Little Liam was no stranger to feeding tubes. In his short 4 years, 5 months and 1 day, he had many different types of feeding tubes. In fact his feeding tube journey started when he was in NICU.
Here's Liam with an NG feeding tube. The reason it was through his mouth and not his nose was because of the nasal cannula. The NG tube was short lived because he soon learnt how to eat by mouth.
Liam quickly mastered bottle feeding and was tube free when he was discharged from NICU at 48 days old.
Liam seemed to adjust well to being home. He enjoyed being held and rocking in the swing. He was fed on a strict schedule around the clock. He was gaining weight and happy.
Then one day he just started eating less until he practically stopped all together. It became impossible to wake him to feed and made keeping up with his strict feeding schedule impossible. Liam stopped gaining weight and started losing it. When we returned to UCSF for a CDH clinic we were told that he was now considered failure to thrive and we had no choice but to admit him for a feeding tube.
The NG tube was Liam's first feeding tube post NICU. We had to learn to put in the tube correctly and to feed him through it. His new feeding schedule would be to feed via bottle during the day, only tubing what he couldn't finish by mouth and tube feed all night feeds. This was supposed to allow him to rest and build up strength so that we could eventually take the tube out. What should have been a 2-4 day stay at the hospital turned into 14 days. They refused to release Liam until he started gaining weight again.
But we were finally released and happy to be home again. However home didn't last long. After only 2 days back home, we had to rush Liam to Valley Children's hospital ER. He wasn't tolerating feeds, vomiting profusely and having difficulty breathing. It was a long wait to figure out what was wrong. At first they thought he had a virus but soon realized it wasn't. They diagnosed him with severe GERD and said he needed a Nissen Fundoplication and a G-tube.
This stay took 4 weeks. After the G-tube came the formula changes. He just wasn't tolerating any of them. Finally they decided it was time for a different tube and changed it to a GJ-tube.
The GJ would allow his feeds to skip his stomach all together and go straight to his intestines. Things didn't get any easier though. We went through so many ups and downs. Liam would start vomiting randomly and no one could figure out why. The vomiting would cause pneumonia and result to a hospital stay. This kept on for more than a year.
In July 2012 his GJ-tube came out and we had to place a G-tube to keep his stoma open until they could get him into the ER. He did so well on the G-tube that they canceled the surgery to replace the GJ. On the 5th day of using his G-tube he start vomiting again. No one knew why. Liam ended up with pneumonia and hospitalized again. The doctors decided the best course of action was to place the GJ back. After more vomiting and intolerance issues and nearly a year later they finally figured out what was causing all these problems. It was one of those off chance situations, a stroke of luck really.
A team of surgeons had sat in a board room together trying to figure out what the problem was. Then the idea struck our main surgeon. She had only seen it one time before but it explained everything and in Mat 2013 the mystery was solved. It was a problem that had stumped everyone for 2 years. It was a miracle and a HUGE shock to us all. The ballon in the Mic-Key brand feeding tubes were the cause. They were to big for Liam's stomach and his feeding tube was places so low into his stomach that the balloon would move at random, hitting the muscle that connected his stomach and intestines and caused the random vomiting. And because it filled his stomach he was never hungry so he would never eat by mouth.
They took his Mic-Key out and replaced it with a balloonless AMT mini G-tube. It was a miracle. Within 20 minutes he felt hungry and he wanted to eat everything in sight. For the first time in his life I watched in amazement as he ate. We started with small tastes of foods every meal then quickly moving to bites because he wouldn't wait.
Once Liam got the AMT he began to thrive. We watched as he made huge strides. In June of 2013 he started walking. Then came running, growing, thriving. It didn't cure all medical issues but it changed everything. It saved my son from starving.
Even though Liam started eating by mouth, he couldn't consume the calories content his little body needed. Because it took so much more energy for him to just breathe due to his comprimised lungs, his body required much more than a healthy child his age or even size.
This is why he grew at such a slow rate. At 4 years old he could still use his baby high chair. He could still wear size 6-9 month shorts. He had to wear overalls most of the time because pants that were the length he needed were too large in the waist.
We taught Liam to be proud of his feeding tube. We never wanted him to be ashamed of it or his scars. As a result he would show off his "button" to everyone. He would pull up his shirt and say "My button. My belly button" and laugh. I wondered if he was searching for others with a button like him as well but it was clear he was comfortable with who he was.
Liam's feeding tube journey taught me that it doesn't matter how a baby gets fed, what's important is that they get fed.
#feedingtubeawareness #tubie #iloveatubie #failuretothrive #cdhawareness
August 2011
Here's Liam with an NG feeding tube. The reason it was through his mouth and not his nose was because of the nasal cannula. The NG tube was short lived because he soon learnt how to eat by mouth.
