VENT - mothers of full term babies giving advice on preemies

[kondonis]

the vaccination thread really got me thinking about this and remembering how frustrated I was when mothers of full term babies would try to give me advice or tell me something about my child that was in no way helpful to the point of absurity in not knowing what it was like to have a premature baby and having a whole other set of rules in how to raise your child and what to think about.

Like, how many mothers of FT babies

-had to take CPR before being allowed to take their child home?

-had to manage an oxygen tank, feeding tubes, gtube, pumps, or stomas when home?

- see 5 doctors a month for the first few months for their child

- not have their child on the growth chart and knwo that the advice - oh they will eat when they are hungry really mean absolutely nothing.

- really know that your baby could (and had) have a random apnea or bradycardia spell at home and that you constantly watched their breathing, adn their breathing rate.

- worry about taking their child out into the wide world of germs we live in?

- not be able to hold your child for weeks.

- that newborn pictures of your child full of IV's , ventilators, O2, or other monitors?


it still gets to me, over a year later, when mothers of FT children assume anything about my child, esp. related to health, and give me advice not knowing, or being able to fully comprehend, the hell we went through to have our babies, and what we have to do to not only keep them healthy, but to get them up to speed with their actual age.

it's just frustrating. thanks for letting me vent.

[liberal_chick]

:yeah:

[5xmom]

I remember totally snapping at a mother when she asked me how big my son was ( he was the sickest and they actually told us to come up and hold him because he wasn't going to live through the night) - I told her 4# and she said "Oh - he'll be fine, then - I have a friend who had a 1 pound baby..". I told her that he was actually the sickest baby in the NICU and stormed off:angry . I know people mean well, but I just couldn't take it!

[twins10705]

I think it is the same with anyone who has a child with a condition or illness -- like people who try to give out breastfeeding advice when you have a child with an oral aversion to the breast(and anything except for one type of bottle nipple) -- they mean well, they want to help.
People tell me all about how my babies will be "caught up eventually"...this is a weird way of thinking IMO...if any given baby were born 11 or 12 weeks(or however many weeks) early, they would probably be on a similar developmental level/tract as my 10 month old sons. I don't need my babies to "catch up" to anything -- they are fine for how early they were born....another reason why I am against stuffing micropreemies with 26 cal slop trying to fatten them up as quick as possible. I understand the worry and all....but an extra day or two in the NICU to gain weight a little more slowly would be preferable to overtaxing the organs and possibly causing longterm damage.
The vax issue is another one that boils my blood -- vaccines were never and have never been tested on any preemies!! I do know that there is a 4X higher SIDS rate for preemies as well as higher rates on all kinds of problems -- I think adding toxins, heavy metals and anatural viruses into the bloodstream could only do harm...and there is no study that exists to prove me wrong or right -- WHY RISK IT?

[nepenthesea]

The vax issue is another one that boils my blood -- vaccines were never and have never been tested on any preemies!! I do know that there is a 4X higher SIDS rate for preemies as well as higher rates on all kinds of problems -- I think adding toxins, heavy metals and anatural viruses into the bloodstream could only do harm...and there is no study that exists to prove me wrong or right -- WHY RISK IT?

I know what you mean. I think alot of people thought my husband and I were crazy for not vaxxing our preemies (9 weeks early), since we were handwashing fanatics, and didn't really take them in public for months. But we figured that with them being that small and vulnerable that they were even MORE susceptible to the negative effects of vaxes than full-term babies.

[jenmparrott]

I can get that way with my FT special needs baby too. I get so fed up with everyone else knowing what is best for MY child. My preemie has been a little better. People tend to stay away from the subject now.

Jennifer

[sehbub]

I also got really sick of the "oh she'll be fine if she weighed 3# at birth. my (insert relation here) is (insert age here) now and was smaller than her!" Well whoop-dee-doo. Did your relation have kidney reflux, two holes in his/her heart, apnea of prematurity and any of the other slew of problems that DD was born with? Great. Leave me alone!

