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Could we get some clarification here regarding what this forum is for? - Page 2

post #21 of 70
Just got reading here, my middle dd was a 33 weeker but wasn't in NICU. Unusually enough she went home with me 2 days later (I know that's very rare & she really was a 33 weeker, no confusion on dates or anything) but we've had on going medical problems. Actually most of her medical stuff was considered rare so I guess the whole situation kind of fits together, one rare occurance after another. Thankfully the worst of them let up around when she hit 3 (things were rough before then) but there's still issues on going. She just turned 7. I'm guessing there aren't that many on the other end of things in our boat, having a preemie but no NICU.
post #22 of 70
I think anyone who has any experience with preemie or NICU (be it as a parent or a nurse, friend or relative) should be more than welcome here. The types that wouldn't be welcomed are the types that say "My baby didn't have a problem with xyz so why does yours?" when their baby was full term and healthy. I have no problem with mamas of full term healthy babies posting, as long as it's in a respectful manner and as long as it takes into account that preemies/NICU babies are in a different health situation than their babies were, and thus the decisions we make may be different from the norm. I know when my son came early, I changed some of the decisions I'd previously made about my baby's medical care, based on his birth circumstances. I researched everything heavily before making those decisions.

And mamas who had short NICU stays or no NICU stays with their preemies shouldn't feel bad about posting here. You have experience too! There are some here who have very long, hard roads in the NICU, and they can benefit from anyone's support. And there are some who come here with less "iffy" situations, but still scary nonetheless. It doesn't matter if your baby is 24 weeks or 35 weeks - you're still a scared NICU mom, worried about your baby. And when your own baby is in the NICU, your baby is the sickest baby in the world in your mind. I think that's an appropriate feeling to have as a mother! Never be ashamed of it!
post #23 of 70
I agree with all that is said. IMHO if you spent just a few hours in the nicu, you were in a huge nightmare. Even if its less than a lot of people, you still can have huge affects on you.

Bundlefishmama- I remember you from our ddc and I remember during the 10 day duration we were all worried about you and the baby because you didnt post since you couldnt. When I read about the group b strep, my heart started pounding since I saw what could happen with it. I was so relieved when you baby came home. I do know that you would have ptsd from your experience and I was glad to see you here!

I dont have any issues with people lurking or asking questions. My issue is pp coming in who are here just to spit out facts etc. They have no other reason to be here but to say that we cant formula feed, cant leave our babies in the nicu alone, cant give the baby vax, bad girl for the c section, I could go on and on.

I know that the nicu is not a club any parent wanted to be a part of or this is not the birth they planned. Heck, the day Maggie was born "husband coached childbirth" came in the mail . There are some parents here who are living the nightmare as I type and I try to help them anyway possible. I also know we have shared with families who lost the nicu battle and it killed me inside for days.

I have now said to two different pps to leave unless you have real business to be here. This is not a place to reak havoc and post when you feel like it. Theses parents have true issues just like the surviving abuse, loss etc do. I would hope no one would go over there and harass or start this. IF it happens again, do what I do and then just ignore the person. If need be pm the others to do the same.
post #24 of 70
Quote:
Originally Posted by BundleFishMama View Post
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?
Sounds right. My little bundle was transferred there for surgery and was transferred back to her "home" hospital when she was stable and growing (about 2 weeks later). We went back to CHOP after just 10 days and I wouldn't let her be transferred anywhere after that. When they suggested another transfer, I said no and they began her discharge checklist. It seemed like not too many babies were discharged to home from CHOP.

I saw quite a few babies there who did not have surgery but they may have had some other "rare" condition.
post #25 of 70
Quote:
Originally Posted by Amys1st View Post
Bundlefishmama- I remember you from our ddc and I remember during the 10 day duration we were all worried about you and the baby because you didnt post since you couldnt. When I read about the group b strep, my heart started pounding since I saw what could happen with it. I was so relieved when you baby came home. I do know that you would have ptsd from your experience and I was glad to see you here!
Thanks Amy! I remember being so touched when we finally got home and I got online to our ddc and saw that so many mamas had posted wondering if we were OK and what had happened. I had asked my dh to try to get on and post a quick update for me, but I think he was barely keeping it together just taking care of our other kids! If anything at all good came out of that whole experience, my dh now appreciates me a lot more - no more "what do you do all day while I'm at the office working hard" arguments!!

