Tuesday, May 29, 2012

Feeding Revolution

First:  Scarlett's MRI was clear!  Her brain is looking very good now that her shunt is adjusted, and she checks out well.  We changed her g-tube Mic-Key button for the first time, and it looks good, too.  We don't go back to see neuro-oncology for TWO months, three if we are feeling comfortable enough to wait that long.  All good!

Now...We have made a major change in Miss Scarlett's world.  It's huge, revolutionary for us, and yet so simple it seems silly to even talk about it.  


Real food!  No, she hasn't started swallowing more than a few bites.  However, we are getting real food into thanks to her g-tube and a frighteningly powerful new appliance.

If you've been following us for a while, you know the trials and tribulations of Scarlett's diet.  Before she was born, we said she would never have formula.  When she was born, she could not latch properly, and overzealous, under-trained postpartum nurses pressured us into giving her formula within a few hours (she did fine as soon as I saw a lactation consultant and got the appropriate assistance).  We struggled to learn to breastfeed for the first 2 months, then were forced onto formula when she was first hospitalized for the tumor and stress won over my milk supply.  Then, around 5 months old, chemo had her so sick, she could not keep anything down, so she got an NG tube (nose to stomach).  We kept trying to get her to eat, but slowly, she lost her feeding skills and was relying on the tube for the majority of her nutrition.  A year later, she was given a surgically-placed g-tube, through which we have been giving formula.  She enjoys eating a narrow selection of crackers, dried fruits and other dry snacks, but is not yet able to swallow liquids, and avoids cold things like the plague.  We have seen occupational therapists, feeding therapists, gastroenterologists, nutritionists and no one really knew what to do.  We have been trying to incorporate more oral motor exercise, encouraging her to chew, bite and mouth things, but very little has changed in the last year.  Recently, we began looking into intensive inpatient feeding therapy programs that might help her.

We have been resigned to the idea of formula for the last year.  With the hospitalizations and chemo, we just didn't have the energy to do much else.  Formula did the job, and was an easy enough solution to her diet.  When she got the g-tube, cans of Pediasure were provided by her insurance; cases are delivered to our doorstep - you can't beat that convenience.  It is considered complete nutrition, and is labeled as "medical food".  She could survive on Pediasure for years.

But that's it:  just surviving.  It's not thriving.  Her most elemental needs are met, but she is not making much progress.  She has gained almost no weight, and has not gotten much taller in 6 months; she still fits clothes she wore on her birthday in October, and her feet are smaller than average (just barely in an infant size 4).  The primary ingredient of Pediasure, corn maltodextrin, is mainly used in making candy; that just feels wrong, especially after a year of chemotherapy.  There are enough doctors involved to tell me that she is fine, that she is still on the growth curve (around the 5-10th percentile - the same as when she was born, but lower than 9 months ago.)  They all agree that she should "stay on the lean side" while she is trying to learn to crawl and walk.  They're the professionals - we do what they recommend.

Unfortunately, Pediasure is missing a major dietary need: fiber.  There is a special formulation that has it, but not in the cases of cans stacked under her crib.  We began adding fiber supplements to her feedings, but it was not really doing the trick.  We added laxatives, which helped, but were not a good permanent solution.  She was uncomfortable, and we were frustrated.

After surgery earlier this month, Scarlett was sick.  No one was sure why, since there were so many factors (anesthesia, pain medication, inter-cranial pressure) to blame. She threw up many times a day, and we had trouble keeping any fluids in her.  We tried a few different formulas, added nausea medications, more laxatives, and kept adjusting.  She finally stopped a few days after we got home, but I was done.  I had had enough of the smell of formula, especially formula that had been vomited up.  It is the worst smell ever, and I was tired of it.  I was ready to do something new.

A few days ago, I decided to try something.  I took some baby food and thinned it out with formula, then put it through the tube.  Scarlett didn't seem to notice any difference.  The next day, I did it again and by that evening, her digestive system had regulated itself with no additional medications or laxatives.  I knew I was on to something.

I started to investigate g-tube diets, and found a wealth of resources.  Blended diets are common for people who cannot swallow, and there is a lot of support available online.  The first few blogs I found discussed their reasons for changing over from formula, often after years, and I heard much of my own reasons in theirs.  Learned some of the basics of blending for g-tubes, resources for nutrition information, and tips for clog-free feeding.

There is no real limit to the foods that can be fed through a tube - fruit, vegetables, grains, nuts, yogurt, meats, pasta, even dessert.  Every mom and dietician has their own recipe they use to give tube-fed people complete nutrition, but the one thing they all agreed on was the need for a high speed blender.  We had a regular blender, but it has nothing on the VitaMix.  This monster is used in commercial kitchens and restaurants like Jamba Juice and Starbucks.  The price was not budget-friendly, but we felt strongly that this is what we need to do for Scarlett, so we found a refurbished model (complete with a full warranty and cook book) and bit the bullet.  It arrived two days later, and I have been a blending fool ever since.

