Please help.

Came home from the NICU yesterday after 6.5 weeks with our little love who was diagnosed with severe MRI findings. We opted for the G-tube to get us home and get everything off her face which we were told was helpful for longer-term development. If she didn't have to be on breathing support for so long from her meconium injury and now the seizure meds that are making her sleep most of the day and night/loose her vigor for sucking - I think we would have been further along given she can cough up secretions herself and does have a suck that was progressing before the meds. Also although she didn't have seizures on rewarming she did develop some 2 weeks ago so she's now on seizure meds and we're on high alert for infantile spasms. When I do some PT moves myself her body responds nicely and I can help her get more range of motion and that feels somewhat reassuring bu

Her tone is also high (When I do some PT moves myself her body responds nicely and I can help her get more range of motion - I wonder how much of tone is also healing from her gtube surgery/the stress of the NICU in general) and they said she has neuroirritability so she's on Baclofen and gabapentin for those things. It's so hard to know what is doing what with the cocktail she is on.

I am admittedly spiraling with everything going on with her - not to mention judging all the weird eye movements, moves, and breath she makes. I'm having such a hard time separating what is happening right now with the potential outcome. I'm working on getting some therapy set up for myself, but in the meantime...

In effort of the Hope part (posting this on the Hope for HIE page too, but honestly I've found Reddit to be so much more helpful <3).

Can anyone here specifically with Severe MRI findings that had rough early starts like this (long NICU stay, gtube, seizures, weird eye movement, neuroirritability) - but still ended up with the way-better-than-expected outcome share their stories with me?

Hii, I’m currently 28w3days and at my anatomy scan I was 22 and found out my baby boy has gastroschisis. I was just wondering if anyone else has gone through this or is going through this? Baby will be in the nicu for at least 6-8 weeks after immediate surgery but you can’t expect anything for recovery because doctors can’t really see the severity of his condition until he’s here and his recovery depends on his intestines digestion after being iv fed to tube fed.

One of our twins (17 months, ex 32 weeker) was kept in the NICU one month longer than her twin due to not making her feeding quantities, and did vomit at least once per day.

At 5 months she got a gtube and at 7 months we did a delayed gastric emptying study and that is when she was diagnosed.

She is able to eat by mouth, but of course not nearly enough. She still vomits about once a day.

Looking to see if anyone has experience with gastroparesis? Current challenges? Tips? Success stories?

I had a baby at 30w+2 after a partial placental abruption (following bleeding throughout my pregnancy which at the time doctors thought was from low lying placenta but turned out to be lots of small abruptions). No risk factors or clear reason for it.

I spoke to a consultant (UK) and understand that while my risk of another abruption is c. 5x higher than someone who hadn’t had one, it js still relatively low (although would be treated as high risk and they would recommend aspirin from 12 weeks).

However I am on the fence about another child - before this I wanted two and I think our family would be great with another child but a pregnancy would be very anxiety inducing and another NICU stay would be incredibly hard. Plus we are very fortunate that our daughter has no lasting complications and is happy, so part of me is happy with our lot.

Just hoping to hear from anyone else who encountered this decision (in particular after an abruption) and their experiences either way.

Thank you!

Sorry if this has been asked, I just couldn’t get the wording right to find what I am looking for.

Anyway, looking for advice from other parents for the transition from the ICU to the step down/inpatient unit.

So our first baby was born just over 3 months ago at 38+1. Since then he has been in a level 4 “top 5 children’s hospital” in the NICU for a bit, went to their pediatric cardiac icu, at one point was transferred to their step down for a week, but sent back to the PCICU when he got worse. He had a procedure and 2 surgeries while in the PCICU along with multiple lengthy scans of different types. All of this required sedations and meds he needs to wean off of, and he’s been exclusively TPN fed for weeks, so he needs to get used to formula again first via NJ tube.

The weaning and starting formula again has been the worst experience, he’s just agitated and upset to the point of inconsolable at times. Sometimes it’s obvious he has gas and that’s it, other times it’s not. He was on this formula via combined NJ and bottle feeding for the first couple of months with zero issues.