August 2011
Liam quickly mastered bottle feeding and was tube free when he was discharged from NICU at 48 days old.
August 2011, Last night in the NICU
Liam seemed to adjust well to being home. He enjoyed being held and rocking in the swing. He was fed on a strict schedule around the clock. He was gaining weight and happy.
August 2011, A month and a half old
Then one day he just started eating less until he practically stopped all together. It became impossible to wake him to feed and made keeping up with his strict feeding schedule impossible. Liam stopped gaining weight and started losing it. When we returned to UCSF for a CDH clinic we were told that he was now considered failure to thrive and we had no choice but to admit him for a feeding tube.
I made Liam's heart patch figuring if it had to be there it might as well look good.
The NG tube was Liam's first feeding tube post NICU. We had to learn to put in the tube correctly and to feed him through it. His new feeding schedule would be to feed via bottle during the day, only tubing what he couldn't finish by mouth and tube feed all night feeds. This was supposed to allow him to rest and build up strength so that we could eventually take the tube out. What should have been a 2-4 day stay at the hospital turned into 14 days. They refused to release Liam until he started gaining weight again.
On our way home from UCSF
But we were finally released and happy to be home again. However home didn't last long. After only 2 days back home, we had to rush Liam to Valley Children's hospital ER. He wasn't tolerating feeds, vomiting profusely and having difficulty breathing. It was a long wait to figure out what was wrong. At first they thought he had a virus but soon realized it wasn't. They diagnosed him with severe GERD and said he needed a Nissen Fundoplication and a G-tube.
October 2011 after G-Tube surgery
This stay took 4 weeks. After the G-tube came the formula changes. He just wasn't tolerating any of them. Finally they decided it was time for a different tube and changed it to a GJ-tube.
March 2011 with his GJ-Tube
The GJ would allow his feeds to skip his stomach all together and go straight to his intestines. Things didn't get any easier though. We went through so many ups and downs. Liam would start vomiting randomly and no one could figure out why. The vomiting would cause pneumonia and result to a hospital stay. This kept on for more than a year.
November 13th 2014
In July 2012 his GJ-tube came out and we had to place a G-tube to keep his stoma open until they could get him into the ER. He did so well on the G-tube that they canceled the surgery to replace the GJ. On the 5th day of using his G-tube he start vomiting again. No one knew why. Liam ended up with pneumonia and hospitalized again. The doctors decided the best course of action was to place the GJ back. After more vomiting and intolerance issues and nearly a year later they finally figured out what was causing all these problems. It was one of those off chance situations, a stroke of luck really.
May 2013
A team of surgeons had sat in a board room together trying to figure out what the problem was. Then the idea struck our main surgeon. She had only seen it one time before but it explained everything and in Mat 2013 the mystery was solved. It was a problem that had stumped everyone for 2 years. It was a miracle and a HUGE shock to us all. The ballon in the Mic-Key brand feeding tubes were the cause. They were to big for Liam's stomach and his feeding tube was places so low into his stomach that the balloon would move at random, hitting the muscle that connected his stomach and intestines and caused the random vomiting. And because it filled his stomach he was never hungry so he would never eat by mouth.
They took his Mic-Key out and replaced it with a balloonless AMT mini G-tube. It was a miracle. Within 20 minutes he felt hungry and he wanted to eat everything in sight. For the first time in his life I watched in amazement as he ate. We started with small tastes of foods every meal then quickly moving to bites because he wouldn't wait.
Once Liam got the AMT he began to thrive. We watched as he made huge strides. In June of 2013 he started walking. Then came running, growing, thriving. It didn't cure all medical issues but it changed everything. It saved my son from starving.
May 17th 2016
November 24th 2015 Thanksgiving Dinner
This is why he grew at such a slow rate. At 4 years old he could still use his baby high chair. He could still wear size 6-9 month shorts. He had to wear overalls most of the time because pants that were the length he needed were too large in the waist.
November 1st 2015
We taught Liam to be proud of his feeding tube. We never wanted him to be ashamed of it or his scars. As a result he would show off his "button" to everyone. He would pull up his shirt and say "My button. My belly button" and laugh. I wondered if he was searching for others with a button like him as well but it was clear he was comfortable with who he was.
May 29th 2014
Liam's feeding tube journey taught me that it doesn't matter how a baby gets fed, what's important is that they get fed.
What is an NG tube?
What is a G-tube?
What is a GJ-tube?
What does an AMT Mini One Balloon-less G-tube look like?
What does a Mic-key look like?
#feedingtubeawareness #tubie #iloveatubie #failuretothrive #cdhawareness
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