This week is Feeding Tube Awareness Week! There are children and adults everywhere that are dependent on a feeding tube as their only source of nutrition, others use it to supplement nutrition if they are struggling with growth for any number of reasons. Regardless, it greatly helps these individuals with their quality of life.
I am going to be really honest. The first time Beckett was admitted to the hospital for Failure to Thrive (click there to read all you ever wanted to know about failure to thrive) at 4 weeks old, I was overwhelmed just sitting in the little parent lounge on the 12th floor...the place with the refrigerators, microwave, aquarium. I thought, wow, how am I here? And then I saw a young infant girl being carried around by her mama with a little tube taped to her face and going up her nose. And I thought to myself, "oh, that sweet baby must be really sick to need that tube up her nose. I wonder what could be wrong." And I don't even think I knew the proper name for it.
Less than a week later, I watched as it took 3 nurses and several tries to get that tube up my sweet son's nose. After an x ray, we learned it wasn't in the right place. So they had to do it all over again. That tube is called a Naso-Gastric (NG) tube. It gets its name because it runs from the nose down to the stomach. It is not placed surgically, and parents are even taught how to replace it.
This little tube got my baby back up to his birth weight and gave him the energy that he needed to learn to suck from a bottle correctly. Once he started drinking all the calories he need, we were able to stop using the feeding tube.
Now here he is at 4 months old. With the feeding tube. He was not growing, and the doctor put him on a continuous feeding at this point. You can read more about our experience at this time here. He did not tolerate the pump well, and it led to a lot of crying and upset. Once again, we managed to get him off of it and taking it all his nutrition orally.
Also, I just have to mention, this is a great lesson on how NOT to tape an NG tube. I plan on writing up a post on how to tape an NG tube since we have now become pros at it.
Now a year later, at about 16 months, we gave the NG tube another go. Again, his weight was a concern and now his length had stopped increasing. He went from the 65th%ile to the 0 rapidly. This time the feeding tube did help and was more successful. Though he still did not become huge on it. Click here to read about this go around with the NG tube and being pushed out of our comfort zone. After 3 months of the feeding tube, he had a bad case of bronchiolitis. We pulled the tube so that he could breathe...or should I say that he pulled the tube. :) The doctors thought we could give him a chance to grow on his own. And he did well without it.
Now here we are, another year later, another feeding tube awareness week, and the tube is back again. So I decided after the past 3 years of having a tube during feeding tube awareness week, it was time to post about it! Somehow, it is always at this time of year. I am not sure if it has something to do with the winter or what... :) But here we are tube in nose. And it is helping him! (But more on that later)
I just wanted to take a moment to share out journey on and off an NG tube with you all this week. I think it is important for others to know what this is and how it helps people who truly need it. It should be a last resort and not the first step in helping a child with failure to thrive. Feeding tubes are life savers. They are absolutely amazing, and they have helped are little guy through a lot of rocky times. For more on this, check out: feedingtubeawareness.com
And here are the top 10 things that I learned back in 2011. One thing that I have learned since then is that they aren't as scary as I once thought they were. It is simply a tube going into his tummy to deliver nutrition and hydration. I was very scared at first, as I suppose is the case with anything new and unknown. The fear of it all has gone away. It is easier now than it was 2 years ago. We are all more comfortable with it, and that makes it much easier.
**from 2011-- This feeding tube thing is harder to learn then you might think. Here is what I
have learned so far:
1. Continuous night feeds aren't as convenient as that might sound. Yes, I am sure many of you may think how nice to have a machine feeding your baby so you can sleep. However, it has been anything but that. I am awake more now. And you think of things such as the fact that you can't feed him formula that has been sitting in the bag on the pump stand, unrefrigerated for 8 hours. I mean, you would never feed your baby prepared formula in a bottle that has sat out for 8 hours. So, when Kyle and I realized this would mean waking every 2 hours to add fresh formula to the bag, my engineer husband quickly devised a way to keep the formula cold for 8 hours involving an insulated lunch box and lots of cool packs.
2. A nursing degree would be very helpful in feeding a tube feed child. Any time before I put anything into his tube, I must check the position of the tube with a stethoscope. I put a syringe in the end of his tube, the stethoscope on his belly, and actually blow 3 mL of air into his already gassy belly to listen for air in his tummy. If I hear the air, I know it is in the right place. This would all be much easier if I knew where his tummy was. (I have now learned, but still struggle with it every night). I also have to draw formula back through the tube to assure its placement. I have also learned to vent air from his tummy using the tube. The tube also needs "flushing" to stay fresh. This upkeep and "nursing part" has become the most stressful part of the feeding tube for me.
