Preemie/NICU sub-forum or sticky? - Page 3

[Amys1st]

amen to what Vera said.

My child is a 25 weeker and had a special issue - she was early. She has no special needs and is a nursing champ.

That said I have received numerous pms over the past few months w qustions from other mamas here at MDC who asked me info about my experience w the nicu, treatments, bfeeding, pumping, support etc. I even volunteer to mod it if neccsary.

[Lousli]

I agree a subforum would be helpful. Although I've noticed the pregnancy resources forum has gotten some visits, most of the women who are currently pregnant don't seem to go to this area to look for advice, they turn to their own due date club or the general I'm Pregnant forum. I have found myself cruising the ddc's for people who are 1-3 months away from delivering looking for women who might need advice about PTL. Sometimes people try to give helpful advice, but it is different to hear from other moms who have BTDT. And I'd love to be able to keep up with other preemie moms now that my daughter is older with questions about development, growth, etc.

[sehbub]

Yes on the need for a forum!

My DD was 10 weeks early and only spent 27 days in the hospital, but we're still not nursing and I could use all the support I can get. Plus, it would be nice to have a place to ask BTDT mamas about what to expect down the line!

[Dena]

I am adding my support for a couple of sub-forums. Like a couple of other moms here, my dd was full term, but still spent three weeks in the NICU due to severe meconium aspiration, and it has taken me until now to even find a few other moms who were in my situation, because there just weren't forums out there for us. The birth loss/trauma forums are often not a good fit because we do have babies who are alive, and oftentimes the trauma happened after the birth.

The preemie/NICU thread is a great start, but it is a lot of information crammed into one thread that I think would be better addressed if spaced out. I think both a NICU survivor forum and a parents of preemies forum would be useful to help "organize" the mamas posts so we could all find the support/info we need in a more accessible manner.

[Dena]

I just wanted to add,

As those of us who have had full term babies in hospital/NICU appear to be in the vast minority here, if any of you other moms who are in our boat want to pm or email me, maybe we could start our own little support group? I think there are only three or four of us, from what I gathered reading this thread, so maybe that would not be enough for a separate NICU forum.

Also, Cynthia's post appeared to assume that NICU issues included birth trauma, and I just wanted to stress, from having spent time lurking on birth trauma boards, that this is not necessarily so. Many of those women had horrible experiences during the birth, but babies that were born healthy, whereas we are in almost the opposite situation.

[MamaPam]

I would also love to see a NICU or Preemie subforum. There are so many issues that are unique to those of us with preemies or NICU stays. Both of my girls were premature and it is likely that any other children we have will be also. It would be great to have a section here on the Mothering forum to talk with other mamas who are not only going through the same struggles but from a natural family living perspective and not just let the doctors do whatever to your child.

Pam

[ErinEmily]

I would like to add my voice to the crowd. It would be great to have a sub forum for Prem and NICU/ hospitalized babies in Parenting. I also agree that it doesn't really belong in Special Needs. I would never have found it there. I hope we can get this soon so that it is easy to find. As others have mentioned there are so many issues that are similar to term baby issues but that are totally different because your baby is early, small, sick or all three.

[Diane~Alena]

I think this idea Rocks! I have had 7 preemies 4 of them lived to come home and we deal with preemie issues even now years later. It would be so nice to talk to other AP about the issues of NICU's or SpecialCareNurseries's as we call them up here. The long term effects of being born premature and how it effects vacinations and other health issues.

I tried the special needs parenting and found I didn't fit in there. My children aren't special needs enough they just had a rough start. The special care nursury was so tough as a natural parent. I knew my daughter needed to be close to me to sleep and saw that her heart calmed and she had no A's and B's when in skin to skin hold with me but the staff fought me, I was also not allowed to read her charts or be involved in her care beyond diaper change and nursing. It is a kind of issue no one can understand but other NICU moms. I went home nights empty handed and in fear that she would die while I was away from her at home, I didn't feel like she was realy mine when I was there and pumping was horrible I just wanted to hold and nurse my baby but couldn't. I wanted to be with her 24/7 but I felt I had to be supporting to my older kids also because they feared they would lose another sibling I was so torn.

[Amys1st]

I agree what is said I would never have found this is
special issues, Loss etc. I started my own threads in my ddc since a couple of us had this same issue and others from other ddcs wandered over.

I think a Premature birth forum would be great with sub forums:
Life in the NICU/Special Care Nursery
a sticky for what all those abbravitiations mean- you know, PDA, IVH, BPD, stage this stage that, this many ccs, As & Bs, I could go on and on..
Taking Baby home
Life w a former nicu now a tot
discuss Early Intervention, delays etc
Parents and their PTSD- we all know what that is like


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.

[Lousli]

ITA with Amy. I think the signs of preterm labor thread could be moved here and another great subforum would be preterm/NICU birth stories.

[babycarrier]

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.

[MamaPam]

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.

Pam

[Amys1st]

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:

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

[Amys1st]

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.

[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.

[Dena]

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.

[plantmama]

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.

[sweetpeasmom]

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.

[Diane~Alena]

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.

[Amys1st]

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!!