I can imagine how offensive and hurtful it would be for a mama of full-term babies to dictate to you how you should care for your preemie, or seem to judge you for the difficult decisions you've had to make. I can relate a little because I have had people tell me, even after hearing what happened to Andrew, that they would refuse the GBS test during pregnancy and/or refuse prophylactic abx during labor if they were + for it. That they see it as just one more "unnecessary intervention"! It's every mama's right to make her own decision for her baby, but I find that a little insensitive - I want to get involved in some GBS awareness campaigns I've heard about, and some of my friends have implied that I'd be supporting "medicalized childbirth" by doing so Another supposed friend said to me, "You realize now that with your future babies they're going to want to induce you early and completely control your labor to make sure they have enough time to give you extra abx, right? Are you going to agree to that?" She said it in this really cynical tone implying that I've gone over to the dark side or something if I even consider doing anything like that to minimize risk to future babies. I mean, I am all for standing up for your beliefs on childbirth and parenting, but when a true medical problem occurs, which is more important, sticking to your doctrines or doing what's necessary for your baby's health or life?

ETA: I also *love* the people who imply that it's my fault that Andrew has severe allergies and digestive issues now (allergies to several foods incluing dairy, soy and nuts, blood in his stools, reflux, eczema, systemic yeast with recurrent thrush in his mouth) because "you gave him all those mega-doses of antibiotics right after birth when your breastmilk should have been colonizing his system properly" - hello, I'm an LLL Leader, I know that is what should have happened, but those antibiotics saved his life!! Sorry, thanks for allowing me to vent!
post #26 of 70
Quote:
Originally Posted by sunflowers View Post
Sounds right. My little bundle was transferred there for surgery and was transferred back to her "home" hospital when she was stable and growing (about 2 weeks later). We went back to CHOP after just 10 days and I wouldn't let her be transferred anywhere after that. When they suggested another transfer, I said no and they began her discharge checklist. It seemed like not too many babies were discharged to home from CHOP.

I saw quite a few babies there who did not have surgery but they may have had some other "rare" condition.
Yeah, I had asked the docs if it would be possible to transfer Andrew to Chester County Hospital (5 min. from us) so I could run home if I needed to, so the kids and dh could come visit more frequently (and more cheaply! Gas to Philly and parking at the hospital was outrageous!), etc., but then we decided it was best to stay at Pennsy - I was so, so happy with the care he was receiving and so grateful they were letting me stay there, I figured leave well enough alone.

Actually I found the staff in the regular NICU was fantastic; about halfway through our stay when Andrew was clearly getting better, we were moved to the transitional section of the NICU and I was not as crazy about the staff there. They were still great medically, but personally not as friendly/caring/supportive, etc. Since I was staying there that made a big difference to me - the nights I spent chatting through the wee hours with nice, friendly nurses went SO much faster than the ones I spent just rocking Andrew and staring at the ceiling while the nurses gossiped to each other way too loudly about some random people or whatever!
post #27 of 70
off topic

bundlefish- my parents are from philly but moved out to Chicago 35 years ago (while my mom was carrying me) so its neat to hear you speak of the different hospitals. They lived in Upper Darby. They just spent the last month of Aug/Sept at Sea Isle City at the shore while their house is being built here. We would have joined them but Maggie cannot fly for a few more years (nicu related).

on topic

I dont think a lot of nfl families (myself included for a time) understand there is a time and place for many many medical interventions. One of them is the nicu/picu. I dont care what anyone says, I have see how Group B can reak havoc on a little baby;s body and I watched a baby almost die. If he didnt get those antibiotics, he would have died. Heck he had a foot in the grave already.

