Preemie/NICU sub-forum or sticky? - Page 4

[jkpmomtoboys]

Originally Posted by Amys1st

What I was aimming at- the countless references to moms being forced into c sections in the mag which I agree to a point. Until the last issue about life in the nicu, I had never seen anything like that portrayed as a birth in Mothering. If it wasnt mama lying in water or on the bed w everyone delivering, it was bad bad bad. well I would have loved to do that but other plans happened and here I am w/ nicu exp under my belt and cding, cosleeping, bfeeding mama but may loose my club rights by the way Maggie was born in some people's mind. Heck someone in my ddc evern asked why I had a c section:

so its hard for a nfl place like mdc to say- hey this happens!!

My crash c/s at 29 weeks because of my placenta abruption while on hospital bedrest makes me feel like a leper sometimes in the water birth home birth crowd here. And mine happened almost 6 years ago. I can't imagine a new mom with these issues coming here, not being able to find us, and feeling like she doesn't belong as a result.

We definitely need a subforum...

[sweetpeasmom]

[5xmom]

We've been asking for this forum for so long - why no answer from the mods?

[Lousli]

I was just looking around the pregnancy forums and found:
one thread about a woman experiencing strong pelvic pressure and wondering if it was normal
one thread about a woman having lots of BH contrax at 34 weeks
one thread about a woman in the hospital at 33 weeks with possible PTL
ont thread with a woman announcing the birth of her 25 weeker

I think it would be REALLY helpful if all of these people could find each other, and those of us who have BTDT easily. It is really hard for me to see women experiencing signs of PTL and asking their ddc "Is this okay? Is this normal?" and to be told to drink a glass of wine, or lots of water, lay down, not to worry because the mucous plug can grow back, if it is real labor you'll know, etc. I know all of this can be true, but it is also so important for a woman to hear the other side, what the signs of PTL are and to trust her instinct and call her provider if she thinks something might be going on. I read women writing "I don't want to bother my midwife," and "It probably isn't anything" all the time. I'm sure there are quite a few women here who may have thought those things early on, and then realized later that the signs of labor were real! Preterm labor can be stopped, or at least delayed, if caught early on, an d this is really important to these tiny babies.

Please reconsider a special subforum for preemie/NICU babies. I honestly never in a million years would have thought to look at special needs parenting when I had 6 or 8 or 10 BH contractions in an hour. Or even in the 23 days my daughter was in the hospital. I don't think I visited special needs once to look for NICU parents.

[sweetpeasmom]

:
plus there is thread in breastfeeding on pumping for a preemie right now.
There always seems to be a thread here and there relating to preemie/nicu issues, they are all spread out.

I really wish I had more support while I was in the NICU relating to more nfl issues. I had a small preemie support group i'm on but honestly they were all mostly "mainstream" there were many things I did that they would never consider or understand, especially when it came to vaccination time for a preemie. I went though a rough time in the last month due to feeding issues from the staff, like scheduled feedings, withholding feedings that i wish i had btdt moms that could have helped support and given me advice. I fought daily with this issue with them and I honestly didn't have enough time to research the issue. A forum in this type of environment with mothers who believe in the same ideals as me would have been just the thing I needed.

and as for the ptl issues, thats another important point.

[Amys1st]

Originally Posted by sweetpeasmom

:

I really wish I had more support while I was in the NICU relating to more nfl issues. I had a small preemie support group i'm on but honestly they were all mostly "mainstream" there were many things I did that they would never consider or understand, especially when it came to vaccination time for a preemie. I went though a rough time in the last month due to feeding issues from the staff, like scheduled feedings, withholding feedings that i wish i had btdt moms that could have helped support and given me advice. I fought daily with this issue with them and I honestly didn't have enough time to research the issue. A forum in this type of environment with mothers who believe in the same ideals as me would have been just the thing I needed.

and as for the ptl issues, thats another important point.

oh yes the scheduled feedings and withholding feedins. It was like someone opened our chest and tore our heart out when they would do that. and yes btdt would have helped a lot. No one has time to research this issue since it is put upon you so quickly. One day you are pregnt and feeling a bit uneasy and a few days later you are standing by a open isolette w a warming lamp and a tiny baby w a million wires running to it and your head is spinning.

