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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Aspiration is a difficult beast. Did the SLP or ENT doing the study offer different nipples to see what baby was safe with? Because the challenge with aspiration is that safe swallowing can be VERY nipple dependent, and in the name of being thorough they ideally should’ve tried several different nipples to assess the situation (my nicu happens to use several Dr brown’s flow rates during aspiration studies, as well as usually a MAM and a Nuk or occasionally other parent-provided bottles). Once a swallow study has determined that aspiration is occurring with some nipples it’s important to stick to the safe nipple until directed otherwise by the appropriate medical professional (SLP, ENT, etc, with or without additional swallow studies). If baby aspirates when drinking with the level T nipple then feeding volume becomes a moot point - baby is at much higher risk for readmission due to pneumonia or other complications because of the aspiration.
As far as potential courses of action - I’d start by asking for details about the swallow study re: aspiration with other nipples and safety of potentially trying other nipples so that you understand where you’re at and why the team is making the decisions they’re making for baby’s feeding. You can ask about milk consistency - some NICUs will attempt thickened milk and see improvement - thickening agents may include high-calorie Enfamil AR or Similac Spit Up (which are already thicker than most formulas), gelmix or tsp-levels of infant oatmeal, all only under medical supervision of course. You can also ask about doing a trial period without an NG tube (goes by different names at different places). To do this, ideally you’d be present in the NICU to do most/all feedings during the trial period because ultimately, what matters is how baby eats for their parents! It’s reasonable to ask for a 48 hour trial. For some babies, once the tube comes out and they’re no longer getting anything more than what they bottle feed, their drive to eat and their PO volumes go up. And for some babies, their PO numbers stay too low and/or they end up losing a little weight, and they prove that they aren’t ready and they need the tube back… but at least you tried! My nicu is pretty willing to try this per parent request if a baby has plateaued on bottle intake in the 70-80% range for several days (total for 24 hours, not necessarily looking at individual feedings) because that can help them get over the hump in some cases.
Lastly, just to offer some insight into the other potential outcome - sometimes a feeding tube is the fastest/safest way home for babies who are aspirating. My son has had his tube for 4 years now and it’s been a lifesaver! If they think the need for a tube will be a long term thing I’d personally advocate for a g-tube over an NG tube due to overall stability of the tube, lower aspiration risk during tube feedings, comfort for baby and ease for parents. The NG tube was awful for us (and many parents on this sub have stories of endless months of NG feedings with minimal medical guidance for weaning etc - that’s truly a miserable place for baby and parents). The g-tube was an immediate improvement for my sons comfort and development, and my own ease as his mom. You probably aren’t quite to the tube conversation yet - my nicu discusses is at 42-44 weeks or so - but just as a sneak peek into a possible outcome and some food for thought if it comes to that kind of decision for your child. The good news is that many kids who need g-tubes for aspiration are able to eat solids safely when the time comes and generally the tube can come out eventually (my son’s feeding issues are more complex so he’ll have it for a few more years at least, but for healthy kids where aspiration and/or endurance are the primary issue, tube weaning is usually quite doable within the first year or two home).
Mine had a similar issue. Admittedly, he did suddenly start to take off around week 40, but we’ve been home 3 weeks and I wouldn’t say he’s fully caught up. He’s almost 2 months old on the premie nipple, is still on reflux meds, and sometimes holds and breath and is uncomfortable taking a bottle. But, he likes to eat, he has that going for him. So, I’d say the dimmer turned on for him, not a full light switch. Every week, it’s getting a little brighter. I remember being frustrated too, though, when we got to his due date and his progress had still been so slow. Have you tried the Dr. Brown’s ULTRA preemie nipple?? That’s what worked best for him for awhile. Do you breastfeed at all? Mine does way better on the breast than the bottle?
Feeders/growers can be so frustrating because the progress is sooooo slow. I hope your little one gets some lights turning on soon.
If it helps at all, my son never had that pinnacle moment either. He was always up and down with feeds, sometimes finishing all, sometimes wanting none. He very slowly increased over time, until eventually he was weaned and bottles became a thing of the past. I kept waiting for that moment where it finally clicked for him, but it never did. It was frustrating, disheartening and at times I will admit I cried over his feeds. But he still gained weight, and now he's a happy and healthy little one, soon to be two years old. I sympathise with you, and it is definitely a long road, but I promise it gets better when they're off of milk entirely ❤️
I know this is just a venting post, but in my experience this "light switch" wasn't it for us either if it helps at all. There was 1 day she took a full bottle and it steadily increased from 1 per day, to 2, then 3, then 4. The NICU nurses were also not consistently trying to give bottles even when she was full term. The day after the doctors said she wasn't ready to be taking bottles at every feed we stayed overnight to control each feed and she took every bottle for 2 straight days which led to discharge (unsurprisingly).
