New Feeding Protocol

As per July 1st, the hospital has a new feeding protocol. Since Ayden is still a resident at Children's, he is subject to said protocol. According to the new standard, Ayden must be able to take half of his feed by mouth before he is able to go to bolus feeds for the full day. Until that time, he does bolus feeds three times a day (10:00, 2:00, and 6:00) and continuous feeds overnight. The continuous feeds overnight constitute 2/3 of his daily intake, and according to the staff, requires no work for Ayden's body to digest. Last night Ayden threw up toward the end of his continuous feeds; his belly has never had that much formula for that long, so it could take awhile to get used to it. (The most Ayden has had over a three hour period is 65ml; this continuous feeding regiment requires 90ml over three hours... but he continuous feeds for twelve hours!)

I'm hoping he doesn't have to get used to the continuous feeds. I am praying that Ayden will be able to demonstrate that he is capable of eating at least half of his Cheez-Its in the very near future. One of the discouraging aspects of the new protocol is that it doesn't allow for many opportunities for Ayden to practice bottle feeding, and it also doesn't provide enough time between continuous feeds and bolus feeds for Ayden to be hungry.

If Ayden is not full-day bolus feeding (these boluses CAN be a combination of bottle feeding and feeding tube) by the time they want to send him home, they may consider doing a procedure called Nissen fundoplication. During the fundoplication surgery, the surgeon wraps the gastric fundus (upper part of the stomach) around the lower esophagus. This prevents the flow of acids from the stomach into the esophagus and strengthens the valve between the esophagus and stomach. The purpose of the procedure is to stop gastric acids from backing up into the esophagus as easily, which means there is less fear of reflux and aspiration. (By the way, the patient can still gag; they just don't gag anything up, so doing the procedure doesn't take away the physical sensation of reflux.)

We are fearful of the procedure for two reasons. One, going into surgery is dangerous, no matter who the individual is; if you add in the fact that Ayden is a hypoplast, it becomes that much more serious. Two, the procedure would require Ayden to once again be intubated and spend time in the PCCU; Ayden has shown that he does not do intubation well; it likely causes vocal and feeding issuses, and since Ayden fights the tube, his throat suffers that much more.

Worry and fear are not of God. Thinking about the "what ifs" are not only unproductive, but they suggest that God isn't capable of once again shining through Ayden. Besides, our little boy is notorious for surprises and strength. Again, we are prayerful for Ayden's continued progress with the bottle!