If I’m being completely honest — and I usually am — the first few months of having Sumner home were some of the toughest months of my life. I still don’t know how we all managed to survive.
Sumner was discharged from the NICU after a 152 days. He was exactly 5 months old, but 2 months old corrected for prematurity. (When we’re talking about developmental stuff for extreme preemies, like Sumner, we use his actual age minus the number of weeks/months early. This helps create more reasonable benchmarks.) So, here we were with our two month old who had 24/7 care and supervision for his entire life. It was a bit daunting.
When Sumner came home he was being fed every three hours. Due to his dysphagia, we would feed him one formula (Enfamil AR 26 kcal/oz) orally. Whatever he didn’t eat from the bottle, we would put through his g-tube. However, that was a different formula (Similac Total Comfort 19 kcal/oz) because he didn’t need the increased calories and the pump had a hard time with the thicker formula. When he came home he was eating about 60 percent of his meals orally. We continued to follow a modified SINC (safe individualized nipple competency) protocol. With this protocol, the amount of formula offered orally is gradually increased. The child moves up to the next level when they can successfully complete the majority of their bottles in a 24 hour span. In the typical SINC protocol, oral volumes offered are increased by 10 percent at every level. For Sumner, we modified the increases to be only 5 percent to slow down the process and give him all the time he needed to build the endurance required. It’s a complicated way of saying that we expected to need to use his g-tube for something at every meal until he reached 100 percent oral.
He managed to make it to 100 percent (the first time) about a month after coming home. Unfortunately, this was fairly short lived. About the same time that he reached this milestone, we had a slew of doctor’s appointments, a couple of procedures, and his six-month vaccines. The constant disruptions to his routine did not make for an optimal eating environment. This was further complicated by the fact that all of his food was now the Enfamil AR and his constipation issues were being exacerbated. Poor guy was turning into a rolly polly angry meatball.
In hindsight, we should have stayed the course and helped Sumner figure out how to recognize hunger and build more positive associations with eating . The thing about having a preemie is that the NICU drills into you the fixed volume mentality. These kiddos are fed the same amount of food every three hours whether they are hungry or not. While this is great for keeping preemies alive, it’s not so great for learning hunger cues and building positive relationships with food.
The other issue is that I didn’t truly feel empowered to make changes for my son as we were still going through the adoption process and his weight was being closely monitored by *each* of his doctors. At that point, we were seeing a neonatologist, pediatrician, gastroenterologist, and pulmonologist. Any time there was a fluctuation in his weight, there was the implication that we had done something wrong. We had a feeling that no one wanted to look at our whole kid and see what we saw — that he was overfed and miserable.
At a meeting with his speech/feeding therapist, she was got to observe how we approached feeding him. We offered him his bottle. He clearly refused it and so we said okay. We wanted to honor his cues. She effusively praised us for this. However, we then turned around and set up his feeding pump. This really struck me as wrong because on one hand we were praised for listening to him and then, on the other hand, we immediately dismissed him and force fed him. Looking back, this was a major turning point for us in Sumner’s eating journey.
More to come soon!