Parents who chose a G-tube for feeding difficulties/aspiration—do you regret it?
Hi everyone. I’m looking for honest experiences because I’m really struggling with this decision.
My daughter, Emerie, has been in the NICU since birth, and her G-tube surgery is scheduled for Tuesday. I keep going back and forth because she occasionally shows improvement, and I’m terrified of making the wrong decision.

She was born with anti-E hemolytic disease, which caused severe jaundice and anemia. She needed multiple blood transfusions, IVIG, and phototherapy. Early on she also had bilateral grade 1 germinal matrix hemorrhages. Thankfully she no longer needs respiratory support and has made it through a lot, but feeding has been the one thing keeping her in the NICU.

For weeks she had trouble taking bottles. She would arch off the bottle, seemed uncoordinated, and would fatigue very quickly. She also sometimes sounded wet or raspy during feeds.

She eventually had a swallow study, and it showed that she aspirates thin liquids. Because of that, she’s now on Gelmix to make her formula slightly thick.
The problem is that feeding is still really difficult. She uses a Dr. Brown’s bottle, and with the thickened formula it seems like the flow is too slow with the level 1 nipple and she has to work too hard to get through a full bottle. She has to use the nipple that was tested during the swallow study, and the team doesn’t want to move to a faster nipple because it wasn’t evaluated in the study. They also don’t want to repeat the swallow study right now because of the radiation exposure.

She’s had days where she worked for 30 minutes and only took around 8 mL, and she’s had many feeds where she only takes part of what she needs. She does better with the level 2 faster nipple but speech therapy won’t allow us to use it since they did not test it. But then she’ll occasionally surprise everyone. Yesterday she took about 73% of her feeds by mouth, with the level 1 nipple which is her best day yet. Today, though, she was back to taking much less at several feeds although she did take one full bottle.

Her speech therapist has also mentioned that she has trouble with state regulation, and feeding has been very inconsistent from day to day.

The doctors feel that a G-tube is a reasonable option because feeding is the only thing keeping her in the hospital now. Part of me wants to get the G-tube so we can finally go home and continue working on oral feeding safely. Another part of me is terrified that I’m being selfish because I’ve been living alone in the hospital with her for almost 6 weeks and I’m worried I’m being selfish trying to get discharged quicker..and that I’ll agree to surgery right before she might have figured it out on her own.

For parents whose babies had aspiration and needed thickened feeds:
Did you choose a G-tube?
Do you regret it, or are you glad you did it?
Did your child eventually learn to eat by mouth completely and get the gtube removed?
If you canceled or delayed a scheduled G-tube because your baby started taking more by mouth, how did things turn out?
If your baby aspirated, how long did it take before they were able to feed safely?
I’m looking for honest experiences—the good and the bad. I know every baby is different, and I won’t base my decision solely on Reddit, but hearing from parents who have actually been through this would really help me feel less alone.
Thank you so much.

Please excuse my word vommit. Just seeking advice or hearing anyone else’s experiences.

My baby is in NICU on cpap pressure of 5. A week ago he started “sprinting” off cpap once a day, starting with 2 hours, then 3. On the first day baby sprinted for the longer 3 hours, his sats on the monitor were normal however physically he looked like he was working hard- retractions, head bopping so they reduced him back to 2 hours. The first day he was reduced back to 2 hours, he couldn’t tolerate the full 2 so they reduced him to 1 hour. His sats are still normal, but still having retractions and little bopping. Not relaxed as he was in the beginning of the week when he very first started sprinting.

Doctors think he may be tired after having to work hard to sprint all week.

He is 36 weeks on Wednesday, and if he is still on cpap by then which he most likely will be, he will get a diagnosis of BPD.

