Luke was vented, had the belly button line, NG tube for feeding and monitors to support his oxygen rate and heart rate.
4 weeks old---still in NICU and fully extubated off the vent. Breathing room air.
At this point, his glucose levels were finally stabilizing out with medication.
Side view--his chin was set back and his mouth was drooped on the right hand side
Luke at 2mths old...still in NICU
*his mouth would open wide when picking him up. He was floppy all over and needed full support when holding.
In the NICU at Plano Medical - Our child had a few 'episodes'.
- He would choke on his own secretions post op from the gtube.
- He refluxed his formula and desatted to the 3o's and choked. Therfore, this is why we opted for a fundo nissen.
- After the many episodes of choking, Luke started taking Robinul to help with the secretions. This helped tremendously.
Overall, our 94 days in the NICU was exhausting. We still had no clue what exactly was wrong with Luke other than I was Gestational Diabetic. Our discharge orders included our Robinul secretion medication; motrin for the gtube/fundo site and continuous feeds on similac infant formula. 100% gtube fed.
I must confess, we were unprepared for our Luke being on a gtube. I found out the hard way and I really believe many special needs parents are not adequately trained to deal with a special needs child. The biggest thing was not being educated about the state's services for parents like us. I have had to advocate and find out myself. It's been a huge journey.