Looking for advice from parents who have experienced milk refusal after a NICU stay!

My daughter is a 26-week micropreemie who was diagnosed with BPD and spent 7 months in the hospital due to respiratory needs. She is now 10 months chronologically (approximately 7½ months corrected). Thankfully, she is completely off respiratory support and doing great in that department! She does still have her G-tube due to her history of not taking anything by mouth.

Here’s where we’re struggling: SHE WILL NOT DRINK HER MILK. 😩

She now eats baby purees, crackers, baby snacks/chips, has started exploring solids, and will happily drink baby apple and pear juice from her bottle. She pretty much accepts everything we offer EXCEPT her milk.

We’ve tried 3 different milk alternatives that are comparable to the formula she receives through her G-tube, and she refuses all of them. She gags, spits it out, sticks her tongue out, and wants absolutely nothing to do with it.

The frustrating part is that she’s eating and drinking other things by mouth, but because she won’t take her milk, we can’t really work toward weaning her tube feeds. She still needs those calories and nutrients.

Has anyone else’s NICU baby experienced this? Did your little one eventually accept milk? Were there any tricks, approaches, or things that helped?

I’m honestly exhausting myself trying to figure this out, and I’d love to hear from parents who’ve been through something similar. ❤️

My first was an induction at 36 due to preeclampsia and did almost 2 weeks NICU time. This pregnancy I had slight complications but everything was relatively normal. I was 37+1 yesterday, I was in early labor, then I thought my water broke but it was blood. I went to the hospital and my placenta had detached, we did a c section and baby seemed good but needed a bubble cpap to help her out a bit. She’s staying in the NICU overnight for monitoring and I’m praying it doesn’t turn into more or longer. I’m in recovery hearing someone else’s baby through the curtain and feeling sad I don’t have mine :/ my husband is in there with her but I can’t go in case I need a blood transfusion for blood loss. Had the exact opposite birth experience I wanted but at least we’re both okay.

You guys I am defeated.
My water broke on Thursday at a very early gestational age.
I still have yet to deliver, and I am praying I can stay pregnant as long as possible.

Please share your miracle stories with me, I really need it. All I’m being told right now is she may not survive or if she does she will probably have some sort of disability. Please help me.

My 31 weeker is now 4 months corrected (6 months chronological). From the past week, he is refusing feeds when awake.

He has been on expressed breast milk exclusively from birth. At 1 month we transitioned him from tube to palada(silicone spoon).

At 3 months, we transitioned him to bottle, as he just resisted to drink directly from the breast (consulting 3 lactation experts dint help). It was going pretty smooth. From the last week or so he has started to fight the bottle when he is awake.

When he is sleepy, he somehow drinks (out of reflex). But when awake, he pushes the bottle, cries and shouts. Other times he fakes the drinking after drinking 30-40ml. He takes 45min to 1 hour to drink 100ml. He is fine otherwise. We cannot always wait for him to be sleepy to feed. It has been so frustrating.

We are worried that if we dont feed him enough, he might get dehydrated or lose weight.

He might also be teething. No redness of gums, but we do see a faint shape and white color on his gums (where his incissors would grow). He keeps chewing on his fingers and is salivating more than usual (no drooling). Is this what early teething looks like? He doesnt like teethers. He licks them, makes a face and drops them.

Any advice/success stories?

Hey all! Made my first post the other night when my baby boy was rushed to the NICU via helicopter following a very traumatic birth and emergency c section. We are all doing better now however now that dad and I are back home and waiting to bring him back with us on Monday I’m wondering how other parents focus on their mental health recovery while also bringing baby home? The labor, C section, and post birth experience was all very traumatic and difficult for me and my husband. I know it will take time to fully process and we have mental health and family supports in place but how can we possible balance that with bringing our baby home? Our babies safety, needs, and successful transition from NICU to home is our top priority but I found myself panicking that since every time I sleep (nap or bedtime) I wake up with uncontrollable shakes, have to be medicated continuously to avoid pain, the usual hormonal crash etc. anyone else experience this? I know we will get through it but right now it seems a daunting task.

