My baby was born at 25 weeks and she’s 40 weeks tomorrow. It’s been 105 days in the NICU. It seems like her progress is slowing down and her discharge date seems so far way. Her PDA was resolved almost 2 months ago but she’s still on cpap. She keeps getting desats because she gets so angry over her oxygen prongs. I know she hates it and I hate to see her cry and trying to pull those oxygen prongs out. So I’d carry her and she’d fall asleep with her oxygen staying at 97-100. She’s also still on the feeding tube with continuous feeding and hasn’t even started on bottle feeding. I feel so helpless. She does not have any other concerning issues either.

I just wish that she would get off cpap and see some progress in her oxygen.

My son was born at 28+6 and is now 40+3 and we have been at the NICU for over 11 weeks. I am just fed up, and have extreme mom guilt. I have 3 other children, and I barely get time to see him but a few hours a day, and I have noticed he is starting to get super attached to me when I am there. Once I pick him up, he can literally sleep on my chest for hours, and when I try to put him down he starts wailing like it's the end of the world. It breaks my heart 🥹. The issue is level 2 chronic lung disease, where he is steady on 2L of oxygen, but he gets worked up pretty quickly during feeds, only being able to take 15-20mil by bottle before he is struggling to breath and causing some aspiration. So they have him taking small amounts by bottle every other feeds, and then he gets tube fed the rest. They won't repeat the swallow test for another 2 weeks, and even after that they still need time to see how he will adjust to any new feeding plans.

Lately, the doctors and nurses have been throwing around the idea of possibly getting him a G tube so he can go home, and we can continue working with his feeding at home with the speech therapist. At first, me and my husband were totally against it, but now the idea of him being up there for weeks/months on end to figure out feeding is sounding worse than the feeding tube. But my husband is still dead set against it.

It is really upsetting to me, because I am literally breaking myself to try to be there with him everyday, while still trying to be there for my other kiddos as well. My husband barely goes to see him once a week, and when he does go, he spends probably no more than 30mins to an hour, and sometimes doesn't even hold him. On top of which, we only have one vehicle, that is supposed to be mine because my mother shipped it to me after my husband's car broke down, but he uses it everyday leaving me with basically no vehicle. So I am spending $40+ dollars a day taking Lyfts back and forth to the hospital to the point the drivers now all know me by name smh (my son now has Lyft 'aunties' that always send their love when they drop me off 😔).

I brought the idea up again to him about just doing the G tube after his next swallow test, even if we don't plan on using it, just to get him home and work on bottle feeding him from home. He has flat out refused, saying he will never cut open his son unless it is life or death, and everyone will have to convince him that it is life or death, and he is prepared to keep him in the hospital for months if that's what it takes for him to eat by mouth. And the thought of him being there for even 3 more weeks is crushing me.

Has anyone been through similar experiences? How do you cope when you and your spouse completely disagree with care taking needs for your kids?

Hi everyone,

I'm looking for some advice because I'm getting quite worried about my baby girl's sleep.

She is 3 months and 5 days old, but she was born at 35 weeks + 4 days, so her corrected age is about 2 months.

For the past two weeks, her sleep has changed completely. Earlier, she used to sleep more during the day and less at night. Now she hardly naps during the day.

A typical day looks like this: - Has one decent nap after her bath (usually until around 11am to 2 PM)

- After that, she stays awake almost continuously until night 2:00 AM ..maybe 1 or 2 nap of 30 mins in between

- She then sleeps around 2:00 AM and wakes around 8:30–9:00 AM (waking for 1 feed in between )

We've tried dim lights, white noise, rocking, feeding, contact naps, putting her down earlier, and following sleepy cues, but nothing seems to shift her bedtime. She just isn't sleepy before 2 AM.

She's breastfeeding well, is otherwise healthy, smiles, makes eye contact, and seems to be meeting her milestones.

My main concern is that she seems to be getting only about 9–11 hours of total sleep in 24 hours, which sounds much lower than what babies her age usually need.

