Our New Way of Eating

It has been 10 weeks since Ellie was in the hospital for g-tube placement. Things are going as expected and unexpected. I hardly know where to begin....

 The Supplies

Rite Wright-Aid

Less than a 1 month supply!!! Crazy

Our Joey Pump

The G-tube site...

The site itself has been pretty uneventful. It doesn't seem to bother her too much. The "button," also know as a "Mini ONE Button,"looks like the picture on the left. The round apple shape on the button is the balloon that is filled with water to keep it from coming out. To feed her, you just use the attachment shown on the right as a key to lock into the tube. The whole system is removable and is changed every couple of months including the button itself.

We are beginning to see lots of granulation tissue forming around the "button" (under the gauze). For that, there are many different techniques and lotions that are used but none of them seem to work for everyone. The most common form of treatment for granulation tissue seems to be "silver nitrate sticks" that burns off the tissue. They look like long matches that you touch to the skin. I have read such conflicting reports about this being painful but effective. Ellie has had one treatment and didn't seem to notice it (THANK GOODNESS). The trick is using Vaseline to protect the skin around the granulation tissue to keep it from getting burned. The doctors have prescribed the sticks and lidocaine so that I can start treating this at home. The overabundance of granulation tissue is starting to change the position of the tube and to avoid having it surgically removed I need to treat this daily. It is always so scary being trusted to do something new. I am praying that I become proficient quickly!!!

Transitioning

Nutrition has always been so important to me in regards to my children. So working out what I was going to feed Ellie was easy...it was how exactly I was going to transition over that was difficult. 

There are a few different ways to administer a meal. First, you have a pump that slowly delivers food over a selected period of time. Second, the syringe method, also known as a bolus feed requires you to sit there and inject in the food. Lastly, is a gravity feed where you hang the syringe above the g-tube site and allow gravity to push the food inside her belly.

For us, I chose to do a bolus feed. The pump does not allow for a blended diet because of the consistency of the meal and I didn't like the lack of control that the gravity method offered. I thought this to be the best choice but I still really didn't like it. How much would she take? How often? What if she is full or having an off day? How fast do I push it in?  Even though this gave me more control, it took away all of hers. This really REALLY bothers me. All the nurses I spoke with would advise me that if she throws up we know its too much so it really just has to be trial and error. WHAT? Is that really the only way? So full that she pukes? So I took it slow...

And then that's when nutrition stepped in.

My plan was to start her on the homemade formula I had been using and then slowly adding one new food every couple of days to that mixture so I could see how she did with the new food. This is how it is always done with infants beginning solids and this way felt more natural than going full force. Unfortunately, that's when the pressure hit that by doing this I was running the risk of malnutrition. The dietician wanted to see her tolerating 5+oz per feed 5-6 times daily with a full meal, not just one new food. My baby, who when I originally started documenting her food intake a few months ago, was taking in around 450 ml per day is now being told to take in a minimum of 740ml (optimal is 1080ml) of never before eaten foods almost overnight!!!So I had to figure out a way to make this delicate balance of malnutrition/overfeeding/puking/introducing new foods while-she-just-got-out-of-surgery-and-probably-wants-nothing-to-do-with-food WORK!

Ellie's Feeding Chart 

She threw up twice and I hated that. She had no way of telling me and both times I didn't see any signs that it was becoming too much for her sweet little belly. I had to figure out a way that would allow her to communicate that it was too much, so I decided to try something new. I would breast feed her while feeding her through the g-tube. That way when she would pull off the breast I would know that she was full. This method allowed her to comfortably build up a tolerance. She is currently taking in 5oz (150ml) per feeding..

The Recipes

Organic - Vegan - Gluten Free - Large Portion of Raw Foods

I taste each recipe I prepare for Ellie. They all taste like grass. I was really nervous about the process of preparing her food. I was afraid that I would feel overwhelmed. To my surprise, it really doesn't take me long at all. I make a full blender's worth and portion it out into the Lansinoh breast milk storage bags that are freezer safe. This way I can pull out 4 different meals per day, all from different recipes, improving the variety of nutrients that she is exposed to daily.

A Handful of Recipes

*Barley is not gluten free, my mistake, we no longer use it!

Growth 

We have seen some positive changes in her linear growth. She has grown an inch in 10 weeks! The last inch she grew took her a year. So I am very happy to see that. Her weight has dropped since surgery but when you take out all that oil we were using in her formula just to get her up to a safe operating weight and add nutrient dense foods, such as kale and lentils, plus throw in a week of being sick and recuperating from surgery...I can't say I am too worried at this point. Plus, Ellie is who she is and I don't want to "fix" her. I just want to provide her with optimal nutrients to allow her body to function at its best....whatever size she chooses to be.

The Sensory

I did not think this would be the most difficult part. I thought for sure the sensation of going from hungry to full by means of someone injecting it into your tummy would be a different sensation than originally known, but I did not fully anticipate the 24/7 shock to her body and how it would affect her ability to function. When Ellie has too much sensory input she has what we call "episodes." In these episodes she just shuts down for lack of a better explanation. Her tongue hangs out, her face glazes over, tears will stream down her face with a crying expression but with no sound (she will eventually scream) while her head and eyes go in opposite directions. For these first six weeks, I would say about 75% of feeds would initiate an episode. Sometimes it would last hours before she would snap out of it and then by that time she was due for the next feeding.

These episodes have also made it exceedingly difficult to work on oral feeding. When I first started feeding her the blended meals I tried to put the same food on her tray so she would associate the look and smell of the food with feeling full. That was simply too much. For several weeks following, Ellie would not go in the high chair without screaming. So with the help of our OT Sheila, we moved the highchair into another room with nothing but toys on her tray. Thank goodness that has worked and she will now tolerate toys on her highchair during meal times. Sometimes it is still too much for her to be around food when we are all eating as a family so we move her onto the couch to play. This bothers me so much. It is one thing if she won't eat but is still a part of mealtime, but when she can't even be near us eating that makes me upset. I always worry that she doesn't feel like a part of the family.

WATER

Ellie's diet consisted of alot of fiber, probiotics, high doses of vitamin D and magnesium. Even with all that she would still cry, scream and bleed from the severe constipation. I knew she needed more water but wasn't sure how much and when we would fit it in. She was taking in food every 3 hours throughout the day and sensory-wise she was not handling it well. I felt perplexed. I realized the huge importance of the water but I already felt like I was pushing her to the limit as it was. So we decided to set up the pump to do a continuous water drip throughout the night. I liked this idea because it didn't seem to bother her sensory system. She sleeps right through it. But I was worried about the cords in her bed. So we run the cords down her leg and got a video monitor to ease my nervousness. It is kind of fun watching her in there too. 

Smiling in the dark

Helping Hands

Both Jessica and Mathew are very interested in Ellie's new way of eating. Mathew is still trying to figure out how he can help so we put him in charge of getting Ellie toys for her tray while she is eating. 

 Jessica is very anxious to share the news about her baby sisters' new "system" wherever we go. She politely explains that her sister is very special because she has this "system" and needs it to keep her from shrinking. :)

 We are so blessed to have the children that we do who are so loving and compassionate with their baby sister. I love all three of my babies so much!

Playing at Discovery Village 

                *A side note that is too important to not mention. Even though the "art of feeding" is a challenge, Ellie and I are so blessed to have such a fantastic team. Our feeding team including our amazing GI doctor, hardworking dietician, wonderful occupational therapist and renowned feeding therapist are all such amazing people who really go the extra mile.