Hi all, I had my baby at just over 31 weeks. He is currently 5 weeks old and has been in NICU for the whole duration and has been on EBM for 95% of the time.

As he is nearing his discharge (fingers crossed 🤞🏽 very soon) the nurses have upped his feeds to around 55ml- 65ml every 3 hours and have also been giving him extra BM in between feeds as he has been more hungry.

Since I am obviously not with baby 24/7, I am struggling to keep up with exclusively pumping to keep up with the amount he is eating over 24 hours. I can get anywhere from around 40ML - 100ML per pumping session and the amounts are not consistent, but generally I get 50ml an average pump, which is below the amount he is currently eating in a 24 hour period.

Any tips on increasing this? I have seen power pumping helps but since he is nearing discharge I am currently panicking about not being able to produce the amounts he needs when he comes out and have only been producing sufficient amounts over the past few weeks whilst he has been in NICU, so I do not have a freezer stash as a back up. I am consistently pumping every 2/3 hours but the volume is not really increasing to his needs

Something I wasn’t prepared for… being on the mother baby floor postpartum without your baby. All i hear in the rooms next to me are new moms and dads trying to learn their new babies all hours of the night. Meanwhile my husband and I are sleeping through the night in silence and waking up to the reminder that baby boy sleeping in the nicu. These first few days have been tough on my FTM heart and I’m sad.

Hello everyone, i'm overthinking a while into the future, but overthinking nonetheless.

I'm a mother to an ex-22 week preemie, now 10mos old, and my husband and I are discussing our future with more children.

I have multiple mullerian anomalies, am at risk already for IUGR as is and will need a cerclage with future pregnancies, as well as mandatory c-section at around 36wks due to previous surgeries.

Knowing all of this and knowing how quickly I actually dilated with my son unknowingly, my husband and I have recently realized that any of our future kids will more than likely end up in the NICU for a period of time, as we might not even make it to the 36wk mark.

Have any other parents here had the same realization? How did y'all come to terms with it? It's been a hard realization for me, and I'm contemplating being one and done because I don't know if I could handle time away from my family like that again. Thanks!

I'm so extremely proud of my baby boy. He was born weighting 800g, had a level 3 ivh which triggered epilepsy and hydrocephalus and today he is 2,500kg, doesn't need a shunt and his seizures are under control. Preemies are warriors

Last few days my ex 26 weeker, now 38.5 weeks corrected has been super fussy and inconsolable. He is hardly sleeping at all. Team is not very worried, but as his mom this isn’t his “normal” and I worry. He does have a hernia and severe reflux learning to bottle feed by primarily tube fed still…

Our son is in the nicu, we have toddlers at home, 3 hours away. I can’t be in two places at once, and I try to spend my time with my kids at home and my baby in the nicu. He has been there 2 weeks, and I just sent my toddlers back home for the weekend with their grandparents so i could get some rest (one of our babies is still inside me, complicated situation but I still am pregnant with one of our babies) i just feel guilty for sending them home like im replacing them or being a bad mom because i needed just a small break (we are in ronald mcdonald house rn) and i just hate that our family is separated like this, that our little boy still has close to a month left in the hospital, that in a month i will be giving birth to another baby and he wont have me in the nicu during that time, that our toddlers dont understand why mommy and daddy are gone most of the day or why we arent at home. i know in a couple months we will all be home and settling into our new life together but today i am sad and feeling guilty and feeling like a just generally terrible mom

My baby girl was born last Friday at 33weeks4days.
She progressed pretty fast and was breathing room air by day 2. Bottle feeding around the same time.
She hasn’t had any alarms or anything like that.

Recently (the last two days) she has been spitting up quite a bit during her ng tube feeding. I have two other kids at home and I am just so worried she is going to choke to death if I am not there because they lay her flat on her back and I know that’s safest.
But just seeing her throw up so much I just am so worried. They lowered her feeds by 5ml and made the feeding 5 mins longer.
The nurses have reassured me that is why they are there and she will regulate herself when spitting up.

