Dear Jen,
 I have a 9 yr old daughter with cerebral palsy and I am a physician assistant in a Neurosurgical practice. I think a G tube is a good idea for your son, i know it sounds scary but just think of it this way he will get the proper nutrition without the chance of aspiration which could potentially be potentially very dangerous for a preemie.  I would go for the G tube and continue speech therapy until he is able to eat better on his own.  And I am so sorry for the  lose of your son Logan it must be very difficult for you my prayers are with you form one mom to another mom of a preemie child I can totally understand your fears.  Please keep in contact with me about your beautiful sons

Dawn




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From: Jennifer Gunter <[log in to unmask]>
To: [log in to unmask]
Sent: Sun, June 6, 2010 3:37:12 PM
Subject: To place a feeding tube or not

I'm going to try and make this short. I have a 10 1/2 month old son (Jacob) that was part of a spontanious triplet pregnancy. He was an identical twin and suffered from Twin to twin transfusion when he was born. His identical brother (Logan)  passed aways at 6 months 12 days with respiratory failure. He also a  fraternal brother (Andrew) who is fine. They were delivered at 28 weeks to "save" his brother Logan who was not doing well from the TTTS. Jacob was the recipent of the TTTS Logan the donor.

He was in NICU 67 days. 2 days before discharge I was told he had multi cystic encephalmacia (brain softening) covering almost his entire peridal lobe on both sides of the brain and into the right frontal lobe.

Since he has come home he has always had some feeding issues. Developmentally he is still at a 2-3 month old range. He smiles and laughs. He tracks when he feels like it. His joints are tight. He arches alot. He does not sit up or roll over. He has a hard time holding his head up. Sometimes when he eats you would not know anything is wrong with him. Other times he chocks and gags the entire feeding. He has been between 17 and 18lbs for almost 3 months. Not really gaining or loosing. Since the end of April he has been diagnosed with Right upper lobe pnumonia and mild pneumonia on both sides of his lungs a week ago. We did a swollow study 2 weeks ago showing he has silent aspiration on thin liquids when his had is tilted back or when it is to the right. He did much better with necter thick liquids at a 70-90 degree angle with his chin down and head strait of to the left. He will be starting next week seeing a Speech T. next week. She said he is sucking to
 fast and the milk is pooling in his throat before he can swollow then he is aspirating. I seen a GI doc this passed friday and I was told I can have a g-tube placed or I can continue to work with ST she also wants to up his calories on his formula from 22 to 24. 

I am really stuck on what to do. He does take over an hour to feed at times and I was told I could feed him by mouth when he tolerates it and g-tube the rest. I just don't know if I am ready to except that he may need this g-tube or constantly worry about pneumonia and aspiration, because if I am able to feed him by mouth anyways he could still aspirate and the g-tube does not solve anything but convience of not having to spend more than an hour feeding him. When he is not sick he eats fair when he is sick (which has been ALOT) he gags more.

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