OF COURSE that's how you do it, Dad

By Thomas Eric - Dad

Last year when Gabriel's doctor was recommending a gastrostomy so that Gabriel could receive food through a stomach tube, he was telling us the benefits: He'd get to go home from the hospital sooner, he wouldn't have to deal with a nasal-gastric tube down his throat, and he wouldn't develop oral aversion, which is when the baby says, "I hate having anything in my mouth because of this awful tube down my throat!"

Gabriel's performance on the bottle at that point was pretty bad -- only getting 30 percent of his food through the bottle or from breastfeeding, and the doctor said it was unlikely he'd pick up the pace any time soon.

But, I said to the doctor, "Other parents tell me that when they're trying to teach their child to do something correctly like put on their own pants or wash their hands, they'll nag and nag and nag the child and it'll never work, until one day the child just does it without being asked. The parents will want to know what caused them to finally make the change, but they won't get a meaningful answer. The child will just say, 'Of course that's how you do it, Dad. Everyone knows that.' Is there any chance some extra maturity could cause the "feeding switch" inside him to just flip and he'd get it?"

And the doctor laughed good-naturedly at my story and said that it probably wouldn't work. And he got the gastrostomy.

Over the past few days, though, he's gotten this eating thing. There appears to be some kind of switch that just flipped. He'll take one-quarter cup of full-fat Greek yogurt from the spoon without complaining, and he'll take a full bin of baby-food vegetable beef. Those two together equal about 100-125 calories, which is about one-third of what he needs for one meal.

Previously, it took a great deal of trickery to get him to open his mouth, and then he would begrudgingly accept a small amount of food (he'd gag on large amounts) and even then he'd let us know he'd had enough after five or six tiny spoonfuls.

We're very happy about this progress. But we're wondering what on earth made the difference. We'll probably never know. He seems to be saying, "Of course that's how you do it, Dad."

Silver Lining

We've been having a terrible time with keeping Gabriel healthy this fall/winter. It seems like as soon as he gets over one thing, a week later we're starting another round of respiratory and/or GI issues. The worst one was right around the beginning of November. Gabriel caught a cold and seemed to recover, but then a random cough set in. By the end of the week, we ended up taking him to the ER for labored breathing. He wasn't admitted, but with the ER's administration of albuterol and his pediatrician following up with another steroid and antibiotics, he finally kicked that infection. I have been so worried this year about RSV since we seem to be cycling through respiratory infections. Luckily, he was approved for a second year of Synagis (this doesn't happen often), so even if he does catch RSV, it probably won't land him in the hospital.
Anyway, so the respiratory thing he caught two weeks ago morphed into a GI upset where he was throwing up and had diarrhea. The only thing he was keeping down was chicken broth and pedialyte for a couple days. So, on the day where he was starting to keep down mild solids and small, slow feeds again, my husband decided to try offering the spoon. We knew he HAD to be hungry, because he hadn't been getting a lot of nutrition over the past few days. And it was magic. He took about 1-3 Tbsp. BY MOUTH at EACH of FOUR spoon tries that day. The next day or two, he wasn't that into spoon food again, but we knew it was in there somewhere. I discussed starting hunger trials with his SLP and we will put together the protocols after the Christmas break. However, I think Gabriel heard us talking, because the next day THIS happened (click to see video).
He has been doing this for four days now and it is kind of awesome. The best part is on Sunday, he took Communion on the first try with no avoidance behaviors whatsoever. Glory to God!

What do you feed a tube fed child?

We made a big push to get Gabriel off formula as soon as possible, and at one year adjusted age, we were given the green light. It was a great decision for him as it has increased his willingness to work on spoon-feeding and investigate foods, and it has made his reflux almost completely disappear. Most kids, you feed them what they'll eat, and they tell you when they're hungry and you do your best to make sure it's all nutritionally balanced. With Gabriel, he can't tell us he's hungry or when he's full, so he eats on a fairly strict schedule and we have a set number of calories prescribed by the dietician that we need to try to get into him every day. It can be an overwhelming task -- how much of each type of food do you need to give them? Do you need to track each type of calorie or is overall calories good enough? Is fat bad? Is sugar bad? What foods are allowed? Some kids need a specific diet to manage certain disorders, but Gabriel is okay for just a regular diet.

