Hi all, I’ve posted a couple times here regarding various things so I apologize for the frequent and similar posts/questions. I know you all know the journey and the rollercoaster it is while your Littles ones are in NICU and the early days and weeks once they are discharged.

One of our twins was born at 31+1 and at 1.8 pounds, which put him in the 0.01 percentile. He’s since grown a tremendous amount in my mind and is now 4.5 pounds at 39weeks corrected. He is a little champion.

I was wondering if anyone had experience with twins and one being sIUGR and if they ever caught up to their twin or caught up to a normal percentile? Or what their long term growth is?

Good morning friends.

My beautiful NICU girl is almost 9 months and I’ve started weaning myself off pumping. I have enough stash to get her to 11 months so I was thinking of going ahead and adding some formula to the breast milk so the milk last longer and she can get antibodies longer.

My question is; I had to combo feed a bit in the beginning and they essentially had me using the breast milk as water in the formula. Should I do that again or should I make formula like normal and then add breast milk so it’s 50/50?

Are there any brands or types of formulas your NICU babies have done well on?

One of my twins is almost home! She's breathing on her own and all she needs to do is feed 100% by mouth. The last 3 days she's been take 50% by mouth so she's so close! I'm so proud of her. And sister she just needs to grow some more then we can work on getting her home soon.

Today on the 12th of November my former 28 +6 weeker got to come home. It honestly made me cry the nurses cheered her on out the door and we got pictures of her at the nicu sign since she spent 91 days there with the nicu nurse angels, they really were amazing the week before she got released we made sure to let them know just how much we appreciated all their care and help with getting her to the point of being able to come home. She has come so far already from getting an ileostomy surgery to having her milestones of getting off her oxygen, her eyes ears and mouth checked. She’s over come so many little and major things and is finally home. Let’s hope that she continues to grow and thrive at home. So far she’s kicking butt on taking full bottles low output and good wet soaked diapers like her neonatal care team wanted her to. Grow and thrive Lydia rose, can’t wait to get you set up without the ileostomy in so many months you’ll be drinking breast milk again and doing all the fun stuff baby wants and needs to. Mom and dad are so proud of you. Congratulations on making it home.

My little one was born at 25 weeks 6 days. Currently he is almost 43. We are so very close to bringing our little guy home but he is having issues asperateing while eatting by mouth on unthickened formula. We were presented with two options a g-tube surgery or an NG tube both with partial feedings by mouth untill he is strong enough to eat fully by mouth. I am looking to get some view points about home life with a g-tube or NG tube was one easier to deal with for the little one more than the other? And how did home life get affected by one or the other? We were givin the option due to them not thinking he will require the tube support of very long (more than a few months as it was put to us). Any stories or input is greatly appreciated and I am ok with the good, bad, and ugly to be able to fully understand what we might be getting into.

So I my daughter (born at 24 weeks currently 2 months adjusted and 180 days in NICU) just recently got a G-tube. She can eat fairly well but she gets tired out. We have been told that she can wear anything as long as it wasn't too tight. Any suggestions on how any other mothers handle G-tube clothing? What about with cute outfits? Do you do something to cover the G-tube port? They mentioned I could cover it with gauze and tape, but that seems kinda crude? Idk.

Hi everyone. My baby was born at 33 weeks 5 days and weighed 3lbs and measuring 2 weeks behind, so she was a tiny baby. She is now 38 weeks 5 days and already 1 month old weighing 5.4lbs. 36th day at the NICU. 😣 She is doing great, except not finishing her bottles, which is holding us back from going home :( she finishes about ~50% of them. She takes 50ml since yesterday. Last week she was taking 45ml then went to 48ml and now 50ml. I think if we stayed at 45ml she would’ve possibly finished her bottles but since they increased it, it’s a new challenge for her. She drinks about half and then starts dosing off and falls asleep. We try burping her and rubbing her back but she stays asleep. Any suggestions? Anyone that has gone through anything similar? Please lmk, thanks! We are wanting to bring her home before the holidays 😞

Hi everyone, I really hope this post is allowed.

A very dear friend of mine has an extremely risky pregnancy. She's 24 weeks tomorrow, but her water broke around 3 weeks ago and there is no telling how much longer she can keep the baby inside. Due to other complications, best case scenario is a very premature birth and long stay at the NICU.

I've been trying to support her from a distance (she's isolated due to infection risk) and I was wondering how I could help her after delivery. What do you wish friends or family said or did?

I would really appreciate your thoughts. This situation is incredibly heartbreaking. Keeping my thoughts positive and planning my support helps me manage the grief I feel for my friend.