I know we got lucky...DD never needed oxygen, and the holes in her heart closed up by the time we went back to the cardiologist when she was 2 months old, and so far her kidney reflux hasn't caused any infections. However, I still spent a month sitting in a sterile nursery in the hospital for 12-15 hours a day, while being 90 miles away from my husband and other two kids.

My mother was the one who ticked me off the most, actually. My sister was born 5 weeks early and weighed 4lb 10oz. She went home after the requisite 48 hour stay for new babies. When DD was born, my mom said, "don't worry honey, you sister was small too. I know what you're going through." my DH almost threw her out of the room.

DD is already on the growth charts though, and yesterday we were at a baby shower for a friend of mine, and another mama had her DD there who is two weeks older than mine. My DD is the same size as hers, and was born 10wks early, while the other baby was full term.

I have been lucky though. Most of my friends and family have asked how they can help, or done research on preemies before asking questions. Those who didn't, or said things like, "You're so lucky that you have someone to take care of your newborn for you. most new moms have to take care of their babies by themselves. At least you get to do whatever you want." are no longer acquaintances of ours.

[Cyneburh]

That's why I was so surprised that the vax thread was moved... it seemed obvious to me that the question was about vaxing PREEMIES not about vaccinations in general. It seemed like a perfect thread for the reasoning behind this subforum.

I did appreciate the link there to the package insert... that really helped me to be able to read it. Right now in my mind, the long term issues of respiratory problems are a bigger threat to my son the then short term threat of RSV. Especially when I consider that he is breastfed, slung, kept close and I have a very ready supply of SA on hand to help head anything off... even the small viruses.

[jenmparrott]

I would have to agree on the vax thread. I have just had to learn to stay away from threads like that and that is sad.

Jennifer

[jenmparrott]

I would have to agree on the vax thread. I have just had to learn to stay away from threads like that and that is sad.

Jennifer

[Ruthla]

Mother of full term babies popping in here:

Do you mind when parents of FT babies pop into your forum while trying to respect that your babies' needs are different and NOT trying to be "experts" in something we're not experts on?

I would never dream of saying something along the lines of "well, my DS was 9 lbs at birth and he never had a problem with germs, so why are you so worried?"

What about something like this "My DS was in the NICU for a week, even though it was probably not medically necessary, and it was emotionally draining. I can only imagine what it must have been like for you to go back and forth from the hospital for months, not knowing when your baby was going to be able to come home, while trying to keep some semblence of order for your older children at home. :Hug"

Or what about something like "I've never been in that situation, but this is probably the choice I would make in your situation (taking into account the ACTUAL facts about your child's condition and the medical decision you're agonizing over)....."

I don't want to step on any toes, but I'd like to know if/how a mom like me could contribute to your forum.

[sehbub]

Hi, Ruth. You've been a NICU parent, so you understand some of what we all have dealt with, at least from the hospital stay side of it. IMO, offering condolences over shared experiences, or lamenting the hardships that come along with prenting a NICU babe is great. It's when people tell me not to worry about my baby that I get especially irked.

I know just from my experience that all the medical research in the world on a specific condition can not totally prepare you to be in that situation. I know several other mamas who feel that way, which is why a comment like "I've never been in that situation, but this is probably the choice I would make in your situation (taking into account the ACTUAL facts about your child's condition and the medical decision you're agonizing over)....." could be misconstrued as being pushy instead of helpful. Now...if someone comes to me and says, "I've never been in your situation, and would like to know more about your child's (insert medical condition here) if you don't mind." I'm fine with that. For me at least, I need to feel like I'm being asked how/why I made certain decisions for my daughter, and not told what I should have done.

I have no problem talking to parents of full term babies, and am glad to do so. Babies are small for such a short time (except preemies...we get so much more use out of all of their clothes! :lol ) that I have to remind myself that people are just trying to relate in any way they can.

So ask away, and I say comment on the areas in which you feel confident. If you have questions, ask them. I don't think anyone will begrudge you curiosity.