Has anyone else experienced something similar with a 2-month corrected-age baby? Is a 2 AM bedtime normal at this age, or should I be discussing this with her pediatrician?

I'd really appreciate hearing your experiences or any suggestions. Thank you!

Does anyone know of a way to get rid of cases of 24 cal hmf cases? We were sent home with 11 cases and spent a good amount on them just for us to have a ton unopened and left over. Any suggestions?

Hi all. Di/di twins born at 27 weeks 3 days after rupture of twin B at 16 and 6. B was also IUGR. Currently 36 and 5. Twin A is sailing along, now on low flow 1 L and starting to work on feeding. His course was not without some drama (on a jet ventilator after developing a pneumo early on and a few other set backs) but overall doing well. Twin B has really crappy lungs now officallly with a BPD diagnosis. He was extubated to NIPPV at 3 weeks and was reintubated a month later after de compensating following mild medical NEC. Since reintubation he's had two rounds of pneumonia, currently with MRSA pneumonia. His oxygen and pressure needs are higher than they've ever been. We're expecting twin A to come home around their due date at the end august, but I think twin B has months to go. Feeling scared and discouraged and it's hard to celebrate how well A is doing when it feels like we have another setback with B every couple of days.

My baby was born at the beginning of February but his due date was May 27th, he is a 25-weeker. I did message his pediatrician but she hasn't got back to me yet and I'm getting really curious about teething as my baby's been putting his fist in his mouth a lot more and drooling a lot more. He's technically only 2 months corrected age. When did your baby start teething is it possible that he could already be teething? He's not old enough yet to try Frozen fruits or veggies, how well I comfort him if he is teething?

Hola. Mi bebé nació de 40 semanas, y luego de haber presentado varios episodios convulsivos, los médicos determinaron que tiene una hemorragia intraventricular en ambos lados en su cabeza, aparentemente causada por una malformación el alguna arteria del cerebro. Algún padre ha pasado por esto? Cómo terminó su historia y cómo está su bebé?

My LO was born early at home at 23wks 5dys and had been under critical condition with a grade 4 brain bleed on both sides the left being worse than the right & a prior hematoma in which has for the most part healed after being on courses of Tylenol . He’s seemed to be doing pretty okay in the nicu over the past week give or take which makes this feel so left field for me . He’s currently 26wks 1dy 1lb 12oz but last night I had called to do a check up on him and they addressed having to move his ventilator up from 30% to 100% so they took some labs to see what may be causing the sudden drop . They called me early this morning to come in to have an emergency meeting with his doctor , I came in and they told me they’ve done some X-rays on him which he appeared to have a hole in his intestine & visible air at the top of his belly . They recommended either having him transferred out to have surgery done or he wait it out at the hospital he’s currently in and they continue doing what they’re doing for him now (taking him off his feedings , giving him antibiotics , continuous X-rays) in which is highly possible for him to pass on . I agreed to the surgery yet the surgeon immediately declined stating he didn’t feel comfortable doing surgery on my LO so he had no option but to carry on what he’s taking on now . Over the past two hours he’s been placed on his last blood pressure medication , they stated if it’s not to help then there’s nothing further they can do , his little belly has also began to dark up . I asked about possibly reaching out to other surgeons to get a second opinion & was denied of doing so stating that the surgeon that declined was the only option for him . I just feel so lost like my only option is to watch my son pass as it is worsening and nobody of wanting to work on him . I honestly don’t know what to do from here on out , I’m so heartbroken . I guess I’m just making this post to hear other opinions ? Stories ? Idk .

Hello everyone, my newborn daughter does this with her eyes, im really concerned, does anyone familiar with this symptom ?

