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?

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!

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!

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.

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.

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.

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?

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!

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?

Stuffy Nose

It seems like every time I take my 16 week old anywhere she ends up congested that night. When I put her down to sleep I can hear her stuffy nose and she will start coughing.

Hi guys. Im an aunt to a 2 year old premie who was born around 23 weeks to be exact. Hes now 2 years and 4 months but doesnt talk, makes random sounds, goes around in circles, walks on his tiptoes, has no interest in food (no likes or dislikes and is basically forced to eat). But he wont ask for snack or ask for food even if hasnt eaten for hours, doesnt cry when he gets hurt, doesnt go to anyone easily (will literally take months to get used to someone). Constantly shoves his hands in his mum’s or dad’s mouth.
Doesnt make any eye contact. Doesnt react to his name being called, doesnt understand the concept of no or stop (as if he cant hear anyone talking to him but drs say his hearings fine) in his 2 years review theyve asked the parents to send him to nursery but he doesnt go to anyone. Even if youre living in the same house as him. Hes got no interest in books, colouring. Only likes to watch/listen to music on tv or car racing sounds.

Anyone else has had similar experience?