[Cyneburh]

I don't find that a problem either Ruth! There's a huge difference between being a sounding board and belittling an experience. The example you gave of trying to think like a preemie mom and giving your thoughts... that's being a sounding board. It's like something I might try to do with the parent of a micro-preemie... trying to collect info for them, doing research, trying to reason through things... that's very different then coming in and saying, "Well... my baby who was born at 43 weeks was just fine... I don't see why you're concerned..." (Though my 43 weeker might not be the best example becasue she was in the SCN for totally spurious reasons... that's why I homebirthed my second and hoped to homebirth my 3rd.)

[HeatherHeather]

Hi, I usually post on the vax board. To be honest I didn't open the preemie thread until today b/c I don't have any experience with preemies and felt I would have nothing to add. Well, I was bored today and opened the thread, which is what brings me here to visit this thread.

I really hope that you wonderful, wise mothers do not abandon that thread. Please share your stories and don't feel that you have to debate or defend your positions. Your stories/opinions are important. Some lurking mother of preemies may search the board and find that thread. LongIsland gave some information out of the package insert that I think she didn't fully understand. I have tried to give the accurate information.

Please don't just abandon the thread, I think you have good info. to offer. A preemie is not the same as a full-term baby and I really believe in my heart that your experiences belong in that thread.

I'm sorry for intruding on your board.

Peace,

Heather

[kondonis]

Mother of full term babies popping in here:

Do you mind when parents of FT babies pop into your forum while trying to respect that your babies' needs are different and NOT trying to be "experts" in something we're not experts on?

I don't mind this at all. Knowledge is power, and with 1 in 8 babies born premature, you are likely to know someone pretty soon with a preemie and can also direct them here.



What about something like this "My DS was in the NICU for a week, even though it was probably not medically necessary, and it was emotionally draining. I can only imagine what it must have been like for you to go back and forth from the hospital for months, not knowing when your baby was going to be able to come home, while trying to keep some semblence of order for your older children at home. :Hug"

this is ok too. though, depending on the emotional state of the mother, it may not. to be honest, I was pissed at every mother who had a full term healthy child for a long time and was not open at all to anything from them. a simple hug was way better than any words.



Or what about something like "I've never been in that situation, but this is probably the choice I would make in your situation (taking into account the ACTUAL facts about your child's condition and the medical decision you're agonizing over)....."


this would not go over well with me. if you haven't been there, it's really hard to know, and it is such a sensitive subject that even the most sincere response would probably come off badly to a mother of a very sick premature baby.


I am thankful though, for people like you who care enough to ask, and I think it's really wonderful and caring of you to ask. I want you to know that my responses are not personal nor directed at you, but what I think my honest reaction would be to the scenarios you posted.

thanks again for asking.

[kondonis]

omg why do I do this - I just went back to read the vaccine debate on synagis and now I am royally pissed off.

sometimes I honestly think people are so against ANYTHING, that they can't separate the good from the bad.

even reading "What your doctor may NOT tell you about childhood vaccines" they said kids with lung disease should get synagis.

isnt' that the bible for antivaxxers?

argh! to me, telling a preemie mom not to get synagis is right up there with the most irresponsible things you could tell someone. and, this from mothers of full term healthy children. :irked:

[Lousli]

kondonis,
ITA. I got Synagis for my daughter for two full seasons because her older sister was in preschool and I was so worried about her catching RSV. And she was by far not as premature as many of the babies here, so I'm sure not as high risk. But I was absolutely terrified of RSV and her being back in the hospital. I generally stay out of the vax area, because I find it quite hostile to people that vax. I'm not pushing them on anyone else, but I do vax my own kids, and I don't enjoy the debate.

[DreamsInDigital]

My full term babe had RSV and it scared the sh&% out of me. He had to be hospitalized for 5 days and at one point my doctor mentioned that some babies die from RSV. :( I do not blame any mamas of preemies for getting the Synagis. I would too for a preemie. I of course was not offered it for my full term baby and he almost died. He did have some underlying medical conditions; food allergies, asthma, eczema and failure to thrive. I probably would have considered it, we do not vax at all, but I might have considered the Synagis for him.
I realize with full term babies I don't belong here, but I do want to mention that some of us come over here because we do want you mommies to know that we support you and care about you and your babies. I'm sorry you have had some no so great experiences. Also, all threads, regardless of the forum, show up on the "New posts" search, so everyone may end up reading here at some point.
But I just want you mamas to know that there are some of who support you and carry a tiny piece of your burden with you by caring and following your stories and thinking of your little ones often. :throb

[mama-a-llama]

Like, how many mothers of FT babies

-had to take CPR before being allowed to take their child home?

