Bradley’s Story

Bradley was born just under 3 months premature. Bradley at 3 days old.He weighed 1 pound, 14 oz at birth. At 2 weeks of age, Bradley was diagnosed with a congenital heart defect called Tetralogy of Fallot that would require open heart surgery. At the time of his diagnosis, he weighed 2 pounds.

Bradley was in the hospital for 165 days before coming home for the first time. He spent 8 of the first 11 months of his life in the hospital. He endured 6 surgeries, including 2 heart surgeries. He suffered a stroke after his first heart surgery.

Bradley has a sensory disorder called oral aversion.  The disorder in his case is so severe, he is unable to eat. Successful treatment takes a few years or more for cases like his.

To get nutrition, Bradley has a feeding tube in his tummy called a G-tube. Food goes through the g-tube and directly into his stomach. He is a tubie, and I am a tubie mama.

When Bradley was 6 months old, he weighed 7 pounds. Around this time, he began experiencing very severe reflux and nausea. He gained slowly but surely during this time and gained 5 pounds. But, the vomiting grew worse and worse until he stopped gaining weight. He weighed exactly 12 pounds, 14 ounces for over 3 months. Different feeding schedules, formulas, and medications were tried with no success. Medical tests were performed with no indication of anything being wrong.

For months, he spent the entire day every day sitting on the couch with me in the position that allowed him to keep at least a little formula in his tummy. He could not work on any of his physical or occupational therapy. On his first birthday, he was unable to even sit up on his own because the paralysis of nausea prevented him from doing anything that strengthened his muscles or developed his balance. He could not play. He could not nap. The refluxing and vomiting woke him up during day time naps.

He could only sit while a feeding pump fed 1 ounce of formula per hour into his tummy. In spite of the extremely slow feeding schedule, he projectile vomited repeatedly throughout the day. He screamed and cried. So did I.

I know, a crunchy mama that doesn’t breastfeed? Yeah, about that. I couldn’t. And many preemie mamas can’t. And yes, I was devastated.

Oh, and let’s talk about poop for a minute. Yes. Poop. Bradley was completely unable to poop on his own. He required a daily dose of Miralax. Even with that, he could not have a bowel movement without a daily suppository. In spite of daily Miralax and suppositories, he strained and strained and strained all day.

Finally, as a failure to thrive diagnosis loomed on the horizon, a nissen was performed. This is a surgical procedure during which a general surgeon wraps the top of the stomach around the bottom of the esophagus. When the stomach contracts to vomit, it squeezes the esophagus shut, keeping the food inside. It is an extreme and last resort with the possibility of a variety of complications.

Complications…Bradley had one. Twenty percent of babies that receive a nissen experience severe and chronic gagging and retching. Bradley was one of them. He gagged and retched. And gagged and retched. He was keeping his formula down. But, weight gain was almost non-existent. So many calories were being spent gagging and retching. He still could not play. He still could not participate in daily therapy exercises. He still could not nap.

I’ve cried. I’ve screamed. I’ve hurled a baby bottle across the apartment in rage, accidentally breaking a window in the process. A mama wants to feed her baby. And watch him play and grow. But, I couldn’t do that.

And then, a miracle happened. At least, that’s what it felt like. You see, tube fed babies are typically fed formula until the age they would’ve transitioned to real food if they ate orally. At that point, they are typically switched to Pediasure, or some other formula just like it.

You read that right. Pediasure. As in, absolutely nothing but Pediasure for their entire diet. Pediasure is nutritious you say? In a way, you have a point. It has all the essential vitamins and minerals. Of course, it has 0 phytonutrients, a daily portion contains as much sugar as 2 cans of Coke, and it has almost no fiber.

So, while feeding my son this highly artificial diet, in total despair, I Googled “reflux and vomiting in babies help.” And that is how the miracle began.

I found a blog about something called a blenderized diet. I read about a little tubie girl named Allie that vomited and vomited and vomited. Until her mom began to feed her real food through her feeding tube.

Real food through a feeding tube? What? You can do that?

To all my fellow tubie mamas out there, YES, YOU CAN FEED REAL FOOD THROUGH A G-TUBE! How? I explain how on the Blenderized Diet How-To page on this blog.

And this little girl that vomited and vomited all day had a super awesome mama that prepared real food for her. And the vomiting stopped.

I repeat. The vomiting stopped.