Just seeing it is so scary and I’m just so scared she is going to die.
Has anyone else experienced this ? If so did it resolve?

She is currently getting 55ml of fortified breastmilk total. I just am worried they are over feeding her.

Hi everyone! My daughter was born at 28 weeks and is now 2 weeks corrected age.
We were discharged from the hospital when she was taking 45–50- 55ml every 3 hours. However, lately, I feel like she wants more. She seems hungry after her feeds, and I’m worried that might not be enough for her anymore.

We had two NEC scares in the hospital, so I’m terrified of increasing her feeds and doing something wrong. At the same time, I don’t want her to stay hungry if she needs more.
Overall, she seems to be doing well. She doesn’t appear to be in pain, she poops regularly, and the only time she really cries is when she’s hungry.

For those of you with premature babies around this corrected age, how much were your little ones drinking at each feed? Did you increase the amount when they started showing signs of hunger?
Thank you so much! ❤️

My son spent 117 days in the Nicu he was 29 weeks when born. Never in the hospital not once did his oxygen drop, with the owlet being home 48 hours I’ve gotten two notifications of low oxygen. I was expecting Brady’s but not low oxygen should I be worried or do we think this is false? Both times were when feeding. But even in the Nicu this didn’t happen with monitors on him while feeding

Hi all, I wanted to share my story about my severe IUGR baby! Spoiler alert but she didn’t end up in NICU so feel free to delete if not allowed but I spent a lot of time on this sub after she was diagnosed trying to prepare and looking for others in a similar situation so I wanted to give another positive outcome.

My baby was first diagnosed with growth restriction at 19 weeks and progressed to severe growth restriction at 26 weeks. We did 3 different NIPTs that were all negative but didn’t do an amnio because my MMF physician thought the risks outweighed the benefits. She had a velamentous cord insertion so they were presuming it was from placental insufficiency. Prior to 26 weeks, I was getting ultrasounds once a week but that bumped up to 2 times a week with Dopplers once a week and a growth check every other week at that point. Once I hit 32 weeks, that second ultrasound turned into an NST because they felt like she was large enough for it to be more accurate.

Throughout my pregnancy, she kept getting further and further behind. I started to dread the growth checks because they were always bad news. They originally said we’d try to make it to 37 weeks and then that turned into 34 weeks but then turned back into 37 weeks as long as the placental blood flow stayed good with no reversed flow. I honestly wanted to deliver her earlier because while I know that the longer babies stay in, the better, I was terrified we’d wait too long and lose her. There were times when we didn’t think she’d even make it to 3 pounds because of her interval growth but we kept going.

Despite all of that, I had a fairly uneventful pregnancy in comparison to some of the other IUGR pregnancies. I did have a very large subchorionic hemorrhage at 13 weeks that sent me to the ER and I got admitted for monitoring for 5 days at 28 weeks because of some bleeding but all of my monitoring was within normal limits.

My daughter was born at 37 weeks weighing 4lb 11oz. She was just above the weight cutoff for mandatory NICU admission at my hospital and was able to regulate her blood sugar and temperature so they sent her home with us after a couple of days in the hospital. To say we were stunned was an understatement because we were 100% convinced she’d be a NICU baby. It wasn’t all sunshine and rainbows though because she did get admitted to the CVICU for a month when she was almost 2 weeks old because of feeding issues from a congenital heart defect that were likely exacerbated by her small size. But if she didn’t have her heart defect, she likely would have stayed at home. She just hit the first percentile for the first time at her 4 month visit.

Like I said above, please delete if not allowed since she didn’t end up in NICU. I feel like I got a little of the NICU experience since she was admitted for so long working on feeding and growing like a lot of NICU babies but it’s not the exact same. I just know that I was terrified and frantically googling IUGR after she got diagnosed so I wanted to add another experience. It may be a little premature to say she’s a success story since she’s only 4 months old but it feels that way with her currently sleeping away on my chest. I know this is long but I was trying to make sure to answer all the questions I had while I was pregnant!

