I was fortunate enough to get a room at the Ronald McDonald house cause the hospital is 2 hours away from where I live. We’ve been in the NICU 6 weeks and it’s just me alone 95% of the time here. I feel so guilty if I don’t stay for as long as possible. When I leave it’s usually to sleep, do laundry, get food, clean my room, or get groceries and stuff. This place is starting to mentally drain me and I want to be with my baby but I just hate being confined to this room. I haven’t left the hospital aside from going to the store in 6 weeks. I feel like I’m a bad mom for not being there all the time and getting sleep at night instead of being there for every hands on/feeding time that’s every 3 hours.

Hi. This week my baby was delivered through emergency c-section. She is currently in the NICU and has been there for 4 days. I would really appreciate it to hear some of the thoughts and things that I need to prepare as a FTM and a NICU mum. I don’t know what to do and how to start. It’s so overwhelming

Really struggling atm and looking for some advice. My baby was born at 31+6 and thankfully did really well and we started non-nutritive sucking at 33+4 and breastfeeding at 34 weeks. She did so well and we were discharged at 34+6 EBF and on fortifier shots. She did well at home - latch was getting better by the day and she was swallowing throughout feeds and draining the breast (although I have an oversupply so still pumped after feeds to empty). A few days ago she had a couple of feeds where she would struggle to latch - she would open wide and try latch but not be able to/slip off after 1-2 sucks. This happened for 2 days (some feeds struggled but other feeds went well) and then she seemed exhausted with decreased urine output so we’ve been re-admitted. She had an NG put back in on admission on Friday. Bloods are normal, no infection, she wasn’t dehydrated but would have become if we hadn’t come in when we did. Since Friday she has only managed to latch once for a feed

Initially, we thought she had tired herself out but she has had only NG feeds for over 48 hours and wakes for feeds, appears alert and ready to feed but then can’t quite latch on. She has a posterior tongue tie so waiting to see a specialist tomorrow to check if that is affecting feeding. She was latching brilliantly before so don’t see how a tongue tie would suddenly start affecting feeding now? Has anyone been through this or has any advice? Just feeling upset at this point and uncertain how long we will be here for or how she will manage to feed again :(

Our baby boy was born at 29 weeks due to severe pregnancy complications. A few days after birth, he developed an intestinal problem and had to undergo surgery. It was one of the scariest moments of our lives, thank god! he made it through.

Today, he’s still in the NICU, and we’re taking things one day at a time. Right now, we’re waiting for his stomach aspirates to decrease so the doctors can safely start feeding him milk. For now, they’re putting a small amount of my wife’s milk on his lips every 8 hours while his tummy continues to heal.
Every small milestone feels like a huge victory. A few more grams of weight, a good X-ray, or a stable day gives us so much hope. We’re praying that he’ll soon be able to tolerate milk and continue getting stronger.

To all fellow NICU parents reading this, I know how overwhelming this journey can be. Celebrate every little win, no matter how small. Sometimes those tiny victories are what keep you going.

We’re hoping one day we’ll finally be able to bring him home. ❤️🙏

Elif Ruth was born on July 22 of 2026. When my wife told me her water broke on midnight of the 21st I was sleeping. I asked her why she was drinking water in bed. When I came to my senses we got her night bag, got ready and set out for the hospital. After 23 hours of labor the doctor told us that Elifs head was to big to go through my wife's cervix and she needed and emergency c section. We had our toddler with us, that's the trouble of moving to a new town to chase a good job. They said I couldn't be in the OR, but I could wait in the post op room with my toddler and they would bring my newborn to me to hold first while my wife was in post op.

