FEEDING

INFANT FEEDING

You may have been told to expect certain developments or lack thereof with regard to your child and the effects of Moebius. Perhaps you were told the child would not be able to take milk from a bottle. My guess is that you tried it anyway at some point. I know of at least one mother that tried it. The oft mentioned Habermann Feeder is probably the first experiment with bottle feeding.

'I have been very aggressive with her feedings. At birth she was so week she couldn't even chomp a drop out of the bottle and it appeared as if she almost didn't even desire to.'

'When Sam was about three and a half months we decided to try using the Haberman feeder again. I started by giving her 10cc with the bottle and the rest through the tube. I would pinch her cheeks with my index and ring finger and support her chin with my middle finger to help her create a seal. She seemed to have no problems whatsoever. I continued giving her 10cc's for about a month with encouragement from her pediatrician. Her lungs sounded great and she showed no signs of distress. I upped the amount I put in the bottle to about 30cc and Samantha was fine. She looked forward to her bottle, so forward that I would have to start the tube feeding before the bottle so that she felt somewhat full or she would get upset to say the least. I continued this until her six month swallow study.'

'She never showed any signs of aspiration. No choking, coughing, no blue or redness in her face, absolutely no signs of distress only a eagerness towards the bottle. So when we went to CMH for her study I walked in confidently with a box of rice cereal and a bottle full of formula. They put her in front of the Xray machine, mixed some barium into her bottle and we watched it go down. You could see it going into her stomach and into her lungs. Although it was only a few drops she was at a high risk for pneumonia. We had to quit the bottle and strictly feed her through the tube. I was only to dip her pacifier in the formula so that she could have a taste.'

'We were heartbroken. I truly thought we were going to hear great news. I had to feed her at the hospital before we came home and she started screaming for her bottle. Her bag started overflowing from her stomach muscles tightening up and soon Sam and I were covered in stomach contents. Now we were both crying'.

G-TUBE INSTALLED

REGULATOR HOSE

SYRINGE FOR RINSING

The G-Tube or Button is actually installed through the wall of the stomach. The plug or cover looks much like the plug on an inflatable swimming toy. Soft plastic, insert the plug and twist to lock.

The regulator hose attaches to the Button and to the tube coming from the Kangaroo Bag shown at left. The liquid nourishment travels from the bag, through the regulator, which controls the volume rate of the liquid, and into the stomach. The syringe is used to clean the Button passage when the feeding has been completed. A small amount of water is put in the syringe and then plunged slowly into the stomach.

While this apparatus looks rather clinical and in some ways rather scary, it is certainly the answer to the challenge of feeding a child with a G-Tube. Since the tube from the Kangaroo Bag is lengthy, the mother and baby have some range of movement while feeding. And babies tend to move without announcing their intentions. Something as simple as answering the phone is possible with this set up.