All I Want for Christmas is My G-Tube Out!
As a pediatric SLP who focuses on feeding, I guide families through the process of transitioning from g-tube feedings to 100% oral feeds and ultimately, removal of the g-tube. This year, I had the unique experience of learning more about the emotional process through the eyes of one mom who happened to be an SLP, too. In the course of nine months of feeding therapy, her daughter Payton has taught us both that goals and expectations aren’t always met on the SLP’s or parent’s timeline and that most importantly, the child sets the pace. Payton’s mom graciously shared her thoughts on the process:
History: Payton was born in December 2012 at 38 weeks, 4 days and weighed 4 lbs., 13 oz.. One month later, Payton was hospitalized due to congestion, but it soon became apparent that this was a more serious matter. On January 9th, surgeons performed a Ladd’s procedure to repair a malrotation of the stomach and intestines, a Nissen fundoplication to control reflux and secondary aspiration, removed her appendix, repaired a hernia and placed the g-tube.
Payton’s Mom: This was my baby; my flesh and blood. I was so mad, sad, overwhelmed, devastated, in denial, and didn’t want any of this to happen. There had to be another option, another way to make her better. My child was not going to eat through a tube and I was going to do all that I could to get that thing out as soon as I could. I was SO mad and devastated that this had to happen to MY baby. It felt to us that when she was in the hospital, that the goal was to “fix” her and then we were sent home (feeling totally alone and shattered) to cope with all that we needed to get her to grow and thrive. Short and long term goals were not clearly communicated to us. In the back of my mind I knew that this would be a long journey, but I didn’t exactly know how long or what it would entail and I wanted to know NOW! Everyone in the hospital kept telling me that Payton would do this at her own pace (“Payton’s Pace”) but I didn’t want to wait. I wanted my baby better now!
Melanie: We have often talked about the difference between setting goals and setting expectations. Your journey with Payton has helped me to have a better understanding of the difference. Goals are targets or objectives. Expectations feel more passionate and focus on hope, anticipation and personal beliefs.Payton’s Mom: As an SLP, I set goals and benchmarks all the time. There is a target behavior you want your client to meet and you set reasonable, attainable steps to get there over a specific, realistic time period.
As a parent, when you have a child with any challenge, you have expectations for them that are based on your emotions, including sadness, anger, denial and/or hope. From the beginning of our journey, I remember having the expectation that Payton would eat a normal birthday cake and drink milk from a cup on her 1st birthday. Even though Payton just had a feeding tube placed and we were not sure when she would be eating orally again, I still had this expectation.
Melanie: I remember that so well! I asked you what I ask every parent in feeding therapy: “Tell me what you want for your child” and you answered “I want her to eat birthday cake on her first birthday” and then, you stated it clearly to me once again, just to ensure that I understood. “She’s GOING to eat BIRTHDAY CAKE on her FIRST birthday” and you had tears in your eyes. That was a big lesson for me – you’ve taught me so much. Expectations are very emotional.Payton’s Mom: I also had other expectations: that she would be running the hallways of the hospital on the week of her first birthday and say hello to the doctors who treated her! When I stated these expectations, I knew in the back of my mind that it was unfair to myself and especially to Payton to expect this, because if she couldn’t do it, then would I feel guilty, disappointed, angry and upset that the therapists and doctors didn’t do their job right, or that I wasn’t doing my job. It was all based on my hope for her to be “normal” and desperately wanting all the emotions of sadness and anger to go away after this difficult journey
Melanie: Is there anything else you feel would be helpful for parents and therapists to understand?Payton’s Mom: Most importantly, follow your instinct as a parent. I truly believe that following my instinct saved Payton’s life. A parent should trust that feeling inside of them and advocate for their child as they know them best. The opinions of doctors and therapists should be respected as they are knowledgeable and experienced; however as the parent you go through life with your child all day, every day and it’s important to communicate and discuss the issues with the doctors and therapists. Come to an agreement what is reasonable and feasible for your child and family. Sometimes when doctors and therapists are not on the same timetable as you it “gets in the way” of your expectations as a parent. A lot of time is spaced between appointments and as a family, life goes on. Another lesson is to pick your team well. When you have a child who works with many different specialists, it’s important that you work well with them as a family and that your child responds positively to them. There are many options when it comes to professionals and you don’t have to work with who was assigned to you, specifically in the hospital, if you do not communicate well with them, agree with their overall philosophy, or feel that there is mutual respect in the relationship. Lastly, I have learned to respect my child’s pace of development and progress. Getting your child the therapy they need and following through with the recommendations from doctors and therapists is essential, but that doesn’t necessarily mean they are going to meet the goals and expectations for them on your timeline. I have tried to remind myself when things get tough/or my expectations are not met that this is “Payton’s Pace.” She is her own being who will determine what she does and when she does it.
Melanie: Yes, she sets the pace. So, we don’t know if she’ll get her tube out at Christmas. What’s most important is what a fantastic year this has been for her and for Team Payton! Plus, this is her birthday month! She’ll have cake and something delicious to drink from a cup. Probably a purple cup … because she loves purple. Happy Birthday, Payton!
