Camila is 2 weeks post-surgery today. We thought it might be helpful to provide an update and respond to some of the most commonly asked questions we’ve received during her recovery. 

 

 

Q: How is Camila recovering? 

 

A: Physically, Camila is no longer in pain or expressing discomfort with her stoma site. Emotionally, we at times witness stress responses to meals through her feeding tube, similar to oral feedings. At other times, she willingly allows access to her g-tube for feedings. Often, she seeks comfort during feedings, which looks like sitting on Mami while watching her favorite shows or listening to music and reading with Mami and Papi. 

 

 

Q: Does Camila notice her g-tube button? Does she understand what it is? 

 

A: Yes and yes. One of the benefits of heightened tactile/body awareness is noticing when something feels new or different. This has allowed for much discussion between all three of us. Sometimes, this involves Camila communicating her boundaries, seeking regulation or celebrating and learning self-love. It’s about meeting her where she is at each moment. 

 

Most days, Camila doesn’t seem upset about having an extra belly button. In fact, we think much of the preparation and education we provided her in the months prior to surgery has helped with both acceptance and normalizing all forms of feeding. Sometimes she even wants her tubie friends (stuffed animals with sewed on g-tube buttons) to enjoy a meal alongside her. 

 

All-in-all, we think Camila is doing the best she can to adjust to her new normal. 

 

 

Q: Is Camila eating a lot more now? Does she appear to be gaining weight/feel heavier/look fuller? 

 

A: We completely understand why these questions have come up. Camila had g-tube surgery so of course the hope is that she is consuming more food. We know many people care about her well-being, and we appreciate the concern. When it comes to her physical health, we tend to focus on her growth curve, the objective and meaningful data rather than subjective. Camila’s medical team monitors her weight and height. We also have a pediatric medical scale and measurement tool at home. With the data regularly collected, this ensures she is growing appropriately or informs our next steps. 

 

With that said, Camila is not yet consuming more food. There are days where we can’t get her to consume what she ate pre-surgery and other days where we can support her in meeting her minimum nutritional goal. There are many reasons why this is happening. We expect the experience of feeling full to be much different from oral feeds: prolonged sensations of fullness, probable delayed gastric emptying complicated by hypotonia, and heightened awareness of stomach sensations. Meals through feeding tubes also increase reflux and the prolonged digestion can be physically tiring. All of these experiences have caused Camila distress and discomfort. 

 

To increase her comfort, we are continuously working with her treatment team to adjust the feeding rate, volume, modality and schedule of her feeds. As you can imagine, there has been a considerable amount of trial and error. 

 

We are hopeful Camila can find more comfort along this feeding journey. In the meantime, an additional week has been added to her recovery plan by her treatment team. 

 

 

Q: Do you notice that Camila is better regulated since starting g-tube feeds? Does she have more energy to get through the day? Is she sleeping better? 

A: Camila functions just as she did before. While we know nutrition plays a role in overall well-being, it’s hard to say whether changes in her intake will directly impact things like regulation, energy, or sleep. Something that we remind ourselves of is that tube feeds aren’t intended to ‘fix’ anything about who she is. It’s simply to help her get the nutrition she needs and hopefully support a healthier relationship with food. We want food to be something she can engage with in a positive way, without pressure or stress. We are hopeful that one day food and fun can exist together for Camila. 

 

Q: How are you and Frankie doing? Do you feel that her care is a bit easier/less stressful now? 

 

A: We are taking this in stride. There is a steep learning curve and the mental load is heavy. Camila’s care has always been all consuming and complex. There are aspects of her care that may not get easier and that is something we have come to accept. A feeding tube doesn’t necessarily lighten that physical or mental load. This is in part because we are in this conscious learning stage where we have acquired the skills and are intentionally focused on the best ways to apply them. The other part is the sheer time spent around meal times, which is 12x longer than oral feeds. With offering more feeding tube meals throughout the day, much of the day revolves around nutrition. This takes a toll on all of us in different ways. 

 

There are costs and benefits, as with all aspects of Camila’s care. The constant in all of this is us continuing to show up for her. That’s the easy part. 

 

Thank you for checking in and providing us with meals! Both remind us how much our family is loved, cared for, and thought of! 

 

With love, 

The Weilnhammer Family