Thursday, September 6, 2007

Abby's new button

Tummy trouble. Since the very first week of Abby's life we have been struggling with this problem. At 7 days old she got NEC and perforated. She didn't start actual feedings until she was over a month old, and even then she had trouble. NEC attacked her gut again in November with a second perforation event which required an illeostomy. She finally had her "intestines put back together" before we took her home at 6 months of age... we had never been sooooo excited to change a poopy diaper!

Then the reflux kicked in full force. First a nasal gastric tube for 3 months, then a fundo surgery along with our little friend, the g-button. (In this first picture Abby is sporting her BARD button) This was the key for good nutrition and growth for Abby. After several months she was finally on the growth chart.

Abby is still growing wonderfully, although those tummy troubles have never left us. The reflux enemy rears his ugly head often, which makes for difficult feedings and the back tracking of oral feeding success. These past 6-9 months Abby has shown increasing discomfort during tube feedings. After many doctor visits, suggestions and tweaks we are continuing to look into the "why" of it all.

Perhaps it's still reflux, despite her adult size dose of Nexium. We are on a trial run of a recently increased dose before we dig deeper to find the culprit and fix it if possible. I just can't describe how unnatural it feels for us to be 'forcing' (not literally) food into our child when it seems to make her so miserable. That being said, not every feeding is this way. It's really a mystery to us.

She got a new g-button (Mic-Key) yesterday which has become a welcome change. Her feedings and meds flow easily through it with out clogging. We are hoping to eventually switch to a blenderized diet... one which actually includes real food, blended up.

As you can see, it was a long day. Abby was a bit traumatized by the procedure which was painful for her. She had a seizure in the car afterwards and then promptly fell asleep. Josiah didn't want to be left out. My sleeping cuties.