Feeding Tube Awareness week 2015 Day 1

Sunday, February 8th: Kickoff!
Talk about the reasons you, your child, or your loved one is tube fed. Raise awareness of the medical conditions that made tube feeding necessary.

Jillian with her feeding tube bag at Christmas

Jillian has a feeding tube for multiple reasons:
1. Jillian was diagnosed as failure to thrive at 2 months old. Failure to thrive is described as "Kids who fail to thrive don't receive or are unable to take in, retain, or utilize the calories needed to gain weight and grow as expected.Most babies double their birth weight by 4 months and triple it by age 1, but kids with failure to thrive often don't meet those milestones." Jillian was born at 8lb 11oz. She is currently 22lb. She has yet to triple her birth weight and she is over 2 years old. After Jillian was born she had the typical newborn weight loss but then she continued to loose weight instead of gain. At 2mo old Jillian was around 9lbs and that is when she was officially diagnosed as FTT. Without a feeding tube Jillian does not gain enough weight to thrive.
2. Jillian was loosing weight because of vomiting. When Jillian has food in her stomach she vomits. Even without anything in her stomach she refluxes more then a normal person. We are still not positive why Jillian refluxes. Jillian was put on her first reflux medication at less then a month old. We hated the idea of having our little baby on a medication (and she hated the taste) but we had to do something because she was vomiting so much. I would nurse Jillian, she would struggle to stay awake to eat, she would vomit everywhere, then we would feed her pumped milk from a bottle for some easy calories and then she would vomit that too.
3. Jillian aspirates on stuff that she refluxes. Stuff goes into her stomach, she pukes it up and then some of it goes into her lungs. When she was younger and drinking milk she would choke towards the end of eating because milk was going up and down. She would also randomly choke a lot while refluxing. Before Jillian got an NJ tube choking was so common in our house that her doctor made sure we knew CPR. Jillian is currently getting over a bout of aspiration pneumonia. She got a hold of a small piece of cooked cauliflower and she aspirated on it. She has been sick for 2 weeks needing nebulizer treatments every 4 hours around the clock. She is starting to do a little better, but as her energy has increased we had to up her nebs again to every 4 hours (Thursday afternoon/night we tried every 6hours, it did not go well) It has taken a lot out of her.
4. Jillian's stomach does not work quite right. Clinically she shows that food does not empty out of her stomach as fast as it should (although we have not been able to accurately catch this during testing). She has had "tastes" before of baby food where she got less then 15ml of baby food (tablespoon) and she has vomited it and had it come back out of her tube over 15hours later. She had stomach motility testing done where her stomach did not move like it should however her intestines did.
5. Jillian's swallow is not like an average 2year old. She stopped taking food by mouth daily at 4 months old. She has a swallow motility test done that showed that she took lots of little swallows instead of large ones.
6. Jillian has a GJ tube which means that part of her tube goes to her stomach and the other part goes to her intestines. She is fed into her intestines because it is not safe for her to be fed into her stomach. Without a tube she could not be fed into the safest location for her.
7. This week we go to meet with genetics for full genome sequencing to look to see if Jillian has a genetic disorder that is causing her symptoms. She has a lot of symptoms and we are looking for a cause/connection


Jillian has many reasons why she NEEDS a feeding tube! These are just the main ones.

If Jillian did not have a feeding tube she:

• Would not be gaining weight
• Would not be growing
• Would have constant lung infections
• May not be ALIVE!

 We are very grateful for her tube because it keeps her alive.


Stay tuned! This week will be all about feeding tube awareness and the great medical invention that has helped our little girl so much! Please feel free to join in the awareness. There are so many reasons why people medically need a feeding tube. Write a facebook post, share Jillian's story, buy some feeding tube awareness gear, share the video, let the world know why you love a Tubie! 

Here is the video that I made about Jillian's tube feeding journey. It is her story in pictures.  It can also be found on youtube