3. A huge sudden increase in formula in a baby's diet will make him VERY cranky. Imagine if you were used to a 2000 calorie per day diet, and someone suddenly increased it to 1 4000 calorie per day diet. You wouldn't feel so great either.
4. Timing is key. I am still trying to figure out the best time to start the pump. I don't want it to be too close to his last bottle of the day to where he will be over full- cause that makes him mad. But I also don't want to wait so long that he is too hungry to wait for something that only pumps one oz per hour into his belly.
5. It is hard to leave him alone for even a minute without watching him for fear of him pulling out his tube. He enjoys watching his mobile in his crib, but now I just wonder about the tube the whole time...
6. No book on healthy sleep habits, scheduling, baby whispering or even the happiest babies on the block will help me with this.
7. It is exhausting. Counting ounces and calories and timing it all just right. Making sure he doesn't burn too many calories while eating. Making sure he doesn't burn too many calories being awake or upset. I am exhausted, and I don't deal with many of the medical complications that many other moms of tubies deal with. Many of these children require around the clock care. I admire the strength of these parents doing what feels like the hardest job on earth. But still, I am exhausted.
8. It is worth the hard work. This week we are thrilled that BECKETT GAINED NEARLY 7 OZ! Babies at this age are expected to gain one once per day, so about 2 lbs per month. Up until now, Beckett has gained 2 lbs in 4 months. So we are very excited about this gain! Also, I have noticed a decrease in the amount of spit up today. Yay! It is odd that this tube-- that honestly wears me out--could change his quality of life. That is a good thing.
1. Continuous night feeds aren't as convenient as that might sound. Yes, I am sure many of you may think how nice to have a machine feeding your baby so you can sleep. However, it has been anything but that. I am awake more now. And you think of things such as the fact that you can't feed him formula that has been sitting in the bag on the pump stand, unrefrigerated for 8 hours. I mean, you would never feed your baby prepared formula in a bottle that has sat out for 8 hours. So, when Kyle and I realized this would mean waking every 2 hours to add fresh formula to the bag, my engineer husband quickly devised a way to keep the formula cold for 8 hours involving an insulated lunch box and lots of cool packs.
2. A nursing degree would be very helpful in feeding a tube feed child. Any time before I put anything into his tube, I must check the position of the tube with a stethoscope. I put a syringe in the end of his tube, the stethoscope on his belly, and actually blow 3 mL of air into his already gassy belly to listen for air in his tummy. If I hear the air, I know it is in the right place. This would all be much easier if I knew where his tummy was. (I have now learned, but still struggle with it every night). I also have to draw formula back through the tube to assure its placement. I have also learned to vent air from his tummy using the tube. The tube also needs "flushing" to stay fresh. This upkeep and "nursing part" has become the most stressful part of the feeding tube for me.
3. A huge sudden increase in formula in a baby's diet will make him VERY cranky. Imagine if you were used to a 2000 calorie per day diet, and someone suddenly increased it to 1 4000 calorie per day diet. You wouldn't feel so great either.
4. Timing is key. I am still trying to figure out the best time to start the pump. I don't want it to be too close to his last bottle of the day to where he will be over full- cause that makes him mad. But I also don't want to wait so long that he is too hungry to wait for something that only pumps one oz per hour into his belly.
5. It is hard to leave him alone for even a minute without watching him for fear of him pulling out his tube. He enjoys watching his mobile in his crib, but now I just wonder about the tube the whole time...
6. No book on healthy sleep habits, scheduling, baby whispering or even the happiest babies on the block will help me with this.
7. It is exhausting. Counting ounces and calories and timing it all just right. Making sure he doesn't burn too many calories while eating. Making sure he doesn't burn too many calories being awake or upset. I am exhausted, and I don't deal with many of the medical complications that many other moms of tubies deal with. Many of these children require around the clock care. I admire the strength of these parents doing what feels like the hardest job on earth. But still, I am exhausted.
8. It is worth the hard work. This week we are thrilled that BECKETT GAINED NEARLY 7 OZ! Babies at this age are expected to gain one once per day, so about 2 lbs per month. Up until now, Beckett has gained 2 lbs in 4 months. So we are very excited about this gain! Also, I have noticed a decrease in the amount of spit up today. Yay! It is odd that this tube-- that honestly wears me out--could change his quality of life. That is a good thing.
What wonderful news to read of your success again with the feeding tube! Go Becket, go! Happy (belated) awareness week. Grateful to have been educated. :):)
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