Lillian and I have been going to weekly feeding therapy sessions at Children’s Therapy of Woodinville ever since she got home from the hospital. Her two feeding therapists there have been excellent resources and support systems for me and are great with Lillian. They helped me take her from a baby who couldn’t stand anything in her mouth to a baby who puts her hands, my hands, and toys in her mouth, and most importantly, was willing to accept and swallow drops of milk. But given conditions that were not within their control, that’s all the progress we could make while Lillian was full, uncomfortable, and refluxing from her tube feeds.
Today Lillian, Dave, and I were excited to show Lillian’s therapist that Lillian had become a bottle drinker in the week since we last saw her. Lillian was so eager to show off for Suzy that she drank an entire four ounce bottle in front of her (Lillian always likes putting on a show and does more for an audience than she does just for me, especially at feeding therapy). Suzy was impressed and happy for us. She answered our questions about bottle feeding, pumping, and weaning Lillian from her reflux wedge, and then promptly graduated us. We had no reason to keep going now that Lillian is essentially developmentally normal.
Lillian and I spent the rest of the day going out to lunch and shopping with grandma and then taking a nice evening walk with Dave when he got home from work. My curious little baby was so content to take it all in and experience new sights, sounds, and smells. These are the simple pleasures I’ve been dreaming of sharing with Lillian that were nearly impossible before because of the tube.
I try not to dwell on what could have and should have been if Lillian had been weaned from her feeding tube at three weeks old when she was medically ready to eat on her own. But of course I have a strong opinion about it now that I have the perspective of seeing what’s possible. I believe that Lillian, and probably many other babies like her, could have been spared months and what probably would have been years of living unhappily with a feeding tube if she had been appropriately weaned in the hospital. All that was needed was the experience and willingness of her neonatologists to safely reduce her tube feedings so that she could learn to eat while experienceing hunger. Newborn babies typically lose ten percent of their birth weight as their mother’s milk comes in and they learn to eat. Lillian was on IV and then tube nutrition from day one, so she never lost weight. Then even when her lungs had healed and she was ready to learn to eat, her doctors ordered that she keep receiving enough food each day to gain weight. Whatever she didn’t take by mouth every three hours, she got by tube. Some babies may be hungry enough under those circumstances to eat by mouth anyway. Lillian was not. She was so full it was coming back up, which made her miserable. Who would want to eat under those circumstances? She needed the opportunity to discover her own hunger satiation cycle, and she needed to be allowed, like most newborns, to lose a little weight as she learned. Lillian’s doctors and respiratory therapists knew how to appropriately wean her from respiratory support as her lungs healed and wean her from a morphine dependency once she no longer needed it. Why don’t American neonatologists know how to wean babies off feeding tubes? There is a better way out there, and it shouldn’t have taken five months and Dave and I paying out of pocket (we both have excellent employer provided health insurance) to experts halfway around the world to find it.
With that said, I thank God we did find it and celebrate every moment ahead of us with our tube free baby. Today Lillian gained another 33 grams. We’re on our way.