Gtube feeding pump

This is Luke's feeding pump. He is fed with a Zevex Infinity pump and it's very small and portable with a customized backpack.

We feed him over a 30minute period and he tolerates his gtube feeds very well.

I use this special backpack when traveling. It has a hook at the top to hold the bag of formula while the machine is feeding. I can also hold Luke as I'm feeding him and walking at the same time. Very convenient.

Luke at 3mths of age being fed on continuous feeds.

Luke 2mths (feb 2006)

2mth weight: 11 lbs

He had in home weekly therapy through ECI:

Speech , PT, OT, and Dietician services for the tube feeding

Luke gained weight beautifully being 100% gtube fed.

Formula: Similac Advanced with Iron /continuous fed

Meds: Robinul 5cc's 4x per day

His weight and height were all within the standard 50% curve. Our pediatrician was thrilled.

Pics below of the 2mth:

As you can see, Luke's right eye would float at times. But never consistent enough...eventually his eyes were totally focused and he has zero eye ptosis.

We were able to get a 'mini' smile at times. It was not a smile that could stay on his face..it would be a 1/2 second smile most of the time. (I knew he was in there)
His eyes looked sleepy all the time. Therapists would come in our home and say "you sleepy honey?"..and I would reply "he just took a 4 hour nap".
Luke would keep his mouth open most times..but he could also tighten his mouth as well. Again, a close mouth was shortened in time.
I wanted to post this picture of his hands. Luke had positional contractures when born and his hand on the left had fingers that would not open all the way. His right hand had an index finger slightly angled. After much stretching and physical therapy...his contractures were healed completely. (no splinting needed)
Close up view of Luke's fingers closed...he could not stretch his hands out. They were clasped most times.