We’ve convinced them to be very slow with the weans and increases, and to offset them enough to try and make it more obvious which one is causing him the most stress. We found out today we are being sent to the step down unit again and, at least I, am terrified. We’re both brand new parents, the most baby experience we have is holding random friends’ babies for a bit. We’ve been as deliberate as possible in learning cares, and trying to learn what calms him, but this level of fussiness we aren’t used to. Half the time we aren’t sure if it’s related to the wean, the increased feeds, or some other pain. It could even be him acting like a fairly normal baby would and we just don’t know because we’ve never experienced it. He’s still got enough wires and lines hooked up to and into him that without a nurse around we’re terrified to pick him up ourselves and make it worse.

Now we’re going to step down, where there’s less overwatch, and instead of having 1:1 nursing, it’s generally 1:3 or 1:4. This is not a dig at the step down staff, it’s not their fault there are fewer of them, we were there once for a week and they were really great, but he also was not like this. We’re now being forced back to work, I’ve already been back over a month, my wife this week. Our work locations, home, and the hospital make it extremely difficult for one of us to be around 24/7.

I’m worried he’ll be crying for hours without help or he’ll cause himself harm because no one was around. Again not because of the staff, I get that the purpose of the step down unit is that’s he not critical and doesn’t need to need to watched like a hawk based on his status. I know there are monitors all over that’ll alert if something serious happens. It’s just hard.

So fellow NICU parents, if you’ve had to wean your child from pain and sedations meds, how did it go, how long did it take, and what helped? Same question for getting them used to formula again. How long before they stopped having issues? Am I worried over being sent to step down too soon for nothing?

I need help. I have started panicking and having anxiety over everything. My 25 weeker is now 37 weeks. He has been through a lot. Sepsis, DARTS regimen, PPHN, PDA and then volvulous surgery and now has stoma.
However, he took everything on like a warrior and is on rhe road to recovery. Today at 37 weeks 2 days he is 1.3 kgs and is completely off oxygen support. He has started taking bottle feeds too but he has been able to take only 20ml out of 30 ml in 25-30 mins and then gets tired.

Is it something to ask his neonatologist or is it a normal thing and babies progress eventually. Looking for hope, success stories, shoulder and ways to manage this anxiety.

This question is for the parents of older NICU babies (or anyone who might know.)

My little one is 4 now. She was born 1lb 2oz at 30 weeks. She has stayed super tiny and has a small appetite (but endless energy and is constantly on the move) so getting her to gain weight is impossible.

She started preschool so I've been putting her in more jeans, etc, except nothing actually fits her. In reality she's like a 4t height and a 2t waist. So nothing truly fits her.

Outside of learning to sew to take in all her pants (which I'm not opposed to, I just also have a 7 month old so not a ton of time) does anyone know of any stores/brands with petite kids clothes?

I bought her cute jeans and sweat sets and the pants basically always fall off her. Any help is appreciated!

Hello to all parents. Hugs to those currently in the NICU.

To share our journey, our daughter suffered HIE and aspirated. Total of 7 minutes deprived off oxygen. We have a bad MRI. We also have worst prognosis on what she will be able to do. We spent 40 days in the NICU. Normal SVD, with resting period.

As first time parent, here's what we did:

• onboarded a team of pedia, neuro, pedia dev
• vaccines, health monitoring, consistent feeding
• reached out to experts on our case internationally (we are from 3rd world)

We are still in the dark on this. But I thank the leading expert in CVI, she's one of the people who made us feel heard during times we question what else can we do for our daughter.

Our daughter is on track for now on her developments but we are watching out for regressions. HIE cases differ as I searched through the subreddit.

We are keen on having her on PT OT ST, but neuro says it takes time before we can assess her for that.

My 26 weeker now 3 months corrected not getting rid of Colic pain after tapering the cilic medicine dose.. What can be done plz suggest!

My twins have inguinal hernia on both sides and I’m wondering if it hurts for them (before surgery)? And also how is recovery after surgery will it be painful after surgery?

My grad will be 3 in January. We spent 67 days in. One of the days we had a family dinner at my in-laws. We went to see bean for a set of cares before heading up. MIL looks at us and goes, "where's Leon?" ....... "uh.... at the hospital.......?" "OH! You mean you can't check him out for the day?" She's not the brightest hahahaha

My son was born at 32 weeks. Hes 3 months now. Doing really well despite an unexpected heart defect diagnoses.