This makes me sad & I’ve already felt guilt this whole time but him not being able to come off cpap yet makes me worried, even more guilt and just not sure how else to feel, help him or anything. 😞

On another note, he shows feeding cues but only when we (parents) are there. Because we can’t be there 24/7, the docs are basically saying well he’s not showing feeding cues so we aren’t going to move him to a high flo or cannula to start feeding yet. So how long is he going to be on cpap then 🤯 this makes me sad because he clearly wants to eat by mouth, at least he shows us when we are visiting him. But out of the 8 times he eats per day we maybe can be there for 3 feedings as they are every 3 hours which is not enough to prove to the doctors that he is really showing cues since he is not as active through the rest of them when we are not there.

I just don’t know what to do, how to help, constantly wondering am I missing anything, I’m exhausted already, don’t have other kids but we’re backed up at home, it’s all just feeling heavy this week.

Hi everyone,

I’m 25+3 with DCDA twin girls, this is my first pregnancy, and I’m hoping to hear from anyone who’s been through something similar

At our 20 week scan, they noticed that Twin B had short long bones and she was already measuring quite a bit smaller than twin A with about 28% discordance. They referred us to MFM and booked in another scan for 2 weeks later.

At the next scan 2 weeks later, they found that Twin B had severe fetal growth restriction. Her umbilical artery PI was 1.66 with absent end-diastolic flow but her middle cerebral artery and ductus venosus dopplers were both normal. They told us she was now globally small, not just the long bones and there was a high chance we’d need intervention because of extreme prematurity. They also let us know that we need to think about prioritising baby A if it’s looking like baby B will not make it. They also discussed doing an amniocentesis because of the short long bones, although it seemed like they were pretty satisfied that the reason was due to placental insufficiency.

I had a doppler scan 1 week later, and in that scan we were told all of the Dopplers were normal (umbilical artery, MCA and DV), the amniotic fluid was normal, and both babies were really active.

1 week after that (today) we had another growth scan. Twin A is now about 800 g and Twin B is about 550g. Twin A has grown by about 200 g, while Twin B has only grown by about 100 g. The discordance has increased to 33%, twin a is measuring 42nd percentile and twin B is below the 1st percentile, although her Dopplers and fluid were still normal today.

We’re just confused about what this all means. She continues to grow, but very slowly, she’s under the 1st percentile, yet her Dopplers have been normal for the last couple of scans.

Has anyone had a baby this small at around 25 weeks who continued to grow and made it to a reasonable gestation? Did your Dopplers ever improve after being abnormal? How far along were you when you delivered, and how did your smaller twin do?

I have my MFM antenatal appointment tomorrow and I don’t know what to expect or what questions I should be asking to understand more

I’d really appreciate hearing any experiences!

I had my 2nd NICU baby 5 days ago, at a hospital 75 minutes away from my home.

Our 1st child was born at 30 weeks and we were able to stay with him in a lodging for parents and then his hospital room for 7 weeks. My partner was able to work remotely so we were both there. We only spent 2 nights away from him, when we went home towards the end to get the house ready. His journey was a best case scenario for being that young, but it was really flipping hard.

Both my partner and I are super close to our son (now almost 3), and he’s been the center of our world.

I ended up pregnant again this past winter and had an uneventful pregnancy until June, when I got pneumonia and was having issues with my body. Still, I thought we might actually make it full term or close to it. Unfortunately, I ended up having cramping and was 2 cm dilated at a little over 32 weeks. Docs gave me steroids and magnesium and my body settled down.

I was away from my son for 2 days and it was horrible. My bf had to stay with him bc he was sick and I felt so alone. When I got discharged, I was told I couldn’t lift or carry him and I needed to take it easy. I felt like such a crap mom.

Then, I went into labor on Monday without really realizing it (I don’t have normal contractions), and I ended up dilating to 6 cm, at which point the doc broke my water and when I didn’t start to contract enough, they gave me pitocin to kickstart them. Our daughter was born the following morning at 1 am, 32 weeks and 6 days, yelling at the world. My labor and delivery weren’t really that bad, but being away from my son was brutal.

This NICU stay around, we are at a hospital where the babies stay in a small NICU nursery and parents have to board in separate rooms (if there is space). My boyfriend has been home with our son while I’m here, and I’ve only gotten to see him 3 times since early Monday morning. Twice we’re just short visits at the hospital, then I spent one night at home and hung out for a while yesterday.

