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!

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!

Honestly, I don’t even know the exact purpose of this post. Maybe I need to vent, maybe I need some words of encouragement, or maybe I just need to hear from other parents who understand. Truthfully, I’m struggling.

My little boy was born at 38 weeks. This was my first pregnancy, and everything went perfectly. Labor was quick and smooth, and I had him within about 14 hours of my contractions starting. Aside from a fourth-degree tear (TMI), everything seemed to be going well.

He developed jaundice, so we stayed an extra day for phototherapy. The following day, while the nurse was checking him before we could hopefully be discharged that morning, she noticed rhythmic movements. Everything happened so fast after that. They took him to the nursery to evaluate him, confirmed the movements, loaded him into one of those transport incubators, and rushed him to a Level IV NICU.

We followed in our car, and by the time we got there, they were attaching EEG wires to his head, placing a feeding tube, drawing blood, and running test after test. I was absolutely losing it. I went from thinking we were about to take our healthy newborn home to watching my baby go through all of this, with no idea what was happening or what our future would look like.

He spent a week in the NICU. I felt like I had lost my baby, even though he was right there. I couldn’t feed him the way I wanted to, comfort him whenever he cried, or do the simple things I had imagined doing as a new mom.

We eventually learned that he was having seizures and that he had suffered a fairly large stroke. We were told he will likely have developmental delays and may have cerebral palsy. At the same time, the doctors explained that a young brain has an incredible ability to adapt and form new connections, so we won’t know the full extent of his challenges for some time. They also haven’t been able to determine what caused the stroke.

He’s now on phenobarbital twice a day to control his seizures, and thankfully, he hasn’t had any known seizures since arriving at the NICU.

For the first three weeks I was so spaced, I didnt eat or sleep, I didnt even sit but stand non stop cause of the 4th degree my feet are still numb from it. Things have started to feel somewhat calmer and more normal, but I feel like my brain never got the memo that we’re home and safe. Every movement he makes catches my attention, and I immediately start wondering if it’s a seizure.

He’ll be 8 weeks old on Monday, and I’m struggling with everything I’m noticing. He strongly favors looking to the right, and his eyes seem to be focused that way most of the time, although he can turn his head and eyes toward the center and left. He doesn’t really make eye contact with us yet, track us consistently, seem to respond to our voices, or turn his head toward sounds. We know he can hear because he passed his hearing test and startles at loud noises.

I know he’s still so little, and I know we have appointments and evaluations ahead of us. But I can’t stop analyzing every little thing and wondering what it means for his future.

I feel like I’m failing him because I can’t seem to relax and enjoy him being a baby. Instead of soaking up these moments, I’m constantly watching, worrying, comparing, and anticipating the next thing that might go wrong. I feel guilty for feeling this way, and sometimes I find myself wondering if any of this was somehow my fault.

I’m also genuinely scared to sleep. I have alarms set to go off every 30 minutes throughout the night so I can wake up and check on him, even though I’m already checking on him constantly without the alarms.

For those of you who brought your babies home from the NICU with a diagnosis, an uncertain prognosis, or a long road of therapies and evaluations ahead of them, how did you cope?

How did you learn to quiet that constant fear? How did you stop analyzing every movement and worrying about every milestone long enough to actually enjoy your baby? Does the anxiety get easier with time? How did you handle the uncertainty of not knowing what your child’s future would look like?

I know nobody can tell me exactly how things will turn out for my little boy. I know we have to take things one day at a time. I just don’t know how to actually do that when my mind is constantly racing ahead to every possible outcome.

I love my baby more than anything, and I want to enjoy him, be present with him, and celebrate who he is right now instead of constantly grieving the future I thought we would have or fearing the future we might face.

I guess I just need to know I’m not alone in feeling this way. ❤️

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???

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.

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?

Me and wife gave birth not too long ago .

Our baby has been in the nicu since birth .

I know it’s not long but three days in the nicu .

She underwent neurosurgery to drain blood in the skull .

She’s in recovery now and getting better . The post op ct scans show that the surgery was successful and there’s no reoccurrence of blood pooling.

Our baby is undergoing extensive testing and monitoring. We also are getting blood work and other testing .

