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

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#61 of 111 Old 06-08-2006, 05:23 PM
 
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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...

Jen, former attorney and now SAHM to 11 yo ds and 8 yo ds

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#62 of 111 Old 06-27-2006, 09:09 AM
 
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#63 of 111 Old 06-27-2006, 10:53 AM
 
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We've been asking for this forum for so long - why no answer from the mods?
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#64 of 111 Old 07-02-2006, 12:52 AM
 
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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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#65 of 111 Old 07-02-2006, 10:11 AM
 
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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.
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#66 of 111 Old 07-02-2006, 10:25 AM
 
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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.

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#67 of 111 Old 07-02-2006, 01:34 PM
 
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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.

Wife to Thomas, WAH mama to Sofia Rose 8/04, Ellen Marie 10/07, her twin sister Amalie Joy lost 7/07 , and Maya Grace and Hannah Miriam 4/10
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#68 of 111 Old 07-03-2006, 01:21 PM
 
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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.

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#69 of 111 Old 07-03-2006, 02:58 PM
 
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I'm so surprised we are waiting on this.

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#70 of 111 Old 07-04-2006, 09:50 AM
 
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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.
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#71 of 111 Old 07-04-2006, 11:02 AM
 
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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.

"The true joy of life is the trip. The station is only a dream. It constantly out distances us."
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#72 of 111 Old 07-06-2006, 02:45 PM
 
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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.

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#73 of 111 Old 07-07-2006, 12:54 PM
 
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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.
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#74 of 111 Old 07-07-2006, 02:04 PM
 
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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?
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#75 of 111 Old 07-07-2006, 02:08 PM
 
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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?
:

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#76 of 111 Old 07-08-2006, 11:18 AM
 
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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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#77 of 111 Old 07-08-2006, 11:21 AM
 
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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
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#78 of 111 Old 07-08-2006, 12:41 PM
 
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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!!!!
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#79 of 111 Old 07-12-2006, 08:14 PM
 
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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.
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#80 of 111 Old 07-12-2006, 08:38 PM
 
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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.
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#81 of 111 Old 07-12-2006, 09:15 PM
 
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You said it so beautifully! I know EXACTLY what you mean. I still kick myself every day for the things I did/didn't do/allowed!
I don't want this to happen to someone else!
If MDC doesn't have a Nicu/preemie sub-forum here to give people vital and very time sensitive information regarding AP/NFL who will?
I had the Dr. Sears preemie book and, although it was very informative, it barely scratched the surface.
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#82 of 111 Old 07-12-2006, 11:00 PM
 
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I love the idea of having it in the pregnany section, or birth and beyond maybe. I know I keep reiterating this, but I think women who are facing PTL or a possible NICU stay for their DC would love to have a resource of ideas and BTDT mamas.
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#83 of 111 Old 07-13-2006, 12:12 AM
 
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Originally Posted by crissei
I had the Dr. Sears preemie book and, although it was very informative, it barely scratched the surface.
it scared the daylights out of us w/ his not so happening for micros like my dd

"The true joy of life is the trip. The station is only a dream. It constantly out distances us."
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#84 of 111 Old 07-13-2006, 12:58 AM
 
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I think this would be so helpful for lots of reasons. I had three months of Preterm Labor, DS was born at term but with pneumonia. I am still trying to process what happened when he was in the NICU. I can't get straight answers from doctors, I wonder what could have been done differently, and I have SO much guilt for the way I handled things (I had never heard of AP then - but I should have known better. I can't believe I didn't).
Also, I would love to help out moms going through this now, so that they don't have the same residual issues I do, or just so that they have support. I learned a lot from the experience and from research I have done since.
It never occurred to me to look under special needs, I just happened to catch this thread on the main board.
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#85 of 111 Old 07-13-2006, 02:55 PM
 