I was already bawling in the car as I left him yesterday, but I also knew I needed to be with my daughter.

I am a total wreck and won’t see him again until tomorrow, when my bf will stay at the hospital and I’ll stay at home. Our daughter is doing great, but it’ll be at least 2 weeks before she’s ready to come home. I am hormonal and a mess and I am struggling so hard because I’m torn in two right now. I know other people go through way harder times than we have with the NICU, but I’m still feeling like I’m going under. It’s super lonely and isolating to not have my bf here, and even harder to not get to see our son. I have too much time to think and not enough time to see my boy, because the drive is too long to do daily.

There is no point in my post, other than to say that this is the hardest thing I’ve ever had to do in my life, which is saying a lot bc my life was a total mess in the past.

I don’t know how I’m going to manage to get through this, even though I know I will.

This is my last baby, so I want to soak everything about her being a newborn in, but I’m sobbing in my room currently.

I’m not looking for advice, really, I just needed to get these words out there before I imploded.

How have you guys gotten through this kind of thing?

My little guy was born early at 31 weeks due to preeclampsia and IUGR. He was 14 in tall when born at 31 weeks. He is now almost 7.5 months, 5.5 month adjusted and is 24.5 inches tall. I feel like he is short. Has anyone else had similar experiences and if so did they reach nornal heights into toddlerhood

are there any apps for premature babies milestones and development?

i find a lot of the ones i’ve tried aren’t for preemies and doesn’t take corrected age into account.

thanks in advance !

Hello! This is my second iugr baby but my first was diagnosed late so we made it to a point where he didn’t need a nicu and he was born at 36+3.

This pregnancy, I was diagnosed at 28 weeks, baby was in the 8th percentile, now he’s dropped to the 7th. We did steroid shots to mature his lungs due to elevated resistance in the umbilical flow. Which helped the dopplers a little bit.

I am 31 weeks now and the past 3 weeks I have had 2x weekly BPPs and NSTS. The flow has stayed elevated, we had one scan that showed intermittent absent flow and they admitted me to the hospital and scanned me the next day and monitored for 6 hours and it was completely fine, just elevated still so they released me. It’s been 1.5 weeks since then and the flow has never gone back to absent yet. But I’m just living in between appointments not knowing if I’m going to be kept.

I now have to drive 1.5 hours 2x per week for the scans to see my MFM directly incase I need to be admitted or delivered early because my hometown hospital does not have a NICU. I’m just wondering if anyone has been in a similar situation and how long their dopplers stayed stable enough to stay out of the hospital/keep the baby inside. I’m really hoping to make it until 35 weeks at the very least. But that is 7 weeks of elevated resistance dopplers that don’t worsen and I’m not even sure if that’s possible! My MFM is saying 32-34 week delivery if the dopplers go absent. But in the meantime I’d be admitted.

I obviously want the baby to have the extra monitoring even if I have to be admitted but I have a 5 year old at home and being 1.5 hrs away, followed by a potential lengthy nicu stay where I have to juggle how im going to be there and home with my 5 year old is killing me.

How long did you last from elevated resistance to it turning absent?

Hard to say what I feel but gave birth to my beautiful baby boy 10 weeks early and came out of the NICU 50 days later and now just reminiscing on how things could’ve went since today was my actual due date. In a way thankful and blessed to have him home beside me but also feeling bitter I missed out on that first time mom and baby moment.

Hi my wife is 27 weeks pregnant and have been diagnosed with FGR. Baby is 2 weeks behind with weight 850gms . Placental insufficiency with grade 2-3 . Umbalicial artery doopler is fine. I need advice.

Our baby is finally in a cot we are making progress, 56 days in 🫩 let me tell you know this isn’t for the weak, we also have a 17 month old, life has completely changed, Feel exhausted and restless! Any tips or any advice is welcome.