-had to manage an oxygen tank, feeding tubes, gtube, pumps, or stomas when home?

- see 5 doctors a month for the first few months for their child

- not have their child on the growth chart and knwo that the advice - oh they will eat when they are hungry really mean absolutely nothing.

- really know that your baby could (and had) have a random apnea or bradycardia spell at home and that you constantly watched their breathing, adn their breathing rate.

- worry about taking their child out into the wide world of germs we live in?

- not be able to hold your child for weeks.

- that newborn pictures of your child full of IV's , ventilators, O2, or other monitors?

Sorry for intruding, just wanted to show some support. I have dealt with many of the things on that list, since my ds has health problems and was in cardiac ICU for a bit. I don't consider that anything like the NICU/preemie experience, but I have felt the same way about advice from others who have no clue.
Wishing you all the best with your babies.

[mfp02]

While I agree for the most part, I have a few friends who had full term babes with many probs upon birth. And while their experiences in NICU differed vastly from our experience of having twin preemies.. I could understand why they offered us advice. I didn't always take the advice easily, but I tried!

[Lousli]

I think that the problem is really not so much about full term/preemie, but healthy full term baby or NICU baby. I think parents of healthy full term babies can't understand many of the things we go through, but I have no doubt that the parent of a very sick newborn experiences many of the same things as the parent of a preemie.

One of my own personal isuues with parents of healthy babies, especially those who have had a wonderful unmedicated birth/homebirth/UC is that I often feel so much judgement about my birth experiences and how much intervention I had. I get REALLY tired of the attitude that it all would have been okay if I had a midwife/doula/homebirth, whatever. Sometimes I feel like changing my sig to say, "I couldn't have a homebirth at 33 weeks, and the interventions were to try to keep my baby IN me a little longer!"

[Amys1st]

Amen to the OP. I had in my ddc as well as IRL two mamas ask me if you were fully dilated, why did you have a c section?? Because my 24 weeker stuck her foot in my birth canel and would have died in a vaginal birth!!!

to the IRL person who I could not stand anyhow, I said that, and she just looked weird. I said did I make you feel like an a$$hole? She just looked at me and I said- Good I meant to. Mean? totally but she had no right asking me anyhow.

When you have a nicu experience, anyone outside of the nicu annoys you. People close to you or casual aquaintances will say very stupid things to you. They may not mean to since they never knew someone who has been in your position. Also, you feel like your privacy is totally invaded. If you have older children you need assistance and a lot of it. That may mean someone helping in your home or having your childrne go somewhere else. It took us at least 4 mos to get our act back together after the fact.

I havent even mentioned the emotional rollar coaster ride that starts with the delivery of your baby and continues until you bring your baby home and then it could start again!

for you mamas who are "popping" over here after the vax thread- here are some advice:

Do not send sympathy cards or those horrible "thoughts and prayers" cards. There was a baby born, send a note saying congrats and you look forward to meeting the baby.

Dont ask "is there anything I can do" or "let me know if there is anything I can do. " DO something. Tell the parents you can take the children this day or that day and do it, bring a few meals over, run errands for the family, return calls for them etc.

Dont refer to the baby as a little doll, a small animal, stories about babies in shoe boxes, dont ask if the baby is wearing doll clothes. Do say how beautiful their baby is.

Dont say I dont know how your surviving and how I could ever handle such a thing. Dont say how horrible it is that the parents have to go everyday- they know how horrible it is. Do say you are thinking of them and their new beautiful baby

Dont ask for details, dont offer advice, do start praying and extend that invitation to others to pray.

Dont be offended when your calls go unanswered- sometimes for weeks or months. The parents dont want to give their birth story or break down again on the phone or in person. Give them space.

