G Tube and Nissen Experience

BmoreMamma

So it looks like the doctors will be recommending that L receive a Nissen and G Tube. He's still not weaning from the level of support that he's on with the canula and they think he may be aspirating and not really allowing his lungs time to heal. Wondering if anyone else has had a similar experience? Are there other medical treatments that your doctors tried prior to the Nissen/g tube? Did you see an improvement after the procedure?We're so anxious to make SOME progress, but this makes us so nervous.

jacque_z

Are you thickening his feedings?  Have you done a swallow study to see if he is actually aspirating?  My daughter had major issues with feedings.  She also had horrible reflux. These kept us in the NICU past her due date.  The Dr. was pushing the gtube so we could go home.  We figured out that she had a delayed swallow.  We started thickening her bottles to honey consistency.  This helped immediately and we went home without a gtube a couple weeks later after she got her stamina up.  

JakesBride07

DD has a Nissen and G-tube. They couldn't complete a swallow study because she was so uncoordinated (she's never been bottle fed and doesn't have a great suck/swallow/breath reflex). The doctors wanted to do a pH Probe Study on her as well to see what "type" of reflux as well as how often, etc before the surgery but they warned that she could aspirate and get much worse, in her case we declined and moved forward with the surgery.

Initially (for about a week) post op it was pretty rough, but more because of her respitory issues then anything else. Once they were able to get her back off the vent things went quickly from there, she was on Cannula straight from the vent and stayed on cannula for another week or less.

Overall she was much happier and didn't seem as miserable with feedings.

For a long time after I had a love/hate relationship with the G-tube because DD happens to be slow to heal, etc. But now almost 5 months out, I can tell you that it was the best decision for DD.

Medtwin

We just had the g-tube & nissen for Gracie..and she's like a different baby.. her surgery was 11/7..it was the best decision for her.. she had a hital hernia..and really bad reflux.. she was called the 'puker baby'..  on 11/7 for surgery she weighed 4lbs. 1 oz.. today she is 6lbs. 3oz.. WOW.. I wouldnt bat an eyelash..and it's not forever.. it will help them grow.. and now we do a little oral feeds at every feeding..  and in due time..it'll all work out a blessing for us.. she can now go home after 125 days in the NICU.. she wouldn't had that opportunity if no gtube..

Good luck!

bhilyer

Hilyer just had a g-tube and nissen last week.  We spent 2 nights in the hospital, but he was only on Tylenol for the pain.

Before he was discharged from the NICU, one of the NP and neos mentioned it but I was very against it at that point.  He was finally eating well by mouth and gaining weight.  Once we got home, his weight gain continued but it slowed a lot -- like 1/2 oz a day.  Looking back I question not doing it sooner, but what can I do now?

We are still feeding by mouth during his wake hours, but pump 9-10 oz in at night while he's sleeping.  We've had some gas issues and he's not eating solids as well, but he wasn't a super star with solids before.  Plus, milk is what's most important right now.

On top of the low weight issue, Hilyer is still on oxygen at home.  He's holding steady, but not able to wean yet.  His pulmonologist is the one that really pushed the surgery.  He felt like Hilyer was refluxing from below and aspirating later on.  His lungs are working too hard and can't heal while he's so small.  I'm sure you've heard this, but the key to healthier lungs is weight gain.

Please let me know if you have any other questions.  I'll tell you what I know and what I've experienced thus far.  Check out these links for more information:

https://www.feedingtubeawareness.com/

https://www.mic-key.com/home.aspx

 

Also, if you're on Facebook there is a group for FTA and one called My MICKEY. Lots of success stories and help from these groups. 

BmoreMamma

Thanks for all of your feedback, ladies. The G-tube doesn't scare me that much because I know it will come out in time, but the thought of the Nissen freaks me out a bit since it's irreversible and has the potential for complications. They're going to do a bunch of tests (e.g, upper GI, milk scan, etc.) over the next few days so we'll see what they show and take it from there.Thanks again for the input, and hope everyone has a nice weekend : )