Monday, August 25, 2014

Blended Diet recipes

This is just a little update on the types of things we feed Elsie through her gtube. I feel like I've settled into the BD groove since starting out in February, and feel pretty comfortable and confident with the foods she gets. I've definitely learned a lot, through trial and error, and things have been going really well lately.

Since we discontinued her night time feeds, Elsie is able to tolerate a much higher volume of food than she used to. We also learned that if we give her breaks between ounces, then this also helps her tolerate more food. For example, at each meal, we feed her four ounces, give her a ten minute break, feed two more ounces, give another ten minute break, and then feed the last two ounces. She currently gets a total of eight ounces for each meal, which is huge compared to the five ounces that she used to get a few months ago. We have very little unexplained vomit now, which we used to have lots of problems with. Now, Elsie throws up for very specific reasons: she has gagged/choked on something, or she is crying too hard, or even sometimes when she laughs too hard. That's about it. It's really nice to know the reasons for her vomiting, instead of the "I have no idea why she puked", which used to happen so often and was so frustrating.

Anyway, I wanted to post some of the recipes that I use to feed Elsie. I try to go off of the guidelines on the "Choose my Plate" website as far as keeping her diet balanced. Of course, nobody's diet is perfect everyday, whether you are orally fed or tube fed, but we all try our best.

For Elsie's breakfasts, I made a "porridge" in my crock pot. I put in 1/2 cup ten grain cereal mix, 1/2 cup quinoa, 4 cups water, and 1 cup canned coconut milk. It cooks on low for 5-6 hours or until everything is soft and mushy and well-cooked. The coconut milk adds lots of great calories. I usually add some cinnamon, nutmeg, ginger, and ground cloves, just to make it smell nice, and because I can. Once it is cooked and cooled down, I blend the porridge in my Blendtec until it is smooth, and then freeze it in individual portions. Each morning, I mix together 4 oz of breakfast porridge with 2 oz mixed blended fruit, 2 oz milk, a liquid multi-vitamin, and a tablespoon of olive oil for essential fat and extra calories. Sometimes I'll add some yogurt. Some of the fruits I have used in her mixed fruits include but are not limited to: apricots, peaches, pears, apples, pineapple, kiwi, avocado, blueberries, strawberries, blackberries, raspberries, watermelon, cantaloupe, and mango. Pretty typical breakfast of cereal, fruit, and milk, huh?

For lunches and dinners, I make a "whole blend", which to me, means that it's a mixture of many foods which, when blended together make a nutritionally complete diet. It's kind of gross to some people when they see the things we have blended together, and I wouldn't recommend eating her food orally because they are unlikely food combinations, but it works for tubefeeding. For example, this is the "whole blend" that I made today:

1 cup milk
1 cup whole fat Greek yogurt
1/2 cup rolled oats
1 cup Honey Bunches of Oats with Almonds cereal
1 cup peaches canned in heavy syrup
1 cup spinach
1/2 cup frozen peas
1/2 cup summer squash, sauteed in butter, salt, and herbs
2.5 oz cooked ground beef
1 oz walnuts

So yeah, it smells kinda funky and looks ... unappetizing, but like I said, it works for tubefeeding. And it includes all of the recommended amounts on the government's website.

I generally use the same basic recipe for Elsie's whole blends, but rotate the foods that I use so that she gets a variety of foods in her diet. So a whole blend that I made a few days ago contains the same amount of milk and yogurt, but chicken instead of beef, and brown rice and multigrain bread instead of oats and cereal. The fruits and vegetables are also rotated. We've been using lots of squash and zucchini and apricots lately, as that is what has been bountiful in our family's gardens this summer, but also enjoy using sweet potatoes, carrots, green beans, swiss chard, bell peppers, collard greens (stinky but very nutritious), and frozen vegetable mixes, just to name a few. I add a few ounces of seeds or nuts to each blend to add nutritious fats and calories, such as sunflower seeds, pumpkin seeds, almonds, walnuts, cashews, and peanuts.

When we have a surplus of veggies or fruits that somebody has so kindly given to us, I freeze or preserve it to save for later. I have cooked and mashed up extra veggies, and then I freeze it in ice cube trays or in small size plastic containers. I froze apricot halves as well as pureed apricots in ice cube trays, and also preserved apricot puree in bottles. I'm definitely loving this summer's harvests and looking forward to more harvesting throughout the fall; I can't wait to get my hands on some fresh peaches and pears to freeze and preserve, as well as the apples growing on my trees outside. If anyone has an abundance of produce that they are wanting to share, we'd love to have some!

