# having a 'real' preemie...gestation shouldnt matter!!



## juicyfruity

I feel bad for finding this so hard when other people have babies born at a much earlier gestation and their struggles are so much harder!! sometimes i feel like just because my baby was only born 5-6 weeks early she's not a 'real preemie' and i really should be grateful. 

it does upset me so much that there seems to be a thing going around were 36 weeks doesnt count as a 'real preemie' to some people. i understand it's VERY VERY different from having a 24 weeker but it doens't make it any less hard. in the NICU/SCBU at the moment there is a 26 weeker who just went home on no oxygen no feeding tube and is doing excellently, there is also a 33 weeker who is about to be discharged on oxygen and an NG tube. there is no guarantee that a later gestation premmie wont have similar problems to the real earlier ones. 

i guess i just feel i need some validation as i'm getting a lot of "i know someone whose baby was born at 25 weeks" and "oh only 34 weeks thats not bad you'll be out of there in no time" it is starting to upset me because the preemie journey is hard for EVERYONE. yes my baby didn't have to be ventilated (CPAP instead) and yes i got to hold her 2 hrs after birth but it still hasnt been easy expressing every 3 hrs, coming in to see her worrying about jaundice, feeding issues, weight, her breathing. 

yes there are major differences between a micro preemie and a moderate or even late preemie but it is still hard! people with 36 weekers should feel welcome here if they relate (i know some 36 weekers can go home straight away i know theres one in our nicu who has been here 2 weeks and is still low birth weight and struggling the latter would probably relate more so). 

ah mini rant over!


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## 25weeker

Sorry that you are made to feel like that. I have never seen anything like that on this board but perhaps I have missed a few posts.

Any parent who has to leave their baby in neonatal is incredibly hard and it doesn't matter if they are in 1 day or 1 month it isn't the way we all imagined when we fell pregnant.

I hope your lo gets home soon xx


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## Foogirl

This, is my pet peeve. The whole preemie top trumps thing does my head in.

We were slap bang in the middle. Early enough to worry, late enough to avoid the "micro" preemie stuff. But you know what? It was still a total mind fuck.

Since starting up a support group, I've a better appreciation of just how hard a NNICU journey can be and how lucky we were that our 6 weeks passed with barely a major incident, but knowing that now, or even knowing it at the time, didn't make it any easier. We had no idea that at 29 weeks the odds were good and she'd probably be fine. That tiny scrap of skin and bones, hooked up to wires and monitors, with a machine to help her breathe - that was the scariest thing I've ever had to deal with. I doubt it would have been any easier if she'd been three or four or five weeks older. She should not have been born yet and there is a reason babies need to be inside their mummies for 37+ weeks.

Anyone - even those who go full term - who end up with their baby fighting for their lives in NNICU, or having to do time in SCBU is facing something no parent wants to have to go through. It's the first week that hits us all hard anyway.

I go through the same thing with Abby's cerebral palsy too. In most ways she is perfectly fine, she just can't walk. Of course CP can be far more profound and debilitating and some people have it much harder with their children's disabilities than we do. That doesn't make my life any easier.

Preemie is Preemie. The challenges might be different between earlier and later but they are challenges nonetheless.

But don't get me started on those mothers who give birth at 37 weeks and like to say their babies were premature:growlmad:


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## sethsmummy

so sorry your being made to feel that way hun!! I agree with you.. Gestation should not matter at all. Im my eyes any baby who comes before their due date is premature.. regardless of how mnay weeks it is! And any parent whos child goes to NICU or SCBU no matter the gestation goes through hell. My baby was born term + 6 but had to be rushed straight to SCBU, and i tell you.. those were the hardest few hours of my life not knowing what was happening with my baby. I am just very thankful he didnt spend a long time in there, it gives you a real understanding and sympathy for those who's children are struggling and need to stay in nicu/scbu. 

any child of any gestation can have problems.. and any baby born before they are supposed to is a real preemie! :hugs: :hugs: :hugs: :hugs:


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## AP

Indeed no two preemies are the same. I've never seen that attitude here (although the corrected age tickers for term babies (or like, a day out) can be quite frustrating and there's not much to correct -personal peeve!)

Although I have friends who have 36 weekers who got to go home right away and wouldn't refer to them as premature. I guess it can depend on the circumstances too

I remember being invited to a Facebook group strictly for micro preemies. Although we we had a 27 Weeker her weight was larger. I didnt post, but I was stunned to see the segregation. Some older babies need to fight so much harder, end up with more issues, so gestation doesn't define much in the end. 

