(If you haven't read "I've dealt with enough vomit to last a lifetime", please do...this is the continuation of that story.)
So Mike and I refused a radical surgery for Ava's vomiting and the doctor walked out of the room saying, "I can no longer help you." We were truly on our own. Ava was 8 months old, she just had a feeding tube placed, she couldn't hold any formula down, and we were sent home with NO medical support.
I'm sure that I cried on the way home, I'm sure I was angry, I KNOW I felt abandoned and completely alone. The medical community had "fired" us for not blindly following their "Godly" opinions. This was it. Ava was going to die a long slow death at home.
Every hospital would've tried to convince us to do a fundoplication. All the hospitals around us worked with the same group of doctors. They all knew each other and actively communicated. There was one independent pediatric GI in our area who wasn't affiliated with the major children's hospitals in the area. When Ava was younger, we tried to get into her and she refused to see us. She had heard about our case and felt it was too complicated and didn't want to deal with it. We had nowhere to turn.
I guess we could always go to the ER and they would stabilize her if we got into some sort of crisis, but we had no medical team helping us. Stabilizing her is one thing, getting some sort of resolution is another. We need to fix this vomiting issue. She can't survive if she can't keep anything down. How many times can we keep running to the ER to be stabilized? What is that degree of malnutrition going to do to her brain?
So Mike came up with a brilliant idea...let's put REAL food in her tube! Mike believed all along that the formula was the culprit. He wasn't sure if she had a dairy intolerance or if it was just plain old formula intolerance. Either way, he frequently told the doctors that we needed to stop using formula and start using real food.
"But formula is COMPLETE and BALANCED nutrition...you can't use real food," the doctors would say.
"But she keeps throwing it up!" Mike would respond.
"But it's COMPLETE and BALANCED!" the brilliant doctors would insist.
"But she's not keeping any of it down!" Mike would argue.
"Well...after she throws-up, put more in!" said the doctors.
It just didn't make sense...I don't think it made sense to the doctors either, but that's what they were taught. If you're not using breast milk, your only option is formula. If you don't tolerate a certain formula, try another one. Don't tolerate that one either? Try another one. How about one that's already digested? No? Try another brand! Hundreds and hundreds of dollars later, and the child still is vomiting. And if you're on a feeding tube, your only option is a man-made canned formula with water being the only natural ingredient.
We'd had it! Mike decided to give Ava baby food peas through her tube. I think we watered it down with a little water to make sure it went through smoothly.
It stayed down!
We tried sweet potatoes at the next meal, and...
It stayed down!
We tried a little bit of formula at the next feeding, and...
It came up!
This wasn't rocket science...we had cold-hard PROOF! She doesn't tolerate the man-made garbage that the medical community keeps passing off as complete nutrition.
We decided that very day to take her off of formula altogether. She was 8 months old. We also started using cow and goat milk as our base for her feedings.
Shortly after seeing the results, we sat down after the girls went to bed. I gathered all of my books together and designed her formula. I figured out each nutrient she needed and the amount she needed. From there, I found an appropriate food to fill as many nutrients as possible. The top contenders were:
Those seemed to be the real powerhouses as far as nutrition. From there, I just kept filling in foods and adjusting quantities until all of the nutrients were met. By the time I was done, it was 20 ingredients long and included things like sardines and goat milk as well as various fruits, veggies, and nuts.
I would make this new formula every 2 days, and it would take me about an hour. I didn't have a good blender, so I would use my food processor and make it in batches. I would then strain everything and combine it all in the end. I tried making bigger batches and freezing it, but the thawed formula just wasn't that good. It changed the texture and I'm sure the freeze/thaw process altered the nutrient profile as well.
The first full day of this formula resulted in NO vomiting...not even a little spitting up. During the first few days of starting the real food formula, Ava began to crawl. Within a week, she started sprouting her teeth. She became vibrant and alive. She started sleeping less and became more interested in life around her. And she slowly started gaining weight.
We'd done it!!!!! Completely against EVERYTHING the doctors told us to do. She was living proof. We saved her life! The formula was killing her and the doctors insisted we keep shoving the poison down her tube! Had we blindly followed them, Ava would be severely impaired...or dead. We were able to supply INSANELY good nutrition through all of the critical brain growth and development.
She is still on a whole food diet. It has been tweaked and modified a lot over the last 18 months. I've worked to make it a little easier for me (selfish...maybe...). I make about 36 hours worth of feedings in about 10-15 minutes. I have better equipment and have kind of perfected my formula making technique over time. I have learned what foods blend easily and what doesn't. I've figured out her tolerances and what doesn't sit in her stomach well. I know how fast I can feed her and how much volume she can handle.
Now that she's older, it's more of a base formula with about 4-5 ingredients and then a "what do I have in the refrigerator" added in. Her diet is more balanced over a weeks time instead of at every meal. I loosened my obsession with making every meal PERFECT, and just included good healthy foods without counting every calorie or nutrient. As long as I throw in some high calorie foods with every blend, I don't worry too much about it.
We continue to watch her thrive, grow, and develop. She's insanely smart! The kind of smart where you sleep with one eye open. She's a normal toddler, only she eats WAY better than any toddler I know. She's active and happy, loves life, and seems to appreciate the little things. It's as if she knows that according to the laws of nature, she shouldn't be alive.
We still do all of this without the approval of her doctors...although they can't deny how great she's doing. It's no matter to us, we KNOW we're doing the right thing...Ava is our proof!
This is how much Ava ate of her breakfast...I think it was 1/2 a bite.