Before I go to bed each night, I give Elsie 4 ounces of fortified breast milk. I stopped pumping breast milk about a month ago, but have enough saved in my deep freeze to be able to feed it to her for several more months. We have also found that, while Elsie is not lactose intolerant, she does a lot better with goat milk than cow milk. Cow's milk made her constipated and seemed to aggravate her eczema. Goat milk is the closest in composition  to human breast milk, and is so much easier for little tummies to digest. It's also the most comparable to whole cow's milk in terms of fat and calories; cow milk alternatives like almond milk or soy milk generally have very low calories and are low-fat. I'm not anti-cow milk by any means, but Elsie has been doing great on goat's milk, so we will continue to use it as the base liquid for her blends.

Anyway, thanks for listening to my food rambles. I so enjoy making wholesome food to feed Elsie and thinking of new ingredients to add to her blends. It helps me to feel more like a typical mom who cooks for her family, which might seem kinda silly to you, but as the mother of a tube-fed child, anything that makes us feel more "normal" is a good thing.

Monday, August 18, 2014

Sensory play

As you know, Elsie has an issue with food. She doesn't like it, trust it, or enjoy it, for the most part. She especially doesn't care for foods that are wet or squishy, etc. Lots of times when I offer her food, she will give it the "squish test": she grabs the food item and squishes it between her fingers. If it crumbles or squishes or otherwise breaks up, she generally won't eat it. This applies to things like soft fruits, pudding, jello, or other wet foods. It's a sensory thing; she doesn't like the feel of wet and squishy things. And if she doesn't like the feel of it in her fingers, you can guarantee she's not going to put it in her mouth.

In an attempt to help her overcome her dislike of wet foods, we often engage Elsie in sensory food play with wet foods; where the emphasis is not for her to eat the food, but to play with it and be comfortable touching it. Here's what we did the other day:

I took some applesauce and used food coloring to make it several different colors. Then I took Elsie and Evje, took off their clothes, and plopped them in the bath tub with the applesauce, some spoons, forks, measuring cups, and bowls.

Evje thought it was awesome, and dug right in. Elsie was a bit more hesitant. I was hoping that watching Evje play with the applesauce would encourage Elsie to be more interested in playing. We put different colors of applesauce together in bowls, did some finger painting on the walls of the tub, and did some body painting. Evs seriously thought this was the funnest thing ever. Elsie...not so much. After the first few minutes, she cried a lot and wanted nothing to do with the evil applesauce, much less have her sister smear it all over her leg. So I'll be honest, it was a bit of a fail as far as getting Elsie comfortable or willing to touch the wet applesauce, but it was worth a try. Her food aversions aren't going to be changed overnight, so we'll just keep trying. And it kept Evje entertained for a good 20 minutes. Messes are good to make, sometimes.

Thursday, August 7, 2014

19 months!

Well hi there! Whatdya know, Elsie is 19 months old! Here's what has been going on:

  • She's totally walking!!!! Remember how I've been saying for months and months and months that she was so so so close to walking and would start any minute? Well, she finally did. Seriously, it was thrilling to watch her learn. So proud of my baby!
  • Got her fourth tooth! Two on top, two on bottom. Cute little jack-o-lantern smile!
  • Went on her first family road trip. We drove from Utah to Colorado Springs for a family reunion, and Elsie was fantastic. She only threw up in the car once, when she was crying that Evje and I got out of the car for a (false alarm) potty break and Elsie had to stay in the car with Daddy. She spent a lot of time sleeping, which is always awesome, or playing with toys, or teasing her sister. We loved being able to introduce her to our extended family, most of whom have never seen Elsie before. One of our cousins just got a feeding tube, so it was great to not be the only tubie family, and to be able to talk "tubie" with someone who gets it.
  • Speaking of the road trip, you might be wondering how we fed Elsie whilst traveling. Instead of trying to keep Elsie's food frozen for five days in a cooler, or dealing with thawing her frozen food while trying to feed on the road, or even bringing our Blendtec blender with us, ha ha, we decided to go with simple. There is a company created by the mom of a tubie called Real Food Blends. It is commercially packaged, blended real food in shelf-stable pouches. We ordered a case of the Real Food Blends and had it shipped to the hotel where we were staying, so the food was already there when we arrived. For any tubie families looking for something easy to feed while traveling, or to have on hand in case of emergencies or power outages or the zombie apocalypse, I would highly recommend Real Food Blends. It was so simple. We were out and about on various activities for the reunion, so I threw a pouch or two into the diaper bag with a syringe, and we were good to go. No cooler, no ice packs, no microwave needed to warm the food up to make it smooth. It was ready to feed right out of the package. And the ingredients are incredible. So far, there are three varieties of blends that you can purchase, and each pouch has only five or six ingredients. Nothing processed or artificially added. Just food. Anyway, this isn't a paid endorsement, but I totally want to buy a bunch of the Real Food Blends to have on hand as Elsie's food storage. What a great Christmas present that would be for someone to get for us, hint hint!
  • Since she started walking, Elsie has gained so much more confidence and is more comfortable around strangers. It's sooo nice to not have to sneak out of a room and hope that she doesn't notice me leaving, which would make her cry, which would make her vomit. She's much more adventurous and even walks up to total strangers. Who would have thought?
  • Elsie's physical therapy has taken a very fun turn this month. Since she is in the Early Intervention program, we were able to get into a mom & tot class at a local gymnastics center for free, and that is our "physical therapy". Once a week, we go to the "Baby Gym" class, where we do various obstacle courses and different activities that involve climbing, walking on a balance beam, jumping, hanging from a bar, crawling through tunnels, and so much more. All are great activities to help Elsie improve her balance and motor skills.
  • I don't know if I mentioned this on the blog or not, but a few months ago, we discontinued Elsie's continuous nighttime feedings. Nighttime feedings, while necessary for lots of tubies to get essential calories, and not a bad thing, are not ideal. For one, it's just not natural to be fed all night long. Your gut needs to rest, and some tubies have a hard time tolerating night feeds for this reason. Second, it's a pain in the neck. It wasn't too bad when Elsie was a small baby because she didn't move around much while sleeping, but older babies and children move a LOT while sleeping, which leads to tubes being disconnected from feeding sets, or tubes being pulled all the way out of the stomach, or cords from the feeding set getting wrapped around your child's neck while sleeping. There's also the hassle of the feeding pump's alarm going off in the middle of the night because of a kink or a clog. Or when you forget to plug in the battery pack to charge the battery, and the dead battery alarm lets off its horribly loud shriek in the middle of the night. Or when your kid has a cold and spends the whole night puking because their stomach is never empty. Or when the tube gets pulled away from the feeding set and you end up "feeding the bed" all night long and have a soggy mattress. Not good. Anyway, our feeding therapist recommended that we try weaning off of night feeds in an attempt to see if that would wake up Elsie's appetite and get her to eat orally. So we started a slow wean, but after a few weeks, I had a horrible night of the pump not working right and then feeding the bed when I finally fixed the pump's problem, which led me to say "To heck with you!" and threw the feeding pump into the closet. And we haven't used it since! It hasn't really made a huge difference in Elsie's oral eating, but she is able to tolerate a much larger amount in her tube feedings since she isn't so full from being fed all night, so we are able to give her enough calories throughout the day. Hooray for no more night feeds!!
  • We had Elsie's 18 month check up this morning (a month late, yes, but better late than never) with our pediatrician. He is very pleased with Elsie's growth and development, and says that she's really not very far behind from where her same age peers are. She is small for her age, but so is Evje, so that's nothing new. Her weight is following its own curve, which is good, and is just slightly under the curve for her actual age. Her height made a huge jump in the last few months, and is just about the 10th percentile for her actual age. So proud of my little munchkin!
  • I'm sure there's more I wanted to share, but we had a sleepless night last night due to some unfortunate circumstance involving Evje and a stomach bug, and I'm feeling a bit sleepy. Both girls are currently napping, so I'm going to sign off the computer and, in Evje's words, "take a little rest." And I apologize, I don't have a single new picture to show off! I better get busy and take some pictures, if I can ever get Elsie to hold still. Happy 19 months, sweet little Elsie!