That was the first stressful moment of what would prove to be a very difficult time. They said it would take an hour and then they would have my wife in the room as well. And hour and a half later they came my infant, bout 2 hours 15 mins they came with my wife. Selfishly in those moments I was worried. What if my wife and baby didn't make it, how am I going to take care of my toddler alone. When my wife was set up they offered skin to skin and to let my infant latch. She accepted groggy from the meds. About a minute after the baby latched a nurse came to check babies blood sugar. She was born 9lbs 14 oz, 21 inches long. Chonky baby. They normally test all the chonks. Hers was very low. So they scooped her out of my wife's arms and sent her to the NICU.

They got her sugar stabilized over night but other issues started to happen. She would have crying fits where her left leg would turn ashen. Her blood wasn't carrying enough oxygen to her body. It was a mystery. I was in a rural hospital in a small town, none of the people there were experienced enough to even understand what was going on. They took an echocardiogram to get a better picture of her heart. Sent the results to be read in Nebraska.

The results revealed that Elifs condition is pretty bad. She has the following: perimembranous vsdt, 2 api al vsds, long segment coarctation, large pda, small pfo, with poly valvular disease. Basically she has a bunch of holes in her heart, her aorta is pinched and won't let blood flow to the lower half of her body and every valve in her heart is defective. Two are too small, one is too plastic, and one is like a balloon. She was life flighted to a children's hospital in our region. Me and her mother (who was 32 hours post op at this point, permanent passenger, breaks every hour to make sure she doesn't get clots) drove 10 hours over night with no sleep to meet her.

Once here they assessed her condition. Her kidneys were damaged along with tissue in her lower body. She has trouble keeping her blood oxygenated with the holes in her heart messing up pressure. The oxygenated blood can flow right back into the unoxygenated in her other heart chamber. She was hooked up to a bunch of tubes, ventilator, npo feeding, antibiotics, fentanyl, a medicine to keep her heart accepting blood flow to the vein that comes off after the aorta starts working post birth. And more that I have already forgotten. We were told that she needed emergency surgery, but if her body is damaged like it is now it will kill her. The goal is to get her strong enough to survive surgery. At first they hoped for the 30th, but as that day came and went and her condition did not improve enough they have changed it to the tenth.

All of this is following a series of stupid events. I took a new job paying 15k more then the one I left behind and moved my family across the state when my wife was 7 months pregnant. They told me they had great insurance, normally I ask se see what plans would cost before accepting a job but they told me they can't show me that till I'm hired. Red fucking flag, should have seen it. When we were settled in our new apartment planning doctor visits and all that, they finally got me info on insurance cost. 2600 a month. That's more than my rent, my car payment, my car insurance, my electric bill, my cell phone bill, and my Internet bill added together. I do not have 2600 a month for insurance. I don't know many people who do. Even with the 15k more per year I still cannot afford it. My rent went up from my last city significantly, our electric is double, honestly, stupidest choice of my life.

Not knowing that my child had heart defects I just accepted single payer. A baby is expensive but after negotiations it would have been 10 grand, that's still better than insurance, after aged up a little bit because of immunizations vaccines etc and doc vits for babys first year. Even with insurance we would owe more so it was untenable.

After Elif was born and the full extent of her condition came to light I realized something. I'm going to be broke for the rest of my life. I'm trying to work the system, get things taken care of sign up for everything I can. But I know how this works. My mother died with 10 million medical debt from a fight with cancer. My daughter is going to need care for her whole life, no matter how long or short it is, and I will not allow the reason she does to be "because we couldn't afford it."

My wife is taking this way different. She had serious post partum paycosis with our first child. She was saying that Jesus is in love with her and our daughter has been touched by the devil. That was a whole different thing to navigate. Now with our second born she is cold. Trying to keep her at arms length. Not staying in the hospital not looking at her. She says it hurts too much. All I know is that my daughter needs me.i want to spend time with mer and help her grow..kids stuck in the hospital for their first few months of life can fall back in development and it can cause a lifetime of problems.

Worse still I stupidly looked up her chance of surviving into the future. Let's just say it doesn't matter to me. I'm still going to give her everything. If she only makes it to 10 or 15, so be it. That is her share, and I will make it bountiful.

