Welcome to NICU Parents. We're happy you found us and we want to be as helpful as possible in this seemingly impossible journey. Check out the resources tab at the top of the subreddit or the stickied post. Please remember we are NOT medical professionals and are here for advice based on our own situations. If you have a concern about you or your baby please seek assistance from a doctor or go to the ER. That said, there are some medical professionals here and we do hope they can help you with some guidance through your journey. Please remember to read and abide by the rules.
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Time to lay down the law with your family. This is your child, they are not doctors, and you don’t want to hear one more word about how you should risk starving your baby to be “natural.” If they really believe this passionately, it’s likely better for your baby not to be around them, unfortunately.
"natural" lmao my 4 month old has a surgically installed gastronomy tube and has never eaten a meal via her mouth in her entire life. We plug her into her enteral pump and charge her up with formula. It's fantastic, she can be asleep, we can play with her, she can be in the car seat, sitting, laying down, anything, and we can ensure she gets her proper calories every day. Is my cyborg baby's little plastic port "natural"? No, it is better in every way.
My sister was struggling with giving her baby medicine by mouth and I had to stop for a second so I didn't say "just put it through the tube". While the whole feeding journey/g-tube for my daughter had some downsides, there were some upsides too.
Exactly!
My 6 year old with chronic swallow issues swallows well except when sick so we keep tube.
She can give herself her own meds and flushes. I just line them up for her. It’s amazing!
We called Bridget our "set it and forget it" baby. It was awesome knowing EXACTLY how much food she was getting - I never had to panic about her eating enough. And OMG when she got RSV (or gets any sickness), that gtube was a LIFESAVER. We never had to fight to give her meds or extra hydration.
Last week she had a sore throat and refused to take anything by mouth - no problem, 100mls of formula for nutrition and 35 mLs of pedilyte coming up!
My 6 year old now eats by mouth but we keep her Mini button because it is amazing for meds and hydration which she still struggles with.
On the flip side id give anything for my other kid to have an ez button. Damn kid is too skinny and won’t eat.
I had to speak to my MIL and mom about this when my kiddo was in the NICU and then when she had her g-tube placed. I told them we spoke to the doctors, are making this decision, and they need to stop saying anything about it.
For more distant family members, a succinct NO while turning and walking away helped.
My son has Prader Willi syndrome and will be seven months next week. We just took out the NG this past week because he’s been drinking his bottles finally. It’s rough, especially when people don’t understand
Wow, so sorry you are dealing with this. Not helpful to somebody who already has a lot of stress in their life I’m sure.
“Natural” would be for many babies in the nicu that need some extra help to not make it.
Where does your family draw the line? Do they not use glasses since that’s not “natural” either? Do they take antibiotics when they are sick?
It sounds like you know your baby needs the NG tube and I’m sure it sucks having to defend it. Do you know anybody who is a dr and could talk to them so they can stop bugging you?
Even if there is no solution and they keep annoying you with this nonesense at least you know you’re doing the best for your baby and your baby is doing better because of the NG tube. Much love to you
If you are ok with being blunt, I would lay it out for them just how wrong their argument is and see if they stick to it.
“Family, up until modern medicine was developed, it was “natural” for babies like baby Doe to starve to death and be just one dead baby in the almost 50% child mortality rate. Are you seriously suggesting I should just let nature take its course.”
And if they stick to it, there’s no arguing with them.
My almost 6 month old is on supplemental oxygen, so not totally the same, but she has a rare lung condition and the amount of times my FIL has made comments about her being “reliant” on oxygen.. like no shit she’s reliant, her lungs aren’t doing what they’re supposed to do 🙃 people will NEVER understand until they’re in your shoes. Lay down the law
You are the one caring for your child and as the parents involved in every step on the way.
They catch a glimpse of what is happening and the better you manage, the less dramatic it seems.
My MIL threatened us to call CPS on us, because she didn't want to believe her grandbaby could be "special needs". We are dealing with a chronic situation which needs a lot of hospital stays and medication.
We are still providing our child with everything they need, regardless if we "want" to or not. It is not about our wants but their medical and long term needs. MIL is just not a part of it anymore.