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Cyneburh s how many weeks along are you now? Were you contracting at all or was it just the water breaking? I think there are some moms on here who had ruptured membranes for many many weeks before delivering. There's a book called "preemies", I'll see if I can link to it, that has information om babies born at different stages of development and what some of the most common concerns and tests and procedures are at each stage.
http://www.amazon.com/gp/product/067...006232?ie=UTF8
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#86 of 111 Old 07-13-2006, 03:10 PM
 
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That sounds really good! You're almost 33 weeks! If your babe is born pretty soon, you probably won't have a very long NICU stay at all. And maybe he/she will hold out a little longer and you won't have a NICU stay at all! My 36 weeker didn't, and my 33 weeker was only there 23 days. I'll keep you and your babe in my thoughts.
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#87 of 111 Old 07-14-2006, 01:16 AM
 
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Oh no problem, I don't mind posting at all. She was 4 pounds 1 ounce at birth, and lost some weight down to 3 pounds 7 ounces. She needed oxygen for less than 12 hours, probably because I had steriod shots for her. I don't remember them discussing this with us while I was in the hospital, but because of some complications I was a little out of it. Her records indicated that she had an infection, and they gave her antibiotics, but I'm not really sure if it was more of a preventative thing, since I had a fever and a virus when she was born.

She was IV fed only for a day or two, and then when she was a little more stable she was tube fed colstrum. Aftera while she was tube fed breastmilk and then bottle fed breastmilk because she still wasn't latching well at the breast even though we were trying. She did end up learning to nurse, but it took us three months. Most of her stay in the hospital was to learn to eat and to grow larger and maintain temperature. She was released at under 5 pounds, I think 4 pounds 11 ounces after 23 days there.

Let's see, we had to do the carseat test before being allowed to go home. They montior heart rate and breathing while the baby is in the carseat, the angle sometimes makes it hard for preemies to breathe well. They have to have a good heart rate and breathing for an hour and they pass. She failed twice and finally passed on the third try.

While in the hospital they tested her hearing, did an ultrasound of her head, did some blood tests, and measured her urine output by weighing her diapers and counted her dirty diapers as well. She was fine on all these things, just a small baby, as I said.

Unfortunately we didn't know a lot about kangaroo care, and i was exhausted from the traumatic birth experience and pumping around the clock plus nursing my older daughter. I was really torn between this tiny baby that needed me but had all these expert nurses around to care for her, and didn't yet seem like "mine" and her older sister, who was very vocally missing me and confused about why i had been gone so much and was so sad. I spent less time there than i should have, and didn't work on nursing as hard as i would have like until we were home. That made bonding with her difficult at first. but she is the light of my life now.
A few minutes after birth:
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Three days old:
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#88 of 111 Old 07-14-2006, 04:40 AM
 
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Cynburh, my girls were born at 33-5/7 and were in the NICU for 2 weeks to learn to suck better and grow. After they came out from the bililights, they cobedded in an open bed for 9 days. I know you've been hearing it, but the longer you can go, the better. I'll be praying for you and your babe!

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#89 of 111 Old 07-14-2006, 10:06 AM
 
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Originally Posted by Amys1st
it scared the daylights out of us w/ his not so happening for micros like my dd
It bugged us with his only two types of parents: the go with the flow and the high maintenance. Because we asked a lot of questions we were considered high maintenance?
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#90 of 111 Old 07-14-2006, 10:11 AM
 
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Originally Posted by Marlow's mom to be
It bugged us with his only two types of parents: the go with the flow and the high maintenance. Because we asked a lot of questions we were considered high maintenance?

I guess we were considered high maitence too then. Funny I saw his book and thought- Great we would have never survivied w out the Baby book so this will be great. Wrong!

DH thinks it needs a new edition and it hasnt been updated w the times.

There is a story out today about the growing amount of premature births. The news showed our nicu and had Maggie's Dr on. Watching the couple who live 2 blocks away from me talk and seeing the isolette and all those noises etc sent both of us into a crying fit. I guess its still more raw than I thought

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