Discharge with feeding tube

[radicalmum]

@this_dot Hey, adult with a g-tube here! I'm also a nurse (that's why I am here in this subreddit). I live a full and active life with my g-tube and work full time as a nurse. Please don't think it's the end of the world. It's a wonderful tool to ensure that kiddo gets proper nutrition. It also makes it super easy to give meds and kiddo won't ever have to taste any nasty medicine. I also eat regular food by mouth too. You can feed as much as you can by bottle/breast and then put the remainder of the feed through the g-tube. Please don't stress too much about this. It can also be removed in the future when kiddo doesn't need it anymore. You've got this!

 

[iza]

@this_dot G tube family present! I understand that what you are feeling, and please be assured that you are not alone.
It has been GREAT for our LO to get all the nutrients and calories from the g tube they need while learning how to eat. Bottle feeding was the only thing keeping us in the nicu after 160+ days of breathing problems, so we opted for the surgery. In our case, our LO developed an oral aversion so they still have the g tube, but it has taken a ton of pressure off of them while they learn how to eat.
It has not held us back at all, as in we can still go places, travel, spend the day out somewhere and be sure that our baby is eating. It just involves us packing the supplies we need.
I understand what you mean about there not being anything normal about life with a g tube, and while I hate this phrase I’m going to use it here … life with g tube was “our new normal” and truly we hardly think about it anymore, it’s just the way life is.
I hope this was helpful, best of luck, and know you can always come back here for support

 

[lorien]

@this_dot Nobody wants their baby to need a feeding tube, but I promise it is much less daunting than it sounds. If she does need a G tube, it will give you the opportunity to make sure she’s getting all her calories in without having to stress about how she’s taking bottles. And it won’t stop LO from doing anything - nobody even knows our guy has one unless we tell them or feed him in front of them.

There are a couple nice things about the G tube if it makes you feel better: easier to give meds, can make sure LO stays hydrated when they’re sick and not interested in eating, can feed easily in the car or while baby is sleeping (we do a very long slow feed every night and just put the bag in a lunch box with ice packs).

 

[evh]

@this_dot Former Gtube mama here (my daughter just got it out this past week!). My twins were 32+1 weeks old. My son had no problems eating but my daughter would go sometimes not eating entire bottles because she just didn’t have the endurance. The doctors were so helpful trying other things like different formulas to see if that would help but it didn’t. We honestly just needed time.

The gtube was the best thing for our family especially my daughter. It got us all home together. The surgery just took a couple hours and she was off the breathing tube by the time she was back in the NICU. We got to discharge a couple days later. You will be going feeding therapy (we had it once a week for an hour). We also found a Gtube weaning clinic that was extremely helpful.

The first couple weeks are scary because you are adapting life with a new baby and also just post op in general. But after that, you find a rhythm. You learn what you need to pack when going out. The pump gets less scary and you get into a pattern.

Don’t blame yourself. Don’t think you did something wrong or you should have done something different (I know I felt that a whole lot.) It really is the best thing though. You get to be home with your baby. I wish so much I could go back to the first couple of months and just give my past self a big hug and tell her it will all be ok. I can’t do that so I’m giving you a virtual hug and tell you it will get better. Your baby just needs time.

 

[bborn]

@this_dot Why g tube and not ng?? From what ur describing, g tube seems dramatic. Also, NICU nurses sometimes don’t attempt the bottles as much as they should for the babies to get practice. Not saying that that’s what’s happening in your case, but it might be beneficial to be present during the feeds if you can to help encourage the bottle.

 

[bborn]

Also, I asked about the NG because my baby came home with an NG tube because of stamina issues. Honestly, once he got home, he made a complete change and started taking all of his bottles and we never really needed the NG.

 

[this_dot]

@bborn We’re present as much as we can be. We both work full time and we live 1.5 hours from the hospital. Everyday we have off work we are there for 10-12 hours. I asked for the NG, they’re worried it’ll make her acid reflux worse if she has it for much longer and they said pediatricians are often against them. They said once we got closer we would have a meeting to decide officially but they recommended a g-tube. I definitely don’t want an unnecessary surgery but I also don’t want her to have an aversion to the bottle because her acid reflux is so bad so I don’t want to make it worse if I don’t have to. They said the surgery is pretty quick and if they have the tube in for less than 6 months the hole normally closes on its own

 

[bborn]

@this_dot Well I will keep you all in my prayers, because that G tube talk just still seems dramatic to me. I’m also every bit of an optimist until I’m absolutely certain things won’t go my way, so I’m putting all my prayers and energy towards your baby never needing the G tube. There’s just so many reasons/. in my mind to hold on to hope that she won’t need that surgery. My baby also had acid reflux, and they sent us home with that NG. And the nurses talked about how babies do so much better once they get home, and my baby came home like that was where he wanted to be the whole time. And there’s still so much time for her to grasp feed So as delusional as I might sound, I believe your baby will be okay.

 

[repentandtrustinjesus]

@this_dot My baby also had reflux and would projectile vomit. Turns out she was being overfed at the NICU. We fought to be discharged with an NG tube, and once we reduced feeds at home to where she was comfortable, all vomiting stopped, and her reflux was gone. Then, she started to feel better and was way more open to the bottle. My baby also had oral/bottle aversion because of the bad reflux and always vomiting. She did soooo much better at home. I'm not against gtube if there is a medical explanation that grants for it, but your story is soo similar to ours and so many parents of tubie babies. You can join the Tube Weaning at Home page on FB, it may help you read other stories.

