Our little boy came at 33w 1d at 3lb 1oz. This is our first kid, and it's hard having him in the NICU. We are able to visit him every day, and he seems to be doing well with his vitals. He's just small. But as a FTM I'm just soooo nervous about him and really need some good vibes. We love our little buddy, and I feel so sad that my body couldn't help him grow.

So basically I did it. I got an owlet and I have to agree it does cause a lot of anxiety not to mention the lost connection alarms that go off in the middle of the night have probably taken 10 years off my life. But anyways I had a 34 weeker IUGR. HR ran usually around 150s-200 even while asleep. Baby is now home and I’ve noticed this past week his HR is running lower than usual. Sometimes now 120-170s. Mostly hanging in 130-140s. Baby also has ASD. Is this common for the heart rate to run lower as baby ages? Baby is now one month.

I’m curious: 1. what does your NICU use as the limit for triggering a bradycardia alarm?

2. And how long were you required to be alarm-free to be discharged.

Im wondering how much variation there is depending on hospital and kiddo.

I’ve been waiting to write this post for a long time. After 398 days in the hospital (370 in the NICU), our son is finally home! Don’t give up, we hit so many low points but we just kept doing the best we could. We never thought we’d get to this point, but we finally did! You will get there too!

Anyone have a preemie come down with RSV after getting the Beyfortus shot? What was their experience?

Context, I have a 29 weeker who has been home for 2 weeks today, she’s 44 weeks corrected. She got the beyfortus shot on discharge day weeks ago. My toddler just tested positive for RSV yesterday. Fever, coughing, sneezing. A few days ago (before my toddler was sick) I noticed the baby just seemed sleepier than usual, sneezing here and there but doesn’t seem congested. Is it possible the beyfortus is doing its job, or should I be panicking right now? 🥲 Very worried. What was your experience if your LO had the shot and still got RSV?

So my little one has an NG tube that is due to be removed tomorrow AM.

It looks like he couldn't wait and ripped it out 😩 it's 1am where I am and the nurse is doing a home visit at 9am so 8 hours, he's currently breast feeding... personally I feel like because he's eating with no issues and it is getting removed tomorrow anyway it should be okay for now... think I just need some reassurance that this is the right decision over trying to call an understaffed ward and drive baby in, in the minus temperatures.

He's breastfed himself to sleep.

I’m the grandparent of a beautiful baby girl born 6 weeks early, the mother of 4 children all born almost a week late, so I’m an experienced parent but not in this regard. She’s two days old and I finally got to visit her in the Nicu, she has a tube for feeding though she did manage to eat some on her own a few times. They’re taking her off IV tonight and she looks small, but still healthy and pudgy and on her way home hopefully on the sooner side. This afternoon I finally got to visit and touch her even though she had to stay in the bassinet. I was talking to her and stroking her cheeks softly because I had always read that babies, especially ones in Nicu, need physical contact and stimulation or they might have developmental problems. Instead I was told not touch her face because she wouldn’t grow as fast, sleep is growth time. I should squeeze her gently through her swaddling and hat and apply gentle pressure. I’ve been doing some research and I keep finding both theories, completely contradicting each other. In fact, one of the nurses in the room was fine with me stroking her, but a later one told me to stop. I understand that sleep is grow time, but that’s all they do anyway at this age, right? So never touch her face if she’s sleeping?There must be something in between because neither sounds completely sensible. Has anyone in practice found one theory better than another?

My twins are getting so much bigger. Sister A is now 7 lbs and sister B is 5 lbs. Dr talked about discharge with me today. Sister A will hopefully be coming home in one to two weeks. Sister B will likely be home in a month and she'll be coming home with an ng tube and oxygen they informed me today. She's not really showing an interest in feeding and won't even take a pasi most of the time. They're over 40 weeks adjusted and doing great otherwise. I got to bottle feed Sister A and she took the whole bottle for me. I was so impressed. I cant wait to spend more time with them

Hi all- hoping anyone can help since I haven’t found much online about this.