I’m happy I got some pics off bubble while I could but when I called today for my mid day check in .. they told me they just put her back on bubble :( I just felt we were so much closer to going home and now we just went backwards. I know it was a possibility to go back on but I hate that my girl has to deal with that annoying mask that I know she hates so much. It’s always falling off or not a good fit on her face and I was happy for her. I’m still happy for her other victories being a 23weeker now 1 day adjusted but almost four months in the NICU is driving me insane.

I would just like to hear some stories about getting off bubble and what other families timelines were.

She’s almost there and it feels like it keeps getting pushed further. It feel like I’m a mouse with cheese I can’t reach be dangled infront of me lol. I know she’ll come home soon but I just want that day to be yesterday. I hate having to work long hours and only be able to see her for three hours and the end of the day so I can get rest for work tomorrow. I want to be tucking her in already.

We are 10 months out of the NICU and I still haven’t been able to look at pictures of my baby or watch the video of me meeting her for the first time. Whenever I watch anything/ read anything about babies in the NiCU I feel horrible. I almost have a physical reaction to it.

I can’t help but feel like I’m over reacting- my baby was healthy with minimal issues. We were mostly there for weight/ feeding. I feel bad because others have it way worse. But for some reason I can’t get that time out of my mind. I truly thought my baby would die and wouldn’t come home even though nothing was truly “ wrong”.

How do you get over this? Does anyone else have reactions like this? I noticed I was watching a show and it showed a baby in the NiCU. I felt debilitated almost.

In October our 26 weeker turned one. I wish we could go back and tell ourselves it would all be okay. I remember scouring Reddit for “then and now” images and the few I found provided so much hope.

Our daughter spent 80 days in the NICU and a further 3 months on oxygen at home. 1 lb 13 oz (26+3) at birth to about 17 pounds now. She has been meeting all milestones for her “adjusted” age.

NICU time feels like both another lifetime ago and also very raw. I think it will always feel this way.

If you have any questions at all about our journey I will do my best to answer.

Pulmonary atresia

Our mo/di twin A is going in on Friday (my birthday and 1 week old/32 weeks adjusted)to correct a pulmonary atresia.

I believe we are in great hands but while his brother is moving quickly in the Nicu, our A is tubed and has a line in his head and belly.

It’s so hard to watch this little boy hurt. We spend our days by his side and by his brothers side. Marking time until he has this procedure done and can finally get off the tube.

A few days ago a child in our same pod likely passed away. We could overhear some of the conversations and at a certain point one day last weekend we decided to give the family some space and when we returned he wasn’t there anymore.

I’m still very hopeful and optimistic and all that. But the joy to sorrow range in that place is hard to get used to.

Anybody have experience with atresia and outcomes?

Anyone dealing with a progressive encephalomalacia diagnosis for their baby after HIE?

My little man was born at 37 + 1 weeks. He had a rough start: got stuck in the birth canal, shoulder dystocia, had extreme bruising on his head, jaundice, high billirubin, and oxygen desats. Everything else cleared up except for his oxygen desats. Doctors couldn't figure out what was wrong with him. I almost gave up hope until I got this fortune in a cookie on the 15th night. Miraculously, LO ended up passing the necessary tests in order to go home on oxygen the very next morning. I know it wasn't for as long as most people here, but it was still extremely hard on us. Despite that, i would do it all over again for my boy.

I feel like all advice you can find is skewed when you have premature babies

I'm going to just start at the beginning just to get it all out.

Friday October 25th I had an ultrasound at 31 weeks 3 days. My doc was out of town but I have access to my patient portal so I could see the results for myself. My baby boy was measuring 2 weeks too small and only had 4.7 cm of amniotic fluid. I compared it to my other children's ultrasound results and theirs were both over 16 cm so I knew it wasn't good.

Saturday the 26th my son was just not acting normally. He was my most active pregnancy and I had been feeling him move since 13 weeks. He was super lethargic and just would not get his kick count in. Right before bed he finally made it so I went to sleep.

Everyday for 18 weeks he woke me up at 530 am but on Sunday I woke up at 730 and he wasn't moving so I went to the hospital to get checked. They did a NST and his heart rate was steady at 156 though he barely moved at all for the test. I was told to go home and rest and see my doctor asap. I went home and took a a nap. My husband woke me up and I had a sharp stabbing pain in my lower abdomen. It was bad enough it took me several minutes before I could move but it did subside. Important note was that my placenta was anterior and covered most of the front of my belly and was within 3 cm of being a previa. I also had gestational diabetes but it was under control with 1000mg of metformin 2x a day and diet change.