Anyone who steps through the NICU doors needs a pat on the back and a hand to hold, and you'll get that virtually here :)


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## DonnaBallona

big hugs xxxxxxx


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## lozzy21

Iv had that from mums whos babys were born at the same gestation as Niamh but because she was nearly 9lb she apparently did not count as a prem. Forget the 4 nights she spent in SCBU being treated for severe jaundice, having a ultrasound on her brain as she suspected she had a bleed because of her traumatic birth. Having to tell a doctor your two day old baby needed pain relief because the poor baby nearly had her shoulder dislocated and had a cannula in the other hand.

I know we did not have it half as bad as some familys but it still scared the shit out of be when they were talking about brain hemorrhage and blood transfusions.


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## katy1310

I've never seen anyone on here being anything other than lovely to everyone, but I'm not on here as much as I used to be, so could easily have missed something. 

Nobody expects their baby to have to go into NICU, however long or short a time it's for, and nobody should have to go through that. Any health issues at all with a baby are terrifying for the parents, whether it's at 23 weeks or 36 weeks. 

I agree with Atomic Pink though, I've also had friends with babies born at 36 weeks who have gone straight home with no issues and they don't see them as premature. It does all depend on the circumstances.

I know of babies born much later than Sophie (she was a 27 weeker) who have had much tougher journeys than Sophie did, so gestation definitely isn't everything. 

:hugs:


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## Foogirl

lozzy21 said:


> Iv had that from mums whos babys were born at the same gestation as Niamh but because she was nearly 9lb she apparently did not count as a prem. Forget the 4 nights she spent in SCBU being treated for severe jaundice, having a ultrasound on her brain as she suspected she had a bleed because of her traumatic birth. Having to tell a doctor your two day old baby needed pain relief because the poor baby nearly had her shoulder dislocated and had a cannula in the other hand.
> 
> I know we did not have it half as bad as some familys but it still scared the shit out of be when they were talking about brain hemorrhage and blood transfusions.

Exactly. Those first few nights are hell, no matter whether your baby goes home on day 5 or week 5


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## Foogirl

AtomicPink said:


> Anyone who steps through the NICU doors needs a pat on the back and a hand to hold, and you'll get that virtually here :)

I'm going to steal that as a tag line for our group.


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## AP

:haha: you do that ;)


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## juicyfruity

Thanks guys :)
oh and i wasnt trying to say i see that particularly here i've just noticed it in general that there can be a lot of comparing etc
there are a few termies in the SCBU at the moment and to see the poor mother crying at her baby's incubator so he wasnt prem he is still a sick bubba and i heard her saying to her husband but look at all the tiny babies around they all must think i'm so stupid crying because he's so big and they are so small! and i wanted to butt in and say something but i felt awkward, really wish i did now!


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## nimbec

Might I make a suggestion that there could be a section in babyandbump for pre term babies such as maybe 34 weeks plus as I feel myself that there is a real gap...we feel uncomfortable asking for advice from 25weekers but would be good to be able to chat...

I have posted a few questions as I'm about to have a 34wk or 35wk baby due to very low fluid and there is not really an appropriate place? 

Any suggestions 

Ps I'm not complaining I think te board is great!


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## DonnaBallona

^ I don't think segregating it even more is a good idea.

our babies were 34/35 weeks at some stage too; the best thing about the prem boards is that we all have experience in loads of different areas. a 39 week baby could have the same issues as a 29 weeker; and if the boards are separate it'd make it even harder to find the answers and support you need.

babies born preterm, sick, too small or for whatever reason are ALL welcome here. :flower:


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## nimbec

Thanks Donna I didn't mean to totally segregate it but perhaps the later gestation are made to feel a bit uncomfortable. I know I came on for support and had a few replies but couldn't find anyone in a similar situation BUT as I say it was only a suggestion! :)


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## BabsyT

I know exactly how you feel hun! :( My little man was born at 34+6 too. He is at home now and doing well. I know how difficult it is to have them taken somewhere different and when you tell people they were early you get the "thats not that early look" and people ALWAYS asking when they will be home and people who don't know what its like saying youll be home in no time. 

my little man was on cpap for 5 days and not fed at all for 6 days. when they finally did feed him it was via a longline in his arm and TPN (just the nutrients) 

It's so hard watching other people come in after you and leave before but at the same time you are happy they are leaving. Having a baby is such a rollercoaster never mind having a baby in the NICU. 