My baby was born 40+3 via c section with an uncomplicated pregnancy he was 9lb 14 oz (large babies run in my family) c section was scheduled. 2 days after he was born we were still in the hospital and he developed congestion. The pediatrician wanted him observed and they decided he needed to be in the NICU.

They started scanning him and testing him for everything since his oxygen would de sat to 88/89 when in a deep sleep otherwise he had no other issues. They gave him multiple chest x rays, blood tests, 2 echos, pretty much every test they could run and he still sounded congested though his nose. They also started trying him on nose drops etc, they sucked out his poor nose so hard that it had crusted over and was scabbed for a few days. After like the 10th day there they finally called our children’s hospital and told them he was congested, they suggested 3 days of afrin and saline again he was still congested, then they gave him a. Covid an respirory virus panel all negative.

After over 12 days of this, finally at rounds we had been super patient we felt the care he was getting at this hospital wasn’t solving anything so they transferred him to children’s hospital to be seen by ENT team. Turns out all he had was a deviated septum the whole time which was causing all of this and all was ruled out with 1 scan.

After a few days they released him on low flow oxygen and no real plan moving forward. He is thriving gaining weight and his oxygen never goes below 95/93 maybe an occasional dip when deep sleeping to 89. We were told the plan is just to let him grow out of it and to be seen in 3 months. The pediatrician was also quite shocked at his length of stay and the discharge orders since he is thriving.

My question is if he is having no issues on room air At home when we do tummy time, baths, etc should I advocate he be seen by the children’s hospital team to reassess if this oxygen is even necessary at this point we monitor him all the time and he ends up with the cannula out of his nose half the time etc, our pulse ox has never had an alarm for de sat as well. He is quite strong so even with mittens he gets at the oxygen . He also is able to get out of his swaddles sometimes.

Thank you for reading.

Hi Guys, I had my baby 12 days ago at 26 weeks. He is on CPAP since day 1, Dr is going up on his feedings and I think he is not tolerating well bc he is been having scary Brady where he stops and needs some stimulation from his nurse and also goes pale. So to me it’s very scary but not as much to the nurses or doctors. They went up to his feedings and calories so idk if forcing him to eat like this would became a problem to my baby. I wanted to know if it’s common for this to happen, because I’m terrified for him

My 30 weekers turned 1 last month and at their 12 month appointment our pediatrician surprised me with wanting them fully weaned off formula pretty soon and eating solids for main calories.

I had assumed we’d have that discussion closer to their due date (2 months from today). One of my daughters would be able to transition pretty quickly, while the other is really struggling still with swallowing and has other health issues. We have had feeding therapy for the past few months but haven’t made a ton of progress. She’s technically 10 months so I felt not too far behind if we use her actual age, but I’m stressed and feel really behind if I should be treating her like a 12 month old with solids.

What did your pediatricians say?

Hi everyone! My baby was born at 36 weeks with Respiratory Distress Syndrome. He spent 7 days on CPAP and 11 days total in the NICU. He’s now 8 months actual age and the doctors have told us he needs to get tubes in his ears for recurring ear infections. In my haze of being discharged from the NICU I vaguely remember the doctor saying he shouldn’t be put under anesthesia until he’s a year old due to RDS. I’ll obviously bring this up at our ENT appointment but wanted to see if any other parents have been in this situation at such a young age?

Thank you!

Hi all. I'm a little worried because my daughter is now 13 months actual, 11 months corrected and she is still on the 0.3 centile at just under 14lbs. I've been reading lots of posts today about IUGR babies and people say things like "she is still small at 15lbs at 8 months" etc and my daughter was WAY less than that at 8 months. Has anyone had a similarly sized baby? She had her last check up by the paediatrician at 9 months who wasn't concerned at all. I guess I'm just after some reassurance that she's not the only one that's really really small. Her head and height are normal (25 centile) it's just her weight. Thank you.