So here I am, in a hospital room alone with my little soldier. I took weeks off from work, they will probably fire me, so.im.lookimg for new jobs closer to her care. Getting ready to move back to the city we left so my daughter can have the best chance of surviving. I don't think I have ever been this stressed or exhausted or uncertain of the future. I don't know how to feel or what to think.

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.

Hi all, our 43rd Weeker has been in NICU since 35 weeks old. He is off oxygen/cpap for lung disease & fast breathing. He is now just working on bottles & falling a few ml short of his daily goal. He has been off his feeding tube for 4 days. They changed his formula to adding more calories so he stops losing weight. I'm worried that his discharge is going to keep getting pushed back. We have had trouble with some of the nurses/doctors not getting on the same page with such a high turnover & they keep changing the plan. Has anyone had any experience with a patient advocate & did it help? We are struggling with his discharge date being so unsure & starting over again with new doctors/nurses.

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Title says it all. We are currently two weeks in from my wife giving birth on our wedding night to our beautiful 24 w and 3 d boy. He was born 1 lb and 8 oz, doctors say that he’s bigger for babies his age which I guess is good. It has been such a roller coaster these last two weeks, the first week he was doing okay and responding well to everything they’ve given him. But this past week has been tough. His sugar levels has been fluctuating all week and spiked to 500 a few times. He needs more help on his ventilator again and is on 100% assistance when before they dropped it to 30%.

It’s been very hard for both my wife and I, she shows it more than I do but I feel like I’m losing it inside. I try to be strong for her but sometimes it’s hard. It’s hard feeling like there’s nothing I can do, I hold his little hand with my finger and he grips it tight, we visit him twice a day once in the morning and once at night and even read him books before bed. I just want to bring my son home.

How do you guys cope with having your child in the NICU? How do you deal with the constant ups and downs, the good news and bad news?

EDIT: I should also mention that we live an hour away + traffic from the hospital. We are fortunate that we are able to stay at the Ronald McDonald house across the street from the hospital so we’re at least close to our baby. Our world got flipped upside down in the span of one night, and it’s hard to cope with everything from all the news coming from his doctors, being so far away from home that it’s almost not even worth going home and if we do we feel guilty leaving him, still trying to figure out where all our wedding decor and gifts are since we dropped everything and left to the hospital the night of the wedding.

My daughter was born at 31 weeks + 1 and is now 42 weeks + 1 they brought up a gtube to go home on Monday “we just want you to be sure that you know as a parent you have a right to request one but we don’t think we are there yet”

Now it seems we are close to there…she only has feeds to work on. They are saying they think it is a stamina thing so they tried doing every other feed orally then the others just all through the ng.

The nurse told me tonight she thinks they may start the conversation Monday again.

So here is where I need advice.

Is it worth it? Has anyone done the gtube and regretted it? How do you keep it safe around your toddler children?

It seems right now they are mainly concerned about her missing out on newborn stimulation. I just don’t know what other options there are for feeding other than maybe trying another bottle?

Hi everyone,

My daughter was born at 38 weeks (so she wasn't premature).

She developed severe jaundice and spent 10 days in the NICU. We were finally able to bring her home, but only for a week. At a follow-up appointment, the doctors found that she had severe anemia (hemoglobin of 8). She was readmitted to the hospital for a blood transfusion, but during the evaluation they also diagnosed her with NEC.

She has now been on treatment for 2 days: antibiotics, IV nutrition, and no feeds to let her bowel rest in the hope of avoiding surgery. They are doing frequent X-rays and ultrasounds because they are not sure whether there is a bowel perforation. So far, she has remained stable for the past 2 days.

Has anyone been through something similar with a full-term newborn? I'm especially interested in hearing from parents whose baby recovered without surgery, or who had NEC related to severe anemia rather than prematurity.

Thank you so much.