[Dena]

Originally Posted by Lousli

Please reconsider a special subforum for preemie/NICU babies. I honestly never in a million years would have thought to look at special needs parenting when I had 6 or 8 or 10 BH contractions in an hour. Or even in the 23 days my daughter was in the hospital. I don't think I visited special needs once to look for NICU parents.

:

While some preemies/NICU survivors may have ongoing issues that would qualify under special needs parenting, many do not, and most parents would not even think about that element when their babies are fighting for their very lives, which, of course, is the time a support board is most important. A special subforum for NICU survivors is essential. I think a second subforum under speciall needs parenting for preemie issues may also be extremely valuable, but they are two separate issues, and should be treated accordingly.

[liberal_chick]

Originally Posted by 5xmom

We've been asking for this forum for so long - why no answer from the mods?

: Its been right at 6 months since the original post in this thread. What is the hold up?

M.

[mimid]

I'm so surprised we are waiting on this.

[babycarrier]

Seems the answer is to try posting a thread in special needs.

i don't know, i checked out the forum the other day and it is no where i would have looked right after i had a birth issue. i would think birth and beyond.

or how about a sticky in the pregnancy forum - pointing in the direction if the need arises. i mean, nobody plans on going to the NICU. it was wretched but wonderful - had it been years ago, i would have lost my guy. now he is 10 months old and toddling around. i don't know what lingers from him from that first week, but i know i still fight my demons about it.

[Amys1st]

Originally Posted by farmlife

or how about a sticky in the pregnancy forum - pointing in the direction if the need arises. i mean, nobody plans on going to the NICU. it was wretched but wonderful - had it been years ago, i would have lost my guy. now he is 10 months old and toddling around. i don't know what lingers from him from that first week, but i know i still fight my demons about it.

I would have lost my Maggie as well. And yes 4 mos later we are fighting demons about it.

[mimid]

Originally Posted by farmlife

Seems the answer is to try posting a thread in special needs.

Why would I go to special needs? None of my girls are special needs. The NICU experience isn't only for special needs kids. I think it should be right there as a subforum of Parenting.

[fireant]

I agree. The NICU experience is its own separate of special needs. It was so traumatic for me and my DH and only other NICU parents can really understand what we went through. We're still dealing with NICU to try to resolve some errors they made so I'm very involved with it still 6 weeks after we got her home.

[wende]

Originally Posted by farmlife

Seems the answer is to try posting a thread in special needs.

i don't know, i checked out the forum the other day and it is no where i would have looked right after i had a birth issue. i would think birth and beyond.

or how about a sticky in the pregnancy forum - pointing in the direction if the need arises. i mean, nobody plans on going to the NICU. it was wretched but wonderful - had it been years ago, i would have lost my guy. now he is 10 months old and toddling around. i don't know what lingers from him from that first week, but i know i still fight my demons about it.

The answer should not be posting a thread in special needs. My babies were NEVER special needs and so I'd have never gone there. They were perfectly healthy and aside from taking a bit longer to learn to walk, they don't appear to have any life long affects of being born premature.

I also don't think that a sticky is the right place to host this either. Stickys tend to be very long and jumbled. I'm sorry but, especially w/o the search feature, I am not about to read through an entire thousand+ post thread of different people talking about their different issues to find what I'm looking for and someone may miss out on valuable information/advice because of that.

Preemies/NICU babies all have very different issues and parents of those babies all have different concerns. We should not be relegated to ONE thread for all the issues that may come up. I mean, we have a forum for blended families and a VBAC section but we don't have one for this??? How is this any less important?

[Dena]

Originally Posted by wende

The answer should not be posting a thread in special needs. My babies were NEVER special needs and so I'd have never gone there. They were perfectly healthy and aside from taking a bit longer to learn to walk, they don't appear to have any life long affects of being born premature.

