The preemie/NICU support thread gets lost in B&B, partly because it doesn't get a ton of traffic. I would like to propose, however, that it get some kind of designation to make it easier to find. I think it would get much more use if it were more obvious. I was on MDC for a long time before I knew that it existed, and especially at the beginning when I was still raw from the traumatic birth, I could have used that support.
Originally Posted by Amys1st
This stuff is so not mdc with our emergency c sections and having to go by what Drs say even though its not natural but since NFL is going more mainstream and there is more than 50,000 subscribers, you will have mamas delivering in this matter. Also since we can substain the life of my 24 weeker and she can come out of this fine and this wasnt possible even 10 years ago in some ways. As natural as a life I lead, I am so grateful for what we had to get me daughter home so I can raise her in a very AP way.
Sorry if I came off the wrong way in my post. With my second pregnancy I started having preterm labor at 19weeks and as nasty as some of the meds are for preterm labor at this point baby would not have survived. As I progressed it go to a point where risk to baby and me from meds outweighed allowing the baby to be born early. This and the struggles of bf/pumping and kangeroo care in the NICU are what I meant by having to push against the drs/nurses sometimes. I am also grateful that both girls survived and are thriving.
Originally Posted by MamaPam
Sorry if I came off the wrong way in my post.
Pam
This was not directed at your post Pam so no need to be sorry!
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
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so its hard for a nfl place like mdc to say- hey this happens!!
Originally Posted by farmlife
A place to talk about the parent's trauma would be helpful. It still haunts me. Would love a place to explore what has helped others.
I would never look in loss or special needs as I don't associate either with my situation.
100% agree. My dh is haunted by some stuff in the nicu.
I know I already responded to this post, but I wanted to add that I agree those that said they are still haunted. It's been 17 months and I still cry when thinking back on our time in the NICU. DH says I need to just get over it, but for some reason I can't. I would love a place to talk about these things with others.
Yes, I am in the same boat, even after 21 months, therapy, etc. I have already replied to this post (twice!) but wanted to jump in again to stress the extreme need for a NICU survivors forum.
I was just telling dh last night that it feels like something inside of me broke or went off kilter while dd was in the NICU, and it is a part of me I have never quite been able to get back. Feeling like I am alone in this doesn't help.
I have searched and searche for support groups in the hopes that there would be others in our position, but there doesn't seem to be anything out there, except for groups for preemie parents. As dd was not a preemie, just born gravely ill, we don't belong there, either. A NICU survivors forum open to ALL parents of NICU survivors, not just parents of preemies, would be a godsend, imo.
This is such a good idea. I never read the support thread because it is too long and not specific enough. A sub- forum is a really good idea.
I felt so isolated from NFL after I couldn't have my ds at home like I planned and he was in the NICU for 6 weeks. Breastfeeding, pumping all this went fine...but I felt like I couldn't properly bond with him etc...until many months after he came home and would've really liked some support.
Like another poster said my birth was not traumatic (it was wonderful, drug free, perfect) but the aftermath was so hard.
Another vote for Preemie/ NICU babies forum. And my ds is 2.5 and doing great, but I would love to be supportive of other parents dealing with this.
Originally Posted by Danielle283
I know I already responded to this post, but I wanted to add that I agree those that said they are still haunted. It's been 17 months and I still cry when thinking back on our time in the NICU. DH says I need to just get over it, but for some reason I can't. I would love a place to talk about these things with others.
oh my gosh I so do too. Everytime I think of it, i cry like crazy. Even if your NICU time is over, it's really not over.
My eldest daughters are turning 9 in a few days and as the day nears I think more and more about their delivery and the fear for their lives. My daughters were born at 29 weeks and my second born was stillborn and revived, they lived 66 days in the SCN before coming home on EBM and bottles. I have had three preemies since their birth 9 years ago but I still remember the emotions and feel the guilt and regret about them. A forum would be a great place to talk about older preemies.
Funny- its more my dh than me- he is haunted and says that he left a part of himself there. But I have not had as much an issue becuase I had a long talk w one of Maggie's Neonatoligist one night in the special care nursery when she was on call waiting for twins and I was the only other baby in there. I was there until 11:30 talking to here before she went to the twin delivery and she made me feel so much better. I wished dh was there because I felt the world lift off my shoulders. But not everyone has such luck.
I just put it as a list of what needs to be covered not knowing really how important it really is. So yes- we really need this forum!!
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.
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.
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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.
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.
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.
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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.
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.
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.
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.
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.
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?
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?
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.
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