Preemie Moms - distinctions

[avidwriter15]

I have come to realize that there are subcultures in the preemie mom community - there are two types of moms: Micro-moms and preemie moms. Anyone else see this going around? I am a micro mom - with a 27 weeker.

 

[AP]

I have seen some Facebook groups that require a mum to have a preemie thats classed as micro (is that under 2lb, i cant remember?) and turned away some girls. I find this very unsupportive

This, I think its quite a shame. Often regardless of weight preemies can suffer the very same issues as micro preemies would.

Again I have another 27 weeker but she wasnt classed as micro because she seemed a chunk. however she did have a Grade 4 ivh, and a brain cyst. Which is generally more common with micro preemies

Really, I dont think preemies should have a class when it comes to weight - where do you really draw the line though, I'm not sure, but how its drawn it seems a lil wrong.

Anyone that has to go through the preemie journey, no matter how long or short, should have the same support and as a little community and I reckon we should all stand together rather than segregate and make out our journey was harder than anothers.

It's just a classification on weight - not the baby. And we all know there are so so many other factors to consider

 

[kelly6407]

A micro preemie is a baby born b4 26weeks or it's a baby born later but weighs under 1lb 12oz (800g)

My lg is also a mp, born at 28+6 but weighing 1lb 8oz.


There is different types of preemie parents, the ones who had baby's less than 26weeks, those who had babies less than 32 weeks and those who had preemies born between 32-37weeks

The ones with very early preemies really have a tough road and their babies r more than likely going to have lasting issues and problems.

27-32weekers tend to have tough roads and some can come out the other side totally healthy and have no issues at all (like my lg) but there's still a good number of them with lasting issues

33+weekers tend to do very well and not many have serious issues but there will be the odd one who is not doing as well and the older they r the better they tend to do.

U can really understand other mums who have babies at the same gestation and share that connection but sometimes not with the other groups, either because u won't understand the younger ones problems unless ur baby was sicker than expected, or because the older ones has easier roads so they mums won't understand.


But we still all share a connection in a way, we all had a tough time and couldn't take our babies home or worry about their health and development because they were prem.

 

[25weeker]

I don't think it is like that on this forum or on the couple of others I am on. I obviously can't speak for every forum/group out on the internet though.

I don't categorise myself in any group apart from being a preemie mum and I would hope that I give support to any mum regardless of their babies gestation. There are obviously questions I can't answer for a baby born at a later gestation but that works both ways. We are all here to offer support to people who need it and get advise when we need it.

 

[AP]

That's true 25weeker. I like to learn of other situations, not just ones similar to ours.

 

[Lottie86]

I've not found it on here but I have found it with some preemie Mums I've met (none of the ones from here!). I had a Mum of a 23wker tell me that Findlay wasn't even premature and this was at a Bliss support group!! I then felt so awkward and like I had no right to be there

 

[25weeker]

I've not found it on here but I have found it with some preemie Mums I've met (none of the ones from here!). I had a Mum of a 23wker tell me that Findlay wasn't even premature and this was at a Bliss support group!! I then felt so awkward and like I had no right to be there

Lottie that is awful. Poor you.

If that ever happened again you might want to remind them that bliss is for babies born too soon or too sick and your babies fall into both them categories. I could give you something more cheeky but I will hold my tongue

 

[Foogirl]

Jeez Lottie, who was that? I'd have sorted that out if I'd heard it. Sounds ignorant to me.

I hate the way there appears to be some kind of preemie "Top Trumps" going on. Whether your LO was micro, or a good weight, 24, 34 or even 41 weeks, a neonatal stay after a traumatic birth is difficult and I don't think it is by degrees either. Let's face it the first week is the hardest and most of us fear we will lose our babies in that week. They all have wires and tubes and monitors, is it scarier that some have different ones? At our bliss group, I see the same looks, hear the same fears, and watch as they get used to the situation as time goes on and that is universal to all the parents. At 29 weeks, looking back on it, we had an "easier" time. But it certainly didn't feel that way at the time and that is what matters. Not only that, people are different. So what to us was quite a straightforward journey, to others might have broken them.

We are all in this together and no-one should ever be made to feel their pain and suffering is somehow better because someone else has it worse. Oh this has got me very annoyed now.

 

[dizz]

I don't post on the Bliss forums (even though they were fantastic as a charity and sorted out counselling for me) because there seems to be the mindset that you don't really have any right to complain if your baby didn't come really really early. I just stay away for that reason - even though what we went through was sufficient for my marriage to be on the rocks and me to be falling apart with nightmares and flashbacks over it.

So basically if you're a later preemie mum you quite often don't fit in anywhere really - you don't fit in with the "proper" preemie community, the women you were in due date clubs don't want you around because you remind them of what's gone wrong and you can't exactly sit around comparing braxton hicks and birth plans, and you don't really fit in with babies born around the same time as yours because you don't hit milestones etc based on their actual age - so after that initial "omg how small is she" - you're kind of left there twiddling your thumbs. It's quite a lonely existence.

Mind you - I was stuck on a ward (our transitional care consisted of plonking us on a maternity ward with a sheet of paper each day of how much I was meant to get down her nose tube and when) with a girl I could have cheerfully throttled - who proceeded to ring about 900 people (at 3 fucking AM) to tell them of her "premature baby ordeal" - the baby had arrived three days before its due date. After about the 5th phonecall I wanted to go over to her bay, show her my daughter, and then insert the phone handset somewhere she'd be able to dial numbers while doing her pelvic floor exercises at the same time.

 

[AP]

Foo you've said everything I wanted to say but couldn't get it out

 

[Foogirl]

Dizz, I can absolutely assure you, if you were to come to my Bliss support group, you would be made to feel just as welcome. We've got the full range of mums from micro to full term. I would not tolerate any chat about how you had it easier. Now you've given me feedback about the forums, I'm going to mention it to them to see if they will consider the structure and have it more friendly to all mums.