Babies aren't "full term" until 37 weeks so even if a little person is born at 36+6 they're still preemie!!!! The people who think otherwise just don't have the knowledge or the understanding to listen and let it be explained.

Sometimes having a baby in the NICU can feel and seem like it's never ending like it's never gonna be your turn to get home. But think of it this way hun... Your little person knows what their doing. (we might not but thats a different matter!!) enjoy the sleep and spend as much time as you can with them!! 

I'll tell you though.. my little man is in the best routine (all thanks to the NICU nurses) and will sleep through even his two big brothers arguing over mario on the wii!! so you at least won't need to tip toe round at nap time!! 

If you ever need anyone to chat to i'm around :) x


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## DonnaBallona

nimbec said:


> Thanks Donna I didn't mean to totally segregate it but perhaps the later gestation are made to feel a bit uncomfortable. I know I came on for support and had a few replies but couldn't find anyone in a similar situation BUT as I say it was only a suggestion! :)

I haven't noticed anyone being made to feel uncomfortable because they're of later gestation... I have two prems; a 31 weeker and 32+5er and honestly I didn't notice. was it on these boards?? :( it's not a gestation competition. 

maybe start a thread for mums of prems of a certain gestation so you can group together if that's what you fancy? then you can request it made to a sticky maybe? :flower:

fingers crossed your little one will hang on a bit longer so you can bypass the prem board altogether :hugs: If you have any questions, carry on posting and im sure if people can answer your questions then they will xx


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## AP

nimbec said:


> Might I make a suggestion that there could be a section in babyandbump for pre term babies such as maybe 34 weeks plus as I feel myself that there is a real gap...we feel uncomfortable asking for advice from 25weekers but would be good to be able to chat...
> 
> I have posted a few questions as I'm about to have a 34wk or 35wk baby due to very low fluid and there is not really an appropriate place?
> 
> Any suggestions
> 
> Ps I'm not complaining I think te board is great!

The problem with segregation is where do you draw the line you see. I don't believe it's appropriate myself.:shrug: Also gestation doesnt equal the same issues.
This section was originally for premature babies but was recently expanded to NICU babies too. It's also not very busy so it would make no sense. 

Perhaps it better to come together as one and support than group each other into catergories.

Your questions are definatley appropriate in this section though!


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## Foogirl

The other thing is, this part of the board goes through peaks and troughs. Sometimes it can be very busy, others not. If you look back through the threads you'll find there are just as many 24 week questions with only a few replies as 35 week ones. I also think those of a later gestation *generally* tend to move away from this section quite quickly as their babies *generally* keep pace with term babies once they get home, so they find just as much help in the baby club as they do here. Whereas those of an earlier gestation are *generally* facing preemie issues long after they are born and find that the support here is more tailored. We also find baby club quite a hard place to be, sometimes.

Most of us here don't discriminate and no-one should ever feel they have to face 35 week preemie or full term NNICU or SCBU without the support of other mums here, just because their stories seem much worse.


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## nimbec

Thanks everyone and especially babsy for explaining how you feel/felt its such an uncertain time and I'm so pleased all your lo's are doing well!!


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## AP

I am not one to want to cause any debate but this literally appeared on my Facebook just now and I find it quite balanced. It agrees with the OP here but also explains the other point of view that some may have. https://aintnorollercoaster.com/a-preemie-is-not-a-preemie/ 

It's interesting, and actually clarifies something for me. i used to wonder why people compared.

Maybe this is where the comparing stems from perhaps? A lot of us are left with issues due to prematurity, whereas its likely older gestation go home without long term effects. (generalisation I know, I know theres exceptions but this is just for understanding)



> I don&#8217;t care what gestation your child was born. If you didn&#8217;t get what you expected; that hurt. Your hurt is valid. I want to support those layers of hurt; each layer of hurt. I hope you also want to support each of my layers of hurt.

And thats what it boils down to ^.

