Weaning a baby off a feeding tube involves a similarly delicate balancing act. All of the weaning programs that I researched require parents to systematically starve their baby in order to incentivize oral intake. With the cause of Viv’s writhing identified and treated, Ian and I chomped at the bit to get V off the tube, not only to be done with the medical intervention and stop the increased reflux and vomiting it creates, but also to free up her hands and mouth for self-soothing and exploration (when the tube’s in, lacing up her nose and down the back of her throat, Viv has trouble chewing on toys and fingers without gagging herself and must wear socks on her hands whenever we aren’t hovering lest she yank the tube out). Robin Glass, the hospital infant weaning expert with whom we finally connected (more on the wagon circling effort to follow by separate post), cautioned patience, insisting that Viv undergo yet another test (a videofluoroscopic swallow study) before developing a weaning plan. We balked at waiting two weeks for an exam that the doctors scheduled back in November and then canceled as unnecessary. Robin stuck to her guns, maintaining that we all had to be absolutely certain that Viv is physically capable of imbibing her goal volume before beginning to wean.
For Vivienne, like Jay-Z, the hits just keep on coming. The test showed that Viv suffers from two separate types of dysphagia (a fancy word that essentially equates to “trouble swallowing”). One of them causes her to micro-aspirate, meaning that she inhales little bits of milk when she eats. This problem seems to be derivative of her hernia, allergy, and reflux. Since eating hurt her for such a long time, she has a “get me out of here” response to food. Physically this means that she pulls her tongue back when food passes through her lips so that her tongue fills a pocket in the back of her mouth that would normally serve as a staging ground for a millisecond, giving her brain time to get organized and close her airway before food comes rumbling by that opening. The second issue most likely derives from the same “low tone” that caused her reflux and would have been an issue for Viv even without her other problems. Basically, the muscles of her esophagus aren’t very strong and need to contract in three to five attempts at swallowing per mouthful swallow actually achieved. In other words, when she drinks normal fluids Viv breathes some of the liquid into her lungs and then still has to work very hard to swallow what she doesn’t aspirate. Bottom line: it turns out Viv’s tube dependence is physical as well as mental.
The same test showed that she swallows purees and formula thickened with a xantham gum “nectar” without aspirating. As we feed her these substances instead of thinner liquid, as we continue another intervention meant to decrease vomiting (what I call “the rabbit plan,” the counter-intuitive method of using a syringe to put formula through her tube in ounce sized bursts rather than pumping the milk at a slow and steady rate), and as she gets further away from her allergic inflammation, Viv should stop fearing food as much and the tongue problem should abate. Unfortunately, the doctors can’t predict how long this turnaround will take. Moreover, the throat muscle deficiency will continue to make swallowing difficult for Viv and will only get better with age. Robin estimates that Viv will require tube feeding for two to four more months.
As I mentioned a few posts ago, kids that need many months of tube feeding generally upgrade to a gastrostomy tube, a more permanent and invasive feeding tube placed directly into the stomach. Complicating matters in Viv’s case, when a patient has already undergone abdominal surgery they’re essentially ineligible for the less invasive PEG g-tube (because the GI doc would thread a tube down her throat and poke out of her stomach blindly and could accidentally pierce a piece of bowel that scar tissue pinned between the stomach and abdominal wall). We thus scheduled Viv for a surgically placed, or “open,” g-tube the morning of February 22.
Ian and I feel a little overwhelmed by the presence of yet another pothole in Viv’s road to recovery, the anxiety appropriate anytime general anaesthesia is in play, andunhappy about the pain and disorientation Viv will experience over the next few days. But our predominant emotions are gratitude for the new information and relief that we didn’t push Viv, starving and otherwise cajoling her to suck it up when she physically can’t.
Update: Viv’s surgery took a little bit longer than expected (since her colon adhered to her diaphragm after the hernia repair, as feared, the surgeon had to move it to get Viv’s stomach up into position for the tube to work), but she now naps peacefully in my lap. Her g-tube will be ready to use and her face, throat, and hands will be free in about a week!