 

[inperfected]

There is a bit of this I know where I'm from, slightly. But it's only because they are often talking about issues such as cerebal palsy, feeding issues, weight gain and the like where as later prems issues (often not always by any means!!) aren't that obvious for long.
I personally think theres more than "2 groups" to be honest too... From the groups I'm in there's the micro prems, then the mid term prem, later prems and then sick term or sick late term babies (Which are often sicker than the others and often fit in better with micro mummies as often similar issues). Just my experience at least

 

[Foogirl]

All of those apply to my 29 weeker. To say there should be a exclusion of any without those issues is like saying you would expect mums who have full termers to support each other through their specific issues. e.g if some are talking about how difficult colic is, would those without colicky babies be sidelined because their LOs haven't had it? Or reflux, or separation anxiety or sleep problems etc? All babies face different issues, that doesn't mean someone who isn't facing that particular one can't understand how difficult it is. When it comes to CP, I take all the support I can get. Just because the vast majority of my friends don't fully know what we're going through, doesn't mean they are unable to support us.

 

[AP]

I have to admit at the start of my journey with Alex I was biased, and naive and I'm sure I probably had those unfair feelings about others with older gestations. By the end though I think I understood, and meeting others I realised you just can't apply "rules". I'm glad I learnt that and without acknowledging it I wouldn't be able to support others.

 

[dizz]

I have to say - a lot of my issues surrounding what you could term my own mental recovery from it are down to the general behaviour of the hospital and their appalling transitional care system rather than directly her prematurity - but they're still not issues we'd have come across if she hadn't have been premature so to speak if that makes sense to anyone? (Basically the gist of it, my full birth saga's in that forum, is that I was appallingly treated, made to be absolutely terrified and then they called social services on me for me trying to prevent them doing long-term damage to me - so it's all of that, bound up in with the whole feeling of not fitting in anywhere, that makes me a gibbering emotional wreck at the moment).

I've got nowt really to complain about though - she's catching up (watch out world cos she's the sort who'll take over the world when she gets to be one step ahead of the term babies) and the worst we seem to have come away with is a hernia and manageable reflux - so like I say, physically she's fine - it's the emotional stuff I flounder with, and I don't really fit in anywhere that "gets" it - the closest match I find in those terms IS quietly hanging around whatever preemie mums I can find really. Tend to try to keep my mouth shut because I know in the grand scheme of things we're in the "could have used a bit more time as a bun in the oven but came out OK just a lil bit small" league.

That part's quite lonely if you're a middley-ground one! Wish we HAD support groups around (but again, I feel like we'd be some kind of a fraud there) - but there is absolutely naff all - the NICU didn't even bother with any follow up for us, despite her being under their birthweight criteria (just) for follow ups on discharge (she was just the other side of the gestational age one)... we just got chucked out into a community of health visitors with naff all clues about prematurity - I'm sick to death of explaining how to do her weight charts and track it back!

But no, I don't kid myself I'm hard done by - we got off very very luckily - even down to the point where I would have been in labour during that really horrifically hot spell if I'd gone to term!

 

[Foogirl]

I'm not sure I ever really thought about it at the time. There was one wee boy who was very early and very poorly but the only thing I ever thought was that his mum was really young and it must have been so difficult for her to deal with at such a young age. And at the other end of the scale, there was a mum who's full termer was admitted after something went wrong on his first night on the ward. She looked far more shell shocked than the other mums and when I spoke to her she was terrified seeing all the tiny babies, and monitors and stuff. I think her 3 day stay was probably as harrowing for her as my 6 week stay was. Imagine being at the point where you've had a straightforward birth and are just thinking about getting home, only to discover you have to go home and leave your baby behind. At least we get a wee bit of notice!

If anything, I'm more likely to find its now I can be dismissive, before I remind myself, NNICU is hard for everyone.

 

[Foogirl]

Thing is Dizz, you DO fit with Bliss. Ok some of the mums on the forum might be dismissive but if there is a local group, you should be made to feel welcome. You can also approach Bliss for counselling if you think it would help.

 

[dizz]

Thing is Dizz, you DO fit with Bliss. Ok some of the mums on the forum might be dismissive but if there is a local group, you should be made to feel welcome. You can also approach Bliss for counselling if you think it would help.

Yeah they've already hooked me up with a counsellor - not sure it's helped as of yet. Them as an organisation have been fantastic - but looking on their forums it was very much a "if you got a 30 in your gestational weeks - you ain't got owt to be sad about" type vibe! I can understand that - like I say, I wanted to throttle this girl who was going on and on about her premature baby who'd come 3 days before due date (I'd have wanted to throttle her anyway though for being superglued to the phone ALL night... and being congratulated on her perfect birth... and her perfect breastfeeding progress... OK - so I was secretly willing her child to pee, poo AND puke on her - preferably simultaneously in technicolour)

 

[AP]

OK - so I was secretly willing her child to pee, poo AND puke on her - preferably simultaneously in technicolour)

 

[25weeker]

Maybe I read things differently but I am also a member of the bliss forums and I have always found everyone in it to be extremely supportive to everyone not just me. The only downside of it at the moment is there isn't very many people logging into it since they shut it down for several weeks to redesign it.

You tend to find in most forums that the users with older prems are the ones who have ongoing problems and in a lot of instances this is due to them being extremely early. People with prems who have no issues stop logging in and therefore it seems that the group is only for extreme prems but that isn't the case at all. Ideally ones with older prems would continue supporting new members but the reality is at some point everyone moves on and in the case of babies with no issues it's sooner rather than later.