Also I found that in the early days I had no understanding, no knowledge. Right there at that time, I had a baby on a ventilator and everything in the world was easier than my circumstances. I'd envy the 36 weeker in the opposite nursery, not knowing what the problem was. Then i grew to know the neonatal enviroment and communities and realised everything isnt black and white. I grew up. Maybe once upon a time I did compare. But it was conflicting emotions. Sometimes, I'd see a bigger baby in an incubator and thought "that baby doesnt belong in there", and I'd be so concerned for that baby and its parents.

I'm not discrediting OP at all, I agree, but I think there's 2 reasons for why those comments can be made
A) lack of understanding
B) hurt

I stand by the fact that 1 day or 100 in neonatal, we should all be there for each other.


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## Foogirl

Yeah I saw this one, and tbh it made my blood boil a little bit.

I actually read it and wasn't sure which side of the fence she was on' its not a great piece of writing and her point seems to be all over the place. 

I did get that overall she feels everyone there deserves support for their own personal hurt but right at the very beginning she implied her journey must have been harder because hers was earlier. Her insistence that saying "preemie is preemie" negates the things she found most challenging because her preemie was very early, got me riled. What this doesn't account for is not only the fact that babies all have their individual journeys, but that parents do to.

I really do believe that later preemie mums can have a more difficult time than earlier ones. I met a mum yesterday who was in bits because her termie was in SCBU and had been back and forth between hospitals and no one seems to be able to work out what is wrong with her LO. Right up until he was born, her pregnancy was fine, she thought she was taking him home then BAM! He's been in hospital two weeks and may be there for another two. Every night she has to go home to a house that was ready for her baby, surrounded by reminders every minute of the day. For her, walking out of the hospital every night is torture. For me it was easy and I never looked back. Abby was in much longer than her LO, does that mean I had it worse? Not a bit of it. For some mothers having them there even just for a week can almost break them. Different people have different strengths and coping strategies. I still stand by the fact that preemie is preemie, the only difference is gestation. If someone wants to feel that negates their own journey, those are issues they need to deal with themselves.


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## BabsyT

I think you're right Foogirl. 

We were in two different.NICUs one in Ipswich one in Colchester. From around 6 weeks pregnant i had problem after problem and infection after infection. I was in labour 3 times before he was delivered at 34+5. I am aware my lo was a ''late'' preemie but from 30 weeks he was in real trouble. My house wasn't ready for him, everything still packed away. mainly because we didn't want to be reminded that he might not make it :( 

In both NICUs there were mummys and daddys of termies and I have to say i think it WAS harder for them. They had beautiful perfect pregnancies and were still sitting surrounded by tiny preemies. they had to go home to a house filled with baby stuff and a decorated nursery.. we didnt! My lo was HUGE for a preemie (6lbs) but was pretty sick. I felt like i didn't belong because the babies were so small so i felt sorry for the termies mummys and daddys. 

I think because of all my problems we had a while to come to terms with the fact we were most probably going to have a preemie (that didnt make the shock any less when we saw him all hooked up). 

Theres enough segregation (some man made some natural).. If you've ever walked through the doors of a NICU unit or a SCBU because your precious little bundle is fighting their own individual fight then you deserve support and a big round of applause for having that courage. no matter what gestational age. 

(excuse the grammar i'm on my phone!)x


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## AP

Foo see I liked it, although yes I agree, I actually didn't know where she stood at first. Hurt my wee brain, and I had to read it over and over.

I think she hit a nerve on me. For example, if someone came to me with a late pre-term baby who stayed in NICU for a handful of days for say, feeding, and reckoned we've been through exactly the same, then I would be hurt, and yep it would feel like that 6 inch stiletto in the gut. The part that was the same was the environment we were in, and that we didn't plan for this to be the start to their life. I'd be supportive, for sure, that's me, but its not the same. No doubt there's someone out there that would have rather taken my journey over theirs. I think that's just natural.

What is important is for people to respect we all have our own journeys, everyone has there own perspective on what was "hard" and what was not, BUT, no-one should have to witness NICU. No-one. And all of us should stick together and get each other through the dark days. Because we're the only ones who can help each other through that.

The OP here (juicyfruity) basically says that though - yep, there is a difference in some ways, but on the whole we all have that big thing in common.

