Could we get some clarification here regarding what this forum is for?

[BetsyNY]

It would be helpful if there were a sticky and some "rules" to refer to. Thanks!

[Knittin' in the Shade]

I always thought it was for support and comraderie between mamas (and papas) who are currently or have previously had NICU/preemie parenting experiences. However, in light of some of today's posts, apparently it's for letting those with no control of themselves to come in and post at will, regardless of how insanely insensitive it is to those who actually have real experience as NICU parents and the struggles that we go through every day in trying to care for our babies.

[mamadawg]

I'd like that.

I often lurk on this forum because I had 2 preemies (almost 33 weekers) and they were in the NICU (for exactly 2 weeks). But I'm hesitant to participate much because that was 3 years ago & we don't really have any ongoing preemie issues anymore. I do feel a kinship with parents of preemies, though. But I'm never quite sure if I belong here, yk?

[Knittin' in the Shade]

mamadawg, I think you defintiely belong here! My preemie is almot 3 now (although I'm probably just about to have another preemie, as I'm 34 weeks and feel like my water is going to break any second)

Anyway, I think that the whole preemie/NICU experience forever chances you as a parent, and I love getting input and advice from friends who have older kids who went through what Greg did. It makes me less apprehensive about the future, yk? So, I say you are defintiely welcomed!!!

[nathansmom]

Mamadawg-
I think anyone who has spent time in the nicu is welcome here. I sure hope I'm welcomed here. I spent time there with my full term first born and some major time with one of the twins.

[kkiolbassa]

Originally Posted by Knittin' in the Shade

mamadawg, I think you defintiely belong here!
Anyway, I think that the whole preemie/NICU experience forever chances you as a parent, and I love getting input and advice from friends who have older kids who went through what Greg did. It makes me less apprehensive about the future, yk? So, I say you are defintiely welcomed!!!

I totally agree. One of these days I have to find the time to post some questions that I have and i'd love the input of moms whose preemies are now older. My DD is almost 10 months and doing very well, but is still tiny for her age

[mamadawg]

Thanks, everyone.

[BetsyNY]

Originally Posted by Knittin' in the Shade

I always thought it was for support and comraderie between mamas (and papas) who are currently or have previously had NICU/preemie parenting experiences. However, in light of some of today's posts, apparently it's for letting those with no control of themselves to come in and post at will, regardless of how insanely insensitive it is to those who actually have real experience as NICU parents and the struggles that we go through every day in trying to care for our babies.

What she said.

I think having some rules to point to when someone like this comes along would serve us all well.


MamaDawg, of course you are welcome.

[sehbub]

Thanks for this, Betsy!

I know for me personally, I feel plenty guilty enough with having a preemie at all, let alone being preached to about how important it is for me to breastfeed her. She's 5 months old and we *still* haven't learned. Luckily my colostrum just came back (I'm 18 1/2wks pg), so hopefully someone at LLL can help us learn!

And "she" made me want to scream reading through the Synagis thread. How awful can it get? Talk about kicking when down.

[Amys1st]

Ladies, for now on, going forward IGNORE anyone like that who is a drifter. I pmmd her and said move along. If that happens again with any one else, do that... Its the 2nd time I have too.

[Nathan1097]

Originally Posted by Knittin' in the Shade

I always thought it was for support and comraderie between mamas (and papas) who are currently or have previously had NICU/preemie parenting experiences. However, in light of some of today's posts, apparently it's for letting those with no control of themselves to come in and post at will, regardless of how insanely insensitive it is to those who actually have real experience as NICU parents and the struggles that we go through every day in trying to care for our babies.

I do not have any preemies, but I post here because a) I was a premie and still have issues from it and b) I had premature labor with two of my pregnancies including hospitalizations, bedrest. I would hope that those experiencing high-risk pregnancies could benefit from my experiences. They might lurk here - sort of one foot in and one foot out. I know I got extremely luck to go to term- but I was told I WOULD deliver my son at 28 weeks per the nurses and doctors. As for being a parent of a premie no I am not and never said I was. I have no problems with anybody's choices here re: formula or synagis or whatever it might be. All parents much make their decisions as they come with the best information and support that they have.

[Knittin' in the Shade]

Originally Posted by Nathan1097

I do not have any preemies, but I post here because a) I was a premie and still have issues from it and b) I had premature labor with two of my pregnancies including hospitalizations, bedrest. I would hope that those experiencing high-risk pregnancies could benefit from my experiences. They might lurk here - sort of one foot in and one foot out. I know I got extremely luck to go to term- but I was told I WOULD deliver my son at 28 weeks per the nurses and doctors. As for being a parent of a premie no I am not and never said I was. I have no problems with anybody's choices here re: formula or synagis or whatever it might be. All parents much make their decisions as they come with the best information and support that they have.

