The doctor called today and said in a couple weeks we may be discharged with a g-tube. I feel like this is the end of the world for us. We’ve been working on feeding for 4 weeks and our girl is 41+5 now, born at 27+3. They said around 44-45 weeks if she’s not better with eating we will be discharged home with a g-tube. I’m so upset and angry. She eats well, her quality of feeds are great, she simply won’t wake up to eat or stay awake long enough to eat. They keep saying it’s an endurance thing but she just isn’t getting it. I know it’s possible to live a “normal life” with a g-tube, but there’s nothing normal about having to feed our baby through a tube instead of a bottle. We’ve been in the nicu for 100 days today. I don’t think she’s ever going to “click” for feedings.
lostandinsecure
New member
@lostandinsecure Well when you put it that way I’m ready for her to have the g-tube now lol
archhumanmichael
New member
@this_dot G-tube mamma here 
. We were discharged in December after almost 4 months in the NICU. My daughter came home with a g-tube. I like you felt like it was the end of the world. I felt angry, sad, and hopeless. My daughter did not have the stamina to finish her bottles and would not stay on my breast long enough either. We finally came home and continued working on bottle feeding, but soon developed a bottle aversion. She showed more preference for the breast and has been breastfeeding for longer periods now. She’s been growing very well with a combo of breastfeeding and g-tube feedings. Now we are weening off the g-tube after four months. Don’t loose hope. Keep working with your baby. They will eventually get it.
. We were discharged in December after almost 4 months in the NICU. My daughter came home with a g-tube. I like you felt like it was the end of the world. I felt angry, sad, and hopeless. My daughter did not have the stamina to finish her bottles and would not stay on my breast long enough either. We finally came home and continued working on bottle feeding, but soon developed a bottle aversion. She showed more preference for the breast and has been breastfeeding for longer periods now. She’s been growing very well with a combo of breastfeeding and g-tube feedings. Now we are weening off the g-tube after four months. Don’t loose hope. Keep working with your baby. They will eventually get it.@archhumanmichael My baby also does much better at the breast and I’m terrified of her getting an oral aversion. They just keep saying to wait for it to click and it doesn’t seem like it’s going to
@this_dot We dealt with a feeding aversion for our daughter, and she was discharged with an NG. Not a stamina issue, she started fighting feeds in the NICU, and that continued once we got home.
Feeding aversions sound really scary, but they’re not the end of the world and very possible to reverse. If you have concern about it, I found Rowena Bennett’s book “your baby’s bottle feeding aversion” to be a massive life saver - and her guidance on how to bottle feed is so helpful for NICU parents.
The g-tube can really be a resource for you, and something that you can lean on. Babies don’t respond well to pressure to feed, but with the safety net of the g-tube, you can continue to work on feeds without pressuring her, and with the comforting knowledge that she will get all of her nutrition and calories no matter what. You might be way more prone to push her feeding without the tube to fall back on, but with the tube there, you can relax and go at her pace.
Feeding aversions sound really scary, but they’re not the end of the world and very possible to reverse. If you have concern about it, I found Rowena Bennett’s book “your baby’s bottle feeding aversion” to be a massive life saver - and her guidance on how to bottle feed is so helpful for NICU parents.
The g-tube can really be a resource for you, and something that you can lean on. Babies don’t respond well to pressure to feed, but with the safety net of the g-tube, you can continue to work on feeds without pressuring her, and with the comforting knowledge that she will get all of her nutrition and calories no matter what. You might be way more prone to push her feeding without the tube to fall back on, but with the tube there, you can relax and go at her pace.
@trusaders How long did you work on feeding before they decided to send you home with the g-tube?
@trusaders I was thinking that too. Once we’re home I think we will be less stressed and it’ll be her parents always feeding her not a variety of nurses. We won’t be as pressured for her to take bottles because we’re already home. We’ve tried our best to stay patient but it’s making us stir crazy. I’m still praying she just clicks and we come home. It sucks so bad because she knows how to eat she’s just so tired and can’t stay awake long enough to do it and there’s nothing we can do to help that right now. I’ll definitely get that book!
dece870717
New member
@dece870717 Thank you! How long as your LO had a g-tube? Is it difficult to manage? I try to stay positive, but this has just left us defeated. This whole time we felt like we jumped through one hoop successfully and were going to have a relatively normal baby at the end of it all. This is my first baby so I struggle a lot mentally with missing out on all the normalcy of pregnancy and newborn experience. I’m trying to be positive that I’ll at least have her home but just still angry that it has to be this way. I guess the way I see it is my body failed her so badly and now she has to pay for that.
dece870717
New member
@this_dot She's had it since she was 3 months, which was last July. We're looking at at least another year with it. She took her first couple bottles okay, then got worse and worse and developed an oral aversion. We're thinking it had to do with her reflux issues.
