Thank you so much for the advice and general support and love from our last post about Andrew’s feeding woes. We really appreciate it :).
Andrew is out of his 4-6 oz a day listlessness and has now worked up to about 16-20 ounces a day (which translates to about 480-600 calories a day.) Our doctor and nutritionist would like to see a minimum of 1000 calories for steady weight gain. Otherwise, keeping Andrew comfortable and the food down is still our main issue. While we keep plowing on with what we’ve been doing (which hasn’t been going as well as we’d like), we’ve been considering other options as well. Here are our top two options:
OPTION 1: J-TUBE AND/OR NISSEN FUNDOPLICATION SURGERY
Right now, Andrew’s tube brings food straight to his stomach, but he’s still refluxing and vomiting a lot of it up. A J-Tube would bring the food straight to the jejunum, near the entrance of the small intestine, thereby completely bypassing the stomach. The benefit to this, if it works, is that it makes it a LOT harder to reflux up stuff from the small intestine than from the stomach. The other surgery option, which could be coupled with the j-tube is the nissen-fundoplication: surgeons take a portion of the stomach and wrap it around the esophagus. The nissen sometimes helps, sometimes doesn’t. Generally, it can get rid of the ability to vomit but not the urge. We are more open to the j-tube over the nissen. But, ultimately, we’d love if we could avoid any more surgeries; Andrew’s already had four on his little tummy already and he’s not even two! Surgery will be our last desperate option. And such is the nature of severe reflux, but surgery may not even help all that much. One will just never know until they try it. We’ve decided to put any conversations about surgery on hold until summer at the earliest. We have too much going on between now and then.
OPTION 2: FEED ANDREW REAL FOOD IN THE FORM OF A BLENDERIZED DIET
Most medically complex babies, children and adults who depend on a feeding tube for nutrition drink specialized formula. Forever. They are fed nothing else but the formula for the rest of their lives. It is nutritionally complete, easy for parents who are juggling so many other needs with their child, and preferred by doctors and nutritionists because it’s complete nutrition and easy calorie calculation.
To me, the easiness of the formula preparation has always been appealing. However, the idea of Andrew being fed formula through his tube forever and ever has always made me slightly uncomfortable for two reasons: First, when Andrew was eating by mouth–although not very good at it–he was eating real, homemade, nutritious food. As any parent will tell you, preparing and feeding one’s child good, nutritious food is a primal urge of sorts and immensely gratifying. For me, Andrew getting a g-tube and no longer eating by mouth was difficult to accept and took over a year of going back and forth before finally agreeing to have it done. And then to have him go from real food to a 100% formula-only diet forever felt like another small kick. Which leads me to the next reason I’ve never felt completely comfortable with Andrew’s formula-only diet: his Elecare formula is 53% corn syrup! Yuck!
Because Andrew refluxes so much of his food anyway, I figure I have nothing to lose in trying something called the Blenderized Diet. In its most basic form, I would take real foods like vegetables, fruits, grains, and meats and blend it in a super high-speed blender until it becomes liquid form. And then, like his formula, I’d feed it to Andrew through his tube the exact same way. My hope is that Andrew will eventually switch to a mostly real food diet (fingers crossed that he tolerates it) and, like so many other families have found, the real food will calm his tummy down enough to keep it down.
Our nutritionist and GI doctor said they’ve never had a patient go the blenderized route and weren’t very familiar with it. As this is rarely even presented as an option by most medical professionals, I wasn’t surprised. However, there are a handful of GI departments around the country–mostly at the top children’s hospitals, like CHOP or Cincinnati Children’s–that encourages and offers parents the proper supports to get started with the blenderized diet. Our medical team was not discouraging of it, however, and said they’d be willing to work with us as it would be a learning experience for them as well.
Ending on a random note, a cute video of Eleanor and Andrew. Excuse that it’s sideways. I couldn’t figure out how to flip the video around so that it’s horizontal. It still amazes us how sweet, gentle and appropriate Eleanor is with her dear twin brother.