is having with feeding. Most families find it helpful to have their child followed by a gastroenterologist. This is what we refer to as our "stomach doctor" in our house. Sometimes feeding therapy can be helpful. Your Gastro doc or pediatrician can help you find and set up these services. Your medical professionals will help you find foods and formulas that work for your childs needs. It is important to let your doctor know right away if your child is not taking in enough nutrition or fluids.

Eating by mouth can initally be fairly easy for our kids and some do very well eating by mouth their whole lives. Many of our newborns have a pretty good suck reflex and take the bottle with no problem. Some need a lot of help. Using different bottles or holding the bottle a specific way can help. Many of our families are familiar with the method of gently squeezing the cheeks with two fingers and holding the bottle with the rest of the hand. This helps keep the mouth stimulated while feeding.

Many of our kids become very agitated during their first months. Some families find it helpful to swaddle their baby during feedings as this can help calm them so they can feed. Limiting stimulation around them, quieting the area as much as possible can also help.

Consult your pediatrician or other specialist about when to introduce oral feedings. Some kids actually eat better by mouth, especially if their suck reflex lessens as they get a little older.

A video of one of our littler guys eating by mouth:

A video of one of our slightly older children eating during feeding therapy:

Some of our kids have problems swallowing and food can get into their lungs when they swallow. This can be determined by a swallow study which is quite painless. Your child is fed foods with a special dye and then they watch the food go down by xray to see if it goes into the lungs. Sometimes meds can help lessen relflux and some parents see a big improvement in feeding once meds are in place.

If needed, foods and liquids can be thickened to help prevent them from going into the lungs. If needed, your doctor will instruct you how to do this and what consistancy to use.

Tube feeding is a difficult decision to make. Many times parents feel like they failed their child in some way if they cannot eat and need a feeding tube. There is no fault to the parents if their child needs a feeding tube. The differences to the brain in a child with hydranencephaly often cause problems such as swallowing difficulties, lack or loss of suck reflex, and even a total inability to feel hunger. Reflux is also a common problem with our kids and can also cause the need for a feeding tube or loss of appetite. Most families who get the feeding tube wonder only why they did not get it sooner.

One common misconception is that kids with a tube cannot eat orally. This is not necessarily true. Unless it is unsafe for your child to eat orally, and/or told not to do so by your doctor, many of our kids eat both by mouth and by the tube.

There are a few different types of tubes, g-tubes, j-tubes, gj-tubes and ng-tubes. NG tubes are placed down the nose, down the esophagus and into the stomach. G-tubes are placed through the abdomen directly into the stomach. Gj tubes are placed through the abdomen, directly into the stomach and then threaded into the intestines to an area called the jejunum. A j-tube is placed directly through the abdomen into the jejunum, which is in the small intestines.

Types of feedings and how the feeding is delivered depends on the child. ng tubes are often fed with bolus feedings, g-tubes can be fed via bolus or pump feedings, gj or j-tube feedings are generally done via feeding pump as they need to be done very slowly.

Here is a video showing a bolus feed via a Mic-Key button. There are many different types of buttons and some children have a peg tube instead.
Note: This child does not have hydran.

Here is a video showing a pump feed via a Mic-Key button. There are many types of pumps and you will be shown how to use yours when you recieive it.
Note: This child does not have hydran.

Some buttons have to be changed in the hospital by a doctor, others can be changed at home. Mic-key buttons can be changed by the parents right at home. This may seem difficult and scary, but once you do it a couple of times it is really very easy.

Here is a video of a child having their button changed. Warning: it does show an open g-tube stoma.
Note: This child does not have hydran.

Keeping the tube area clean is important. Be sure to follow the care advice given to you following surgery. There is a lot of differences in what works for caring for the g-tube site from one child to the next. Many people keep gauze or tube pads on their child, some do not. I personally just wash my childs site twice daily with gentle soap and water, rinse it well and have had almost no problems with it. If your child has foul smell or discharge in their tube area, contact your physician. Infections are not uncommon.

Where to hang pump feedings is a common problem. Many people use IV poles, some hang adhesive hooks to the wall in specific areas, others are more creative like myself and find places like jamming the top of the formula bag between couch cushions. Feeding bags that carry the pump and feed bag can be useful for going out.

It is highly recommended that your child have their head elevated during feedings, whether tube feeding or by mouth. A lot of our families really like feeder seats, a popular one is the Tumbleforms feeder seat. This sets the child at a good angle for feeding and the seat is useful for other activities as well. Many of our children have reflux and this helps keep the feeding in thier tummy's where it belongs. Remember that feeding is another great time for spending time and bonding with your child.


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