Just looking for some advice if this is normal I read a grade 2 placenta usually happens around 20 weeks and up! I’m hoping maybe this isn’t accurate. With my first I pprom and give birth around 34 weeks, I’m hoping this isn’t a sign that I will go into preterm again, I just really want to have a normal pregnancy this time around 😞

I’m a first time mom and my birth experience and pregnancy was traumatic to say the least… my 4 month old son is now safe at home from a 90 day stay at the NICU from 3 surgeries. He has a rare genetic disease called Fanconi anemia, had co arc surgery on his heart at 5 days old, had duodenal atresia surgery at a month old and then an emergency revision a few days later due to obstruction after surgery. He is home now and has a NG tube we are going in for a G tube surgery this week which I am scared honestly to put him through another surgery…

My pregnancy was high risk they found out all these issues through aminotesis at 20 weeks I had polyhydramnios and had to go in a few times a week for ultrasounds. I was having a routine ultrasound at 35 weeks 6 days and was told my membranes had ruptured I was spotting blood as well so that night on July 3rd they induced me. They started the pitocin and the cervix ripening medication, I was also on antibiotics since my membrane had been ruptured I remember leaking that week for a while and had a few ER visits but the doctors all did cervix checks and told me I was fine so I’m wondering how long my membranes really was ruptured for. The next day on July 4th I wasn’t making any progress, I finally took some laughing gas and agreed to do the balloon foley to help open me up and get me dilated, I was in so much pain I had the balloon foley in for 12 hours, the one doctor didn’t want to keep it in to long because she said risk of infection and then the other doctor that switched that night said it’s fine we could keep it in longer but I begged them to take it out. They broke more of my water as well that night. The next morning I woke up on July 5th (from maybe a hour of sleep) and I was finally 5 centimeters dilated.. not much progress over two days but I was still on pitocin and in so much pain so I got the epidural. Later that day they did an ultrasound and checked baby’s position (this was the first time they actually checked) and they realized he was sunnyside up. They told me it was going to be hard as a first time mom to push him out sunnyside up, my sister asked about a c section but they said they only do those for emergencies. They had me do all the positions to help turn the baby, none of them worked. Then the doctor asked me if she could try to manually turn the baby I was hesitant but agreed and she stuck her hand up there and tried to turn him, i felt him freaking out and it was the scariest feeling. Finally only July 5th at around 9 pm I was 10 centimeters and ready to push. I had barely had any sleep throughout this entire few day experience I was exhausted. I pushed for a total of 3 hours and made barely any progress they told me with all the effort I was making we would have had baby here by now. I was tired haven’t eaten at all that day, had not slept in a few days, It was around 11pm when they finally offered me a c section and I said yes. I was shaking and freezing. I’ve had surgeries in the past but the c section was extremely hard since I felt so unwell from the entire experience. The c section took about a hour he was born on July 6 at 1:11am and I did not even get to see my baby for whatever reason I don’t remember but my husband got to see him and hold him before he went off to the NICU.

Finally got to the recovery room and they told me I lost 2 liters of blood due to a complicated hemorrhage I was so out of it I didn’t even have time to process what happened I just wanted to sleep and I was extremely thirsty. The nurse seemed nervous but i didn’t even see a doctor for like 45 minutes after I was told this and so I didn’t think it was that big a deal. They did a Jada foley to get the rest of the blood clots out and finally did a blood transfusion and I was starting to feel a little better. Still very cold, thirsty, confused. They said I lost that much blood because I was pushing for so long and on pitocin for so long so it thinned out my blood. I don’t understand why this even happened my sisters baby was sunnyside up and they just did a c section for her. The hospital was also a “teaching” hospital so it felt like everything took longer than it should have. During my c section the doctor was literally explaining how to do it to another resident while I was on the table. The next morning at around 6am I was very emotional about the entire thing. When I looked up online if 2 liters is a lot of blood to lose I realized it is and I just broke down in tears crying. I finally got to hold my son for the first time the day I was discharged. I guess I’m just sharing my story because I have a lot of trauma from this and I don’t know what I should do. I have postpartum hallucinations still about the entire experience. I really don’t want to take meds because I’m pumping milk for my son but I am definitely anxious/depressed and just wondering if anyone has any advice on how to heal or has gone through a similar experience? Also how should I emotionally prepare for his G tube surgery this week?