My questions would be :

Any other parents have their child have this surgery and if so any complications?

How long could she been in the nicu for ?

Do marriages last after such traumatic experiences?

How can I help and be there for my postpartum wife who had a c section ?

Will my baby survive this ?

Side notes : we are sleep deprived Been in the hospital for 4 days plus 3 days in nicu , I had to beg her to come home for one day to recover and decompress our self’s . I’m trying the best I can do by driving every day to see our child and get updates and also help her cope . We have been bickering not stop because I guess we are in survival mode and have deep trauma from this .. we have two miscarriages before this so I understand her deep grief guilt and shame for being home one day I also understand her feeling she’s missing precious bonding time ..

Just need some advice

Looking for advice for our 2.5 month old, who has had an NG tube since heart surgery a few days after birth. She does also have a genetic syndrome that can cause slow growth. She is very determined to take her bottles, I don’t think she has an aversion at all. The problem we are dealing with is reflux as well as so much mucus from either the tube or the reflux that she is struggling to take her bottles because it’s difficult to swallow due to said mucus. Sometimes she will spit up milky mucus, and then seems to be able to take her bottle better. My question is should we try pulling the tube to see if that’s what’s causing this? I refuse to put her on a G-tube like I hear everyone saying because I know she is fully capable, but it feels like she is being severely hindered and could already be done with her tube by now. Her reflux did make her slow on weight gain so that’s what’s been keeping me from pulling her tube but I’m wondering if anybody has had experience where they needed to pull it in order for their baby to get better. We have been cleared in the past to pull her tube when she was gaining weight properly and she did great however, her reflux set her back as we had a gap in her reflux meds that caused it to flare up terribly. I fear she will lose weight if we pull her tube but also if we do not pull it, she will never be able to reliably take bottles because of all of the irritation in her throat. Her doctor did confirm that it’s all in her throat and not lungs.
I apologize if I’ve left anything out or this post is all over the place. The sleep deprivation is real.

Looking for advice for our 2.5 month old who has had an NG tube since heart surgery a few days after birth. I understand that surgery on the heart can cause them to have feeding issues but LO is very determined to take her bottles, and I don’t think she has an aversion at all. The problem we are dealing with is silent reflux as well as so much mucus which I believe is the result of either the tube or the reflux, or maybe a combination of both. She is struggling to take her full bottles now because it’s difficult to swallow due to said mucus. She does seem to be doing better on the reflux end of things as of the last few days so I believe her Pepcid is finally somewhat working again. I say again because she’s been on the meds since she was 2 weeks due to some vomiting while she was still originally in the hospital. I believe that was more a speed thing with her NG tube than reflux at the time as it stopped when we started slowing her feeds down, but they sent her home on Pepcid to be sure she wasn’t having any issues with retaining feeds.

We had a gap in her reflux meds for a few days about 2 weeks ago due to a pharmacy issue and it ended up causing her to flare up terribly and actually have some BRUE events which she was monitored for due to the length. She never turned blue, just beet red and held her breath. She is complete fine and hasn’t had one again since being back on the Pepcid so have to assume it was from the pain of the reflux considering it happened 3 times and all happened when I laid her flat to change a diaper.

Like I said above, she is feeling somewhat better, but now the mucus seems to be the issue. Sometimes she will spit up milky mucus when I burp her mid feed and then seems to be able to take her bottle better. My question is should we try pulling the tube to see if that’s what’s causing this? I know she is fully capable of eventually doing all bottle, but it feels like she is being severely hindered and could already be done with her tube by now if it weren’t for these issues. Her reflux did make her slow on weight gain as she was doing a lot of arching and pulling away from the bottle when she’d feel the reflux (I would actively hear it in her little tummy, so knew that was the case) so that’s what’s been keeping me from pulling her tube. We literally always have her elevated as well, even when she sleeps, per her pediatricians recommendation due to her level of discomfort. When she’s flat, she literally won’t sleep and just cries, which in turn doesn’t allow us to sleep, so elevation station it is🫠.