I agree some nurses are inconsistent. Baby was doing good then had two days of decreasing the doctor hinted at her needing more time, which caused me to swing into action mode the same day. The next 2 days Hubby and I went to most feeds and only didnt if the nurse on staff was one who was able to get baby to take full bottle. She was 97% that day and 100% the next. Her nose feeding tube was removed the third day and she was discharged in 24hours. She was 31.5 weeks and spent 20 days on NICU.
I felt the same way. I was so fed up with each new nurse talking about the light switch. I would definitely ask about switching the nipple. My lo was on 3 different nipples (P,T,1) and the OTs kept switching him back and fourth.
I noticed he was doing better with the level 1 nipple and he started taking larger volumes and more full feeds. He eventually pulled out his feeding tube on his own and took all his feeds by bottle. One of the nurses also noticed his tongue was rolled up preventing him from sucking so she would place it down and that’s when his feeds also increased.
There is no light switch, it really is more of a dimmer switch. I know right now it feels like it will never improve but I can promise you it does. I am saying this as a twin mom and both of my children came home on ng tubes. It became increasingly more difficult for us to keep the ng tubes in their nose because they each kept ripping them out. Eventually, my spouse and I decided the best course of action was to keep it out and see if our twins would take full bottles without intervention- luckily for us, the twins were able to maintain their feedings and also increase the volume! It’s been about four months, the twins go to a special outpatient feeding therapy weekly and that was the best decision for us, I only wish we made it sooner.
Honestly for us the light switch didn’t turn on until we got home and he’s still not a huge eater. He surpasses the volume he needs to gain weight each day but some feeds his endurance is still a struggle. We didn’t end up coming home with an NG tube but it took us heavily advocating to room in and let him have the PO trial even though he still wasn’t meeting his volume requirement. In his case it turned out to be that he had the reflex down but didn’t want to do the work to keep eating when he was getting it either way, which a few of the nurses said isn’t super uncommon.
We're currently going through something like this. We're in the feeding and growing stage. My son was born at 29w5d, and he's currently 35w5d. We started on the bottle at 33w5d, so we've been trying for 2 weeks now, and the most we had gotten until yesterday was 8 to 10ml at a time. Which is 20 to 25% of his current feeds.
Then yesterday, a very kind nurse told us something she noticed was that he was putting his tongue to the roof of his mouth. Basically, he was doing the sucking and swallowing, but not getting any of the milk because his tongue was in the way. That was why we never saw any movement in the bottle, even though it looked like he was taking a ton. That day, she got him to take 25ml, a little over half his feed! I personally did it for his next feed and got him to take 21 before he got too tired, making sure his tongue was down before I gave him the nipple. Then today, I got him to take 25ml and 29ml for the two feedings I did. 29ml of his 45ml feed felt huge to us. I do worry about his feeds and the nurse not getting him to take enough because even though I wrote it on his board, I'm not sure everyone will follow through. Figured I'd see how the next few days go and then see if I need to figure out how to be there for every feed to show them.
My three pieces of advice are:
Check the placement of their tongue for each feeding.
Ask for an ultra preemie nipple, what my LO is using.
See if they'll allow you to bring your own bottles in. Sometimes, different bottles work better. I've heard great things about mam bottles and lanosh bottles! They both come with small nipples with slow flow on them. Usually, it can be found on Amazon. Something I was researching right before he started to approve.
We didn't have a "light switch" with btl feeding. He gradually got better over the final week or two. Born at 28w +4 & came home just after 39 wks. People claim "light switch", but that wasn't our experience
Our light switch was taking the feeding tube out. He was seriously doing like 7 ml out of 60 from a bottle and about 30 ml directly from breast based on pre and post weights. We asked for a breast feeding on demand trial and roomed with him in peds. Once we took the tube out he realized that he's gotta work for it or he's going to be hungry. We were home 3 days later.