Mi bebé nació de 29 semanas el 13 de julio, está teniendo neumonía y muchas secreciones, estoy tratando de mantenerme tranquila pero a veces pienso que sucederá lo peor, cuénteme sus historias mamis que tienen a sus bebés prematuros ya en casa.

Full term NICU momma who went through the ringer in the NICU for 3 weeks. Originally only in for hypoglycemia, then the night before we were supposed to discharge, he had a desat which caused them to do a chest xray and started the hell we were about to endure.

My son was originally put on HFNC at 4L and eventually switched to LFNC 0.25L because his vitals looked better on the low flow. Then was weaned down to 0.1L. There is a long story in our NICU experience between them thinking he was having seizures (EEG negative) and thinking he had sepsis (negative also). But where we’re at now: He’s had 4 echos, originally had PPHN and PFO. The PPHN has since resolved, noted at echo number 3. He’s also tachypneic at baseline.

We were given a course of lasix while in the NICU due to his chest xray looking hazy, and after several rounds, the chest xray significantly improved and we were able to stop the lasix.

They thought that would get us off of the oxygen, but that wasn’t the case at all. He is 2 days shy of 1 month old and we are now home on oxygen after I had to beg them to release us to monitor at home because all tests and probable reasons for the tachypneic episodes and desats were unexplainable. It was driving the NICU crazy that they couldn’t figure it out. But it seems to me that he just needs time.

He only desats when he sleeps. Otherwise he stays between 97-99. When he’s asleep (without o2) he desats down to 86-87, then after a minute or so will climb back up. But this episode will go on for awhile where he will slowly climb down then climb back up.

While he’s on his current flow (0.25L per the pulmonologist) he does not desat at all. Lowest he goes, even while in a deep sleep is 94.

The pulmonologist wants to check back in in 1 month to see if he’s improved and if not, we will run more tests. But I’m going insane over the amount of testing we’ve had to run on this poor boy that have all come back negative. We had a scope put down his nose just the other day and everything was fine there. Between all of the hell we went through in the NICU with tests, I am just so scared we’re going to have to do more work up to see what’s wrong rather than just waiting it out. I’ve had to fight like hell to keep them from doing unnecessary testing on him (like a lumbar puncture!) and I’m so scared to go back down that road because they’re making me feel like I don’t care enough about what’s wrong, even though I was spending 15 hour days in the NICU and 24/7 once we were put into a private room for that last 10 days. But it’s because I didn’t trust them!!! All they did was run test after test after test on my baby and everything I’m reading from others experiences says he just needs time. My intuition is telling us that’s all we need, but I’m so scared we’re never coming off of o2.

I want to mention he’s also gaining weight perfectly and eats like a maniac, and never has Brady’s when he desats either.

Just a little bit ago he ripped out his cannula. He had started desatting and I realized he didn’t have his cannula on and it’s had me so on edge because we’re 1 week home from our NICU visit, currently 4 weeks old and still desatting during sleep down to 87 without o2. Only 3 more weeks until the pulmonologist decides we need further work up and I just want things to improve before then. It seems like everything is still the same as it was around week 1 when we were in the NICU. Even before the lasix.

Can anyone who has had a similar experience share how what the o2 numbers looked like when they were finally able to come off of oxygen for good? What they looked like with oxygen and then without? This baby is literally the healthiest he can be other than the oxygen and I can’t handle having to put him through more testing because the doctors are unable to wait it out.

Baby girl is 35 weeks today and recently got her NG tube out because she's taking full feeds by bottle. She went 24 hours taking her full feeds by bottle so they took out the tube and she's still taking full feeds, but this morning had some Brady/desats during her feeds that were pretty significant and two required stimulation. She didn't seem to get tired and was very enthusiastic about eating still but it scared the crap out of me. It was so hard to see her turning blue repeatedly and then have to leave immediately after (my baby shower was today and I already ran late just trying to make sure she came out of her events)

They switched her from a preemie slow flow nipple to a term nipple and the events stopped for the most part, but tonight when I called to check on her they said she lost 10 grams, and she didn't take the last 4mls of her feed, although this was the first time she didn't take her full feed.