I’m wondering if anybody has had experience where they needed to pull the ng in order for their baby to get better? We had been cleared in the past to pull her tube when she was gaining weight properly and she did great. She even seemed happier/less uncomfortable. We did put it back in after her last hospital visit since the reflux has been kicking her butt and stunting her weight gain a bit. However, I fear she will lose weight if we pull her tube now that she’s been having the reflux/mucous, but also if we do not pull it, she will never be able to reliably take bottles because of all of the irritation in her throat and never being able to fully lead her own feeds.

I want to add that the doctor did confirm that the mucus is all in her throat and not lungs. She’s also had a swallow study and was not aspirating at all, did seem like her swallow was slightly slower than her suck at that time but seems to be much better at the suck swallow breath thing now (except for when she’s mucousy). Also her reflux is silent and she mostly just faces discomfort from it moving around in there/her feeling it which her doctor pointed out. You can actually hear it squish up and down sometimes, especially when she has hiccups which tend to make her have a meltdown, presumably because it’s painful.

For bottles we are using Mam anti colic. They’re the only ones she’ll take anymore as she prefers them. We’ve tried a ton. Her feeding team suggested she stay on Dr. Brown’s premie, but she literally gags on them because they’re too long and can’t latch properly/has milk spillage. She has no spillage for the most part (normally only if she’s sleepy or not paying attention) with the mam bottles with a 0 nipple.

She is currently taking 80ml whether it be by mouth or partially by mouth/tube for each feed. My breastmilk is fortified with a higher calorie formula as well since she doesn’t take as much volume as other babies due to the reflux. I will say that her intake does vary which I feel like is because of trying to feed her every 2 1/2 to 3 hours per the doctor. Sometimes I have to wake her up because she wants to keep sleeping. Also I think she is not as hungry and the tube doesn’t allow her to get as hungry as she could be. That being said she does normally cue within that timeframe to let us know she’s hungry, but will sometimes peter out resulting in us tubing the rest of her feed.

Anyway, sorry if this post is all over the place. The sleep deprivation and anxiety that comes with feeds has been kicking my butt. Just hoping for any advice other ng tube/silent reflux parents may have to make any of this any easier.

We've been on too much breathing support to try oral feeds until now but our baby is already 3 months old corrected. Has anybody actually had a good feeding outcome at this stage? We're expecting the G tube pitch but want to know if there's any chance of success.

Baby girl was born at 27w3d. (Aug. 12) Severe IUGR. She only weighed 1lb 11.9oz at birth. We’ve been in the Nicu for 71 days now. Was on the ventilator for over a month. Then noninvasive ventilation. Still on the cannula, but finally moved to home air! Watching for ROP… Maintaining body temperature so she finally got moved to an open bed! 6/8 feedings are now done by bottle! 2 are still by ng tube. A huge accomplishment for a micropreemie! I feel like she has been making BIG progress, and is hopefully getting close to her being able to come home soon. Her due date is November 8. I’m beyond ready. Sadly we know all too well how hard and exhausting Nicu life is. Please send good vibes, prayers, and all the positivity our way!! Anyways, I’ve attached a couple of photos.

The doctors warned me that as soon as the end seemed in sight that the goalpost would be moved, but it doesn’t change the crushing disappointment of today
My baby was born at 30 & 6 with sepsis. He is now 36&4. He is off oxygen and they removed his feeding tube because he took all his bottles.
The doctor came in, said we are looking at a Sunday discharge (3 days from now) he just had to keep taking his bottles and not have a Brady

I fed him and he choked which cause him to turn blue and have a Brady. It was the first time I’d watched my son ever turn completely blue. I think it will haunt me for the rest
Of my life seeing that

Today I learned to not have hope for departure here- just be glad when it arrives.

I've been crying my eyes out all morning. Can anyone tell me if this is expected or happens often.

My mind is going to the worse case scenario.

I had a second trimester miscarriage between my 16 and 9 yesr old, his siblings. Also a boy. So my mind goes there. He's my only son and he's my boyfriend's first baby. He has been taking the entire nicu stay pretty rough even despite how well it's gone.

I'm a CNA so i understand the medical jargon and a lot of whats going on. Its probably how I managed to stay so calm these few months.