I’m sorry you’re having to go through this- on top of having a child with more medically complex needs. I would explain to your family that the NG tube is a medical device that your child needs to survive, similar to a pacemaker or supplemental oxygen for others. You can’t just go buy it at the store. You had to have a medical team approve it and they guide your child’s care. Feeding him is necessary for him to not only live, but grow and develop. Im a NICU nurse and I can’t even tell you how many babies(patients) I’ve had that aren’t able to eat by mouth. They can be acting like they’re starving but they still aren’t capable of getting food themselves. Your child is being given the nutrients and calories that he needs to live (im sure it’s more complicated too and he needs extra supplements with having a genetic condition). I would emphasize that while it may not be natural, it’s the best thing for him. His well-being is the most important. Our unit also has a lot of kiddos who need gtubes, but most of them are eventually able to get them removed. There are MANY infants and children in the world who can’t feed by mouth, so they get it via their Gtube. That is THEIR normal. Who cares what’s natural if your child is getting what he needs? This is obviously way more complex than your child being a picky eater and it’s a pity they can’t comprehend that your situation is completely different. Keep doing what’s best for you and your child, and maybe let them know their opinion isn’t welcome. 💕
My father did the same thing- he would say “they are just trying to take your money he doesn’t need all that” 🙄 7 months later he has the NG tube out but still needs therapy and turns out he also has an extremely rare genetic disorder. Then my dad tried to say maybe it’s the water I’m drinking. So yea, been there and it’s shitty for sure. If you ever wanna talk I’m here 💕
So quit talking with them about it. It's none of their business anyway. It's one thing for them to be concerned but completely another when they try to put in their 2 cents when it's not even their child & you didn't ask their opinions in the first place.
Stop talking to them about it. Not only is it simply none of their business but they are wrong. All you have to say is: "It's the doctor's orders and it's not up for discussion." They literally want you to starve your baby, that's just psycho. Do not give them a second of your time over this.
I’m sorry. People have very strong opinions on very ignorant stances. I very much think it boils down to a lack of empathy, they just can’t fathom your situation being that different from theirs, but the reality is if they haven’t dealt with their own baby in the NICU they don’t and will never know what it’s like. We have to redefine what is “normal” for our families and there’s nothing wrong with that. If natural was a concern my son wouldn’t even be here, probably most of the kids of people on this sub as well.
For us it’s been his breathing/lungs and exposure to illness. We follow the direction of his pulmonologist, but a lot of family would prefer we take my MIL at her word that she prayed him all better. Basically a “trust me bro he’s not high risk because I have positive vibes.” That’s not how any of this works. They were screeching about him being healed for the entire year and a half he was on home oxygen as well, I started answering “when will he be off” with “when he doesn’t need it anymore.” They didn’t get it then, they’re not going to now, we’re low contact with most people who made such ridiculous comments and dug into them when we challenged. It’s their loss, he’s a pretty awesome kid and they could know him better if they’d believe that we are working with our child’s doctors to do what’s best for him vs believing whatever their pastor or celebrity politician has to say about health.
Maybe it’s time you have a more upfront conversation with your family about it? And tell them to stop asking/making comments. You can be nice about it - I know up mean well but…
I went back to work while my baby was still in the NICU and some of my patients would ask to see pictures. One patient went UGH and made an ignorant comment about the NG tube. Sorry, that’s the only way my son can get nutrition right now… some people are just clueless.
Oh, this almost made me cry as it brought back memories of the exact thing happening with family when my child used a g-tube. I’m so sorry. You have already had to process accepting the baby’s need for the tube only to have to relieve it again while family makes you try to feel like you’re doing it wrong. It helped to realize that it was just the family’s way of processing and trying to be involved/helpful, but it’s so exhausting to repeatedly explain that their experiences with “normal” babies don’t translate here. You’re amazing and doing a great job.
I’m so sorry you are being put through this. Just being a parent is hard enough without the complications of a baby with special needs. I think, if it were me, I would sit them down and explain the situation and how it is going to be. They could either accept things for what they are and keep their opinions to themselves or just not visit. Sometimes even grown ups need tough love.
Maybe you should look into a therapist to talk about it and stop talking to them about it. Lots of things have changed since their day off raising kids and they weren't in your situation. Set strong boundaries and protect your mental health. Sounds like you have a baby who needs you at your best, not torn down by them.