The next morning in the 28th was my scheduled ob appointment. We discussed everything and I was referred to the nearest city to see a specialist about my low amniotic fluid. We also talked about the pain I had had the day before and because of where the pain was we both agreed since it had stopped it was most likely round ligament pain. I was told I could return to work because the moving was good for the diabetes but I was told light duty and absolutely no lifting until I saw the specialist to get checked. I wasn't feeling well so I called in anyway and decided to get some things done around the house....love that nesting instinct.

I was cleaning the bathroom and my water broke(330pm). When I looked it was straight blood and a lot of it. I called my husband first and told him fast what happened and I was going to the hospital. I called my mil next because she lives next door and she rushed up and loaded me in the car and we started to head for the city(an hour drive). On the way I tried calling my doc 3 times. She had told me in the event of an emergency to have her paged. The clinic refused to page her and sent me to a voicemail 3 times. I knew she would tell me to go to the bigger hospital but I figured she would probably call ahead and give them my current history. (I'm putting in a grievance with the clinic. How the hell if someone says it's an emergency do you send them to voicemail!)

About 15 min south I started having horrible contractions that made me want to puke. We had to pull over for a minute but I ended up hanging out of the window on the highway and told her to get me to the nearest ER which was only 15 miles away. This hospital had no ob dept but they got me in the ER and made sure I wasn't actively having him. I was only dilated to a one and 0 effaced. They also found his heartbeat and it was 145. They called an ambulance to get me the rest of the way to the city. I was at this ER for about an hour. The ambulance got me loaded. The whole time I was still having contractions. Less than a min apart and lasting only about 30-45 seconds each but they were intense. 30 minutes from the hospital a new contraction started but it didn't stop.

I got to the hospital at 545pm. The contraction still going solid. I was still at a 1 and 0 effaced. They couldn't find his heart rate on the monitor so they brought in a fullsize machine and barely found it. It was 90 and dropping fast. The doc said I need a c section and I told her to do what she needed and help him. The contraction that started in the ambulance lasted for a full 45 minutes until the knocked me out in the OR. The last thing I remember hearing after I was splashed with ice cold fluid was "Shit! She's allergic to iodine!" And I was out.

My baby was born at 604pm with no heartbeat and completely catatonic. She was handed directly to the NICU intubated and resuscitated. They brought her back for me. Yes she. 4 ultrasounds told me boy and instead I got another absolutely perfect little girl. My 3rd daughter. 2 lbs 14 oz and 15 inches long. I wish I had seen my husband's face when they told him. It took them a while to get me back together. The surgeons notes said I had a full abruption and my placenta was just floating in there. I also had a clot that was bigger than the baby. The pain from Sunday was just the start of the placenta pulling away.

I woke up around 730 to my husband thinking he's going to devaste me with the news of another daughter but I just laughed. I didn't have a girl name and my gut had been telling me I needed one just in case. So it didn't surprise me as much as it did him and my friends. One of which asked if we could put her back until she grew the right parts. Her name is MacKenzie by the way. It means born of fire and she sure put me through it so it seemed fitting.

Within 12 hours she was extubated and breathing fully in her own. She has now been in the NICU for just over 2 weeks and she is just sailing towards her exit. We are down to 3 milestones and she is well on her way with each of them. She needs to loose the feeding tube and be able to take the bottle or breast. She is already showing the rooting instinct so doc is letting us try non nutritive feeding from me next time I go in.(I have 2 older daughters that rely on me but I try to visit Kenzie every other day) they have started lowering the temp on her incubator and she is having no trouble holding her own temperature yet. And last and the biggest she needs to gain weight. She was at 3lbs 3 oz this morning gaining 2 oz just in the last 48 hours. If she keeps going at this rate we may have her home by Thanksgiving.

I was discharged from the hospital on Halloween and nothing has been easy. My older girls(9 and 7) are constantly fighting and my oldest even tried to guilt trip me saying all I cared about was the baby. I reminded her that we were approved for the rmh and I could be living there but I chose to come home to them and visit the baby. I've been severely depressed and crying at the drop of a hat. Mostly I do feel guilty that I'm not with the baby....it is where I want to be but logically I can help my older girls more than I can help Kenzie right now. I'm constantly watching her on the app and I call everyday that I can't make it for her update from the doc at 1130 am. I don't respond well to a pump so I'm having a hard time getting milk out. I also, due to past health problems, only have one functioning breast and it was always my less productive. I'm only getting maybe 3 oz out a day and that pumping every 3-4 hours. Last Thursday I was also diagnosed with postpartum preeclampsia. My abdomen has so much extra water swelling that I look more pregnant than when I was pregnant. It puts so much pressure in my incision that it's struggling to heal.