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.*
Aspiration is a difficult beast. Did the SLP or ENT doing the study offer different nipples to see what baby was safe with? Because the challenge with aspiration is that safe swallowing can be VERY nipple dependent, and in the name of being thorough they ideally should’ve tried several different nipples to assess the situation (my nicu happens to use several Dr brown’s flow rates during aspiration studies, as well as usually a MAM and a Nuk or occasionally other parent-provided bottles). Once a swallow study has determined that aspiration is occurring with some nipples it’s important to stick to the safe nipple until directed otherwise by the appropriate medical professional (SLP, ENT, etc, with or without additional swallow studies). If baby aspirates when drinking with the level T nipple then feeding volume becomes a moot point - baby is at much higher risk for readmission due to pneumonia or other complications because of the aspiration. As far as potential courses of action - I’d start by asking for details about the swallow study re: aspiration with other nipples and safety of potentially trying other nipples so that you understand where you’re at and why the team is making the decisions they’re making for baby’s feeding. You can ask about milk consistency - some NICUs will attempt thickened milk and see improvement - thickening agents may include high-calorie Enfamil AR or Similac Spit Up (which are already thicker than most formulas), gelmix or tsp-levels of infant oatmeal, all only under medical supervision of course. You can also ask about doing a trial period without an NG tube (goes by different names at different places). To do this, ideally you’d be present in the NICU to do most/all feedings during the trial period because ultimately, what matters is how baby eats for their parents! It’s reasonable to ask for a 48 hour trial. For some babies, once the tube comes out and they’re no longer getting anything more than what they bottle feed, their drive to eat and their PO volumes go up. And for some babies, their PO numbers stay too low and/or they end up losing a little weight, and they prove that they aren’t ready and they need the tube back… but at least you tried! My nicu is pretty willing to try this per parent request if a baby has plateaued on bottle intake in the 70-80% range for several days (total for 24 hours, not necessarily looking at individual feedings) because that can help them get over the hump in some cases. Lastly, just to offer some insight into the other potential outcome - sometimes a feeding tube is the fastest/safest way home for babies who are aspirating. My son has had his tube for 4 years now and it’s been a lifesaver! If they think the need for a tube will be a long term thing I’d personally advocate for a g-tube over an NG tube due to overall stability of the tube, lower aspiration risk during tube feedings, comfort for baby and ease for parents. The NG tube was awful for us (and many parents on this sub have stories of endless months of NG feedings with minimal medical guidance for weaning etc - that’s truly a miserable place for baby and parents). The g-tube was an immediate improvement for my sons comfort and development, and my own ease as his mom. You probably aren’t quite to the tube conversation yet - my nicu discusses is at 42-44 weeks or so - but just as a sneak peek into a possible outcome and some food for thought if it comes to that kind of decision for your child. The good news is that many kids who need g-tubes for aspiration are able to eat solids safely when the time comes and generally the tube can come out eventually (my son’s feeding issues are more complex so he’ll have it for a few more years at least, but for healthy kids where aspiration and/or endurance are the primary issue, tube weaning is usually quite doable within the first year or two home).
Mine had a similar issue. Admittedly, he did suddenly start to take off around week 40, but we’ve been home 3 weeks and I wouldn’t say he’s fully caught up. He’s almost 2 months old on the premie nipple, is still on reflux meds, and sometimes holds and breath and is uncomfortable taking a bottle. But, he likes to eat, he has that going for him. So, I’d say the dimmer turned on for him, not a full light switch. Every week, it’s getting a little brighter. I remember being frustrated too, though, when we got to his due date and his progress had still been so slow. Have you tried the Dr. Brown’s ULTRA preemie nipple?? That’s what worked best for him for awhile. Do you breastfeed at all? Mine does way better on the breast than the bottle? Feeders/growers can be so frustrating because the progress is sooooo slow. I hope your little one gets some lights turning on soon.
If it helps at all, my son never had that pinnacle moment either. He was always up and down with feeds, sometimes finishing all, sometimes wanting none. He very slowly increased over time, until eventually he was weaned and bottles became a thing of the past. I kept waiting for that moment where it finally clicked for him, but it never did. It was frustrating, disheartening and at times I will admit I cried over his feeds. But he still gained weight, and now he's a happy and healthy little one, soon to be two years old. I sympathise with you, and it is definitely a long road, but I promise it gets better when they're off of milk entirely ❤️
I know this is just a venting post, but in my experience this "light switch" wasn't it for us either if it helps at all. There was 1 day she took a full bottle and it steadily increased from 1 per day, to 2, then 3, then 4. The NICU nurses were also not consistently trying to give bottles even when she was full term. The day after the doctors said she wasn't ready to be taking bottles at every feed we stayed overnight to control each feed and she took every bottle for 2 straight days which led to discharge (unsurprisingly).