My baby was admitted to NICU for low blood sugar. She started with great numbers. All of a sudden they were dropping but I assume it has something to do with me not pumping out enough breast milk for her so they are supplementing her with formula. Her numbers have approved. They wanted to aim for above 45 bc she was at 39 before being admitted. She’s now at 106 and last check was 81. I asked the nurse how long it might be until she’s okay to take home and was told 2-3 but I’m wondering if she’ll leave earlier being that her numbers are better. Has anyone had this experience?

How are we all writing about our traumatic births/NICU stays in our baby books? Are we glossing over it? Sugar coating it? Writing down the facts? lol. I am not planning on keeping it from my son that he was a NICU baby or anything, but the details of his birth feels a little dark for the baby book now that I’m getting around to working on it 😅

Hello! Hope everyone is doing well. My baby was born 33w1d at 2.6 lbs. We stayed in the hospital for about a month, discharged a little over 4 lbs. He is now 7 weeks old and weighs 5.4 lbs (according to our scale). He is taking 55ml(almost 2oz) every feed. Feeding every 3 hours during the day but will sleep 3-5 hours between feedings at night (if we try to feed every 3 on the dot he will take little). Plenty of wet diapers. Minor spit ups, sometimes a dribble and sometimes 1-5mls. Wondering if this is good weight gain or what would be considered "normal"? Also want to hear from others in the same weight boat! What worked for you to help your little one gain weight? Thank you for taking the time to read and reply!

Has anyone used Thick-it for thickening baby formula. It is corn starch based.

My LO does not tolerate any gum/bean thickener, so I wanted to try this.

My LO was born at 25 weeks weighing 390 days. She had a relatively uneventful NICU stay and has been home for about 3.5 months. She is now almost 4 months adjusted (7 months actual). She is tiny and weighs around 11 pounds. She has recently stopped showing hunger cues and seems to have no appetite. We feed her every 2/3 hours but she seems uncomfortable after drinking 1 ounce. If we push her beyond that, she will turn her head and start crying. We are doing our best to avoid a bottle aversion but we are not sure what we can do to help increase her intake. Her volume intake has decreased to an alarming level - she last consumed 4 ounces over a 10 hour period. She's seen her pediatrician twice, a GI specialist and a speech pathologist in the past week. They all seem to have different opinions. Her pediatrician (who has no experience with IUGR babies) said she wasn't ill so we should wait it out. Her GI specialist said to feed her more often (even if LO doesn't want to feed), and the speech pathologist said to try a different formula for reflux. She wasn't entirely sure if she had reflux but her thought was that all babies have reflux and either a thickened formula or reflux medication like Famotidine could help with the discomfort. Has anyone gone through a similar experience? We've aged ten years in the past week trying to figure out what to do and we are just at a loss. Would appreciate hearing from others. . . Thanks in advance!

I noticed my anxiety has substantially gotten worse since my traumatic birth experience. Yesterday I was hyperventilating and my anxiety was through the roof when I was on the way to the hospital and again today. My baby has been in the NICU for 3 weeks so far, I’m not sure why just now I’m starting to have these episodes when I start panicking. Once I hold my baby I feel a weight lifted off my shoulders, that’s the only thing that helps with my anxiety. At this point I don’t know what to do, should I schedule an appointment with a physiatrist so I can be prescribed with anxiety medication. What helped y’all deal with the stress and anxiety that comes with being a NICU parent?

My son has been home for five weeks. 27 weeker, came home at 38 weeks! I have been having a tough time mentally between exhaustion, guilt, and anxiety. Any information of support groups SPECIFIC for parents of graduated premies or NICU babies? I have seen groups for parents of graduated or current NICU babies together, and I don’t want to be taken back to my time actually in the NICU. Thank you!

To preface I’m asking the ped at her visit this week.

My baby is fortified to 24 cal with Elecare. She is 4 months, almost 4 weeks adjusted and about 7lb 8oz.

She has always had digestive problems. In her earlier days she threw up with every feed, when they fortified her with HFM she had an nec scare and a big set back. When they fortified again we chose to go with elecare.