Dont say the baby will be just fine. The parents dont care about your neighbors baby who weighed 4 oz and is at Harvard or your cousins twins who were premature and have problems now. They are only thinking of their baby and if it will survive.

Sorry so rough, but this is life in the nicu. This is just s short list of what we went thru and other parents I know went thru.

[munkeesmama]

Bravo once again amy. Very well said. I just realized that our daughters were born just 3 days apart. How is she doing now? We're having issues our way..

[wonderwahine]

you bring up a good point, but you also don't know our personal history.......yeah my son was FT but all 3 of my nephews were preemies, and I helped my SIL from day one to raise them, I was at the hospital everyday visiting them. I myself was also a preemie. I took a CPR course and a childcare and nannying course in school. I helped feed my nephews through a feeding tube in the hospital, I helped babysit preemie twins who had apnea monitors. Just because we have FT babes, doesnt mean we don't have experience to add.

[bri276]

I can get that way with my FT special needs baby too. I get so fed up with everyone else knowing what is best for MY child.

Jennifer

yeah me too. my dd was 41 wks and only nicu for 5 days but went home on the O2 machine for weeks, has had surgery and still has more to come, I go to doctors appts constantly, she's nowhere on the growth chart. I think definitely preemie parents can bond over the extended nicu stays and typical preemie issues but there are FT parents like myself and other special needs mamas who do have similar experiences.

basically the way I feel is the two categories are the people who had healthy babies who went home (or were born at home) on time and no problems OR the rest of us, who are all at varying degrees- there can be someone whose preemie was in the nicu for many weeks but who is doing really well at 12 months old but for some of us, even if baby was FT the problems aren't gone and it's a lifestyle that's different from the average parent. :o

[nathansmom]

Is there an intro thread for this forum? I didn't realize this was here until the other day. I'd really like to share our story one day.

[Lousli]

There was a thread for a long time in questions and suggestions asking to add a forum for this area. Many of us felt the special circumstances of NICU and preemie babies were ones that needed to be discussed and that support from other NICU parents was needed.

I have to say that I agree that NICU babies, whether full term or preemie, are going to meet with a lot of special challenges geing started in life. Their parents are going to have a tough road of it, and that's why this forum was created.

I agree with many of the things Amy has posted. I know lots of us have shared those experiences. In my personal experience, I had a few different opinions. The thing about congratulations cards instead of sympathy cards is certainly a good point, and I'm sure a very serious one when you have a baby that is extremely tiny and possibly on the brink of viability. IME, I had a baby that was farther along, and we were pretty sure she'd be okay in the long term. But a simple con gratualtions seemed a little empty to me. I didn't want to be congratulated for the birth of a baby that was still in the hospital. I wanted people to at least also ASK me how I was doing.

In a similar vein, I had no difficulty with people asking if there was anything they could do. Before having Hazel, I had never spent a long time in a hospital. I had no idea that the cafeteria would only be open ceratin hours or that they'd pay for parking (but our gas costs from driving back and forth would be huge). I didn't know we'd need preemie clothes and diapers, books to answer our questions, and a baby scale to make sure she was gaining. When people asked what they could do, I figured they honestly did not know (as I wouldn't have known) and I told them what was needed. I figured if they asked, I wasn't going to try to beat around the bush and pretend everything was okay, nor did I expect them to know. I do still think so kindly of the friends and neighbors who rallyed around us and did just DO things, without being asked. I think though that most people honestly feel awkward and don't know what to do.

And to the PP's who were preemies, or had a lot of experience with preemies, or had full-term babies with health issues, I do think you have valuable things to contribute to this forum. But, and please don't take this the wrong way, even if you have loved a small child that was in the NICU, and helped take care of them or babysat them, it still is not quite the same experience as having your own child in there. Of course, that doesn't mean you can't contribute, I just think it is hard for us parents, because as many of use said, we often hear things like, "Well, my cousin was only 1.5 pounds at birth, and she is fine now." and it is really hard for us.