However, I find myself thinking about one moment of my hospital stay very often.

I was just over 24 hours postpartum. 4th baby, first csection, first nicu baby. My husband went home to spend some time with our other three. I was still on magnesium for my blood pressure, still had a cath in, pumping constantly. I ordered food from the hospital room service. Nothing crazy, usually I ordered the Breaded Chicken with mashed potatoes and green beans. The person from the kitchen brings my food into my room and the first thing she says "oh where is your baby??" I tell her hes in the NICU and she says "awh I wanted to see"

I still think that was such a crazy thing to say. You're on the L&D floor, you have no idea what is going on in my room.

Out of curiosity, does your NICU use cameras for you to check in on your baby when you’re not able to be there? What are your thoughts on it? Our NICU uses NicView. Seems a little glitchy, going offline randomly, etc. Just curious if this is a universal thing, if your NICU offers some different system to check in on your baby, etc.

As a postpartum mama, I’ve struggled waking up in the middle of the night hoping to check in and see baby just to help ease my anxiety, only to be hindered by glitchy issues.

When were you all able to stop swaddling (we use a sleep sack with Velcro)? My baby is 3 months adjusted, 5 months actual, recently scored 2 months on her baley eval for gross motor and isn’t looking ready to roll over. She won’t sleep longer than maybe 30 if she isn’t swaddled. Daycare wants a dr note to swaddle her. Dr said no. I pick her up from daycare and she usually hasn’t slept and/or has been screaming because she was put in the crib awake. She normally still takes 3 or 4 naps at home during the day. She sleeps in anything. I don’t know what to do, after pick up she will sleep for hours, eat, and go to bed overnight out of exhaustion.

We’ve been in the NICU for four weeks. My son was born at 33 weeks and is now 37 weeks.
He was taking about 80% of his feeds by mouth, so the team took out his NG tube and started ad lib feeding with a minimum amount he needs to take.

He’s been hitting his minimums, but he lost 20 grams.
We thought we were going home today, and now we’re not leaving until he gains weight. I know they want to make sure he’s ready, but I feel so discouraged. I was so hopeful that we were finally going to bring him home.

My first baby died, and I just want this baby home with us and thriving. I feel like a failure, even though I know he’s working so hard. I’m scared he’ll need the NG tube again, and I really don’t want that for him.
Has anyone been through something similar? Did your baby start gaining after switching to ad lib feeds? I’d love to hear your experiences.

We are still waiting for it to “click” re: feedings and having him take bigger bottles

My husband recently started having symptoms of illness. Mild stuffy nose, scratchy throat, nothing serious. I started feeling sick today and I work in a hospital so I tested myself. Turns out to be covid.

I've been masking from the moment I felt symptoms but my husband's solution was "I haven't been breathing in her face" 🙄

He works from home and watches baby while I work 12-hr days 3 days a week. I'm so nervous because he's not nearly as careful as I am with keeping the baby safe, but I can't take off work to be home with her to isolate her from him because I used up all my leave when she came home from the NICU.

She was born just before 31 weeks and didn't have any respiratory issues. She's 2 months adjusted now but I'm so nervous that she'll end up in the hospital if she gets sick from my husband.

I posted a few days ago when my water broke at 22weeks and 4 days, I am happy that I am now 23 weeks 1 day no signs of labor! I am feeling signs of hope. God is so good.

I have just so many concerns, I feel like asking the doctors here is just so negative (which I know they have to be and bring out statistics)

I am terrified of the future, I am sitting here not knowing when I will give birth, not knowing if I will leave the hospital with or without my baby. I am so worried that she will develop severe disability, and not be able to live a normal life. I am so scared that this will affect my future pregnancies, this has been absolutely terrifying and I am so scared of this happening again, it has been my dream to have a big family with several kids.

If I deliver promptly, I will need a vertical c-section, I am terrified, this means I will deliver all my babies at 36 weeks, which just scares me all over again.

I am scared of the nicu stay, I am scared of seeing my baby tied up in tubes, I just don’t know how I will possibly be mentally strong enough.

I’m scared I will loose my job, will I ever feel normal again?

I would do this over and over again with any of my children, but I am just terrified. I am only 22 years old, I am so scared.