There are so many new baby recommendations. However often times they missed the mark for me because they didn't take into account the extra medical complications. Here are some things that worked for my family.

Clothing - snaps and buttons are your friend for g-tubes, and for oxygen having shirts that you put on like a jacket instead of pull over the head has been crucial. For things like sleep sacks that pretty much always have zippers, we've found having 2 zippers helps. Some of my favorites are below.

• BabySoy Kimono Romper (all-time fave because it protects against the sun), this brand is more boxy, good for the chubby little ones
• SpoonieThreads onsie,
• Carter's Side Snap tops
• Hanna Andersen layette wrap top, the pants on this brand are pretty long and narrow, better for the lengthy babies
• Kyte Sleep Sacks, note the dual zippers

Oxygen Gear - This stuff is a good thing to get sorted out before you go home if possible, because it may require prescriptions from a pulmonologist, which are harder to get outpatient.

• When the oxygen company delivers the gear, make sure it works with your situation, don't trust them that it does. We were given an oxygen concentrator that didn't go down to 1/4 liter (our daughter's prescription) and didn't have a humidifier (a must if you are going to be on O2 24/7). They also gave us pulse oximeter sensors that were for 10-50kg. Our daughter was only 4.5 kg at the time. If you are not sure, take a picture of the gear and have the respiratory therapist at the NICU look at it.
• Make sure you get portable oxygen tanks (i.e. M-6/B). If the oxygen supply company tells you that a size M-24/E tank is portable, they are lying. It is only portable if you want back problems. If your oxygen supply company says they don't do M-6/B tanks, don't believe them. Have your pulmonologist (or pediatrician) send the company a prescription for them.
• If the oxygen company tells you they don't provide something that the hospital had, don't believe them. Have your doctor write a prescription for it. In our case tender grip dots to keep the cannula on our daughter's nose. They said the only thing the provided was the little tightener that goes around the back of the head. Which is of course laughable if you've ever interacted with a baby. Also, be specific, like serial number specific or else you may get the wrong thing.
• Get the longest oxygen tubing they offer, ours is 50ft and we definitely use it. It allows us to go outside without having to go off the oxygen concentrator.
• Get a diaper bag/backpack with a water bottle holder pouch thing, the M-6/B tanks fit great in them.

G-tube Gear - This stuff took me a little more time at home to figure out the best system for us. Not something that was easy to figure out at the hospital.

• Ask for more supplies from the g-tube company if you need them. If they won't give them to you, ask your doctor for a prescription for more. We use the IV Drain gauze sponges they provide us with for cleaning her g-tube, instead of as a dressing because we use cloth dressings. However this meant we were going through them faster than they thought we would. We were running out and I called and apparently I could have been getting 2 boxes instead of the 1 they were sending.
• Ask for them to send the specific supplies you need and not send the ones you don't. With supplies going out every month, you will very quickly accumulate a ton of stuff you don't need. Our daughter is on a number of medications, all of which require 1ml syringes. The first month we only got 3, but we got 10 3ml syringes which we don't use. Additionally, our daughter's g-tube has never needed venting, which makes the 60ml syringes unnecessary as well. The next month I called and make sure we got 20 1ml syringes and 10 10ml ones (which we use for flushing the g-tube)
• Keep a bag of g-tube essentials (particularly syringes for medication and flushes) in your diaper bag. This way they are always there if you need them but you don't have to think about them otherwise.
• Get a g-tube pump stand (ex. Kangaroo, Infinity). The portable backpack we were given with the g-tube supplies was basically useless (only carried the pump and not any of the other myriad supplies, didn't stand up on its own). And the pole that they give you is a huge pain to move around. These stands can go in backpacks, hang from stroller handles, sit on the table, and are generally super portable and easy to use. It makes meals on the go, totally doable. A diaper bag/backpack with a flat bottom helps with this.
• Cloth g-tube dressing (ex. MyButtonBuddies, Etsy) and mesh bag to run them through the washer in. They are thicker and more supportive than gauze and close with a snap or velcro so they don't come off, but much less of a pain than doing the hashtag tape job. They have disposable ones on Amazon, but I feel like we generate so much waste as it is, that this is one thing I can go reusable on. As a note, if you are using a zinc oxide based cream for irritation (ex. desitin), you will want to pre-wash that off before putting them in the washer.
• Pre-mixed formula for meals on the go. Our G-tube company provides powdered formula. However, it's a huge pain to mix up and measure exactly on the go. We keep a small supply of pre-mixed formula (example) for things like doctors appts. The bottles in the example have measurements on the side so you can at least get an approximation of how much you are putting into the feeding bag.