And if I come across as a dick at all in this thread I apologise I probably haven't explained my feelings properly but you know I respect every single one of you in this section, no word of a lie


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## Foogirl

No You don't come across that way at all AP, I know what you are getting at. It's not the person who genuinely found the week long stay traumatic who bothers you, it's the drama queen. The one who always wants to try to make you feel they know what you've been through because they saw it for a day, or the one who wants to belittle your pain by comparing what you went through with something which by all accounts was relatively inconsequential. The 36+6 that spent the night in SCBU but was back with mum in the morning, and that is turned in to an arduous journey complete with "corrected age" ticker and a post about their "concern" that their preemie is standing unaided at 4 months and that just can't be right. These sorts of people usually look for drama in everything they do. It's a bit like those women I've spoken of before, who insist their birth was traumatic because they didn't get the tea and toast they ordered.......

Again it comes down to the kind of person and their intentions. You and I know well enough there are things we post about our LOs which if we were different people, we'd have blocked each other from a long time ago. Noone needs boasty mummies or drama queens in their lives!


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## DonnaBallona

Foogirl said:


> The 36+6 that spent the night in SCBU but was back with mum in the morning, and that is turned in to an arduous journey complete with "corrected age" ticker and a post about their "concern" that their preemie is standing unaided at 4 months and that just can't be right. These sorts of people usually look for drama in everything they do. It's a bit like those women I've spoken of before, who insist their birth was traumatic because they didn't get the tea and toast they ordered.......
> 
> 
> 
> THIS! this is what I agree with!!! I just couldn't word it as nicely. :blush:Click to expand...


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## AP

Aw Foogirl you just nailed it. Totally. Don't listen to me folks :rofl: I just want to frame your posts these days I really do


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## Foogirl

Hehe hehe heh. Maybe I should become a professional post writer. Offer my services to stop people accidentally calling someone a wanker.

Although, to be fair. I'm not immune to accidentally doing that myself :haha:


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## juicyfruity

I love hearing all the opinons on here guys! feels good to have it all out in the open. The funny thing is that it IS difficult not to compare. A week ago i was feeling sad and frustrated that LO wasnt latching and feeding would just sleep through half her feeds while the boy in the cot beside us who was born same gestation minus a day was taking all his feeds my breast, weighed more and was going home the next day. I felt like such a failure. 

then just this morning getting Maria ready to come home from SCBU one of the mums i've gotten friendly with gave me a large box of quite expensive breast pads and said she didn't need them. She looked so sad. and i know why. Her son was a 27 weeker and try as she did she could not keep up and maintain a supply. I was very grateful and thank you and it made me totally realise another perspective. when i'm by the cotside expressing milk or trying to breastfeed she is reminded that she could not and of course she wanted too.


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## lozzy21

I have a different perspective because Niamh was in the room with the 24-27 weekers since it was the only place they had space, i hated being in that room because i felt terrible for the other parents. I could get her out and cuddle her at feed times with out the millions of wires and machines beeping. I was so relieved when she could come to the transition care ward with me.


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## Saki

I havent experienced any prejudice or what ever on bnb but in real life...phew...my son was born at 35 weeks altho our pediatrician is adamant he was a 30/32 week gestation baby...either way our birth was traumatic and i didnt get to even touch him until 8 hours after his birth...so now, 4 months on i get very upset when one particular family member makes comments that he isnt 'doing what his cousin did at that age' and when i say buqt he was a preemie i get 'yeah but a month doesnt count!' Arghh!!!

I guess my point is that each of our journies are different and for me, the support and shared advice/experiences are vital and i am thankful i found this website, being so far away from home :)


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## Stelly

its interesting all the perspectives people have here! I have to agree with foogirl's summary- very well put.

Although I will say, I am a pretty social person- and I reached out to a lot of other preemie parents while I was in the NICU, and I became friends with a wide range of folks who had babies at 23 weeks to full term babies with issues... I felt no air of competition between us. Maybe it was just the environment at our hospital but it was great support, we had lunches together in the cafeteria, exchanged BF tips and challenges, shared our babies triumphs and struggles.. it was really wonderful. I think its just a matter of just that- rejoice in victories and be a shoulder during the struggles..

Being in the hospital sucks- let alone having to deal with "well you havent had it as bad as us" from people. I'm sorry for those who have experienced that!


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## Stelly

The most prejudice I've received is from parents of healthy term children. I made the comment to a friend who had a full term healthy little one that I was surprised by the amount of Dr's appointments we have had since being discharged (pediatrician twice a week, occcupational therapy, physical therapy, going to the lab for reg blood draws etc) and she looked at me and said "dont be ridiculous, everyones baby has lots of appointments in the beginning"..... wha?


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