[kondonis]

you bring up a good point, but you also don't know our personal history.......yeah my son was FT but all 3 of my nephews were preemies, and I helped my SIL from day one to raise them, I was at the hospital everyday visiting them. I myself was also a preemie. I took a CPR course and a childcare and nannying course in school. I helped feed my nephews through a feeding tube in the hospital, I helped babysit preemie twins who had apnea monitors. Just because we have FT babes, doesnt mean we don't have experience to add.


you are parallel to the experience of a parent who has a premature or sick child. You may have sympathy, and you may have assisted, but you get to go home. You get to go home to your full term healthy children. You may love your nephews, but not like their parent. You may worry about your nephews, but not not their parents.

assisting and helping is nothing compared to doing it day in and day out.

your input is not invaluable, but even if it may end up being helpful, it is more likely to upset someone who actually is doing it.

for instance - you helped feed your nephew through a tube in the hospital. does that mean you held up the bottle so gravity could push it through the tube to his belly? that might have seemed extraordinary to you, but it wasn't. now, if you said you actually had to place NG tubes or change out a gtube on a regular basis, then what you would have to say would be helpful. that's what preemie moms have to do. does that make sense?

I hope your nephew is doing well, but please take what I have to say here as not saying you are unwelcome here, but to give you some perspective on your "experience" vs. what most mothers of premature babies come here looking for.

[kondonis]

for you mamas who are "popping" over here after the vax thread- here are some advice:

Do not send sympathy cards or those horrible "thoughts and prayers" cards. There was a baby born, send a note saying congrats and you look forward to meeting the baby.

Dont refer to the baby as a little doll, a small animal, stories about babies in shoe boxes, dont ask if the baby is wearing doll clothes. Do say how beautiful their baby is.

Dont say I dont know how your surviving and how I could ever handle such a thing. Dont say how horrible it is that the parents have to go everyday- they know how horrible it is. Do say you are thinking of them and their new beautiful baby

Dont say the baby will be just fine. The parents dont care about your neighbors baby who weighed 4 oz and is at Harvard or your cousins twins who were premature and have problems now. They are only thinking of their baby and if it will survive.

Sorry so rough, but this is life in the nicu. This is just s short list of what we went thru and other parents I know went thru.

OMG if I heard one more shoebox story last year I think I might have gone postal. seriously, a shoe box? come on! think!!

I totally hear you on "your baby will be just fine" - my mother and sister were really big on this. finally, at my wits end, I just went off on them - I was like- if that makes you feel better to say, fine. but, it doesn't make me feel better. not even the doctors know if he will be fine, and you just saying it makes me mad and makes me have to tell you that he might not - and I don't want to think it, and you are making me tell you. so stop saying it - pray for it - but it's not a done deal. argh that made me so mad too. like, how the hell do they know? its just something people say to make themselves feel better, and not have to think about the alternative, which the parents and doctors are always thinking about!

ah, vent threads are so theraputic!

I'm going to post an email I never sent to my mother and sister but wrote after a particularly bad week - I know you guys will totally get it. brb.

[wonderwahine]

you are parallel to the experience of a parent who has a premature or sick child. You may have sympathy, and you may have assisted, but you get to go home. You get to go home to your full term healthy children. You may love your nephews, but not like their parent. You may worry about your nephews, but not not their parents.


see, and your making assuptions again......I couldnt go home, because the only NICU unit that could handle my nephews was in the town me and my parents lived in, and not where my brother and his wife lived, they had to live WITH us for 5mths. Then they moved up to our town and lived around the corner from us. And at that time in my life, i was only 13, and with the second one i was 16, I helped with every aspect in those boys lives, i fed them, diapered them, rocked them to sleep, watched them like a hawk when they were sleeping to make sure they were still breathing. I helped out my sister in law when they had terrible reflux and she had PPD. So no, i couldnt "go home" and I wouldnt, because regardless of if they were my child or not, they were a family member that needed help, and everyday I worried about that baby, I made phone calls from school to check on him, I walked 6 blocks from my high school to the NICU unit to see him as soon as school finished. I helped feed him bm through a tube, I helped my SIL pump, I helped bathe him once he was big enough. I also sat back and watched and cryed the day he was born when they had to rush to hook him up to oxygen because he went blue. Don't tell me I don't know enough about it.