Some of the things I have heard hear about the nicu is so far from ap its hard but oth, its that or the baby is not saved. I think I know the choice.
post #28 of 70
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post #29 of 70
bfm - one of my best friends works at Pennsy as a nuclear medicine tech, and her brother is a neuroscientist, and her SIL is also a doc there. She lives in Center City. I love visiting her! And I'm so sorry so many people gave you a hard time about Andrew. Just listening to you talk in our DDC, it's so obvious how much you love and care about your kids, and how hard you work to make sure you provide the best for them at all times. You're such an awesome mama!
post #30 of 70
I mostly lurk in this forum. I've been thinking about our nicu time a lot lately, probably because ds has a cardiology follow-up in November. My son was full term (9llbs13oz), but he has GBS, PDA, and pulmonary hypotension. His stay in the NICU was also only 17days. I don't comment on the preemie threads, because I realize I don't know anything about that. I do understand having your childs life hang in the balance and the stress of having to go home to sleep, eat, whatever. I think this forum needs to be about support other mamas and helping them deal. Not judgement.

MITB- I do not think the NICU will come to your room in every hospital. I know they wouldn't in mine, especially since my son had to be transferred to another hospital with a higher level nicu. If I had refused medical interventions my son would have died. Please, don't assume whatever happened in your experience is the same for anyone else.
post #31 of 70
I'm sure the NICU would've been happy to bring my 29-weekers to my room. No big deal that Kate couldn't breathe and was on a ventilator - just roll 'er and that warmer on down that (germy) hallway! No problem that Lilly only breathed a little and was on a CPAP - there's plenty of room in there!

Of course, I could've gotten "super nutty" and just refused all medical intervention. I'm sure the NICU would've been able to deliver my babies to their funeral.
post #32 of 70
I'm not really part of this forum--I lurk because I help mamas with breastfeeding and have gotten some good insight into what a mother of a premature baby might need, and would never post--but I am so sorry that this happened and what should be a support was a source of stress. I hope you're able to get things ironed out with a mod and have some guidelines in place so it doesn't happen again. Peace, mamas.
post #33 of 70
Quote:
Originally Posted by MamaInTheBoonies View Post
Just wanted to add, yes, NICU will come to your room so baby does not have to leave. It was a hassle but completely possible and some hospitals are changing their policy so that NICU staff is already present in the delivery room.
I know I'm new but I thought some NICU staff was always in the delivery room when a premature of baby with an identified risk was born? Both my babes were pre term and even my ds who was born 14 years ago had neonatology present at delivery.

And- I was fortunate to have been at a hospital with a very family-centered care policy. They had an open door policy(for parents and immediate family) and parents were welcome to visit and stay whenever and however long they liked. They provided sleeping arrangements for free as well as snacks, juices, coffee, ect. But I have never seen a NICU that allowed a baby on support to room in. I just can't imagine how that is possible given the amount of care these babes need. I'm curious to what your story really is?
post #34 of 70
Quote:
Originally Posted by MamaInTheBoonies View Post
Just wanted to add, yes, NICU will come to your room so baby does not have to leave. It was a hassle but completely possible and some hospitals are changing their policy so that NICU staff is already present in the delivery room.
Just wanted to add, yes the nicu came to my delivery too. In fact the neo on duty grabbed my 24 week 1lb 12 oz dd in the delivery. She also called my normal ped before the surgery for me, so I could have her present. Turns out my ped was her attending while she was a fellow. they are now best friends.

Actually in this state, the nicu people/neos have always attended births and have had emergency crews ready at all hours. Thank God since they then took my dd to a level 3 Nicu at the regional hospital 5 miles away. DH went after her with my FIL. Rooming in was the least thing on my mind. I had to recover from my surgery. My dd had to be on the vent, cpap, main lines, what else..... Gee she should have been in my room, not with the strike team saving her life.

I have no problem with the decisions you choose for your children, whether because of your experience, religion, beliefs whatnot. I will not ram down your throat what you did or didnt do nor will I spout out click here to read this etc unless of course you want us to. If you want to pm me your story, that will be fine but dont come in here not sharing and expect anyone not to believe you or your antics.
post #35 of 70
Quote:
Originally Posted by Amys1st View Post
Just wanted to add, yes the nicu came to my delivery too. In fact the neo on duty grabbed my 24 week 1lb 12 oz dd in the delivery. She also called my normal ped before the surgery for me, so I could have her present. Turns out my ped was her attending while she was a fellow. they are now best friends.