Oh. My. God. Could this work for my son? Why hadn’t I thought of this before???? What is wrong with me? I’m all about natural eating. How could I have been giving my son all these formulas and never even check the ingredients? I check the ingredients on everything! And I’m quite obsessive about what ingredients are allowed. I was told it was a great formula. It was superior. It was the best. And I just believed them? That’s so not like me. Gah! What did that ingredient list say, anyway?

Insert curse word here. The ingredients of Bradley’s formula? Corn syrup solids. Sugar. A bunch of vitamins. That was pretty much it. It was fortified corn syrup. I’m unsure who would tell a parent with an orally fed child to fill a cup with corn syrup, add some sugar, protein powder, and a daily vitamin and have their child drink it for every meal. But, they told me to feed this to my son? No. This was not going to continue.

And so I studied. And I learned. And then, I jumped in with both feet. OK, ok. No, I didn’t. I jumped in with one foot. The dietitian was so wary of this idea. She wanted the formula. Not food. She didn’t care about little tubie Allie and what her mama had to say. The formula is just as good, she said. A nurse told me it was even better than food. These were professionals with degrees and certifications. I may be crunchy, but I highly value education. These people knew so much more than me. How could I just ignore them completely? I was afraid to take him off the prescribed formula completely. So, I started feeding Bradley food through his tube during the day and then, I fed him formula through his pump overnight while he slept.

And something totally amazing happened.

Bradley's growth chart.
Bradley’s growth chart.

The constant gagging stopped. Like, right away. It stopped. Every day, I could feed him so much more at a time than I had the day before. Within a few weeks, he went from being fed 4 ounces of formula over 3 hours to being fed 10 ounces of real food in 20 minutes. My son was tolerating meals.  This was a big deal. I could push food through his tube as a meal and it would be over until the next meal.

This meant he could play. He could do therapy. He could nap. His development hadn’t progressed for 6 months. And suddenly, he began to make progress.

Something else interesting happened. He gagged at night. On the formula. This formula that was so super awesome. It made Bradley choke and gag throughout the night. Finally, one night, at 3 a.m., after being awoken by him gagging and crying for the 5th time, I declared out loud, “THAT’S IT! NEVER AGAIN!”

Bradley sitting on his own.

I quite dramatically disconnected his feeding pump, removed the bag of formula and thrust it into the trash can. Bradley has not had a single drop of formula since. Soon after, he got off night feeds completely. He eats during the day like other children his age.

And he’s thriving. His development continues to progress. He is getting stronger and stronger. His skin is vibrant and healthy (it had always been dry and prone to rashes before). He has crazy amounts of energy. He laughs and plays. He’s HAPPY. He’s not crying all day with terrible nausea. He’s spending his days playing and having fun and learning and doing all the things he should have been doing all along.

Wondering about the poop? He hasn’t needed a single dose of Miralax or a single suppository since his very first day on BD. He never strains anymore. It stopped the very first day on BD, and it has never returned.

Is feeding  going perfectly? No. He does get a little bit gaggy in the mornings these days, though I continue to make changes that are bringing improvement. He may gag a time or two during or just after a meal at times. But, after 5 minutes or so, his tummy settles, and he’s ready to get back to play time. Unless it’s lunch time. Then, his full tummy knocks him out, and he takes a nap.

His life has changed. My life has changed. Bradley went from being in the less than 1th percentile for weight to the 50th percentile. And from what? Food. Nothing but real, whole food.

Advertisements

6 thoughts on “Bradley’s Story

  1. I just came across your website and I’m in tears reading your story. Thank you so much for this. My son is almost 11 months old and vomits constantly. I’m so tired of hearing doctors say “well as long as he’s still gaining” and “reflux is really common” and “he’ll likely grow out of it”. I’m so ready to be done with formula. Thank you for being so relatable! I will be pushing for real foods to start soon with a vengeance.

    Like

    1. Hi Stacey!

      I was told the same thing. And that the formula couldn’t possibly be making things worse.

      Just be aware, you do not need anyone’s permission to feed your child food. You don’t need to push for real food with his medical team. Certainly tell them what you are doing, but no mother has to go to a doctor and ask permission to feed her child food. You don’t have to either. If you want to feed real food, you absolutely can without anyone’s permission. Please let me know if you have questions!

      Like

  2. I have been apart of the blenderized rn group for several months now. This is the first time I had read your story! It is so inspiring. My son too went through a similar experience and BD has also changed our lives! Thank you for sharing your experience and knowledge through your blog and the FB group.

    Like

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google+ photo

You are commenting using your Google+ account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

w

Connecting to %s