Bailey’s Story

Site created on May 17, 2018

Bailey has struggled with severe reflux, aspiration, and cows milk allergy since 2 weeks old. He has been on several different formulas, antacids, ppi's, formula thickeners but has always had difficulty with either allergies, intolerances, and just plain feeding. On Friday, May 11th, he had an episode in his car seat while driving where he could not breath and had turned purple. While I sat on the side of the road trying to get him to breath, an officer stopped to make sure he was ok. After a few minutes, he returned to his normal self and we continued on our way as it isn't uncommon for him to reflux formula up, choke and briefly aspirate, but this incident was scary. A few miles up the road I was pulled over by a different officer for speeding. This was our "sign" to stop trial and erroring all these feeding issues and bring Bailey straight to Childrens Emergency Room. 


Bailey has been at Childrens Hospital since Friday. He began not wanting to feed, as well as having obvious discomfort and pain while eating on Monday, the day we were planning on going home. The more volume he would take in, the worse he was. This resulted in him needing an NG feeding tube placed in his stomach to help keep him hydrated and nurished. However, he was still unable to tolerate very little volume (20ml) of formula, as well as pedialyte, so he was placed on IV fluids to help with dehydration. On Wednesday, the Gasteroenterologist decided to place an NJ feeding tube into his intestines, which goes through the stomach, duodenum, and into the small intestines, which would also mean we wouldnt have to worry about his reflux issue. Bailey was then started on pedialyte in hopes to get up to volume at 33ml per hour (1oz), and then switch to formula. 


Early Thursday morning Bailey showed us he was finally able to tolerate the volume, and proved he could tolerate the formula as well! Yay! The GI Dr seen Bailey this morning and has scheduled for him to go under general anesthesia for an endoscopy on Friday, and will also have ENT take a look at his throat to figure out what is going on inside Baileys small little tummy.


A few of the things they are looking for is a cleft on his vocal chords, ulcers, allergy cells, tight stomach muscles, as well as delayed gastric emptying, damage from reflux etc.


Though we dont know exactly what is wrong, we have been told it is a real possibility that Bailey could develope oral aversion because of the pain and discomfort of feeding, which could result in tubal dependancy and long term tube feeding. But that is the least of our worries right now.


Bailey has been such a trooper considering the rollercoaster he has been on since 2 weeks old. We are praying that tomorrow brings answers as well as solutions.

Newest Update

Journal entry by Danielle Frank

As some may know already, Bailey has been tube free for 7 days now, and bottle feeding better and better each day!! Like all things, practise makes perfect.

Last Thursday Bailey passed his swallow study by a hair. We tried bottle feeding that day with the tube still in. He still needed to be fed by tube with what he couldnt completly eat from the bottle. It had been about 6  weeks since he had a bottle so his muscles were working hard, as well as he had to learn it wouldnt hurt his belly anymore. Friday morning was the last time we had to supplement with the tube as he was steadily getting better with the bottle. Saturday morning we decided to pull his tube in hopes he would succeed even more without the irritation in his nose and throat, which was right! He continued to take the bottle in full and was not uncomfortable!! Yay!!!!

Since the tube has been out, Bailey has learn to hold his head by himself, find his feet, grab and hold toys, as well as ROLL OVER!! To see our little boy prevailing and with such positivity and happiness has truely been amazing! We are so blessed and overjoyed with his progress in only 1 weeks time.

Heres to hoping that this bump in the road is behind us, and that he will quickly grow out of his allergies, and stay a happy, healthy little boy!!

We cant say thank you enough for the prayers, messages, comments, and well wishes! 
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