A Day Without G-Tube Feeds
My granddaughter can roll over. She did it for the first time when her Nana, my son-in-law's mother, was taking care of her. My daughter called me to share the information excitedly later that day, "Blaise can roll over! Well... nobody actually saw her do it, but Jan laid her down on her back and went to heat her bottle, and Blaise was on her stomach when Jan came back."
I am jealous. Not because the other grandmother witnessed this milestone. Rather, my emotion stems from the contrast I sense in adults' reactions to Blaise and Nathaniel learning new skills. It only took one time of rolling over for all the adults in Blaise's life, me included, to consider the skill achieved. Blaise CAN roll over. There is an unspoken assumption there - she did it once and we fully expect she will keep doing it. She CAN roll over. It means thinking twice about leaving her on the couch or bed. It means keeping dangerous things further away. Once was all it took.
Children with special needs are not as easily granted that CAN DO benefit of the doubt. I remember clearly at one of our augmented communication team meetings that instead of reporting, "Nathaniel CAN put two words together," someone on the team stated that, "Mom reports that Nathaniel has, on occasion, put two or more words together." I remember feeling defeated when I heard that. I wondered how many times and for whom did he have to demonstrate the skill before the milestone would be considered reached. Kids with disabilities have to work harder and prove themselves over and over again before adults in their lives accept that new skills will last. Once is not enough; it is only a start. Augmented Communication is not the only area of Nathaniel's life that I have observed this. It happens across all therapy and medical disciplines.
I am going to defy that trend tonight and boldly proclaim that Nathaniel can eat. He can go a day without g-tube feeds. He can eat breakfast, lunch, and dinner orally.
We saw Nathaniel's local GI on Monday. He is in agreement with our local Pulmonologist, who we saw a few weeks ago, that we should avoid a lot of rules about what we feed Nathaniel. Which is good. Because we gave him chocolate ice cream every night on vacation in July. We now have a consensus to discontinue introducing foods one at a time spread out over weeks. We will feed him. Donuts on Saturday morning if the family is eating donuts. Pizza on Saturday night. Peanut butter sandwiches. Sea Salt and Pepper Chips. Dried Green Beans. Watermelon. Carrots. Strawberries. Popcorn. Cookies. Eggs. Milk. We will be mindful of his oral skills and make notes of what textures give him trouble. We will be alert to any adverse reactions. We will have Benadryl on hand and seek emergency help if warranted. But we will feed him whatever he is willing to take. I was warned by the local and Cincinnati teams that the willingness to eat will be our biggest hurdle. Once again Nathaniel is writing his own textbook.
Our g-tube feeding schedule has been four equal doses given four times over the day - breakfast, lunch, dinner, and bedtime. Over the last few months I have been offering Nathaniel oral food, mostly soft fruits and vegetables, before starting his g-tube feed. The GI stated Nathaniel has moved beyond what is considered "tastings," and a percent of his daily caloric needs are being met with oral foods. I have offered a small amount of his amino acid based formula, Elecare Jr., in a cup at each meal. It tastes horrible, and he makes a face after each swallow. I have carefully measured the amount offered by cup and then reduced that meal's g-tube feed by the quantity he drinks. A couple weeks ago he kept asking for more drink. He drank his entire g-tube dose. It was the first feeding he has taken completely by month since he was a few weeks old. Sadly, I did not celebrate the achievement loudly as I should have done. I have learned once is not enough to convince everyone in his world that he can do it.
The clearance from the local team to just eat opened the door to offer a better tasting "milk" this week. We are trying Pediatric Pedisure. I think it tastes horrible too, but it is a lot better than Elecare Jr. Nathaniel liked it. Today he ate a cup of Kix cereal and drank his g-tube dose calories worth of Pedisure for breakfast. He ate a banana and drank his full g-tube dose of Pedisure at lunch. No tube feeding was needed then either. Dinner: a peanut butter sandwich, a cup of pears, some chips, a cookie, and his full g-tube feed worth of Pedisure. Three meals. A full day. No g-tube feeds. Today, for the first time in three years of being Nathaniel's mom, I had a cord-free, machine-free baby.
I do not think Blaise rolled over again immediately the second day. Maybe not even the next. Nobody is worried. We know she can do it. We all know she will do it again. Just like Blaise, there is no pressure on Nathaniel to eat a full day of calories orally tomorrow. His MicKey button and feeding pump are here if he decides to wait awhile to show off his skill again. And if we find he has a reaction to cow's milk or he suddenly dislikes bananas and cookies, we will tweek the menu. If he never likes soup and salad or wants peanut butter sandwiches every meal for months, we will consider him a normal three year old. But Nathaniel can go a day without g-tube feeds. Milestone met.
Congratulations, son. This is huge and you are amazing. You have had to start and stop eating more times than anyone could consider fair, and yet you kept trying whenever given the chance. You contentedly sat at the table for years taking part in the social aspect of meal time and watching us eat, while not allowed to put anything in your mouth. Your fighting spirit was not seen in those moments by resisting and throwing tantrums and wanting to get down, but it was seen today as you quietly took one bite and one sip after the next. Good job, Nathaniel.
Next week we go for our first feeding team evaluation and therapy. I look forward to learning more about helping Nathaniel make this amazing transition.