This is by far the most frequent, and hardest question to answer
People ask us all the time, “How long will Maddison need her feeding tube?” And I’m sure if you ask any other parent of a tube-fed baby they will say that it is the most common question they get asked too, along with “Why do they have it?” It really is the hardest question to answer, because there isn’t a straight forward answer.
In short, I don’t know how long Maddison will require her feeing tube. It may be a couple years, but it may be for the rest of her life.
There are so many reasons a child (or any person of any age) may require a feeding tube. Some reasons may be temporary, some may be permanent.
Maddison has her feeding tube because she was born unable to swallow.
If she can’t eat by mouth, she needs the tube. Right now her feeding tube is keeping her alive and helping her grow.
If you want to know more about Maddison’s history check out her bio.
What I do know:
Currently Maddison receives 100% of her nutritional intake through her feeding tube. All her water, medicine, and formula go through the tube. She can swallow a small amount, but nothing substantial. Only a couple swallows here and there. Currently it isn’t enough to cut back how much she gets through her tube.
As it stands right now, (at the time I’m writing this post) Maddison’s intake goes into her intestines. The j-tube bypasses the stomach to have her intake go into the jejunum, which is the small intestine. Her stomach hasn’t been able to hold anything in it for a very long time due to severe reflux. Last September her reflux was so bad that it ended up getting her admitted to the hospital for failure to thrive.
Maddison’s GI believes that Maddison hasn’t grown out of her reflux because of Maddison’s small size. Her esophagus is still too short, and as a result, any little reflux turns into spit up. Her lower esophageal sphincter is also underdeveloped. So instead of recovering from reflux entirely by 12-18 months of age due to size and development, Maddison’s body is still just too small. Our suspicion is that it will develop properly with time.
So for now we cannot feed Maddison into her stomach, and we have to wait and see how she grows.
Maddison would need to be able to take all of her nutrition, medication, and water orally into her stomach for a total of 6 months AND fight through a sickness while properly gaining weight before she could graduate and have the tube removed.
Before that even happens she needs to be swallowing more, and hold it in her stomach. Right now we aren’t even close.
What can we do?
We wait. We wait for Maddison to grow an become stronger and more coordinated. It is extremely hard to teach someone to swallow. There are so many muscles involved inside the mouth, and her brain needs to figure out how to communicate with those muscles properly to form a swallow.
Since Maddison has been able to swallow a small amount, and there hasn’t been a concern she is aspirating, we continue to offer her small tastes to encourage and stimulate more swallows. We give her little rice size tastes of baby food *puree, and over time she has been able to swallow up to 10 mL (2 teaspoons) a day.
Her stomach has been getting stronger since last fall and we have been able to disconnect her gastric drain that we had when we transitioned to the j-tube from the g-tube. Although she does still spit up a portion of what she swallows due to her severe reflux, but she can now hold her own bile in her stomach.
Maddison hasn’t struggled with any oral aversion, she LOVES the taste of food in her mouth. It is more of a struggle to keep her from trying to grab the food she can’t eat.
*We were advised by her feeding team from Sunny Hill that is was safe to give her small amounts of water-based fruit and vegetable purees, or breastmilk orally.
So back to the question: How long?
And my answer is still, I don’t know. There is no time frame.
As Maddison grows and her stomach gets stronger we may be able to transition her back to g-tube feeding.
Once her stomach is strong enough to keep food in it, she will have to learn how to better control her swallow.
She may never be able to consume all her food orally, and she may still need her feeding tube to supplement her intake.
Both scenarios of a tube-dependant life, and a tube-free life are equal and real realities. Both of which we are prepared to face. But I’ve said it once, and I’ll say it again: having Maddison tube-free is not my biggest concern. I want her to be healthy, and if having the tube for the rest of her life keeps her healthy, then that’s the way it will be. I am thankful for her life, and having a feeding tube doesn’t diminish how much she is loved.