Thanks to very impacted practices, we can't get in to see her GI doctor for a few weeks, so I am doing my best to match the nutritional value of Pediasure with real foods.  We have been using Nutrition Data to calculate what we've been making, but I keep thinking that other parents don't do this.  If your child eats normally, you don't calculate every meal's calories, protein, carbohydrates, fat and water.  You do the best you can to give them a wide variety, encourage them to eat more vegetables and watch over time to see that they are growing appropriately.  This is the approach I am taking until doctors (or Scarlett's system) tell me otherwise.  So far, I have been very adventurous with foods: sweet potato, avocado, spinach, pumpkin, pears, apples, tomatoes, banana, peaches, whole milk yogurt, coconut milk, peanut butter, strawberries, blueberries, oatmeal, quinoa, mango, black beans - anything we have around the house or that looked good a the store, I have blended (and most of these things she has tasted before, so I am not too worried about food allergies, though I am watching for that).  Every batch it a little different, and we are freezing containers to have on hand for the week.  The VitaMix pulverizes anything I give it, and makes it so smooth that it doesn't require any straining - it goes through the tubing without a problem.

It's too soon to see much change, but I am optimistic.  Other parents report seeing healthier skin, hair and nails after a few weeks.  Many with kids like Scarlett, who are medically safe to eat but don't have the oral motor skills, say they see improvement in a few months, and wean from the tube after a while.  The sensation of real food being digested (tasting in burps, etc. - gross, yes, but important) goes a long way toward encouraging normal eating.  Her occupational therapist was thrilled to hear we were going to try this.

This is the first time I have felt energized about Scarlett's diet...ever.  I can't wait to see how her body responds to whole nutrients and variety we are giving her.  It's a lot more work, more expensive and more time intensive, but so worth it.  I feel like I am feeding her again, rather than just administering "medical food". 


DiJe said...

Wow. That IS amazing! We have some minor oral motor issues in our house and I know the small thrill I get whenever a new bite is FINALLY taken; I can only imagine how happy you are right now! I'd be leaping off the couches clicking my heels, I think. ;P

Tiffany said...

That sounds like a great idea! I can just imagine how unappealing food would seem if she is used to digesting formula. I agree that parents don't normally research and calculate every step of a toddlers diet- so really, there is no reason you should have to. It's not like you are blending up french fries for breakfast, lunch and dinner. You are giving her a healthy diet of yummy foods, and the rest takes care of itself.

Colleen Tierney said...

I sort of feel like a stalker, but because my daughter has had a brain tumor as an infant i feel like I know you. Awesome news about the MRI! I think it is amazing that you are doing the blended diet!! When my daughter Chloe had her g tube, she had already begun eating, so we only tube fed her at night. I was just starting to research this when they said they wanted to stop the feeds and we never went back!! Good for you!! I added a scoop of probiotics to her feed before I mixed it to help regulate her digestion. That seemed to help. Parents know best :-)

Amy said...

This is so cool! I'm glad you're finding a solution that works for all of you. This obviously doesn't replace professional knowledge, but as a speech therapist I often worked with children who had feeding issues. Sometimes our Early Intervention (0-3 therapy, in case yours is called something different) would bring in a nutritionist to evaluate what a child was eating and make sure that all the nutritional bases were covered. They had a computer program to calculate it pretty easily. They told us that, as a rule of thumb, if a child is getting milk they pretty much cover all the bases. We had one child who would literally eat nothing but milk and oreos. It's obviously not a good diet, but it is one that will keep you going, chemically speaking! Maybe you can get access to somebody like this? But for now, for what it's worth, my experience says that you're doing a darn good job. And as a mom, there are definitely days when my kids eat a very limited diet!!!

Another thing I would love to mention....your situation would be a very interesting viewpoint on a website I love. It's called Fearless Formula Feeder, and it is a pro-breastfeeding blog that addresses the lack of support and medical expertise that leads mothers to formula feed, plus the psychological impact of having to use formula when you wanted to breastfeed. She does reader testimonials every Friday and I have gotten so much out of it after my low-supply breastfeeding issues.

Unknown said...

guys, this is seriously AWESOME. i've been following along with scarlett's story from the beginning--and this post is great. not only her clear MRI, but moving foward--embracing what is normal. you're feeding your baby...sure, maybe not exactly the same way as most parents, but you are feeding. your. baby.

Katherine said...

Just wanted to give you a long distance pat on the back for being an awesome Mom. Way to go Brandi! I think that it will definitely benefit Scarlett and I am so glad to hear that the MRI is clear.

debtfree4me said...

Hooray for clear MRI scans!!! I am so happy to hear that!!! Go Scarlett Go!

Brandi, you are an amazing mother.

Just the Tip said...

That's awesome. M who is now 15 months old is eating people foods (finally, I felt like it would never happen for her to not really have a "reason" that she wasn't good at eating) and we were on pediasure for about a week. She is in the <5th % She did not sleep well on it and I called a nutritionist who told me how much SUGAR was in the pediasure and I pulled the plug. So we are back to concentrating formula and loading her up on anything we can to help her gain weight. We may have found the missing link though (as she possibly has bilateral hypoplastic kidneys=failure to thrive)

What you are doing for Scarlett is amazing! It's obviously a lot harder than the pediasure at your door so kudos to you momma!!

Carrie said...

You may want to email patrice williams about her blended diet with her son jonah. If you google williams family blog it should come up, she has a little boy with epidermos bolasa, horrific skin disorder. He does not eat and require extra calories due to needed to heal wounds 24/7. She has been blending for over a year.

Mommy2CJ said...

Awesome news! Love that you are taking charge of her feedings! you are amazing. Great job mama. Our family is praying for Scarlett and your family.

Robin said...

Good for you! You are such a great mom to Scarlett. She is going to grow and thrive from what you are doing for her! She is lucky to have such a smart and loving mom...and dad too!
I'm so glad to hear the scan was clear and Scarlett is doing so well!
Praise God! Praying for you always!
Give that gorgeous girl a smooch from us!