I started with the Choose Your Plate guidelines through the USDA. It's the new food pyramid. On their website, they have several diet plans that you can choose from based on age and calorie requirements. I use the 1000 calorie, 2-year-old plan which calls for 3 oz. of grains, 1 cup veggies, 1 cup fruits, 2 oz. meat/protein, 2 cups dairy, and 1 Tbsp oils. It also tells you sugar and sodium limits per day, but honestly, I don't track that. When they made this plan, they tell you to use 2% milk and limit fats -- according to the dietician, full fat anything is recommended for up to two years, so we look for foods that give us the highest calories per volume. At full recipe (including the nighttime feed), this yields 1313 calories per day. I try to give a variety of things and came up with this diet plan (this is the most recent incarnation, it's gone through many changes based on Gabriel's needs and tolerances):

Breakfast:
1/8 c. steel cut oats (cooked)
1/8 c. multigrain baby cereal
1/2 container (1.25 oz.) baby food prunes (for constipation management)
1/8 c. papaya (enzymatic foods are good for digestion)
1/4 c. mixed fruit (any variety)
1/3 c. whole milk
1/8 c. canned coconut milk
1/2 Tbsp. olive oil
1 Flintstones multivitamin

Lunch:
1/8 c. steel cut oats (cooked)
1/8 c. multigrain baby cereal
1/4 slice wheat bread
1/8 c. prune juice (more constipation management)
3 Tbsp. (3/16 c.) carrot or squash (low cal orange veggies)
1/4 c. peas (high cal green veggie)
1 Tbsp. avocado puree (just all around good for you!)
1/4 jar baby food meat (any variety)
1/4 egg
1/8 c. Trader Joe's full fat greek yogurt
1/6 c. whole milk
1/4 Tbsp. olive oil

Dinner:
1/8 c. steel cut oats (cooked)
1/8 c. multigrain baby cereal
1/4 slice wheat bread
1/8 c. prune juice
3 Tbsp. (3/16 c.) green beans, spinach, or broccoli (low cal green veggies)
1/4 c. yam (high cal orange veggie)
1 Tbsp. avocado puree
1/4 can salmon (2 oz. can)
1/4 egg
1/8 c. Trader Joe's full fat greek yogurt
1/6 c. whole milk
1/4 Tbsp. olive oil

Snack:
1/8 c. steel cut oats (cooked)
1/8 c. multigrain baby cereal
1/2 slice wheat bread
1/8 c. apple or pear juice
1/8 c. mixed fruit (any variety)
1/4 c. Trader Joe's full fat greek yogurt
1/3 c. whole milk

While we could mix this up daily, we don't due to time constraints and the fact that this recipe yields too much food per meal for him to handle at once. We find this out by tracking his throwing-up threshold. Trial and error can be messy. Anyway, we make up a quadruple batch of each meal at a time, and divide it into five containers, effectively giving us an 80% recipe. Since we use such high calorie items, he's still getting 1074 calories per day (including the nighttime feed below).

These four feeds don't quite make up everything he needs; we're still working on increasing his volume tolerance, so he also gets a nighttime bolus feed that is set at half the rate of daily feeds to make up the difference. I just recently moved some of the nighttime food over to his daily recipes, so here's where we are right now:

Night Feed:
1/4 c. Trader Joe's full fat greek yogurt
1/8 c. canned coconut milk

All our blends do tend to be a little bit too thick for the pump to handle, especially when they're fresh made, so we thin them out with a small amount of milk when we're ready to feed. This has the added benefit of increasing the calorie count and giving him more calcium. We usually freeze our blends once they're made and thaw them out the day before they're needed.

While tubefeeding is not ideal, and we hope to move beyond it someday, it does allow us to feed him quite a nutritious balance of foods every single day!

Observational Learning and Parallel Play

So, in the past two months since I've written about Gabriel, he has made quite a few advancements. We started him in a twice-weekly therapy playgroup where he has the opportunity to interact with other kids and observe how they play and eat. The first few times he went, he watched the other kids spoon-feeding very intently. He certainly had his "serious face" on. He really enjoys going to playgroup and while he doesn't actively play with the other kids (he's still a little young for that), he does participate in the group activities.

I think watching other kids has really contributed to some new behaviors. We just returned from a trip to visit my parents and my brother came out with his family as well. Cousin Heidi is one month younger (chronologically) than Gabriel, but she is 3 months ahead, developmentally speaking. She walks, has several words, and sits at the table like a little lady with her grown-up plate and silverware. We sat them down to play with each other, and after an initial "I look at you and you look at me" period, they did start playing side by side and sometimes playing together with the same toy. After several days of sitting at the table with Heidi, Gabriel had several good spoon-feeding sessions: he would open his mouth for food and also put his spoons in his bowl and then put them in his mouth. He continues to be more likely to investigate food and puts many more things in his mouth than he used to, which all seems to be in line with his current developmental stage of "self feeding", even though he doesn't quite have the skill set to successfully make that happen.

Once we returned home, he also started pulling up to standing on anything and everything. And since he can now reach his bookshelf, he likes to pull all the books off the shelf and even sits down to page through them. His new thing just this past week is restacking them on a different shelf. How organizational.

He is growing so fast, and every day is something new.