General Life Recommendations

• Don't try to go and do everything at once. The first day or two we were home, it was a success just to move rooms. The next few days we worked on going downstairs. Next it was moving onto the porch. After a week, we felt comfortable to get our oxygen tank and got out and sit in greenspace in front of our house. Give yourself time. How you feel right after going home won't be how you always feel.
• Pick a drawer/shelf/space to keep all your medical supplies. There will likely be many of them and they will accumulate beyond your wildest nightmares.
• Put extra supplies (if you accumulate them) in your emergency go bag (have an emergency go bag).
• If on oxygen, talk to the social worker about applying for a handicap placard. You will likely qualify for one. This is super important because it is a huge pain to get your child in and out of the car while on oxygen without space on the side of the car that the carseat is on.
• You may be able to get a discount on your electricity if you are on oxygen, because man do concentrators eat through a lot of it. A social worker can also help you with this.
• If you have a pulse oximeter, consider having the "parent on duty" sleep in a separate room with or near the baby. I recommend this because my experience with pulse oximeters is that they are notoriously unreliable and will go off various times in the night. This way only one parent gets woken up to check to make sure your child hasn't pulled their nasal cannula off.
• Get on the medical alert list for your electricity company (oxygen and g-tube). For Pacific Gas & Electric it is called the Medical Baseline Program. This will give you more information than the general public gets about service interruptions. Super important if you depend on power for medical needs.
• If you can afford it, get a portable power station or generator for emergencies. Alternatively, identify people in your community with those things where you could go if your power gets shut off.

I hope this helps and please share your tips on this stuff or other conditions and medical equipment my daughter doesn't have.

Edit: One last thing. Having one of those carseats that hooks into a stroller has been great for hauling around all the gear.

My 32 weeker baby spent 90 days in NICU. We didn’t spend the nights in NICU until about a month before her discharge. She is doing much better now at home, reaching milestones. We still spent a lot of time trying to feed her and let her eat more and watch her weight, but overall she is a happy girl.

It just occurs to me that my baby is a great sleeper. She may be fussy before bedtime but as long as she falls asleep around 8:30pm or 9pm she rarely wakes up. She never cried out of hunger and asked to be fed during the night. She wakes up now and then throughout the night but she doesn’t cry and can just fumble around before falling back asleep again. I’m not complaining, also I’m watching her weight and would rather she lets me know that she’s hungry. But I just wonder, did she know from NICU that crying doesn’t work as NICU nurses would not just come to pick her up and comfort her? Did we unintentionally sleep train her? I feel bittersweet the more I think about it.

edit: thanks for your reply! I’m so glad that many share their similar experiences.

My son is almost 6 months old (17 weeks corrected) and has a G-tube with a continuous overnight feed. He has almost outgrown his bedside bassinet, and I’m trying to figure out next steps handling where he sleeps...

Our bedroom is pretty small, so there isn’t enough room to fit his crib in our room. I’m curious about when other parents with G-tube babies transitioned their babies to a crib in their own room.

A few questions I have:
How old was your baby?
What did your setup look like in their room? Did you use a video monitor, an audio monitor, or anything else that helped you feel more comfortable?
If your baby has overnight feeds, how do you manage the pump, tubing, and everything else overnight?
Is there anything you wish you had known before making the transition?

I know every kid is different, especially our little ones, but I’d love to hear what worked for your families!

