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!

 

[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

 

[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

 

[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!

 

[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

 

[DonnaBallona]

big hugs xxxxxxx

 

[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.

 

[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.

 

[Foogirl]

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

 

[Foogirl]

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.

 

[AP]

you do that

 

[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!

 

[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!

 

[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.

 

[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!

 

[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

 

[DonnaBallona]

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?

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

 

[AP]

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. 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!

 

[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.

 

[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!!