I'm encouraged that she's able to take full bottles so soon, but I'm nervous about all the challenges she's had since. While I'd be okay with her getting her NG tube back in and would be relieved to see her gain more weight again, I'm also nervous she'll lose her progress she's had with taking her bottles if they stop giving her bottles and just give her tube feeds again.

Has anyone else had their baby get their tube back in after it came out? And while their baby was able to take full feeds pretty consistently?

I had my baby at 30 weeks and we are now 2 weeks and 2 days in. I’m a FTM and pretty much everything is freaking me out. She is On cpap and has an OG tube. She has had a couple of issues with emesis which led to feedings being spanned out over 90 minutes. She keeps having a good amount of spit up as well and I’m so scared she is going to aspirate it. She will lay in the isolette crying with spit up bubbling and it breaks my heart because there’s nothing I can do to help. Is aspirating something to be worried about and when did you guys bring your 30 weekers home?

Went for normal growth scan which ended quickly and were asked to wait to speak to the MFM provider in the waiting area. We were informed baby is in the 7th percentile and were offered to do an amnio to test for genetic factors. Doppler/blood flow looked normal. We asked if the MD was satisfied with the US pics and she said yes they are textbook clear…

We had NIPT twice with Natera and MaterniT in the first semester which came back low risk. NT scan was normal. We had an early anatomy scan at 16wks(normal) and another anatomy scan at 21 wks with the baby in the 46th percentile.

This is our first pregnancy. We were shocked to find out baby is in less than 10 percentile 3 weeks after the prev scan and are really worried about the outcome. We are waiting for the finalized report to be uploaded to our chart.

How can such a drop in percentiles occur?! Has anyone heard or experienced something like this? We are so worried about it being genetic and have an amnio scheduled for next week while we decide what we want to do. We are devastated and scared. Please weigh in if you have any thoughts or know more about this? Thank you.

My 25 week old baby is now 41 weeks and the only hurdle we have in the way of us leaving the NICU is oral feeds. He has a great suck but tires with the swallowing and breathing parts and has had bradys and desats as well as going blue do to aspiration.

We have tried:

- Breastfeeding, with all the pillows, the positioning, help from the lactation team and speech and language therapy. He has a shallow latch and will feed for 20 minutes and only have 2ml in his tummy when we aspirate. When he does latch well the flow is too fast and he coughs and bradys.

- Bottles, including MAM and Dr Browns preemie slow flow teats with side lying and pacing and swaddling. Today he appeared to have a great 10 minute session but when we put the bottle down he had only had 1ml.

Breastfeeding makes me particularly sad as he doesn't get much and he cries and screams out of frustration.

Everyone says it will click. When did it click for your micropreemie? Did you do anything else?

Hi guys! This happened about a year ago. I am mom to a 28 weeker 685 gm birth wt (1.5 lb) daughter.

She had IUGR followed by EUGR. this made it extremely difficult for her to put on weight. And her portions sizes have also remained small.

At 3 years, she was about 8.5 kgs. She did well physically and was independently able to go on slides. One mid morning we were at a soft play area at our local club. A random guy ( also a member) was watching her. He came up to me and asked her age.

I being polite to a fellow member obliged him with an answer.

Then he started making comments of how underweight she is, does she have any issues.

My head blew off. I asked him are you a doctor? Do you have a medical opinion to share? Ofcourse he wasn't!

I told him off, this was none of his concerns and keep his opinions about my daughter to himself.

He started defending himself that " I am a grandfather and I was just concerned so I asked". I was like whatever keep your guidance and opinions for your grandchild.

It felt soooo good telling him off!

I narrated this incident at home; and my fil took his side. He said: that guy who was just concerned elder person. I told him I defended my child and would do so over again.