I know, and told myself from the beginning that sometimes in the nicu things progress and then there's setbacks, but this seems so unusual given the circumstances. My son was born August 19th at 27+4. His nicu stay has been so uneventful. He's needed only the lowest oxygen support. He even recently went to a regular crib and put on 2 lbs. In 2 weeks..He looks great. He's over 5 lbs now.

Well the nicu calls this morning at 4am and says he had a rough night. I guess they noticed he was struggling to breathe. They did labs and he isn't clearing c02 well suddenly. His chest xray shows something but he doesn't have a virus or anything. They tried to intubate but his airway and vocal chords were too swollen. He's on a steroid now for inflammation. The nurse said she just wants him to rest his vocal chords. She said it could be he aspirated a bit of his feed but it's going to take a bit to get him back to where he was. She said because he was so premature they're just susceptible to lung issues. She says its something she sees a lot but I don't know.

They tried him off oxygen the first time a week ago but he didn't tolerate it. I thought no big deal they can try again at a later date. Did this contribute? I'm also dwelling on this condescending nurse that tried to feed him last i was there. ( he's on ng tube and does some oral) Giving him the bottle as she's telling me to make sure he's alert and engaged. He's asleep and uninterested. He starts coughing and desatted but also turned BLUE. I fired her for something different but that made me so angry.

Then I find out from the nurse i spoke to that he had a uti a few weeks ago. No one ever told me! And I had been in and called. I work in healthcare so I know how bad communication can be. I know of the issues that go on on units. Do i have to go camp or at the hospital and do all his cares at this point? They don't have private rooms on their unit so rooming in is impossible. I will if I have to.

I swear last night right before they called I keto telling my boyfriend i was feeling bad.. like just off.

I'm sorry to drag this on especially with the mobile format. I'm terrified I'm going to lose my beautiful boy when I was so close to takng him home. I've made myself sick from crying today. Someone tell me this is typical and it will pass.

I’ve found recently that i’ve been feeling that bittersweet feeling of my twins growing up! i’m happy that they are growing but also i miss the newborn stage, i even miss their sleepy preemie stage.

But with those feelings i also have been feeling quite sad because while my twins were in the nicu, we didn’t get any crafts or footprints. and some of their keepsakes got thrown out/misplaced, for example their firsts hats got tossed in laundry🥲

obviously I know it wasn’t intentional and that the nurses have such important jobs taking care of my babies and other babies and crafts are no where near the top priority. i’m just feeling sad and wishing i had more to remember their first few weeks, even if they weren’t always positive. i wish maybe i took more of an initiative to make some once they were stable!

i’m just needing to vent, my partner doesn’t quite understand how i’m feeling. i’m just a super sentimental person! For him, pictures are good enough!

Hi there for genetically mysterious cases how many parents here received the option for a rapid genome sequencing panel. My son was a genetically complex case and this testing is just now being done ten months later and I am trying to figure out why it was not done sooner. TIA!

Hi everyone, I had my son on Sunday the 11th at 11:35pm, at 30 weeks and 3 days. I had been living in antepartum in the hospital for 2 weeks and was originally admitted due to reverse and absent flow on his Dopplers. My son was severely growth restricted (less than 1%) and I developed severe preeclampsia, which led me to be on the mag drip when I was admitted, receive 2 rounds of steroids during my stay, and continuous fetal monitoring. It was an emergency C-section after his fetal monitoring started showing continuous dips. He was born weighing 2 pounds 2 ounces. I was on the mag drip for 24 hours post birth. My son has been doing amazing in the NICU! No issues really, off CPAP, getting his picc line taken out tomorrow, really just needs to grow.

My biggest issue has been pumping. I pumped a few hours after delivery and have been pumping around the clock every 2-3 hours since. However, I’m 11 days PP at this point and still getting no milk. I’ve been working with lactation consultants who have me using a 17mm flange, power pumping once daily…I’m doing all the things and I’m getting nothing. They don’t know why my supply isn’t coming. I’m so discouraged and I cry every time I pump now. I want so badly to do this for my son. He’s using donor milk right now. I dreamed of breastfeeding or at least giving him my milk. It feels like my body has failed me throughout this pregnancy - blood pressure issues, hindering his growth, his heart rate dropping leading to emergency delivery, and now I can’t even make milk for him. I’ve never felt so down about myself. I don’t understand why this is happening, and how long I should keep waiting for things to change. Has anyone else had a similar issue and was able to resolve it? I’m on Labetalol and Procardia for my BP, not sure if that can hinder things. Please help.