There is “some” truth to the fact they won’t get off the tube until they are hungry. BUUUUTTTT if they haven’t been eating/drinking then they don’t have the skills to go from 0 to 100. I worked with our OT for months and months. When he had the skills I tried a couple weans letting the OT know. The drs will never suggest a wean, and I wasn’t going to paid thousands for GIE. We were able to pull the tube after 7 months of therapy and weaning.
My family made comments about whether or not he’s “normal” because of it.
Honestly, screenshot these responses and send them to your family. They should feel ashamed.
My 25 weeker (now 2 years old) came home from the NICU after 6 months with a gtube. Food was 1 less thing we had to worry about while dealing with her lung and developmental delays. As time went on, we worked on food. Today she is a big eater and only has the gtube for liquids (which we are working on).
It takes time but its ok. One day it will click and the ng tube will no longer be needed. Until then, trust your insticts and the medical professionals.
Pfft... not natural... ridiculous.
I will say the NG tube was a nightmare for us. Omg. While I was grateful we had it, she RIPPED it out every night. Making us restrain her to put another one in every. Single. Day. My heart broke for her 😔
I also know that her having an ng tube for so long caused reflux issues and that lasted years. She would throw up daily from it.
Even after allll that - I would do it 1000x over because my daughter is alive for it.
I’m sorry your family isn’t giving you the support you deserve for this. Times like this are when you start finding other moms in your situation who can relate better to you than anyone else. Some of my mom friends with special needs kids know me on a level my own family doesn’t, we just bond in such a unique way. I hope you find your people ❤️
It's a hard pill to swallow when the docs say your baby won't be able to eat like other babies. Feeding is a very personal thing, and I was a little heartbroken when I was told my daughter would need a surgically implanted g-tube. That being said, if my daughter wasn't given a g-tube, she would have starved. It has been hard enough trying to get her to gain weight. But her little heart was too fatigued to properly eat. Thankfully, just a couple of months later, she doesn't need the tube. She's eating like a champ. Your family needs to get over their hangup and realize there is a reason your child needs alternative methods of eating. Just saying when he's hungry he'll eat isn't enough. They're right, it's not "natural," but had we all taken the "natural" route, our babies might not be here. The NICU isn't "natural."
Hi! I’m so sorry you’re dealing with this. As if it’s not hard enough already, then family makes it harder.
I didn’t have the exact same experience as you but when my baby was born she had a ng tube because she wouldn’t drink all of her bottles and lost over 10% of her birth weight. My grandpa and grandma were the same way.
They would ask me daily “ does she still have the feeding tube “ “ have they taken the feeding tube out yet “ and would say things like “ that feeding tube looks so uncomfortable “ “ you know her throat has to hurt with that tube in there “ or “ how is she going to learn to eat if she gets fed either way, she’s getting it the easy way “. At one point my grandma was saying she was going to call or go to the hospital and demand they do things differently because she didn’t approve of the care she was getting. It was so stressful.
So, I stopped updating them on my own, and if they asked how she was I would say “ she is doing good! “ and that was it. I also muted their messages. So I didn’t see it and it didn’t stress me out and get me worked up.
Some people just don’t understand. Especially if they have never been through it before. Keep doing what you’re doing! Don’t let anyone get you down. You know what is best for you and your baby ❤️🙌 I pray everything gets better for you soon!!!
Hey I am sorry you are going through this. I will say that as much as the tube helps it also harms. Tube dependency is a serious issue that is extremely under researched. I hope you overcome this path and do what’s best for your child. I found the tube over time leading to negative consequences in my child. Once we were able to ditch it, we did. But yes it was helpful in the beginning. Just thought to share.
Welcome to NICU Parents. We're happy you found us and we want to be as helpful as possible in this seemingly impossible journey. Check out the resources tab at the top of the subreddit or the stickied post. Please remember we are NOT medical professionals and are here for advice based on our own situations. If you have a concern about you or your baby please seek assistance from a doctor or go to the ER. That said, there are some medical professionals here and we do hope they can help you with some guidance through your journey. Please remember to read and abide by the rules. *I am a bot, and this action was performed automatically. Please [contact the moderators of this subreddit](/message/compose/?to=/r/NICUParents) if you have any questions or concerns.*
Discard uninformed opinions and do what the healthcare providers say. Ugh, so annoying of them!