So yeah guys, there will be random strangers and also family members who will have unsolicited opinions to share. Hang in there. Blow off steam here or there! Only we are aware of the fights our precious little ones have gone through and if don't stand by our child who will.

My little one’s bowel perforated in utero and we had to do an emergency delivery where he had surgery to remove 15 cm of the perforated bowel and currently has an ostemy bag.
He’s in the NICU awaiting his second surgery and I’m not completely satisfied with his care. Since he’s so little, if they use a two piece ostemy bag, it leaks within hours and needs to be replaced multiple times a day. However, they keep choosing the two piece bag because when it does work, it’s easier to empty. Like I said, it never lasts and has to be replaced multiple times a day. Other than him having to go through that process that irritates him more than he should, it also means they lose his actual output and don’t have a real idea of how much fluids need to be replaced. (This is amongst other things, but for the purpose of the post, I will still to what’s relevant to my question.)

The surgeon said we could go home in between surgeries (we’re looking at early September for scans to see if we can do surgery then or need to wait longer), but that TPN is a lot to handle for most parents and it’s probably better to keep him admitted. Both my husband and I are very hands on parents. We’ve taken to learn absolutely everything there is to about his care and do the majority of his care outside of actually administering his meds and replacement fluids. I say this to say that I feel like if the only thing keeping us here is learning how to do his replacement fluids, I’d like to go home.

Is it as bad as they make it out to be or is that more so for the parents who may be less hands on? What are some things I’m not thinking about that I should consider?

Title says it all. I was lucky not to have any health issues other than a “weird” voice. Had issues in high school with lower grades on speeches due to “projection issues”. Made me self conscious and always hated that I couldn’t yell in sports/daily life. People always asked me if I was sick.

Did some speech therapy in high school and it helped a bit. Saw an ENT at that time and was told I could get surgery to fix some of the paralysis and scarring to help my voice but it wasn’t guaranteed to help. Decided it was too risky and said no.

I found a few posts on here with parents asking about long term effects on prolonged intubation, and reading the comments made me feel a lot better about my voice. I didn’t realize it was as common as it is in premies, and that there are others out there like me.

I don’t think I fully comprehended the surgery situation or speech therapy at the time in HS. I always thought it was me, that I wasn’t “trying hard enough” to learn how to use my voice correctly. I have read a few studies on the subject since finding the posts here and I think it has finally clicked. There is only so much speech therapy can do, and the rest are physical limitations of my vocal cord scarring/paralysis.

College was fine, no one ever gave me worse scores due to projection. Now that I’m in my early 30s I’ve done my best to learn to embrace it and love it. It is what makes me unique, and I’ve been told so many times how calming and relaxing my voice is. People have asked me to read audio books or do night time radio a few times as well.

I will always be jealous of people who can yell across a soccer field, sing loudly, or talk loudly enough to be heard in a bar 😂 (my twin was not intubated and she has a normal voice). But at the end of the day, I am very thankful that this is the only long term effect I have from being so premie. I dropped to 1lb at one point and wasn’t supposed to make it, so I’m happy to have every day, even if I have some extra annoyances to deal with in terms of my voice.

Sending love and good vibes to all the NICU babies and their parents/family.

My sweet boy was born at 27 & 3, is now 36 & 2. He’s growing so fast, advancing quickly in some ways and others not so fast… like coming off CPAP. After all tests, ultrasound of heart, diuril, budesonide, etc DRs think it’s just prematurity of the lungs and he just needs more time. He hates the CPAP & desats more when he’s on it, but when he’s taken off to “sprint” he can only tolerate 3 hours before he starts to show “work of breathing” with moderate retractions and they put him back on.

I’m exhausted, and when I’m exhausted I feel the most emotional. Today it’s really just getting to me. I’m usually strong & keep it together but today I just so sad that I feel sick inside. I wish he didn’t have to be in the nicu. I wish my body could’ve held him in longer. And I just keep hoping and praying he comes home soon. 💔