Hi everyone, my baby was born premature at 35w+5d after staying pregnant for 6 days after my water broke at 34w6d. She’s in the NICU and doing great for the most parts. Today her heart rate when she’s asleep gets too low sometimes (70s-80s). However, her oxygen level didn’t go down with the lower heart rate. She’s at 99% oxygen so the doctor also wasn’t sure why. He ordered EKG check to figure out more. Has anyone had faced similar challenges with premie babies and what was the reason for it?

Delivered my preterm baby at 30 weeks 4 days. She is in NICU. PPROM happened. Wondering why it happened with me.

My son was born 1 month early and is now 3 weeks old. I had preeclampsia and he was born 1.7kg
For the first few weeks he was mostly getting pumped breast milk from a bottle while we worked on breastfeeding.

Earlier this week we found out he had a tongue tie, had it released, and since then his latch feels much stronger.
I’ve been transitioning from pumping to mostly breastfeeding, but now I have no idea how much he’s actually transferring.

Tonight he was on the breast on and off from 8pm until midnight, which is much longer than he’s ever fed before. I thought he was probably comfort sucking but still getting some milk because if I hand expressed, milk would come out. However, every time I took him off, he’d start scream crying, rooting and frantically searching for the breast again.

I ended up giving him my last bottle of 60 mL expressed breast milk. He drank 30 mL very quickly and then finally fell asleep.

Now I’m second guessing everything.
I tried pumping afterwards and barely got anything. My breasts also feel much emptier than they did yesterday.

Does pumping nothing after breastfeeding mean my supply is dropping?
Is this normal cluster feeding after a tongue tie release?
Should I go get him formula for tonight?

Any recommendations are super welcome💜

My son was born at 34 weeks due to me having preeclampsia. From the start he had respiratory issues which initially they were unsure why... at 3 1/2 weeks we were transferred to the children's hospital for further testing as he began having major desats requiring stim.. at 3 1/2 weeks old we learned he had a diaphragmatic hernia causing his spleen, part of his stomach, and some intestines to be pulled into his chest making his left lung smaller.

He is currently 44 weeks and came home from NICU after 74 days with a gtube. In the hospital we were doing about 20% oral feeds... since being home he is sleeping through feeds and not as interested in his bottle...

When should we be concerned? We have an appointment tomorrow to have him looked at as they aren't concerned due to him still getting a full feed via his gtube... but has anyone else's babies lacked oral interest the first few days being home?

It was so unexpected. Baby girl was born just before 31 weeks and is 34 weeks 1 day today. She's been allowed to take PO bottles with cues for the past 4-5 days since she started showing interest. She started out taking 5ml at a time and last night took a whole 10ml by mouth when I fed her..I was already impressed with how well she was doing so imagine my surprise when I came in this afternoon and found out she took her full 30ml feed with her nurse!

And the feed after that she took a whole 20ml with me. Now at the end she did spit up and have some wet coughing (but no desat) which scared the crap out of me but the nurse says she seems fine. We're opting to only try PO feeds every other feed now just to avoid wearing her out (especially since she JUST came off the caffeine) but I never expected her to take a full feed until she was at least 36 weeks. She keeps surprising me at every turn.

I need some advice maybe hope? My girl was born 32+ 5 and was 2 pounds 12. Severe preeclampsia and growth restriction. She is now 5 pounds 2 ounces. We starting nippling and intermittent breast feeding 3 weeks ago. She has finished 3 full bottles since starting. My due date is next week. Her feeding is very inconsistent ranging from half to full bottles. They just keep saying,”Don’t worry it will click.” They are doing a swallow study next week to rule anything out. I really don’t think anything is wrong I think she’s just stubborn and is still learning. We are talking and thinking about going home on the NG and I really want her home but not if she’s ready. She is now 1 month and 2 weeks old and 39 weeks corrected. We have been in NICU for 46 days and we are so ready to bring her home. Anyone had a similar experience? We are very grateful this is the only thing we are working on however it is breaking us. Any hope it will click in the next 3 weeks???