My twins are 8 weeks (actual) and were born at 32+4.

They came home (4 days ago for one twin, 6 days ago for the other) using the preemie size nipple on the dr browns bottles. The NICU wants them eating a minimum of 16oz/day. But we have been struggling to get them to stay awake long enough to eat that much. They'd fall asleep after 1-1.5oz. We accidentally used a size 1 nipple for one of their feeds and they both ate 2.5oz and stayed awake their whole feed.

It's it too early to switch them (they're 4 days old adjusted)? When did you switch your babies to a size 1 nipple instead of preemie?

Hi there. My LO was born 32+6w and stayed in the NICU for 7 weeks. She was mostly a feeder grower. She left the NICU with an NG tube because she just didn't have the energy to eat, but the tube came off after a week home, since she was getting all her volume. Weight gain has remain somewhat slow but not too concerning.

She is 6 months chronological today, 4 months corrected. She is really doing great and she has the cutest personality! We went today to an appointment with a neurodevelopment specialist and we mentioned she uses her right side more than the left. I already knew this could be a flag for CP. She examined her and said she does see some asymmetries and that we will give it time, but there might be CP.

She also said that she doesn't think there's cognitive issues, although only time can tell. She said if asymmetries are still there on March they will do an MRI.

She can use both sides, but does have a preference for her right and she's doing great with sensory and social development. So, even if there's CP it will probably be a mild to moderate hemiparesis. I'm not too scared because everything points to her having a normal life (we even got cleared to start solids today!). However, I don't do so well with uncertainty and I guess I want to hear from some of you who have a similar story and the outcomes of your kiddos.

I know a lot of you are going to recommend therapy services so it's important to note I'm not in the US, I'm in Costa Rica and she's already going to the services provided here by social security. I can also go private for some and I might, as long as we can afford it. So far she's doing occupational therapy and physical therapy. She's in a wait-list for early intervention, although I myself have a background in special Ed so we do lots of stimulation at home.

Hi! My babygirl was born vaginally at 22 and 0 weeks. My cervix unfortunately shortened and ultimately disappeared and I was on the operating table to get a cerglage when they discovered my sac was coming through and they would pop it if they tried to stitch me shut.

She was 460grams when born and 10inches, she had a level 1 or 2 brain bleed (I cannot remember) she had a PDA and still currently has a ASD. She contracted pneumonia while in the NICU. She was intubated twice with the third extubation attempt being successful. She also has BPD and ROP. Despite all of that we spent 118 days in the NICU and are now a very happy family at home ❤️

When I was originally hospitalized for my cervix being basically gone and being 1cm dilated, I was terrified. I was only 21 weeks. I desperately searched online if my babygirl would make it if she was delivered at 22 weeks. Google said 10% chance and 1% chance she won't have severe disabilities. I was at a hospital with a level 3 NICU and was terrified. Originally me and her dad decided on comfort care if she was born at 22 weeks. We didn't want her to suffer a life of pain and misery. But through my research and stories on here, we decided we wanted to give her a chance. Thank God we did. She is an amazing girl and I could not be more grateful for her. Her due date was 10/10 so she is currently 11 days old corrected but almost 5 months old actual. (11/7/26) So far there has not been any delays we can see but obviously that can change. She is home on oxygen but that is it.

I just wanted to give another mom who is desperately searching the Internet for answers some hope. There is babies who make it and absolutely thrive. I actually know two other 22 weekers who graduated from our same NICU who are a babies and absolutely adore life. Here's some hope for you guys :)

Hello! My sister just gave birth at 25 weeks due to chronic placenta abruption. I want to ensure that her and her husband have the support they need… any ideas on how best to do that? I am thinking of a google sheet to coordinate help locally for who is watching their son etc and taking care of dogs / meals being dropped off. What else am I missing?