It's not difficult at all, but I would be lying if I said there wasn't so much stress surrounding it. You can cover it with split gauze or buy washable pads. Gauze worked better for us, as the pads were too big for her. We clean it twice a day. I have some medical q-tips I order off Amazon that I like to use. We order our supplies from a medical supplier and they ship a month supply to the house. Bags, extensions, syringes, gauze, and tape. Formula too, if you're formula feeding. It will be covered by insurance, so that's one nice thing. Gotta take the wins where you can get them lol. I had to yell at the medical supply company once at the beginning because of issues, but we never had any since.
It will seem like chaos at first, but you'll get a routine and it will be normal.
I can relate to the feeling. Our first baby too, after nearly two years of trying. I'm not sure I'd I'll ever be over the feeling of being robbed of what was supposed to be the most beautiful moment of my life. It's unfair and I'm sorry it happened to you too. But it's temporary and the good still outweighs the bad. Having them home is such a joy and I'm excited for you.
It's not difficult at all, but I would be lying if I said there wasn't so much stress surrounding it. You can cover it with split gauze or buy washable pads. Gauze worked better for us, as the pads were too big for her. We clean it twice a day. I have some medical q-tips I order off Amazon that I like to use. We order our supplies from a medical supplier and they ship a month supply to the house. Bags, extensions, syringes, gauze, and tape. Formula too, if you're formula feeding. It will be covered by insurance, so that's one nice thing. Gotta take the wins where you can get them lol. I had to yell at the medical supply company once at the beginning because of issues, but we never had any since.
It will seem like chaos at first, but you'll get a routine and it will be normal.
I can relate to the feeling. Our first baby too, after nearly two years of trying. I'm not sure I'd I'll ever be over the feeling of being robbed of what was supposed to be the most beautiful moment of my life. It's unfair and I'm sorry it happened to you too. But it's temporary and the good still outweighs the bad. Having them home is such a joy and I'm excited for you.
@dece870717 Yes it’s literally traumatizing. A part of me wants another baby so we get that good experience. A part of me is scared this will all happen again and makes me want to never have another child. It’s hard. It’s so intimidating but I’m hopeful with time she will build up the stamina to eat— even if that means coming home with the gtube to give her more time.
dece870717
New member
@this_dot The g-tube is the best choice that could have been made for my son.
He’s 4 now, still has it (his feeding issues are more extensive than just “lack of endurance” - many NICU grads who need gtubes can wean off of them way before now, some around one year old or even before) and he is thriving. Like, seriously, I cannot say enough good things about having a secure way to ensure my child is fed and hydrated so that he can grow and thrive.
As far as normalcy, it doesn’t affect his or my daily life at all. He can do everything he could need or want to do… eat, drink, swim, play on the playground, go to preschool (granted he does go to public preschool at an elementary school campus that has a nurse onsite- he could not attend “regular” daycare). As a family we travel, we try new things, we do anything and everything. He did have some tolerance issues as a baby and needed a pretty specific feeding schedule to avoid major vomiting but this was due to other medical conditions, not the tube itself, and wasn’t all that bad to deal with because his pump is tiny (fits in the bottle pocket of a regular diaper bag, or in a tiny toddler sized backpack) and it was easy to feed him on the go if I dressed him in easier clothing. Now, his pump never leaves the house because if I need to feed him outside the house he can tolerate syringe feedings. It’s so ridiculously easy… 2 minutes and it’s done. (His pump will go to school when he switches to full day instead of half day schedules- the nurse will start and end the feeds in his classroom and he’ll wear his pump backpack with no change in mobility or participation during his feedings). He ate nothing by mouth for 2 years due to a severe aversion but for the last year he’s been able to try any food he wants on his own terms and without pressure, with peace of mind for me because I know he’s getting the nutrition he needs regardless. As far as daily care, when the tube was fresh I’d change the gauze dressing at the site every morning and night, alongside a diaper change, in a couple minutes or less. He does have sensitive skin and now uses fabric tubie pads (easy to find on amazon or Etsy) to keep from getting irritation on his belly around the tube. And… that’s it.
Multiple family members and friends have learned to work his tube and can feed him easily when they need to. It’s just… his and our normal. No big deal at all.
Overall, 10/10. Truly an amazing, tiny, powerful little tool that is almost exclusively responsible for the amazing and healthy life my son gets to live.
He’s 4 now, still has it (his feeding issues are more extensive than just “lack of endurance” - many NICU grads who need gtubes can wean off of them way before now, some around one year old or even before) and he is thriving. Like, seriously, I cannot say enough good things about having a secure way to ensure my child is fed and hydrated so that he can grow and thrive.