I think those experiences are definitely valuable in this forum, I apologize if my earlier *definition* didn't include them. For sure, I think you have defintiely been an active and respectful participant in this forum and I definitely wouldn't want to see you leave!!

[maxmama]

I lurk in this forum more than post. I had 36 weeker (so not very preemie, but immature lungs, hypoglycemia, jaundice, pumping, NICU stay, yada yada yada) and I rotate to the NICU in our hospital pretty frequently (I'm L&D, but we all cross-train). It's very helpful to remind myself of the preemie families' issues and concerns as our NICU stay fades more. Okay if I stay?

[susienjay]

I've been mainly lurking recently because the NICU experience I went through with my 32 week twins has really been on my mind lately. I'm 24.5 weeks pregnant and I'm really terrified of having to go through it again. I wanted another baby so badly after the twins so I could have a nice normal pregnancy with a nice big full term baby. I thought it would help me heal from having the twins. I'm finding that it's not really working out like I hoped. I've had numerous pregnancy complications so far and have already been in the hospital twice. Having another preemie is becoming a very real possibility.

I feel a little guilty reading here because my twins really didn't have any problems once I brought them home. My son was nursing fine within 3 days. It took me about 2 weeks to get my dd nursing. They both gained weight really well and aside from some feeding issues with my son (gagging related to being gavage fed) I haven't had to deal with many of the things here.

[BetsyNY]

Susienjay, no guilt. We're all in this together.

[srmina]

I post here occasionally because I have a 3yo who had a very rare in utero complication that almost no other children have survived (umbilical cord rupture). She was full term, but extremely critically ill for a very long time. In a lot of people's minds, she did not have a good outcome...she has very severe CP, central line, feeding tube, seizures, etc. But she is doing amazing things despite all of that and I guess I just feel that I can give some people hope, no matter how seriously ill their babies are or how poor their prognosis. I also have a lot of specialized medical knowledge as a result of all of this which may also come in handy for somebody.

And I also have lots of flashbacks unfortunately that i am still dealing with.

[BundleFishMama]

Originally Posted by nathansmom

Mamadawg-
I think anyone who has spent time in the nicu is welcome here. I sure hope I'm welcomed here. I spent time there with my full term first born and some major time with one of the twins.

I wondered if there were any other moms who had full-term NICU babes around here! I lurk here occasionally - while I didn't have a preemie, my post-dates DS was in the NICU for 10 days with a severe Group B Strep infection this past June/July. I didn't have an ongoing struggle for months like many of you, and his care was pretty straightforward (just monitors and IV meds) but I was told that 5-15% of babies with GBS die from it, so it was still pretty scary

At first he didn't respond to the abx, his infection levels were increasing instead of decreasing and they had an infectious disease specialist from CHOP consult thinking maybe he had a drug-resistant strain. I was terrified. They did repeated spinal taps on him to see if maybe it had developed into meningitis. My husband was overseas, he had missed the birth (which included a couple of periods of major distress that almost led to a c/s but we narrowly escaped that!) and the discovery of the infection so I was all alone there.

I still had it way easier than you all - I was able to stay for the 10 days straight, sleeping and showering in the parents' room, and I could nurse him around the clock, since of course there were no feeding issues. So while there's a lot discussed here that I can't relate to exactly, still, I hope you don't mind that I lurk because the PTSD thread and the like are helpful to me. You are some amazing, courageous mamas with some incredible, beautiful babies!

[sunflowers]

I'm new to these message boards but I wanted to stop and say I love to talk to other mamas who have BTDT and can understand where I've been.

I noticed a few (close to) Philly girls here Anyone have a stay at CHOP?

[usolyfan]

I post here because my dd was delivered at 36 weeks. Still considered a preemie by medical and developmental standards. She was on a vent. and given serfactant then on oxygen. In the few areas not affected by Spina Bifida she has been delayed almost a month in reaching developmental milestones. Being a NICU parent, either current or past, puts you in a club you didn't ask to join. Only another NICU parent can relate to a NICU experience.

[BundleFishMama]

Originally Posted by sunflowers

I'm new to these message boards but I wanted to stop and say I love to talk to other mamas who have BTDT and can understand where I've been.

I noticed a few (close to) Philly girls here Anyone have a stay at CHOP?

We were at Pennsylvania Hospital, CHOP's sister hospital in Center City - I guess the Pennsy NICU is for non-surgical and the CHOP NICU is for surgical, at least that's what I was told - is that right?