Sunday, February 6, 2011

Feeding Tube Awareness Week--Day 1

Today is the first day of Feeding Tube Awareness Week.  The goal of this Awareness Week is to educate, and spread awareness to as many people as possible!

This video is put together through the Feeding Tube Awareness site, and features a lot of kids and babies who have feeding tubes.  There are so many medical reasons, and having your baby get a tube it a LAST resort for parents.

Martin has many reasons why he was given a gtube.  Prematurity was just a small part in the conglomerate of complications Martin had involving eating.  The largest reason was his lungs.  His lungs are so severely damaged, and no Doctor was ever quite sure WHY.  He was hardly on a ventilator, about 24 hours.  The damage in his lungs was as bad as a baby who had been on the vent for weeks, not hours.  And over time, it wasn't getting better, it actually got WORSE.  He was given the diagnosis of "Chronic Lung Disease". Which is kind of a catch-all of "we don't know why your baby can't breathe well, and isn't responding like other babies to the treatments.  Since he's x-weeks old, and still on O2, we're diagnosing him with CLD, or Bronchopulmonary dysplasia (BPD)."

He wasn't able to develop an O2 reserve that most people have, which makes him tire easily, and makes feeding VERY difficult.  The little energy Martin had stored up, was used up VERY quickly when he tried to eat.  Because of that, he could only take small amounts, and the rest was pumped into his belly through his NG-tube or OG-tube (nasal-gastric-tube, oral gastric-tube).  He was never able to take a full feeding orally.  Never.

As his O2 requirements went up and down, and up and down again, he wasn't able to eat orally at times.  If his requirements were TOO high, it was too easy to have his belly fill up with air instead of food when he was eating orally.  Then as time when on, his reflux was aggravated from tubes being pushed down his throat so many times, and just from being premature, that he was diagnosed with GERD--Gastroesophageal Reflux Disease.

And thus the oral aversion developed to the point where Martin couldn't tolerate ANYTHING in his mouth, without gagging and puking.

So with a combination of horrible lungs, horrible reflux, and horrible oral aversion, Matthew and I made the decision that a gtube would be the only way Martin could eat until he grew out of those things.  His lungs are getting better, his reflux has almost disappeared, and Martin loves to stick everything in his mouth.

And now we're trying to teach Martin the skills he was never able to learn as a baby.  He wasn't able to master sucking, and so he can't take a bottle.  He never learned how to swallow anything, so he panics when food is in his mouth.  He doesn't know what to do with it, and so sits there with his mouth open, until he oftentimes drools the food out, instead of figuring out how to move it around in his mouth.

These things take time, and Martin's time-table is the only method we can use, and we accept that.  He will learn as he's ready and comfortable.  Forcing him to eat will do no good for him, OR for us as his parents.  It might be months until he's comfortable with food in his mouth, and can figure it all out.  It might be years.

This is why Martin has a tube.  And it's a large part of who he is.  Someday, he'll show off his scar and tell people that is where he was attacked by a shark, or a bear, or some out-landish story like that.  He'll be proud of where his tube is, and share his story with everyone. 

I *heart* my tubie boy.


Jennifer and Elizabeth

I too have a former 28 weeker, who has bpd, cld, gerd, delayed gastric emptying, seizures, oral aversions, developmental delays, and central sleep apnea. She also had a tracheostomy for 3 years due to severe sub-gullotic stenosis. My tubie is now 6 yhears old and still has her tube. However, last year after a 10 week stay in an intensive feeding program we finally got her eating pureed foods. She still has a long way to go, buthas come so far already!! These preemies are fighters and I know mine has amazed me at times and i have wondered all too often how she is even here. But that fighting spirit just keeps pushing her along. Good luck with the journey ahead of you and I hope that your lil man conitnues to amaze and defy you and doctors each and everyday!

Post a Comment