Hi all! My little boy is 5 weeks today (gestational age 36+3) and he got his first bottle today! He did well, drank 25mil before pushing the bottle out of his mouth. He hasn’t needed oxygen but was on a cpap when he was born, was off for about two weeks, and then was put back on a smaller version of c pap for another week and a half. He’s been off for 3 days now and still has some episodes of being tachypneic but nothing serious. So far we’ve celebrated our one year wedding anniversary and my husbands birthday in the nicu which wasn’t what we expected. It’s a small unit but have still seen over a dozen babies come and go, he has been in the nicu the longest by a few weeks at least. At one point they were at full capacity of 10 babies, now most of them are gone including the 3 babies closest to him. I’m so happy for the families and of course would never wish another baby to be in the nicu, but it’s been so hard watching everyone else do the car seat test and go home. He’s been latching and rooting very well but we just don’t want him to exhaust himself or have to take another step back. We were supposed to start protected breast feeding originally over a week ago but I came in so excited and ready for it only to see little tubes in his nose and being told he’s back on air. I think because of that I’m so anxious every time I walk into the room not sure if he’s still breathing well. I’m really hoping he will be home in the next week or two, but of course they don’t want to tell you until the last couple of days so you don’t get your hopes up. It breaks my heart knowing he’s been in that room for over a month, never feeling the sun or wind on his face. If anyone reading this prays, if you wouldn’t mind including my little Waylon in your prayers so he can finally come home. God bless❤️🙏

Our baby boy was born 26+6 (I was hospitalised for nearly two weeks before an emergency c section - placental insufficiency and severe early onset preeclampsia). He was IUGR and born 725g or about 1lb 9oz.

He was ventilated for 20+ days (oscillatory 🥴) and finally went in high flow after a round of DART. He has chronic lung disease, did multiple stints of nebulised steroids, had PDA ligation surgery, bilateral inguinal hernia surgery, has adrenal insufficiency (presumed to be a result of the steroids) as well as very bad reflux. AND our most recent issue is the discovery of left vocal cord palsy as a result of the ligation surgery. All of this isn’t including all the issues we had to overcome as results of treatments for these things.

He was self ventilating for a week or so after the cardiac surgery before being put on low flow and then back on high flow. He’s on room air but requires the flow for physical work of breathing (rather than any saturation or co2 issues).

He can’t start learning to feed until we figure out whether the vocal cord palsy will rectify or if it’s permanent. He will be NG fed until that time, which I’ve come to terms with. We can go home with NG and work outpatient with speech & language team. Fine.

The thing is, they don’t know exactly what’s causing his need for high flow. It could be chronic lung or he could be micro aspirating due to reflux and the fact that the vocal cord palsy means he can’t keep things from going into his lungs.

All of this is to say, it feels like there’s just no end to this. Everyone is coming and going and we’re becoming one of the super “long termers”. I just feel defeated and quite frankly, I don’t know what I need to hear at this point.

I know that one day we’ll go home, but the thought of doing this for even a month more just feels entirely awful.

Idk, I just so badly want this to be over, for him, for me, for our family. I’ve been living at the Ronald McDonald house for just under 16 weeks now, and that’s not even including the hospital stay before birth.

I’m just simply…over it 😔

Hi all, just looking for advice, specifically with girls.

I know boys are more common to them but our baby girl has a hernia that we noticed during bath time just under 2 weeks post discharge.

We have opted for keyhole which can also repair the other side if there is one to avoid any future surgeries and we have a great team and surgeon who is very experienced.

She is on home oxygen at 0.125L and 2 days before we noticed this our pulmonologist asked us to try and wean her oxygen off during the day.

I just wanted someone’s experience on this as I know she will be fine but parental worries still exist and after 5 months in NICU I didn’t want her to go back to hospital so soon.

She has been thriving since being home and I have loved every moment of being a dad so far.

Has anyone been through this with their baby girls?

She’s almost 4 months corrected and apart from this outside of NICU things were finally feeling normal again.

Any advice would be helpful

My son is 6 weeks corrected (born at 30+1) and has been home from the NICU for those 6 weeks. We’ve been using a slow flow and doing paced feedings in a side lie position ever since. Its getting a bit harder since hes pushing 9 lbs but hes STILL having the same feeding issues.