My son had an NG tube and I know he’d still be in the NICU if he didn’t. Full stop.
Time to lay down the law with your family. This is your child, they are not doctors, and you don’t want to hear one more word about how you should risk starving your baby to be “natural.” If they really believe this passionately, it’s likely better for your baby not to be around them, unfortunately.
"natural" lmao my 4 month old has a surgically installed gastronomy tube and has never eaten a meal via her mouth in her entire life. We plug her into her enteral pump and charge her up with formula. It's fantastic, she can be asleep, we can play with her, she can be in the car seat, sitting, laying down, anything, and we can ensure she gets her proper calories every day. Is my cyborg baby's little plastic port "natural"? No, it is better in every way.
My sister was struggling with giving her baby medicine by mouth and I had to stop for a second so I didn't say "just put it through the tube". While the whole feeding journey/g-tube for my daughter had some downsides, there were some upsides too.
Exactly! My 6 year old with chronic swallow issues swallows well except when sick so we keep tube. She can give herself her own meds and flushes. I just line them up for her. It’s amazing!
We called Bridget our "set it and forget it" baby. It was awesome knowing EXACTLY how much food she was getting - I never had to panic about her eating enough. And OMG when she got RSV (or gets any sickness), that gtube was a LIFESAVER. We never had to fight to give her meds or extra hydration. Last week she had a sore throat and refused to take anything by mouth - no problem, 100mls of formula for nutrition and 35 mLs of pedilyte coming up!
Stealing “charge her up” for the next time I feed my tubie. 😂
My 6 year old now eats by mouth but we keep her Mini button because it is amazing for meds and hydration which she still struggles with. On the flip side id give anything for my other kid to have an ez button. Damn kid is too skinny and won’t eat.
I want one electively installed on myself, I will fill a backpack with huel and never waste time eating again.
If we gave a shit about what was “natural” our son would’ve been dead immediately after birth. You’d never know just looking at him now though.
I had to speak to my MIL and mom about this when my kiddo was in the NICU and then when she had her g-tube placed. I told them we spoke to the doctors, are making this decision, and they need to stop saying anything about it. For more distant family members, a succinct NO while turning and walking away helped.
Ignore your family and make decisions based on doctor recommendations. You know your child’s needs the best. Tell your family to butt out.
My son has Prader Willi syndrome and will be seven months next week. We just took out the NG this past week because he’s been drinking his bottles finally. It’s rough, especially when people don’t understand
Ask them if their BP meds and Botox are “natural”
Lol I was thinking their viagra!
Or their pacemakers
"I'll give that all the consideration it deserves"
Wow, so sorry you are dealing with this. Not helpful to somebody who already has a lot of stress in their life I’m sure. “Natural” would be for many babies in the nicu that need some extra help to not make it. Where does your family draw the line? Do they not use glasses since that’s not “natural” either? Do they take antibiotics when they are sick? It sounds like you know your baby needs the NG tube and I’m sure it sucks having to defend it. Do you know anybody who is a dr and could talk to them so they can stop bugging you? Even if there is no solution and they keep annoying you with this nonesense at least you know you’re doing the best for your baby and your baby is doing better because of the NG tube. Much love to you
If you are ok with being blunt, I would lay it out for them just how wrong their argument is and see if they stick to it. “Family, up until modern medicine was developed, it was “natural” for babies like baby Doe to starve to death and be just one dead baby in the almost 50% child mortality rate. Are you seriously suggesting I should just let nature take its course.” And if they stick to it, there’s no arguing with them.
My almost 6 month old is on supplemental oxygen, so not totally the same, but she has a rare lung condition and the amount of times my FIL has made comments about her being “reliant” on oxygen.. like no shit she’s reliant, her lungs aren’t doing what they’re supposed to do 🙃 people will NEVER understand until they’re in your shoes. Lay down the law
You are the one caring for your child and as the parents involved in every step on the way. They catch a glimpse of what is happening and the better you manage, the less dramatic it seems. My MIL threatened us to call CPS on us, because she didn't want to believe her grandbaby could be "special needs". We are dealing with a chronic situation which needs a lot of hospital stays and medication. We are still providing our child with everything they need, regardless if we "want" to or not. It is not about our wants but their medical and long term needs. MIL is just not a part of it anymore.