 

[this_dot]

@repentandtrustinjesus I definitely think she will thrive at home. I keep saying she doesn’t know what hunger feels like on a 3 hour schedule they refuse to do ad lib because she’s “not drinking enough yet” but they feed her so much I just feel like she’s full and they’re over feeding her plus the NG tube doesn’t help. I’m praying she can just have a good enough day to reach her goal and go home and we can adjust things as needed

 

[repentandtrustinjesus]

@this_dot I know your baby will do sooo much better at home. We definitely adjusted things at home based on her. She started responding as we started to slowly stop topping off when she drank from the bottle. I will just say that having an NG tube made the transition so much better. Once she was drinking enough, I took it off, and we never looked back. She slowly reached her goal at her own pace, and she is following her own curve.

 

[abrahamscaria]

@this_dot G tube doesn’t mean you are only tube feeding! You will still always try bottle first and if she takes all of her bottles - great! If she can’t quite take all of them, you give her the rest through the tube. But instead of practicing this at the hospital for an unspecified amount of time, you get to work on it at home. Please don’t think it’s the end of the world even if it feels like it right now! The tube isn’t forever, it’s a tool to get her home to you safely!

 

[forgivenofsins]

@this_dot I understand the g-tube seems like am extreme option. Feeding should be easy. After a two week hard learning curve, we came to love the g-tube. We could dial in calories and not pressure my kiddo to eat. She had her tube for two years. While she did gain eating/drinking skills, she never had a lightbulb moment. We worked for two years with a feeding therapist for her to gain her skills.

We did everything with the tube: cars, planes, buses, ferries, underground, restaurants, the store, walks, hikes. The only things didn't do were scuba diving (the only restricted activity) or bike riding (we don't bike ride anyways).

My husband was born at the exact gestational age as our daughter. He struggled to eat but neonatal g-tubes weren't a thing when he was born so he went home and continued to struggled. He grew but very slowly and struggled to gain weight/height until middle school. The g-tube allowed our daughter to gain weight at the appropriate time and not have to struggle for every calorie.

 

[vinnierocks]

@this_dot We came home this week with our tubi baby! Still working with home speech therapy on taking a bottle. She never really got the hang of taking a bottle due to genetic issues, but life with the tube isn't much different than a baby without! I joined a pediatric tube feeding group on Facebook to help not feel so alone in it.

 

[bluerose31]

@this_dot NG is awful and I was so happy for my son when we switched to G. It made a world of difference. He turns 2 in June and it turns out even though he can drink bottles, his failed swallow study shows it's actually not safe. It's so nice for night feeding and medicine giving. When bottles aren't stressful it's so nice, babe can do it at their own pace.

 

[reallybadsinner]

@this_dot G-tube family for 9 months now and it was a great decision for us with very different circumstances. It's weird but you really do just get used to it. I've done g-tube feeds in all kinds of places and in some ways it's easier than bottle feeding.

My advice is to work with a dietician but YOU make the choices when it comes to how feeds work. My experience is that most doctors are ridiculously conservative and impractical; make them defer to you since you know your kid best.

I had a spreadsheet for feed rates and amounts that I used to go from 6 1 hour feeds to 4 40 min feeds even as the total amount went up. That also helped me space out feeds so baby could feel hunger when starting solids ( or when we still tried bottles) Tracking solids is helping us decrease the feed amounts currently.

Good luck and I hope you get some reassurance! This subreddit really helped me when. I was going through the same process.

 

[repentandtrustinjesus]

@this_dot I was in a similar situation like yours. Our baby was born 28+5 and we spent 120 days. Our girl just wasn't getting it, and wouldn't drink enough. I think she never surpass the 30% at the NICU. We were offered to be discharged with a Gtube, but we were certain she would get it at home with us, and multiple tests were done that confirmed that there was no medical explanation that could be preventing her to eat. So we fought for an NG tube and went home. It took us almost 4 months of hard gentle work and prayers, but she did it. It finally clicked for her. In hindsight, since she was tube fed since birth, she didn't know what hunger was or felt like, so she didn't have any motivation to "fend" for herself.

 

[nairna]

@this_dot gtube mom here. My baby got his at the end of Feb after basically an extra month in the nicu over non-existent feeding issues. So trust me when I say I empathize with your frustration. My baby had an NG tube and it was hindering him from wanting to take more and causing acid reflux. We plead with the doctors to let us trial feeding him without it but they thought he wasn’t ready. Feeding specialist and GI could not find any reason why he wouldn’t eat more. He was born full term so he didn’t need to learn to eat, he just seemed uncomfortable. Gtube was literally the only way out for us. We looked at it as a backup plan while we worked on feeding with him at home on our own terms. With no pressure, time schedules and doctors/nurses.

Now he’s eating 100% by mouth since March we haven’t used the gtube in over a month. He’s continuing to gain weight and has already increased his total volume from when he was in the nicu. All the doctors were shocked but we’re not because we knew he just needed to be able to eat on his own terms.

Nobody wants their baby to have surgery or go through more than they need to but trust me the gtube is so small and easy and if they get it out before 6 months of having it, the hole will usually just close up on its own.

 

[this_dot]

@nairna Thats where I’m at!! I’ve begged them to make her feel hungry too. She’s almost constantly being fed through the NG with whatever is left of her bottle, so in my eyes why would she want to wake up and take a bottle if she isn’t even hungry. They finally said we can try it tonight but if she doesn’t do well we will go back to the NG. We’re very anxious to see how she does. Everyone jokes “it’s Amelia’s terms” “Amelia runs the show” and it’s very true. She doesn’t do anything she doesn’t want to do, we’re gonna have our hands full in the future

 

[nairna]

@this_dot Yeah it’s very true that she runs the show! But the problem with the nicu is they’re not letting her run it because whatever she doesn’t eat they’re still force feeding to her. That was 100% our issue and it turned around in like two weeks of being home and just following our son’s cues. We set a threshold for ourselves and would only use the tube if he didn’t eat a certain amount even if it wasn’t the full volume they wanted.