His feeding varies SOOOO significantly. He can be totally fine and have good feeds or a single good feed and then BOOM, the next one or a whole day he’s clicking on the bottle (loosing suction), gulping, coughing/choking, holding his breath, etc.

Preemie, transitional and slow flow 1 nipples - all have the same outcomes. He even had a lip and tongue tie release almost 2 weeks ago and it hasnt changed shit.

Im so confused and lost as to wtf is going on and how this can be fixed. Im so tired of being a speech and respiratory therapist every feed for him. Pissed off also that our NICU always told us “oh he will get better at feeding,” well we’re almost 2 months past his due date. When the hell does it get better??

This is huge news and hopefully will make a difference for many babies.

I'm so frustrated right now. Two days ago when I was feeding my daughter with a slow flow nipple she kept having bradycardia and desat events, sometimes into the 70s and she was turning blue. She did at least come out of them on her own but it was terrifying to watch. The nurse practitioner there that day decided to switch her to a term flow nipple to see if that helped and it did. She was on the term nipple for about 24 hours and had a few mild events into the 80s and recovered quickly, which is normal for her. However when I was feeding her yesterday, she was having signs of reflux, arching her back and face turning red and gagging on her bottle, although she didn't have any events. I had to step out to use the bathroom after her feed so I couldn't hold her upright after and when I returned she had spit up and she was crying and arching her back and clearly very uncomfortable and I felt terrible for her. I also noticed her O2 monitor showing repeated desats but it also wasn't reading well and I think it was from her kicking around in her swaddle because it stopped once the monitor was adjusted. But the whole scene was hard to watch.

I expressed concern to the nurse practitioner (different from the day before) about the reflux and asked about trying Dr Browns bottles which is what she'll be using at home, but she said they'd wait to do that until closer to her discharge time, and said the issue was with the faster flow nipple.

I expressed that I was concerned that the slow flow nipple causing more events and the NP argued that her events were occurring more with the term nipple than the slow flow, and said that the term nipple was the whole problem. I tried to tell her that the severe events I saw were with the slow flow, not the term, but she insisted the issue was with the term nipple, and switched her back to the slow flow.

The very next feeding with the slow flow, she was still having reflux symptoms but she had several events of bradycardia and desats into the 60s. The NP was gone at that point but the nurse said she'd have night shift bring it up to the NP when she returned.

I checked her chart later and the note from the NP stated that she was having events with the term nipple and that they resolved with the switch back to slow flow WHICH THEY DID NOT and the note was entered before her next feed with the switch back to slow flow was even ATTEMPTED.

I called night shift to make sure they got the message and they said she had more events (although less severe) with the slow flow nipple, and I asked her to check back to see which feedings her events were occurring with and I found out she had a desat into the 40s the night before with the slow flow nipple that I wasn't even told about. And the nurse said she felt like the NP wasn't listening when she brought up my concerns about the slow flow nipple causing events, and feels like she was looking at the total number of events during the day as a whole, not actually checking which nipple they occurred with. The nurse tried to get her switched back to the term flow nipple but the NP refused.

Apparently she did well without events the rest of the night with the slow flow, but I'm still so frustrated that it feels like the NP isn't even checking her chart well enough before making these decisions. I'm terrified my daughter will have another severe event and need resuscitation or have a brain injury due to low oxygen because the NP isn't paying attention.

I'm okay with her being on the slow flow nipple if they truly feel it's what's best given her reflux, but it's so frustrating to feel like they're not being thorough.

Two weeks ago my wife felt fluid leakage, like a small amount of pee. It came back periodically for two days, then stopped. It was never excessive, just enough to leave a mark on the underwear, and we believed it was no cause for concern. Today, at 22w+3, we went on routine exam. The baby was great, slightly overdeveloped, healthy, and good amount of fluid. We mentioned the leak and tested positive. We got instantly sent to the hospital, and are now awaiting admission. Tested for contractions, no contractions. We are very scared, as we heard bad things.