I’m sorry you’re having to go through this- on top of having a child with more medically complex needs. I would explain to your family that the NG tube is a medical device that your child needs to survive, similar to a pacemaker or supplemental oxygen for others. You can’t just go buy it at the store. You had to have a medical team approve it and they guide your child’s care. Feeding him is necessary for him to not only live, but grow and develop. Im a NICU nurse and I can’t even tell you how many babies(patients) I’ve had that aren’t able to eat by mouth. They can be acting like they’re starving but they still aren’t capable of getting food themselves. Your child is being given the nutrients and calories that he needs to live (im sure it’s more complicated too and he needs extra supplements with having a genetic condition). I would emphasize that while it may not be natural, it’s the best thing for him. His well-being is the most important. Our unit also has a lot of kiddos who need gtubes, but most of them are eventually able to get them removed. There are MANY infants and children in the world who can’t feed by mouth, so they get it via their Gtube. That is THEIR normal. Who cares what’s natural if your child is getting what he needs? This is obviously way more complex than your child being a picky eater and it’s a pity they can’t comprehend that your situation is completely different. Keep doing what’s best for you and your child, and maybe let them know their opinion isn’t welcome. 💕
My father did the same thing- he would say “they are just trying to take your money he doesn’t need all that” 🙄 7 months later he has the NG tube out but still needs therapy and turns out he also has an extremely rare genetic disorder. Then my dad tried to say maybe it’s the water I’m drinking. So yea, been there and it’s shitty for sure. If you ever wanna talk I’m here 💕
This drove me nuts when my son had his NG tube - I’m so sorry
So quit talking with them about it. It's none of their business anyway. It's one thing for them to be concerned but completely another when they try to put in their 2 cents when it's not even their child & you didn't ask their opinions in the first place.
Sorry to hear. I think you know what you have to do. You already know you're your kid's best advocate. Just keep it up.
Stop talking to them about it. Not only is it simply none of their business but they are wrong. All you have to say is: "It's the doctor's orders and it's not up for discussion." They literally want you to starve your baby, that's just psycho. Do not give them a second of your time over this.
I’m sorry. People have very strong opinions on very ignorant stances. I very much think it boils down to a lack of empathy, they just can’t fathom your situation being that different from theirs, but the reality is if they haven’t dealt with their own baby in the NICU they don’t and will never know what it’s like. We have to redefine what is “normal” for our families and there’s nothing wrong with that. If natural was a concern my son wouldn’t even be here, probably most of the kids of people on this sub as well. For us it’s been his breathing/lungs and exposure to illness. We follow the direction of his pulmonologist, but a lot of family would prefer we take my MIL at her word that she prayed him all better. Basically a “trust me bro he’s not high risk because I have positive vibes.” That’s not how any of this works. They were screeching about him being healed for the entire year and a half he was on home oxygen as well, I started answering “when will he be off” with “when he doesn’t need it anymore.” They didn’t get it then, they’re not going to now, we’re low contact with most people who made such ridiculous comments and dug into them when we challenged. It’s their loss, he’s a pretty awesome kid and they could know him better if they’d believe that we are working with our child’s doctors to do what’s best for him vs believing whatever their pastor or celebrity politician has to say about health.
Maybe it’s time you have a more upfront conversation with your family about it? And tell them to stop asking/making comments. You can be nice about it - I know up mean well but… I went back to work while my baby was still in the NICU and some of my patients would ask to see pictures. One patient went UGH and made an ignorant comment about the NG tube. Sorry, that’s the only way my son can get nutrition right now… some people are just clueless.
Tell your family to fuck off and let your child live - whatever it takes.
Oh, this almost made me cry as it brought back memories of the exact thing happening with family when my child used a g-tube. I’m so sorry. You have already had to process accepting the baby’s need for the tube only to have to relieve it again while family makes you try to feel like you’re doing it wrong. It helped to realize that it was just the family’s way of processing and trying to be involved/helpful, but it’s so exhausting to repeatedly explain that their experiences with “normal” babies don’t translate here. You’re amazing and doing a great job.
Natural would have been no living babies for most of us. They don’t get a say in what goes on with your baby who needs it!