We’ve been here for over three months, we’re past her due date, and I’m devastated she’s still not home so when people ask about “timeline”, I want to explode 🙃 has anyone found a nice way to say “stop asking”?

My 22 weeker can’t go a day without gagging whether it’s on nothing, paci, or on his bottle. Any one else experience this? It’s making him spit up often.

My daughter was born 24 weeks and 2 days she is currently 25 and 3 and tonight she destated and they think her ET tube got cloged or she aspirated on her feed. But they ended up putting in a bigger ET tube in but her oxygen died so much it slowed her heart into the 40s and they did compressions on her. My wife and I were in the room when it started. I know each of our journeys are different but has anyone had a baby bounce back from something like this. Im scared that once they take her off the eppi she will drop again. All her scans have looked good post this but her labs look rough and I honestly feel like i haven't stopped holding my breath.

Updated she coded due to aspration on her feed she was down a whole 25 min start to end but had a pulse almost the whole time but it was super slow.

I just need to dump some of my NICU trauma (all relating to things outside my daughter’s condition) with others that might get it… We are out and home but some of the things that happened continue to sit with me and have really hurt.

- I was admitted to hospital for almost 3 weeks. My partner could not stay with me at all.

- I was put in a postnatal communal room with 3 other mums, all who had their babies and one shared toilet. I was the only mum without my baby. The spaces were divided by a curtain only. My section of the room was in the back corner, could barely fit around a single bed with no window or natural sunlight. Post c-section, I was told if I could get standing and get the cannula out - it would get me closer to discharge from the postpartum floor. I stood and walked myself to the bathroom, bleeding across the walkway on my own.

- A nurse told my husband he did a terrible job on his first nappy change in the incubator. He was terrified as she was so tiny. She was in the highest tier of NICU support. He cried after that.

- My daughter was continually referred to as “the girlfriend” of another NICU patient. Ew.

- The brand new nurse, on their first day ever in NICU, who did not know how to even take babies in and out of the incubator (no previous NICU experience at all) was told by another nurse, “don’t worry too much, we’ll give you [my daughter]”. The nurse was not shadowed or supported to care for my daughter. They had this conversation with me in earshot.

- I asked nurses repeatedly for a pump because I could not walk post C-section. They did not bring a pump. I was scolded at 1am for not pumping when I visited my daughter overnight and told when I went back to the communal ward that I was not allowed to sleep as I needed to pump. I went back to my room and cried.

- I continually told nurses my daughter was starving. At one point a nurse heated milk for my daughter, another nurse took it out of the warmer and scolded me (and the other nurse) for heating the milk. My daughter lost weight over 4 days until a neonatologist finally heard us and upped her milk intake, she started gaining weight again and continually finished all bottles.

- I was told not to tell other mum’s her real age because they would wonder what was why she looked the way she did.

- In the communal NICU ward, the NICU parent next to us told me every day as the first thing when I walked in that my daughter had been crying without me and I hadn’t shown up soon enough for her. I was in from morning to night every single day. I did not have outings at all. I would cry. When I was holding my daughter and comforting her this same parent would tell me how I should be interacting with my daughter (I.e that I provided too much comfort) and that she “would just have to get used to” settling without me.

I have a plethora more of stories about our NICU stay but needed to purse these into the ether. I would love to hear if anyone has experienced similar stories. Just sharing them to connect and feel a sense of solidarity about our NICU trauma.

I should add we did have some incredible nurses, nurse practitioners, paediatricians and neonatologists who we adored. I am also getting therapy now we are out of NICU!

I'm a uni student in the North of England and I had a baby that was in the nicu at 40+6 weeks we were both very ill, I do textiles design and for my dissertation and project I'm creating a collection of adaptive clothes for babys that are in the nicu that could say be sold as normal clothes, I was wondering if any parents would be willing to say what they found difficult when dressing their babys and what they wish they had, preemi babies or full term, this would be collected for research however I do not need any details just ur opinion

My son is a HIE baby. Normal pregnancy and things went awry at birth. He currently has a small head due to the lack of oxygen and it’s less than 1 percentile.

Has anyone else had or having the same experience? Does their head always stay small? It’s not noticeable at all now but does it ever become noticeable? Will it affect their learning ability?

We have so many other uphill battles to worry about but this for me is just the icing on the cake.