[kondonis]

here is the email I never sent... boy it would have caused WW111 in my house


I want you to know that I appreciate all the good thoughts, care, and love you show me and William. Now that things have settled down a bit, I'd like to ask a favor of you both as well as share some needs I have to protect my sanity. Here goes:

please stop asking me about his health. I promise, if anything new comes up, good or bad, I will tell you. I am tired of giving constant updates on every little thing, and I just want you to assume he is fine unless I say otherwise. I promise I will give you details when they come up. As such, I will not be sharing William's dr. visit schedule. I do promise to tell you when things are normal, good, or need follow up so you are AWARE.

you can always ask after William in general - what he's been doing, etc. I will always tell you. sometimes, there is nothing new, but I will try to come up with something. However you must reciprocate with equally cute stories about YOUR kids so its not one sided. "they're fine" just isn't good enough. Mom, you can feel free tell me stories about them that L has neglected to tell me.

You can always give me unsolicited advice on anything other than William's specific medical issues. That includes immunizations, teething, diaper rash, feeding, solids vs. bottle, etc

no asking about the nurses during their working hours (8:30-4:30).

I don't go anywhere. if I don't answer at one number, there is no need to call the other number. If I don't pick up, I have my hands full with something and can't answer. I promise I will call you back as soon a I can. It drives me crazy to be up to my neck in breastfeeding or changing a diaper or a crying baby only to have the phone constantly ringing. Also, William takes his naps on me. sometimes i just can't get to the phone or talk on the phone or it will wake him up. This is not particular to you. I have also conveyed the same message to my friends and Maxim nursing agency (who called all the time - several times a day!)

When I say that I will call you back, it will be the same day. Sometimes it will be right away, sometimes it won't, depending on what's going on.
When you leave a message, please use a quiet voice. my answering machine has only 1 volume (loud) and it can wake up the baby.

I was so crazy with the phone ringing, the constant advice, the micromanaging of will's doctor visits and having to give full reports on the visit (and what we'd be doing next) I felt like I was the kid and my mom and sister were the parents. I was so frustrated!

the worst for me would be, I would say something about being worried about sleeping because I didn't trust the apnea monitor and was so afraid of William not breathing and they'd say, "oh I know! I totally worried about X when they were a baby! it's totally normal!" I was like WTF? you do NOT KNOW. when your child has lung damage and JUST got of O2, then you know.

and, they would obsess about saying something was "normal" when I would tell them stuff, like - oh good, thanks. like they were so desperate to get to normal. I know everyone was, but it still drove me nuts. I love them both to death, but their love of me and will was going to make me jump off a building in the early days. I swear I did not answer my phone just because they were contstantly calling - I know they were worried, but man, I needed a break.

they told me that when I didn't call, they worried that something horrible happened, which I can imagine was pretty stressful for them, but still, a little moderation please!

[Finch]

I'm going to try to speak gently here. These mamas have been through/are going through something that is still so traumatic and fresh to them, and that they struggle with every day. This forum is sacred to them and like a breath of fresh air. Yes, I'm sure lots of us FT mamas could sympathize with some of the stuff they are going through, but I assure you we really can't know what it's like until we've walked in their shoes. Preemies are another world.

I say this as a special needs mom and having heard the "I know what your life is like" argument before from people who really and truly did NOT, but meant well. It only dumps salt on very raw wounds.

These mamas need their space, they need to commisserate with other mamas who really DO know what it's like because they have BEEN there or are still there. They need love and support and above all they need this forum to remain their safe haven. Please, let's respect that.

[sehbub]

see, and your making assuptions again......I couldnt go home, because the only NICU unit that could handle my nephews was in the town me and my parents lived in, and not where my brother and his wife lived, they had to live WITH us for 5mths. Then they moved up to our town and lived around the corner from us. And at that time in my life, i was only 13, and with the second one i was 16, I helped with every aspect in those boys lives, i fed them, diapered them, rocked them to sleep, watched them like a hawk when they were sleeping to make sure they were still breathing. I helped out my sister in law when they had terrible reflux and she had PPD. So no, i couldnt "go home" and I wouldnt, because regardless of if they were my child or not, they were a family member that needed help, and everyday I worried about that baby, I made phone calls from school to check on him, I walked 6 blocks from my high school to the NICU unit to see him as soon as school finished. I helped feed him bm through a tube, I helped my SIL pump, I helped bathe him once he was big enough. I also sat back and watched and cryed the day he was born when they had to rush to hook him up to oxygen because he went blue. Don't tell me I don't know enough about it.

