The qualifier that devastated me? “One to two years”, stated Lynn, the feeding therapist at Children’s Hospital. I felt the immediacy of waterworks spring to action. I tried to hold back the tears but they just slid, big, fat, wet, akin to my dreams and hopes of a speedier G.I. tube removal.
She wanted to make sure I was grounded in reality. That I understood that weaning a child from a feeding tube was a long, slow, arduous existence. “Really, I replied, a liquid diet for Aero for 2 years”? That just seemed incredulous, laborious, effortful. My brain tried to calculate what it would all mean but it was impossible to comprehend; blenderized diet, lots of chopping, pulverizing, pureeing, time. Time, time, time, time….we already existed on such a short leash because of the every 3 hour pump feedings. I live constantly calculating timing of the next feeding and therapy, doctor appointments, grocery shopping, day to day errands. Imagining that existence for another two years made my stomach knot and nauseous. And that ever looming question rears its ugly head again, will life ever be, gulp, normal? Now, I am not naïve to mean normal as in pre-Aero existence. I mean spontaneous, ‘a grab the diaper bag and go way of being’ without the constant calculation of the ‘distance traveled, time spent at location, gotta get home in time to pump breast milk and feed’.
Why were we at Children’s Hospital? The therapist that works with Aero at home, Gaye from Boyer Clinic, expressed concern regarding Aero’s swallow. She described it as ‘effortful’. In teaching him to take a bottle, he gulps down tiny amounts of breast milk as if he were swallowing a dry as sawdust turkey sandwich a week after Thanksgiving. His swallow is audible, a deliberate gulp with a thump. We were at Children’s to determine if Aero was a candidate for a ‘swallow study’. The answer? Most definitely, yes. The study is scheduled for Friday, July 29th.
At Gaye’s next visit, I relayed to her the happenings of the Children’s Hospital experience. She was happy that the swallow study was scheduled. More to my liking, she totally disagreed with the assessment of the feeding therapist. She works with Aero every week and knows his courage, his determination and temperament. How in just a month his very shallow gag reflex is now ‘normal’. How he now sticks his thumb and fingers in his mouth to suck on vigorously. He still will not have anything to do with a binky and that’s OK. I like to think he adopted his mama’s aversion to all things plastic!
On this visit, I shared with her that I am totally OK with letting bygones be bygones. Let’s say goodbye to my breast feed/bottle dream. It is just not age appropriate anymore. He is 6 months old and wanting to explore food. I have given him tastes of yogurt and applesauce and he reacts excitedly with more, more, more wiggles in his body. Gaye decided to break out the baby food purees and fed Aero with small amounts on her fingertip. Aero went berserk for pears and raspberries and even more enthusiastic over carrots!
The outcome of the swallow study will determine how we will move forward. Given a diagnosis of a ‘safe swallow’ means that we can vigorously march down the road of introducing puree at a greater volume, like on a spoon. It means teaching Aero to use a sippy cup with straw so he can take a breast milk/puree smoothie and cut back on some of his G.I. tube feedings. It means Mama sees a light at the end of the G.I. tube tunnel.