As far as normalcy, it doesn’t affect his or my daily life at all. He can do everything he could need or want to do… eat, drink, swim, play on the playground, go to preschool (granted he does go to public preschool at an elementary school campus that has a nurse onsite- he could not attend “regular” daycare). As a family we travel, we try new things, we do anything and everything. He did have some tolerance issues as a baby and needed a pretty specific feeding schedule to avoid major vomiting but this was due to other medical conditions, not the tube itself, and wasn’t all that bad to deal with because his pump is tiny (fits in the bottle pocket of a regular diaper bag, or in a tiny toddler sized backpack) and it was easy to feed him on the go if I dressed him in easier clothing. Now, his pump never leaves the house because if I need to feed him outside the house he can tolerate syringe feedings. It’s so ridiculously easy… 2 minutes and it’s done. (His pump will go to school when he switches to full day instead of half day schedules- the nurse will start and end the feeds in his classroom and he’ll wear his pump backpack with no change in mobility or participation during his feedings). He ate nothing by mouth for 2 years due to a severe aversion but for the last year he’s been able to try any food he wants on his own terms and without pressure, with peace of mind for me because I know he’s getting the nutrition he needs regardless. As far as daily care, when the tube was fresh I’d change the gauze dressing at the site every morning and night, alongside a diaper change, in a couple minutes or less. He does have sensitive skin and now uses fabric tubie pads (easy to find on amazon or Etsy) to keep from getting irritation on his belly around the tube. And… that’s it.
Multiple family members and friends have learned to work his tube and can feed him easily when they need to. It’s just… his and our normal. No big deal at all.
Overall, 10/10. Truly an amazing, tiny, powerful little tool that is almost exclusively responsible for the amazing and healthy life my son gets to live.
@this_dot Hey there, I feel you on the grief over the fact that none of this is what we had imagined. My daughter was discharged on an NG tube at almost 45 weeks after trying for well over a month to improve feeds. I began the conversation about coming home on a tube at about 41 weeks, but they wanted to wait in hopes that the weeks that followed would be enough to give her time to progress. I wish we wouldn’t have had to wait. We had a lot of consults about choosing an NG tube or G tube and she had been taking enough by mouth that we felt an NG tube would be the best option, thinking she’d make progress at home, as we’d been told that it is common for babies to excel at home. Turns out, after consulting with the feeding clinic, it’s super common for feeds to stagnate or worsen regardless of the baby being home. Now we are looking at getting a G Tube ASAP because the NG tube sucks, is a detriment to her already terribly reflux, and it seems like she is going to need tube feeds for quite a while. All of this to say as things go on, if they give you options, seriously consider how badly it sucks to manage and place NG tubes on your own! We felt it was less invasive, but it certainly isn’t.
@this_dot Yeah, I certainly can’t speak to what your experience will be, but I can say that I think it’s worthwhile to really weigh the pros and cons! It is possible that your baby comes home, crushes bottles, and doesn’t need a tube after a few weeks. When our baby was your baby’s age, her biggest issue was maintaining stamina as well and she was averaging about 40-50% of her feeding by mouth… now that she is a few weeks older and it is clear to us that the reflux is really constant and quite severe, her stress is more of a factor. Lots of moving parts to consider!
@aldaelen She’s taken up to 75% of her bottle but doesn’t stay there. She averages about 50-60% so we’re at a loss of whether she’s just going to slowly get there. I’d hate to bring her home on a G tube and have the surgery and then her thrive at home. I wholeheartedly feel like she just needs to be in a different environment with it being my husband and I feeding her only vs. all the many NICU nurses and PSA’s.
@this_dot Yeah, sounds like a very similar boat that we are in with stalling out at that daily average despite being able to take more on occasion. It certainly could click at home for her! It also may not, so don’t get discouraged if she still struggles.
It’s a lot to weigh, because it sounds like she is coming home on a tube of some kind, unless something clicks in the next few weeks. I can only speak to my experience, but I know when I was at this point in the long haul, I wasn’t very pushy about the timeline of waiting until she was 45 weeks before discharging on a tube. It always felt like I was betting that she would be able to take her feeds by mouth soon and hopefully we could avoid the tube altogether. Well, we lost that bet - she came home on a tube AND she was there for probably a month longer than she really needed to be, just working on eating. I wish I hadn’t been so worried about taking her home on a tube, because I probably would have been a little pushier on challenging their timeline when it was clear she had stagnated. Just food for thought!
It’s a lot to weigh, because it sounds like she is coming home on a tube of some kind, unless something clicks in the next few weeks. I can only speak to my experience, but I know when I was at this point in the long haul, I wasn’t very pushy about the timeline of waiting until she was 45 weeks before discharging on a tube. It always felt like I was betting that she would be able to take her feeds by mouth soon and hopefully we could avoid the tube altogether. Well, we lost that bet - she came home on a tube AND she was there for probably a month longer than she really needed to be, just working on eating. I wish I hadn’t been so worried about taking her home on a tube, because I probably would have been a little pushier on challenging their timeline when it was clear she had stagnated. Just food for thought!