This morning, for the first day of her life, Lillian woke up with no tubes. Yesterday, three months and two days after her last tube feed, she underwent the procedure to have her g-tube removed. She is eight months old. It seems like it took a painfully long time to be free from the repercussions of an otherwise healthy, full-term baby experiencing a difficult birth. But the more we talk to friends and medical professionals about tube feeding experiences, the more we learn how rare it is for tube-fed babies to escape tube feeding. Typically it takes years. We didn’t know that when we first consented to Lillian’s g-tube placement. We were so battle-weary, and living in the hospital (which is not at all designed for families to be together) was so unsustainable, that we just grasped at what seemed like the only option. And to this day, I’m not sure what else we could have done to avoid the g-tube other than staying at the hospital, transferring to another hospital, or somehow getting permission to transfer our ng-tube fed one-month-old to Austria. But I can say emphatically there should be another option. In retrospect there was no reason Lillian couldn’t have learned to eat orally as soon as she was healthy enough to do it. That’s what they would do with a baby like Lillian (or even a baby with ongoing health issues, which Lillian didn’t have) at the University Hospital in Graz, Austria. The same protocol should be widely used in the United States. Tube feeding kept Lillian alive when she needed it, but sustaining it after she didn’t kept her from developing normally, caused her terrible discomfort, and horribly degraded the quality of life for our whole family. Perhaps other babies and families are better able to cope with tube feeding, but none would suggest it’s the best first option unless it’s a medical necessity. The American medical industry ought to wake up to that reality and standardize a tube weaning protocol in neonatal care.
As for our family, our future is incredibly bright, and we are so thankful. As the difficult realities of Lillian’s tube feeding days fade to memory, our day-to-day experiences are filled with a sense of awe at the ease and freedom of our new tube-free life. When I talk with other parents of infants, I notice Dave and I have a completely different perspective on the day-to-day trials of parenthood. We revel in experiences like getting up to rock Lillian in her cozy white rocking chair at 3:00 a.m. when she wakes up wanting to take a bottle. We spent our first weeks with her separated from her at night, starting each morning by asking the night nurse how she did. When I did spend nights with Lillian in the hospital, I was awakened by monitor alarms, nurses coming in every three hours, and my alarm going off reminding me to pump, not by my sweet baby needing me. When Lillian was home with us we spent nights with her hooked to a feeding pump, not being able to pick her up and rock her if we wanted to, and we woke in the wee hours of every morning to the horrible sound of her vomiting. Even yesterday, after watching Lillian fight and cry as the anesthesiology mask was placed over her nose and mouth for the tube removal procedure and then convulse and begin to lose consciousness, the kind nurse said sympathetically that it’s a difficult scene to watch. And it was, but I’ve seen my baby go through a lot worse, over and over again, and I am so hopeful and relieved that those days are behind us.
Lillian is thriving as a “normal” baby, and I think it’s in part because she remembers, in whatever subconscious way that babies “remember,” how hard and painful life can be, and is so happy to be free of all that. As a mother, I agonized over the loss of opportunity to bond with my new baby when she had to be taken from me moments after her arrival, when we spent so many hours and nights apart during the early days of our recoveries, when I couldn’t hold her in my arms for her first week, and when we lost forever the opportunity to share breastfeeding. But I see now that we found our own, perhaps deeper way of bonding. I was, and am still, so determined to make up for lost time with her. I rarely think in terms of needing a break (which is perfectly normal for mothers to think about) and instead think in terms of needing to capture every precious moment with my baby. When I sat in Lillian’s hospital room in her first weeks of life, often being displaced from her bedside by hospital personnel with a job to do, often set up across the room from her to pump her milk, I used to feel troubled that Lillian likely had no realization that I was her mother, or even what a mother or a home was. There was nothing in her early reality to establish such concepts for her. If you look at Lillian interact with Dave and I now, it’s plain to see she has bonded with us and understands we’re her “mama” and “dada,” (as she says) and with us is where she belongs. If you were to ask Lillian what parents are, and she had the maturity and language skills to answer, she would say they’re who you need with you when things are difficult because they help you feel safe. That’s the bond we’ve developed out of all this. But the happy prologue is that Lillian would also say parents are people who you get to laugh and have fun and go places with. We’ve gotten to do a lot more of that over the last three months, and we’re looking forward to even more of that in our tube-free life together.