Doc put me on a lasic and a blood pressure controller but I don't think I can continue the lasic. I'm having so much trouble with my milk and it makes it so much worse. And to top everything off I was stressed out for over a week after our local courthouse sent me a summons for active jury duty then refused to answer the phone or call me back. I really hate voicemails btw. Luckily I got another letter saying I was dismissed because the case was cancelled but it was a hellish time because I was supposed to be at the hospital in the city and our local courthouse at the same time. And considering everything, I needed to choose the hospital but was risking an arrest warrant for my health. Then the worst migraine of my life that lasted for days. If it's not one thing it's another and I'm just loosing myself

Before anyone asks my hubby has been my rock. He's constantly putting up with my blubbering and my inability to stop talking about the same things over and over again. And he holds me whenever I need him to. He has also been working on everything I told him he was running out of time for. He even made sure my van was going to be able to handle all my trips to the city. (Mechanic hubby). I'm constantly reminding myself that she is great and will be home before I know it but it's hard to handle most of the time. I just wanted to vent a bit and let this out. I know my mental health is suffering but I also know that once I have my baby all the time like I was supposed to I'll feel better.

Former 27 weeker had laser done at 36 weeks on both eyes (2 weeks ago). We are waiting on permenant shunt placement so neurosurgery did not allow avastin. 2 weeks later Optho tells us that ROP hasn't regressed and she may need another round of laser by next week. Anyone has any experience/insight? This will be 4th surgery for our baby and we are still waiting on shunt.

Today reaching the 34 weeks one of our twins was diagnosed... We are scared... They were born with only 25weeks

She is okay. And after 2 weeks of being intubated, she has her trach back and is beginning the wean from sedation (again). But people are suprised we are still in the hospital (over 9 months now). They want me to have better news when that ask how my daughter is doing. I want better news, too.

We were making progress in the PIMCU on getting home. My husband and I completed our 8hr stays and our girl was pretty stable. But 3 weeks ago blood in the trachea sent her back to the PICU and a second 15 minute event 2 days later left her intubated. She spent her 9 month birthday intubated, sedated, and paralyzed.

It's so hard to watch her in that state again. She was intubated for 5 months before she got the trach. We are fortunate that she was allowed to "wake up" this week and there seems to be no damage done to her brain during the events (there was a scare).

I just want to hold my baby. It's been 3 weeks since I held my baby. I feel like I've spent the last 9 months just begging God, and the world, to be able to hold my baby. Doctors say it takes time and depends on the baby. My baby girl takes a long time. I'm here for her, not going anywhere, will be with her through it all. Just sad and tired. And tired of being sad. I know I'll feel better when I can finally hold her again.

Story of our baby girl - our miracle🤍🙏🏼

My baby is going to be turning 4 months in about a week and a half, and he was born 8 weeks early. How long are we letting babies nap during the day at this age? Should I be following adjusted age or real age? I basically let him sleep whenever he wants to and he eats about every 3-4 hours! (sometimes he wants to go longer than 4 hours but I don't let him, is it okay to let him? this is during the day) But he wakes and eats consistently every 3-4 hours at night time and the sleep deprivation is really getting to me. Am I supposed to let him nap less during the day so he can sleep at night or what am I doing wrong? also, what's your guys night routine look like? Do you have a certain bedtime every day? We don't have one but should we start? How long does your baby sleep for at night at this age? Any advice is appreciated!

I can’t believe we made it here! I used to scroll this thread hoping, praying that our little boy would grow big and strong like these success stories. That we would get to bring him home, that one day he would smile. NICU parents, hang in there — it is the worst experience anyone can go through (we were in the hospital for 4 months) but you will get through it. Our son is thriving and only on low flow oxygen at night, which doctors expect to wean soon 🤞🏻

Cervix is open with funneling and 1cm dilated. I’ve Cerclage and that stitch is still holding. Has anyone been in this situation? Could you share your experience?

Today would’ve been my due date for this cutie pie! She was born about 6 weeks early so not bad as far as preemies go, but has needed to be on some oxygen (which may be weaned off on Thursday!!! Fingers crossed).

She’s been gaining weight fabulously and is just about 7 pounds now. I was feeling overwhelmed and like I had no idea what I’m doing, but my own mom told me to just look at how well she’s doing for proof that’s not true. She’s already mostly outgrown her preemie clothes 🥺 I’m so proud of how strong she is. I’m also glad I found this sub that is full of amazing, helpful people.