Robbie has a mic-key button. I have a love/hate relationship with it. We went through months of FTT and struggling and starving and fighting and crying and not sleeping.. to the button brought much relief.. but it's also a hole in my child that I don't like and wish we didn't need.
It can make reflux worse, at least temporarily. Some people have trouble with granulation tissue (the tissue from the stoma grows out of control.) Robbie had some at first, but hasn't had any since he was very small.
Are they doing just the G tube or anything else (fundo?) If it's just the G tube, the surgery is very quick..
What do you need to know? You can ask me whatever. Feel free to email me any time as well.
Robbie has a mic-key button. I have a love/hate relationship with it. We went through months of FTT and struggling and starving and fighting and crying and not sleeping.. to the button brought much relief.. but it's also a hole in my child that I don't like and wish we didn't need.
It can make reflux worse, at least temporarily. Some people have trouble with granulation tissue (the tissue from the stoma grows out of control.) Robbie had some at first, but hasn't had any since he was very small.
Are they doing just the G tube or anything else (fundo?) If it's just the G tube, the surgery is very quick..
What do you need to know? You can ask me whatever. Feel free to email me any time as well.
triciajoy@yahoo.com
DD is getting a fundo and G-tibe, I'm so overwhelmed. Thanks for your email I will be in touch
My daughter is still in the NICU, so I haven't had to care for it on my own, but... she got one last Wednesday... it IMMEDIATELY improved her oxygen requirements, who knew?! I was so so scared for her to get it, but she is so much better now, taking all 8 full feeds a day, much more alert, her heart rate is more stable as well. She still has some coughing/wretching but they started her on a half dose of benadryl (for some reason that helps?!) and she's having less symptoms. It's definitely not as scary after the surgery is done with (easier said then done, I know) Changing the dressing and the care of it is easy, I think when they are this little, it's harder emotionally on us than them.
What city are you in if you don't mind me asking? You can request a specific surgeon if you know any... we chose the same one that did her PDA ligation.
After 19.5 weeks in the NICU - our little 24 weeker is home!
My twins both have G tubes, originally they had GJ tubes, due to severe Reflux/GERD. We opted not to have the Fundo/Nissen done and I'm glad we did, even though we are still dealing with the reflux an feeding tubes a year later. Feeding tubes of any kind are a rough thing to deal with, but they do work and work very well, as much as I hate them. There is a lot of stuff to tell you but hard to know where to start. We currently have the same McKey button style of G tube that TriciaJoy's son Robbie has. You will likely not get that kind just yet, usually they will have a sort of "beginner" tube that is longer and has a larger port on the end until the stoma surgical site his healed around the tube and/or your LO is about 20lbs. They are not hard to maintain, and easy to run once you know how. With all long term feeding tubes there will always be issues with eating by mouth, especially if your LO has a GJ tube. You will need to work with an OT who is trained specifically with feeding issues to help your LO continue to eat by mouth. Ask your doctor to show you what the actual G tube they will use looks like in person, not a picture or a diagram.
Trish, PreemieParent and I have been down this feeding tube road for a while now. Do you have specific questions that we can answer for you?
You can read about my boys and our feeding tube and oxygen experience in my blog, link is in my siggie. If you have questions, please feel free to email me at Taylo2Babies at Gmail.com
My daughter is still in the NICU, so I haven't had to care for it on my own, but... she got one last Wednesday... it IMMEDIATELY improved her oxygen requirements, who knew?! I was so so scared for her to get it, but she is so much better now, taking all 8 full feeds a day, much more alert, her heart rate is more stable as well. She still has some coughing/wretching but they started her on a half dose of benadryl (for some reason that helps?!) and she's having less symptoms. It's definitely not as scary after the surgery is done with (easier said then done, I know) Changing the dressing and the care of it is easy, I think when they are this little, it's harder emotionally on us than them.
What city are you in if you don't mind me asking? You can request a specific surgeon if you know any... we chose the same one that did her PDA ligation.
OMG it would be so great if DD could come off O2 after this. We are in Charlotte, NC. I agree once my fear is gone things will be better.