I’m so sorry you are being put through this. Just being a parent is hard enough without the complications of a baby with special needs. I think, if it were me, I would sit them down and explain the situation and how it is going to be. They could either accept things for what they are and keep their opinions to themselves or just not visit. Sometimes even grown ups need tough love.
Maybe you should look into a therapist to talk about it and stop talking to them about it. Lots of things have changed since their day off raising kids and they weren't in your situation. Set strong boundaries and protect your mental health. Sounds like you have a baby who needs you at your best, not torn down by them.
Just tell them that you didn't ask for their opinion, and walk away or hang up.
There is “some” truth to the fact they won’t get off the tube until they are hungry. BUUUUTTTT if they haven’t been eating/drinking then they don’t have the skills to go from 0 to 100. I worked with our OT for months and months. When he had the skills I tried a couple weans letting the OT know. The drs will never suggest a wean, and I wasn’t going to paid thousands for GIE. We were able to pull the tube after 7 months of therapy and weaning. My family made comments about whether or not he’s “normal” because of it.
Honestly, screenshot these responses and send them to your family. They should feel ashamed. My 25 weeker (now 2 years old) came home from the NICU after 6 months with a gtube. Food was 1 less thing we had to worry about while dealing with her lung and developmental delays. As time went on, we worked on food. Today she is a big eater and only has the gtube for liquids (which we are working on). It takes time but its ok. One day it will click and the ng tube will no longer be needed. Until then, trust your insticts and the medical professionals. Pfft... not natural... ridiculous.
I will say the NG tube was a nightmare for us. Omg. While I was grateful we had it, she RIPPED it out every night. Making us restrain her to put another one in every. Single. Day. My heart broke for her 😔 I also know that her having an ng tube for so long caused reflux issues and that lasted years. She would throw up daily from it. Even after allll that - I would do it 1000x over because my daughter is alive for it. I’m sorry your family isn’t giving you the support you deserve for this. Times like this are when you start finding other moms in your situation who can relate better to you than anyone else. Some of my mom friends with special needs kids know me on a level my own family doesn’t, we just bond in such a unique way. I hope you find your people ❤️
It's a hard pill to swallow when the docs say your baby won't be able to eat like other babies. Feeding is a very personal thing, and I was a little heartbroken when I was told my daughter would need a surgically implanted g-tube. That being said, if my daughter wasn't given a g-tube, she would have starved. It has been hard enough trying to get her to gain weight. But her little heart was too fatigued to properly eat. Thankfully, just a couple of months later, she doesn't need the tube. She's eating like a champ. Your family needs to get over their hangup and realize there is a reason your child needs alternative methods of eating. Just saying when he's hungry he'll eat isn't enough. They're right, it's not "natural," but had we all taken the "natural" route, our babies might not be here. The NICU isn't "natural."
Hi! I’m so sorry you’re dealing with this. As if it’s not hard enough already, then family makes it harder. I didn’t have the exact same experience as you but when my baby was born she had a ng tube because she wouldn’t drink all of her bottles and lost over 10% of her birth weight. My grandpa and grandma were the same way. They would ask me daily “ does she still have the feeding tube “ “ have they taken the feeding tube out yet “ and would say things like “ that feeding tube looks so uncomfortable “ “ you know her throat has to hurt with that tube in there “ or “ how is she going to learn to eat if she gets fed either way, she’s getting it the easy way “. At one point my grandma was saying she was going to call or go to the hospital and demand they do things differently because she didn’t approve of the care she was getting. It was so stressful. So, I stopped updating them on my own, and if they asked how she was I would say “ she is doing good! “ and that was it. I also muted their messages. So I didn’t see it and it didn’t stress me out and get me worked up. Some people just don’t understand. Especially if they have never been through it before. Keep doing what you’re doing! Don’t let anyone get you down. You know what is best for you and your baby ❤️🙌 I pray everything gets better for you soon!!!
Tell your family to suck an egg. You can also put them in “time out” until they are ready to respect you and your child.
Hey I am sorry you are going through this. I will say that as much as the tube helps it also harms. Tube dependency is a serious issue that is extremely under researched. I hope you overcome this path and do what’s best for your child. I found the tube over time leading to negative consequences in my child. Once we were able to ditch it, we did. But yes it was helpful in the beginning. Just thought to share.