Exciting News!

Today we met with J's nutritionist and she gave approval for us to stop using his feeding tube!  (If you're wondering why he uses a feeding tube, here's the story.)  We will stop using it for food starting today, and use the next 8 weeks to transition his water and medicine intake from tube to mouth.  Then he will keep the tube in for another 6 months to make sure he can maintain his weight.

I knew there was a good chance this would happen today (we just saw his GI so I knew his weight and growth have been good, and we've been tracking his diet so I knew his calories and nutrients were in the right range).  But it's still sort of unbelievable that we finally made it to this point.  Every time we thought we were getting close, some new bump in the road came up.  When we left the NICU, we thought there was a good chance that he would be eating orally within a month, once he passed a swallow study.  If I knew then that we were going to have the tube for 4 more YEARS rather than 4 more weeks, it would have felt utterly overwhelming.  The feeding tube turned out to be not nearly as bad as I expected, especially considering how challenging it can be to feed him by mouth.  Nevertheless, we have been looking forwad to this day for the past 3 and a half years, and I am so excited that it's here!!  I'm not a big crier (that's an understatement), but I cried happy tears on the way home from his appointment, cried again on the way to the gym, and will probably cry again before the night is over.  This is such a milestone for us.  I'm so proud of Joshua for working so hard even on the days when eating is a physical and mental challenge; I'm grateful to the therapists who have helped us teach him how to eat; and most of all, I'm praising God for getting us to this point.

To mark this milestone, here are some of the unique memories of tube feeding:

• Leaving the extremely sterile NICU and tube feeding J outside the hospital for the first time near a gas station in rural Nevada. Becoming 1000% more aware of germs everywhere.   
• Putting in the NG tube for the first time by myself at midnight when J was 5 weeks old - feeling terror as it was happening and then feeling like a superhero when I got it in correctly. 
• Countless hours spent watching Friday Night Lights and Grey's Anatomy at all hours of the day and night while the food slowly made it's way through the NG tube and we monitored to make sure he didn't choke.  
• Finally getting some sleep when he got the G-tube, fundoplication, and feeding pump at age 4 months.  
• "Feeding the bed" - the nights when the feeding tube got disconnected from his stomach and the formula got all over the mattress rather than in his belly.  (You will not meet a tube feeding family who has not experienced this rite of passage.)
• Thinking he swallowed his G-tube and taking him into the ER for an X-ray (we wondered if this was even possible - it turns out to be one of the very few things you can't get a Google answer for).  
• Watching him pretend to tube feed his teddy bear.   
• Administering food and medicine via G-tube on a crowded Southwest flight with the help of the kind stranger next to me.  
• Explaining to J that filling the car with gas is like the car getting tube fed.   

I could go on for pages, but will stop there :).  We would love continued prayers for Joshua's eating - it's a little scary thinking about taking out the tube down the road - but today is a day of celebration and praise!