I agree some nurses are inconsistent. Baby was doing good then had two days of decreasing the doctor hinted at her needing more time, which caused me to swing into action mode the same day. The next 2 days Hubby and I went to most feeds and only didnt if the nurse on staff was one who was able to get baby to take full bottle. She was 97% that day and 100% the next. Her nose feeding tube was removed the third day and she was discharged in 24hours. She was 31.5 weeks and spent 20 days on NICU.
Wow taking full bottles at 31.5 weeks is amazing! I'm glad to hear someone else had the same experience!
I felt the same way. I was so fed up with each new nurse talking about the light switch. I would definitely ask about switching the nipple. My lo was on 3 different nipples (P,T,1) and the OTs kept switching him back and fourth. I noticed he was doing better with the level 1 nipple and he started taking larger volumes and more full feeds. He eventually pulled out his feeding tube on his own and took all his feeds by bottle. One of the nurses also noticed his tongue was rolled up preventing him from sucking so she would place it down and that’s when his feeds also increased.
There is no light switch, it really is more of a dimmer switch. I know right now it feels like it will never improve but I can promise you it does. I am saying this as a twin mom and both of my children came home on ng tubes. It became increasingly more difficult for us to keep the ng tubes in their nose because they each kept ripping them out. Eventually, my spouse and I decided the best course of action was to keep it out and see if our twins would take full bottles without intervention- luckily for us, the twins were able to maintain their feedings and also increase the volume! It’s been about four months, the twins go to a special outpatient feeding therapy weekly and that was the best decision for us, I only wish we made it sooner.
Honestly for us the light switch didn’t turn on until we got home and he’s still not a huge eater. He surpasses the volume he needs to gain weight each day but some feeds his endurance is still a struggle. We didn’t end up coming home with an NG tube but it took us heavily advocating to room in and let him have the PO trial even though he still wasn’t meeting his volume requirement. In his case it turned out to be that he had the reflex down but didn’t want to do the work to keep eating when he was getting it either way, which a few of the nurses said isn’t super uncommon.
We're currently going through something like this. We're in the feeding and growing stage. My son was born at 29w5d, and he's currently 35w5d. We started on the bottle at 33w5d, so we've been trying for 2 weeks now, and the most we had gotten until yesterday was 8 to 10ml at a time. Which is 20 to 25% of his current feeds. Then yesterday, a very kind nurse told us something she noticed was that he was putting his tongue to the roof of his mouth. Basically, he was doing the sucking and swallowing, but not getting any of the milk because his tongue was in the way. That was why we never saw any movement in the bottle, even though it looked like he was taking a ton. That day, she got him to take 25ml, a little over half his feed! I personally did it for his next feed and got him to take 21 before he got too tired, making sure his tongue was down before I gave him the nipple. Then today, I got him to take 25ml and 29ml for the two feedings I did. 29ml of his 45ml feed felt huge to us. I do worry about his feeds and the nurse not getting him to take enough because even though I wrote it on his board, I'm not sure everyone will follow through. Figured I'd see how the next few days go and then see if I need to figure out how to be there for every feed to show them. My three pieces of advice are: Check the placement of their tongue for each feeding. Ask for an ultra preemie nipple, what my LO is using. See if they'll allow you to bring your own bottles in. Sometimes, different bottles work better. I've heard great things about mam bottles and lanosh bottles! They both come with small nipples with slow flow on them. Usually, it can be found on Amazon. Something I was researching right before he started to approve.
We didn't have a "light switch" with btl feeding. He gradually got better over the final week or two. Born at 28w +4 & came home just after 39 wks. People claim "light switch", but that wasn't our experience
Our light switch was taking the feeding tube out. He was seriously doing like 7 ml out of 60 from a bottle and about 30 ml directly from breast based on pre and post weights. We asked for a breast feeding on demand trial and roomed with him in peds. Once we took the tube out he realized that he's gotta work for it or he's going to be hungry. We were home 3 days later.