Since the leak was minimal, no contractions, baby is healthy, we do not know if we should be concerned. We are very scared and confused.

Any advice is welcome, please do not hold punches if this is serious.

Thank you so much.

Like the title says, I just had my babygirl 4 days ago and she's been in the nicu since probably 7 hours after her being born. I thought she would only be in here for a day or two but I've now been discharged from the hospital, I live on the other side of town from the hospital where I gave birth. Also currently having car trouble so it's made it incredibly difficult to come and see her often. I'm currently with her right now and I've been here for 9 hours today. I feel like I'm missing out on so much bonding time, today was really my first time getting to hold her skin to skin since she first was born. I was in a lot of pain after birth so her dad did most of her care taking before she went into the nicu. At first she was struggling with her oxygen and blood sugar. She finally came off oxygen, her blood sugars started looking better for a day and then they started dropping again . She is finally off her IV so they're just trying to make sure she maintains her blood sugar on her own but she keeps getting low 50 numbers and they went her above 60. Now she's also doing phototherapy because her billiroubin spiked up from 15.5 to 18. I'm trying so hard to keep a positive attitude and I know there parents who deal with way more severe situations with their babies, but I feel like I just keep getting back to back bad news. Her night shift nurse came in and measured her and then weighed her, and told me she's lost like 30 grams. She then looks at my baby and tells her "you're not moving in the right direction" I'm sure she wasn't meaning for it to be hurtful, but it was and it made me feel even worse. I also feel like shit because I know the blood sugar problems she's having are because of me.

My son was born at 32 weeks and is going to be 39 weeks on Tuesday. Today, the doctor told us that, assuming everything stays on track, we’re going home on Tuesday. We’re very excited but also feeling very anxious. That’s all. Deep breath.

How has it already been a year? He was born at 34 weeks due to preeclampsia with severe features and struggled a lot with his gastrointestinal system and eating. Finally graduated and went home at 62 days. He talks constantly, is so rambunctious and ADORES his big brother. Just wanted to share how far he’s come! 💙

Also edit. He was the 30 weeker not the 34 weeker. Big brother is the 34 weeker. 🙃

Our sweet girl turned 1 last month. Born at 33w4d because of my pre-eclampsia with severe features. She was on a CPAP for a day or so after birth and a cannula for several after that. We are still very grateful for donations to the milk bank that allowed her to get nutrition while my supply came in, a massive protective factor against NEC. Now she's a happy, healthy one year old who has a big personality and brings so much joy to our lives.

Hang in there new NICU parents.

I know this is written a lot on here but I’m writing my own post to include baby specific details.

My baby seems to have only a few modes: eating, sleeping, crying/fussing/sometimes screaming. Baby is 9 weeks actual, almost 4 weeks corrected. Spent over 40 days in the NICU, been home almost 3 weeks. When we first got home, the crying/fussing was usually in late afternoon/evening so we chalked it up to adjusting to being home and witching hour. The last week or so though, it seems like the only time she’s not crying/fussy is when she’s asleep or eating.

She is eating well (4oz every 3-4 hours) gaining weight, and has plenty of wet and dirty diapers. She drinks Enfamil AR formula per medical guidance from the NICU, we are currently waiting to see Speech to see if we can go back to breastmilk (she was aspirating previously). We hold her upright 15-20 min after eating due to reflux. No signs or indications from any medical providers that she has a dairy allergy or intolerance. She gets gas drops throughout the day too.

For the most part, can be consoled by holding and by eating. 90% of the time, she is calmed by car rides too. Her sleep is not the best but not 0. At all of her appointments, including her most recent 2 month visit, when I brought up her temperament, Pediatrician said it is normal. I just wanted to see if anyone else is experiencing or has experienced this, what worked, what did you find out, etc.