Saw a mom the other day with a child with many complications.  I have her 
permission to post here to see if there is any input on this topic.  She is 
struggling to keep up her supply and would love some input on how to feed her child 
more efficiently.   I have checked the archives but nothing comes quite close 
to the following:
      The child has Pierre Robin Sequence or PRS.  Not all kids with PRS 
require tracheostomies; some can resolve their airway problems by being positioned 
on their stomachs, with gravity helping the tongue to fall forward. He was in 
distress right after birth, though, and was intubated immediately. He had his 
trach inserted when he was four days old. At 17 days of age, he had a g-tube 
put in. Eating by mouth was just too much work for him in those early days. 
Now he eats about 23 of 29 total ounces/day by mouth. (No more feeding pump; we 
only use his g-tube to put in bolus feeds of 2 ounces at a time at night while 
he sleeps.) He eats with a Haberman feeder. He's also eating solids now. And 
doing really well with that. He did not have a Nissen fundoplication (which is 
a procedure that often goes hand-in-hand with a gastrostomy to prevent 
reflux) but he does take Zantac twice a day to prevent reflux. He now has a MIC-KEY 
button and it doesn't seem to slow him down at all. He rolls around on his 
stomach as if it weren't there. 
       The surgeons want to wait as long as possible because the palatal 
shelves will continue to move into their more permanent locations during the first 
year. Waiting also allows for more soft tissue to work with in the surgery.  
This child's surgery is at 13 months. The fact that he has a trach and is, as 
such, already speech delayed, means that they can "afford" to push the surgery 
back a little further still.  He is currently 9 months old and is estimated 
to have the speech development of a 3-month-old.)and not allowing air to pass 
through the mouth/nose. 
       She is struggling to keep up her supply without baby going to breast.  
She is wondering what she can do at this point to begin to bring him back to 
beast, yet he can only take milk from Haberman.  Any thoughts or ideas?  
Thanks, Ann Conlon-Smith, IBCLC























Ann Conlon-Smith, IBCLC
http://www.trianglelactation.com
Breastpumps, Slings, Pillows and more
"What value has compassion that does not take its object in its arms?"
-----Antoine de St. Exupery-----

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