Robbie went straight to the MicKey, he didn't have to start with anything else. I think it's a surgical preference. Robbie had a mickey put in at 4lbs. Then again later about 9lb. (Long story.. he had it taken out and had to be put back in.)
I was very, very, very emotional about it being put in.. I did NOT want it.. but in the end.. it really has been a lifesaver.
The fundo, I feel less grateful for. unfortunately Robbie still pukes like a fountain. I think the only thing the fundo did was make it harder for him to burp, but he can still puke fine. I probably could have had it redone, but I really didn't want to do that.
Re: G-Tube Mommy's
Do you know what kind you'll be getting?
Robbie has a mic-key button. I have a love/hate relationship with it. We went through months of FTT and struggling and starving and fighting and crying and not sleeping.. to the button brought much relief.. but it's also a hole in my child that I don't like and wish we didn't need.
It can make reflux worse, at least temporarily. Some people have trouble with granulation tissue (the tissue from the stoma grows out of control.) Robbie had some at first, but hasn't had any since he was very small.
Are they doing just the G tube or anything else (fundo?) If it's just the G tube, the surgery is very quick..
What do you need to know? You can ask me whatever. Feel free to email me any time as well.
triciajoy@yahoo.com
My Blog
DD is getting a fundo and G-tibe, I'm so overwhelmed. Thanks for your email I will be in touch
My daughter is still in the NICU, so I haven't had to care for it on my own, but... she got one last Wednesday... it IMMEDIATELY improved her oxygen requirements, who knew?! I was so so scared for her to get it, but she is so much better now, taking all 8 full feeds a day, much more alert, her heart rate is more stable as well. She still has some coughing/wretching but they started her on a half dose of benadryl (for some reason that helps?!) and she's having less symptoms. It's definitely not as scary after the surgery is done with (easier said then done, I know) Changing the dressing and the care of it is easy, I think when they are this little, it's harder emotionally on us than them.
What city are you in if you don't mind me asking? You can request a specific surgeon if you know any... we chose the same one that did her PDA ligation.
My twins both have G tubes, originally they had GJ tubes, due to severe Reflux/GERD. We opted not to have the Fundo/Nissen done and I'm glad we did, even though we are still dealing with the reflux an feeding tubes a year later. Feeding tubes of any kind are a rough thing to deal with, but they do work and work very well, as much as I hate them. There is a lot of stuff to tell you but hard to know where to start. We currently have the same McKey button style of G tube that TriciaJoy's son Robbie has. You will likely not get that kind just yet, usually they will have a sort of "beginner" tube that is longer and has a larger port on the end until the stoma surgical site his healed around the tube and/or your LO is about 20lbs. They are not hard to maintain, and easy to run once you know how. With all long term feeding tubes there will always be issues with eating by mouth, especially if your LO has a GJ tube. You will need to work with an OT who is trained specifically with feeding issues to help your LO continue to eat by mouth. Ask your doctor to show you what the actual G tube they will use looks like in person, not a picture or a diagram.
Trish, PreemieParent and I have been down this feeding tube road for a while now. Do you have specific questions that we can answer for you?
You can read about my boys and our feeding tube and oxygen experience in my blog, link is in my siggie. If you have questions, please feel free to email me at Taylo2Babies at Gmail.com
Good luck!
OMG it would be so great if DD could come off O2 after this. We are in Charlotte, NC. I agree once my fear is gone things will be better.
Robbie went straight to the MicKey, he didn't have to start with anything else. I think it's a surgical preference. Robbie had a mickey put in at 4lbs. Then again later about 9lb. (Long story.. he had it taken out and had to be put back in.)
I was very, very, very emotional about it being put in.. I did NOT want it.. but in the end.. it really has been a lifesaver.
The fundo, I feel less grateful for. unfortunately Robbie still pukes like a fountain. I think the only thing the fundo did was make it harder for him to burp, but he can still puke fine. I probably could have had it redone, but I really didn't want to do that.
My Blog
Thank-you so much to all of you for sharing, I feel much better!