Actually in this state, the nicu people/neos have always attended births and have had emergency crews ready at all hours. Thank God since they then took my dd to a level 3 Nicu at the regional hospital 5 miles away. DH went after her with my FIL. Rooming in was the least thing on my mind. I had to recover from my surgery. My dd had to be on the vent, cpap, main lines, what else..... Gee she should have been in my room, not with the strike team saving her life.

I have no problem with the decisions you choose for your children, whether because of your experience, religion, beliefs whatnot. I will not ram down your throat what you did or didnt do nor will I spout out click here to read this etc unless of course you want us to. If you want to pm me your story, that will be fine but dont come in here not sharing and expect anyone not to believe you or your antics.
ITA. I would also love to hear your story. Hearing things like "the NICU can come to your room" makes me really sceptical. My daughter was a micropreemie (24w5d, 1lb4oz). There is no way they could have brought enough equipment up to keep her alive. The only way we could have refused medical intervention would have been to sign a DNR on her and I don't think ethically we would have been allowed to do such a thing anyway had we even remotely considered such a thought.

At my daughter's birth, my perinatologist is the one who pulled her out of my stomach. She was then instantly handed to the neonatologist, who was there with neo nurses and started working on Sydney immediately. Her Apgars were 1 and 6. Had they not been there she would have died. So of course they were there in the delivery room...
post #36 of 70
The neonatologist and 3 NICU nurses were there during my dd's birth too. That is routine. My dh did some NICU rotations as a resident and went to all complicated births, even if there was just a tiny bit of meconium.

NICU coming into the hospital room???? What kind of nonsense is that? Like my dd on her oscillator, with her 3 central lines, with her daily surgeries and procedures, with her sepsis and liver and kidney failure and her daily blood transfusions could be in a regular room. Hello, there is a reason the NICU is super-sterile and full of equipment!!!!!
post #37 of 70
Quote:
Originally Posted by OGirlieMama View Post
I'm sure the NICU would've been happy to bring my 29-weekers to my room. No big deal that Kate couldn't breathe and was on a ventilator - just roll 'er and that warmer on down that (germy) hallway! No problem that Lilly only breathed a little and was on a CPAP - there's plenty of room in there!

Of course, I could've gotten "super nutty" and just refused all medical intervention. I'm sure the NICU would've been able to deliver my babies to their funeral.


Oh yeah...the vent, the wires, the 1:1 nurse ratio....just wheel all of 'em right into my room and hey keep that room open for me for the next 2 months while he's in the NICU so he never has to leave my side...

C'mon...
post #38 of 70
Ok, we all had our fun IGNORE please!
post #39 of 70
Quote:
Originally Posted by sunflowers View Post
I know I'm new but I thought some NICU staff was always in the delivery room when a premature of baby with an identified risk was born? Both my babes were pre term and even my ds who was born 14 years ago had neonatology present at delivery.

And- I was fortunate to have been at a hospital with a very family-centered care policy. They had an open door policy(for parents and immediate family) and parents were welcome to visit and stay whenever and however long they liked. They provided sleeping arrangements for free as well as snacks, juices, coffee, ect. But I have never seen a NICU that allowed a baby on support to room in. I just can't imagine how that is possible given the amount of care these babes need. I'm curious to what your story really is?
:

I'm so tired of being told that whatever we do isn't good enough. It's really freaking old. And totally unecessary. I'd love some sort of policy on this board for this reason.
post #40 of 70
I also lurk this forum a lot. I have a 9 yo daughter who was 2.5 lbs at 32 weeks. She was in the hospital for 5 weeks. But sometimes I feel I shouldn't be posting here because she is now 9. But I also feel like a part of the "preemie group" because the experience I went through was one that changed my life forever. I noticed someone saying she had concerns because her 10 month old was still so tiny. My dd was 10 lbs at 1 years old. She didn't catch up to other kids her age until last year.

Also, 9 years ago I also had neonatologist and 3 neo nurses in the operating room when I had my c-section.
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