I also don't think that a sticky is the right place to host this either. Stickys tend to be very long and jumbled. I'm sorry but, especially w/o the search feature, I am not about to read through an entire thousand+ post thread of different people talking about their different issues to find what I'm looking for and someone may miss out on valuable information/advice because of that.

Preemies/NICU babies all have very different issues and parents of those babies all have different concerns. We should not be relegated to ONE thread for all the issues that may come up. I mean, we have a forum for blended families and a VBAC section but we don't have one for this??? How is this any less important?

:

[sweetpeasmom]

Originally Posted by wende

The answer should not be posting a thread in special needs. My babies were NEVER special needs and so I'd have never gone there. They were perfectly healthy and aside from taking a bit longer to learn to walk, they don't appear to have any life long affects of being born premature.

I also don't think that a sticky is the right place to host this either. Stickys tend to be very long and jumbled. I'm sorry but, especially w/o the search feature, I am not about to read through an entire thousand+ post thread of different people talking about their different issues to find what I'm looking for and someone may miss out on valuable information/advice because of that.

Preemies/NICU babies all have very different issues and parents of those babies all have different concerns. We should not be relegated to ONE thread for all the issues that may come up. I mean, we have a forum for blended families and a VBAC section but we don't have one for this??? How is this any less important?

very well said and 110% agree
one thread is extremely hard to get to all the issues.
Many moms need a seperate thread to insure they get the adequate support and help.

[sweetpeasmom]

Originally Posted by Amys1st

I would have lost my Maggie as well. And yes 4 mos later we are fighting demons about it.

know the feeling, almost 2 years later and I still have nightmares

[proudhsmommy]

I just wanted to agree that there is a need for a forum for preemies/nicu etc.

Our daughter was born 6 weeks early, but stopped growing at 31 weeks. I went very preeclampsic and thought my swelling was "normal" water retention. Her birth was traumatic, she had no vitals when born and miraculously started breathing on her own after 10 minutes. I had major blood loss and full HELLPS.

I wish that I had somewhere to go back then. No one else I knew had been through anything like that. She spent 2 weeks in the hospital, I was in 10 days. She had a massive brain bleed from the forceps delivery into the uterus. Would have been great to be able to know if anyone had been through that. I felt SOOO alone and scared.

She just turned 5 and is in the 90th percentile. I remember the days when she wasn't even on the charts and look at her now.

There is definately a need for this!!!!

[Lousli]

Bumping this as I'm seeing a huge issue in the special needs forum about gifted children. I would think that some might take issue with having an area in special needs for preemies with no ongoing issues aside from prematurity.

[babycarrier]

I was just reading over there in special needs and cannot take my stuff over there. Mine was a birth issue. He is thriving and well now. I am haunted.

My thoughts are at the time of needing NICU at birth, if it happens as it did for all of us, who is clearheaded enough to find it in a parenting section. Many of us are familiar with the ddc and pregnant forum, why can it not be somehow "housed" there? Crucial, critical information on maintaining attachment in, my experience, a very detached setting. Kangaroo care - do you know I never even thought to pick him up and hold him more to help regulate his breathing. I just trusted that the thought seemed to be that it would be too much stimulation for him and he was best in that little plastic bin.
edited to add: I craved holding him but was so sure that the more he was 'resting' the better. After a few days, in my arms I learned that was what he needed but i lost that first day.

I know, how cold and detached of me, I berate myself secretly on the inside for it. But I didn't know. I never had to watch and hope with everything in me that my child would live. "they" seemed a lot more qualified to make those decisions. Even though, in most arenas I don't see eye to eye with "them". This experience threw me off my rocker and I didn't have a leg to stand on those first few days.

I trust MDC for so much and have learned so much here. I wish when I had a few minutes and logged in here there would have been info in the pregnant/birth arena. For all of the very real issues related to NICU care, I wish lack of exposure to information didn't have to be added to the weight. I don't want to see another set of parents struggle when a sticky seems so easy.