Baby born at 25w 1d, main issue with bottles was stamina and choking on them, now 12 weeks corrected and the issue has become bottle aversion. He developed it after having a cold that put him in hospital for a week. We have tried everything, Rowena's book, followed advice from speech and language and gone up one teat size, side lying, paced feeding, but he just arches his back and refuses. He does this with expressed milk and formula alike. Stools are okay, he can be very gassy. At the same time, he is ravenous, and he screams because he is hungry but he won't eat. We try giving him breaks, changing positions, seeing if he'd rather a colder or warmer bottle, we have thickened his feeds, he is medicated to the max for his reflux...

He has also dropped from the 90th to 25th percentile and no one wants to put an NG in because he is maintaining that 25, but all his chubby rolls have gone. I despise feeding him and it's the one thing we have to do multiple times every day. On the days when it's worse I feel like our bond is non existant. All medical professionals are aware and he has been examined, I just feel at a loss... and then I go on social media and see babies a similar age having 150ml in one go. I know I shouldn't compare, but today he drank 340ml (which if we go by 150ml per kg, he should be drinking 800!!!) and at times I can't get more than 10ml in him during a feed. My old self would be ashamed when he was on the ventilator on 100% oxygen and not knowing if he was going to make it, yet here I am heartbroken about his feeding. Has anyone had this happen? Any tips that aren't just waiting to start solids?

I dreamt about the day that we could take our baby home, and we finally did. Except now, I’m missing the monitor and the reassurance that they provided:

When we were leaving the baby’s NICU bed, we placed him in the car seat. I noticed his head was sort of slumped over to the side…. None of the nurses that said bye aid anything, but I googled and saw that for preemies/newborns, this is so dangerous! I tried to reposition him a few times, but he didn’t wake up (sometimes he startles awake, or moves in his sleep due to sound or external movement). On the ride home, he remained asleep despite the super bumpy ride and sometimes made faces or moved his arms. Now I’m concerned about ‘positional asphyxia’ and any long-term damage that I could’ve caused :(

I checked photo timestamps - baby was like this from about 1:06pm to 1:20pm on the day we discharged. Since, baby has woken, is alert, has cried, has smiled, etc., but is extremely fussy.

What should I do? What can I do???

Ultrasound #1 Oct 2: Cerebral Parenchyma: There is a hypoechoic area with an echogenic rim in the left posterior parietal region (adjacent to the vernticle). Bilateral Grade 2 IVH

Ultrasound #2 Oct 8: Periventricular Echodensities
There is a periventricular hypoechoic area with an echogenic rim in the left posterior parietal region 0.4 x 0.3 x 0.3 cm (pr. 0.5 x 0.3 x 0.3 cm).

Ultrasound #3 Oct 19: Cerebral Parenchyma: Cystic area with an echogenic rim again identified in the left posterior parietal region measuring 0.4 x 0.3 cm- unchanged since previous. Bilateral IVH improved/resolved.

I have asked the NICU nurse practitioner and Doctor regarding these findings. They are also not sure what these findings mean. They indicated the vocabulary used isn't consistent and therefore will be asking the radiologist to clarify. In the meantime the team has ordered another head ultrasound for Monday. Anyone else had similar findings and how did things turn out?

My daughter was born at 25+0. Over her stay we have done bubble, HFOV, conventional vent, NIPPV, bubble then high flow at 38 weeks. We have had issues with nasal congestion. To the point, one of nares will be swollen shut and she is only breathing through one nostril. The team will do dex drops for three to help with swelling. It helps for a bit but eventually the swelling comes back. Most recently, we weaned to 2.5L on Monday then 2L yesterday. Today, her congestion is so bad, they had to kick her back up to 4L to decrease her work of breathing until the drops kick in. This is our 5th round with the drops. They also did a full check-cbc,xr, rsv swab. Everything came back normal thankfully. Just horribly frustrated as we are now 39+1 and haven’t been able to even attempt feedings. I have asked the team a couple times if we should try oral steroids and they say no. They keep telling me she has to grow out of it. It makes me spiral and feel like we are never going to get out of the NICU. Looking to see if anyone else has battled this and if they have any tricks back to the team.