Pierre Robin Network

A place to call home, where you are never alone

 

 
 
 
 
 
 
 
 
 
 

Feeding Tips from Parents

Brandi's experience with an NG tube

My daughter started out having a ng tube placed when she was first transferred to the NICU, after she was born.  We did go home using the Haberman bottle and no ng tube.  After about a month she just could not increase enough in her fluids to grow or stay hydrated, and it didn't help that she was also vomiting every few days from reflux and food allergy issues. 
 

She was readmitted in the hospital at a month old and we received our training in using and placing a ng tube.  It seemed so scary at the time.  We did gravity feeds with the two ounce syringe, which were a pain and we spilled them many times.  We were taught and had to place her ng tube before we were allowed to go home.  She really hated it being placed and just cried, so it was hard.  Plus, her crying made it hard to hear with the stethoscope, the popping noise you listen for in her tummy.  We were also taught how to figure out the length and to mark it so we always remembered, that did make it a lot easier. 
 
After time, she no longer really cried placing her tube and we got used to doing it ourselves.  Our biggest challenge was the tape being so rough on her face and her getting bigger and wiggling around and pulling it out.  We found that tegaderm tape was the least irritating tape for her.  We used another different kind of tape, that looked similar to a band aid, we placed this close to he nose.  We also rotated sides when we changed it to give her cheek a break.  I also learned to cut the tape and place in various places on her cheek.  We would put Aloe Vera on her raw cheek throughout the day, which really helped it heal faster. 
 
We always kept an extra ng tube, 2 ounce feeding syringe and all the other supplies associated with her feeding in a diaper bag that stayed in the car.  We then would pack the same supplies in her diaper bag we took everywhere.  We usually didn't need the extra ones, but they came in handy a few times. 
 
We did a couple of swallow studies with her and it showed she did best on thickened liquids, so while using the ng tube, we also used thickener and the Haberman and tried feeding her every feeding.  We never moved on to a g-tube because she did slowly improve with her feedings throughout time.  We used the ng tube, less and less, over a period of six months.  We finally were able to wean off it, using an open top cup for her liquids.
 
There were many days I wanted to scream and pull my hair out having to use the ng tube.  It was tough, took time, frustrating and all.  Most people didn't know what it was, and would stare or ask.  I didn't mind if they asked, I wasn't offended, most thought it was for oxygen, although I will admit it there were days I didn't feel like explaining about it. 
 
We are now past those days and she successfully drinks regular liquids with no thickeners from a regular sippy cup.  When we were using the ng tube, I never thought we would see those days, but she did it and we made it through it all. 

Lauren's experience on breastfeeding

www.breastfeedingcharlotte.wordpress.com

 

Pierre Robin Network  3604 Biscayne Quincy, IL 62305
Email us at info@pierrerobin.org

 DISCLAIMER: This site and the Pierre Robin Email List server, and the information contained within them, are designed to be relevant to parents, adults and professionals interested in PRS. The information supplied here is not to be used as a diagnostic tool and is not intended to replace or supplement individual medical consultation. Please take this information to your child's physician or your physician and discuss it together. Pierre Robin Network, the author of these pages and the members of the email list server accept no responsibility for the misuse of the information contained within this website or within the email list server messages and files.

Copyright 1999-2012 Pierre Robin Network. All rights reserved.