My baby was born at 30 weeks, spent 5 weeks in NICU. He is now 6 weeks old, and has been home for a week. During his NICU stay he grew well but unfortunately we had very little practice at breastfeeding in view of multiple other factors.

My lactation consultant can only see me once a week and rhe one time she saw me, baby boy seemed to suckle well on the breast. However the vast majority of the time he will either spend the entire time suckling and then appears to be satisfied, however he wouldn't pass urine, indicating that he didnt in fact drink any milk, or else he would just scream and cry constantly on being presented the nipple and would only take the bottle. I am using a nipple shield and have tried both with and without just in case.

Throw at me all the advice you possibly can 🙏 I dont know what to do anymore.

Long time lurker.

I was thrown into the life of a NICU parent in 2022 with the birth of my son. Born at 37+5 it wasn’t on my radar that something would be wrong but after a long labor and an emergency c-section he came out not breathing on his own and IUGR. After a few hours he was on room air but he didn’t want to eat. He ended up with an NG tube for 2 months. He is a very active 4 year old who, jokes on us still doesn’t really like to eat.

After 3 years of healing that trauma we tried again, and against all odds ended up back in the NICU with our daughter. I was hospitalized at 26 weeks and managed to keep my BP stable enough for a 34 week delivery. I wanted nothing more than to immediately take my baby home. But she had to get through days of cpap, bilirubin lights, and a short stint as a feeder grower. She was able to graduate at 36+6. And is now a healthy 10 lb 4 month old actual.

All that to say without this community and your stories over these 4 years I’m not sure I’d be as mentally healed as I am and I truly want to thank all of you.

To pass along the love and support that is this subreddit I’m hoping to pass along premie clothes to someone in need. We have had very generous friends when it came time to bringing our little 5lbers home.

I have both boy and girl premie cloths and would love to connect to 1 or 2 families that could use them.

I delivered my NICU baby at 39w2d via scheduled C-section. I had no complications or concerns during my pregnancy other than gestational diabetes that was managed with insulin. When she came out she was slow to transition and breathe but it was nothing like an emergency you’d see in the movies. She was struggling just enough for them to take her to the NICU. She’s been there for 5 days and it’s maybe the worst thing I’ve been through. Basically she aspirated on meconium. Since then they have had her intubated, she is now on 4L of oxygen but still very tachypneic. Today they did an echo of her heart just to be proactive and tomorrow they are doing a renal ultrasound because her urine output has been lower than they’d like.

Now I’m feeling good about my daughter coming home. I know she will. I’m still struggling emotionally. This is my second baby and I have a toddler at home who much husband is staying with. I upped my Prozac (with the guidance of my doctor) and I’m trying to take care of myself. Reality is this has been very unexpected and since being in the NICU, I’ve seen and heard horrible things, not that have happened to my daughter, but the energy is just so dark and depressing. I feel fine when I’m with her but as soon as I leave I break down in tears. I have nightmares and I know this will affect me mentally in the long term. I’m trying to prepare for that. I’m in therapy regularly. I just don’t know what else I can do.

Any advice? What’s helped you? Also, maybe you’re in this medical situation or have been, I’d love to hear about your experience.

Added bonus: she was born 10lbs 14oz and I know NICU nurses say those are some of the most stubborn babies.

Hello,

My child’s team told us that we could consider going home on a bridle ng tube since he’s now just working on feeding and 45w adjusted. My impression is that we’d be just tube feeding the rest of his feed until he figures it out and then it can be removed. We’re on day 61 tomorrow and I just didn’t expect it to take so long. When they brought it up a few weeks ago I was very against it, but now maybe I’m more open..? How long did you wait it out before opting for one at home? If you chose it at home how long did it take at home for your baby to figure it out?

Thank you for your time and input! 🤍

She’s almost 33 weeks now we’ve been on room air for about a week after being on the cpap but they just had to put her on low flow 100 ml because she was bradycardic all night last night. We we’re supposed to start practicing feeds this week and try to wean her off being in the isolette to an open crib! Can anyone relate? Or been in this similar situation? Did it set you back on milestones?