She was routinely given glycerin in the Nicu because she rarely pooped on her own. We’ve been home almost 5 weeks and she hasn’t pooped once without a glycerin. She is very gassy, gets very uncomfortable and arches a lot throughout the day.

I occasionally mix in a fresh pumped unfortified bottle and she always takes that so much better. She’ll drain the entire bottle, but with her fortified feed she usually gives up after about an ounce and a half.

I decided about midway through the day today to only do unfortified milk today just to see if she would take more volume throughout the day and see if her belly improved any.

If she takes more volume unfortified, wouldn’t that be better than fortified? What’s everyone’s experience with fortification been after discharge?

I'm looking for suggestions on how to help myself process the experience of being a first time mom whose baby was born at 35w1d and then spent 2 weeks in the NICU (in addition to a 3 week antepartum stay for myself)...I do go to regular therapy, which has been helpful for sure. I've just been having this nagging thought/feeling that I haven't been able to "get over" what baby and I have been through. I do go to a new parent support group each week and have wonderful support from family/friends...but I don't think everyone else would understand what it's like or be interested in me going on and on about thr smallest details.

Any suggestions that can be done a little bit at a time would be great! (Caring for a baby now doesn't often leave me with big stretches of time to take on new projects lol)

Hi! Recent symmetrical IUGR diagnosis at only 22 weeks (2 weeks behind). What was your story if baby was similar? Was a cause identified? Thank you, from an overwhelmed parent 🙏

Our daughter born 26/4wk is now 1 year old 9 months adjusted. She will not eat any baby food at all and every time she does, she gags and throws up everywhere. I know preemies are slower with certain milestones but we are starting to get worried and will probably get with a feeding therapist soon. Has anyone else dealt with feeding delays around this age?

My little boy was born at 38+1, only issues in pregnancy where that he didn’t kick much, I had gestational diabetes and diagnosed with Hydropolymisis (excessive fluid) at 36 weeks hence induction at 38.

In the last 10 minutes of labour his sats all dropped and I was rushed to theatre for a forceps delivery. He proved very difficult to intubate and we where transferred to a cat 3 hospital, they tried to extubate him twice. The first time he lasted 12 hours, the second time he required 30 mins of cpr. We where then transferred to a London hospital where despite us raising concerns they have extubated him again today and less then 12 hours later we are sat in the waiting room as they reintubate him. ENT can’t see a reason he can’t maintain his airway so the thinking in neuromuscular disorder. We feel like we aren’t being listened too. We told them this would happen and they did it anyway. He is also now on TPN as they think he has a cows milk protein allergy and needed gut rest due to inflammation.

I just can’t see a way forward. He’s 26 days old and needed intubation 4 times. I’m running on fumes and struggling to stay positive.

I PPROM at 26+5 days. Admitted to the hospital and gave birth at 27+5 days.

Baby boy ended up critical during his first day and needing oscillator + nitric. His O2 sat was in 40s for hours and slowly climbed to 50s, then 60s, then 70s. The doctor came in and told us he’s most likely not going to make it. It wasn’t until overnight and after steroid medications that he’s stable in the 90s. Today marks day 2 of him fighting.

They’ve brought the oscillator down to 30s and his O2 is staying in the 90s.

Can anyone share their baby’s similar breathing progression support stories? We’re so scared and hope he has a fighting chance as well as a decent quality of life. We refuse to give up on him.

I had my baby at 27+1 he will be 34 weeks tomorrow. My concern is that he’s always making straining noises even when he is not pooing. He could be getting his tube feed and in a position that he doesn’t like and he starts his straining sounds. 9/10 times he is not pooing. If I’m moving him to put on my chest or back in the cot he’s making the noises, if I’m changing his nappy it’s the same thing. I don’t know if this is normal in preemies because the nurses says it’s normal because they are still developing how to coordinate muscles. But I’m worried

He is 1460g now, he’s not on any oxygen since 30 weeks. He’s been having an uneventful nicu stay (thank God)apart from a few blood transfusion. Is this normal? He is quiet when he’s comfy, sleeping or on the breast but as soon as he’s been moved it’s pure moaning