No one is saying you don't know enough about the NICU experience. I think the point that was trying to be made is that without having actually given birth to a preemie/NICU baby, it's difficult for someone to have the full range of experience and emotions tied to it.

I think it is amazing that you were capable and willing to be in the hospital with your nephews as much as you were, and I applaud you for how much you took on to help take care of them, especially at such a young age.

Please don't be offended or hurt. As parents of NICU babies, there is so much more to it than just the physical care-taking, that 99.9% of people simply can not comprehend. The only people who fully understand what it feels like to see your own child lying in a plastic box hooked up to God-knows-what is another NICU parent who has been there.

Please offer your experience and insight on topics in which you have first-hand knowledge, but please also understand that as much as you love your nephews and your brother and SIL, it was simply a different situation for you than it was for us. You may not have gone home, but if your nephews had gone critical, the hospital would not have called you to deal with it, they would have called your brother and SIL.

Please also respect what we have all gone through as being different from your own experience, whether you believe that or not. Until you have had your own baby taken from you to be rushed to the NICU and have not been allowed to touch him or her for several hours or days, and then struggled through all of the normal post partum hormone changes while living in the NICU, please, please accept that our lives are very different from yours, and don't get upset with us. Our experiences were very different. Please accept that.

[sehbub]

Kondonis, I sent a similar e-mail to my MIL, and actually had it out over the phone with my mother one night.

My MIL was not as bad as my mom, but she was still pretty bad, only because she was a newborn nurse, so she thought that everything she said was law. Every time I'd give her an update on Sam, and voice a concern, she'd say, "Oh yeah, that's totally normal." Keep in mind, she didn't spend one day working in the NICU.

And my mother was the absolute worst, because my sister was born at just under 5lbs, so mom thought she had some kind of leeway simply because my sister was little. My sis was never in the NICU and went home the same day as my mom. I finally snapped at her one night after she called to see how Sam's day had been (we were still in the NICU) and when I told her she had lost a little weight again and they hadn't been able to increase her feeds in almost 48 hours, my mother started in with, "Oh I wouldn't worry about it...when A was so little, I worried about her gaining weight too, but , you know, she turned out fine...after all..." I finally cut her off with "STOP IT! I am so SICK of hearing how you have been through exactly what I have, and know everything! You DON'T! You have never been in a hospital for 15 hours a day watching your three pound baby, not knowing if she's going to live through the night, and terrified to sleep or eat, for fear that while you're gone something will happen! You took ALL of your babies home when you were supposed to, and have NEVER been through this!"

She didn't speak to me for almost three weeks after that, and told my father to tell me that I hurt her feelings and she wouldn't speak to me until I gave her a formal, written (!) apology. I still haven't apologized.

[kondonis]

see, and your making assuptions again......I couldnt go home, because the only NICU unit that could handle my nephews was in the town me and my parents lived in, and not where my brother and his wife lived, they had to live WITH us for 5mths. Then they moved up to our town and lived around the corner from us. And at that time in my life, i was only 13, and with the second one i was 16, I helped with every aspect in those boys lives, i fed them, diapered them, rocked them to sleep, watched them like a hawk when they were sleeping to make sure they were still breathing. I helped out my sister in law when they had terrible reflux and she had PPD. So no, i couldnt "go home" and I wouldnt, because regardless of if they were my child or not, they were a family member that needed help, and everyday I worried about that baby, I made phone calls from school to check on him, I walked 6 blocks from my high school to the NICU unit to see him as soon as school finished. I helped feed him bm through a tube, I helped my SIL pump, I helped bathe him once he was big enough. I also sat back and watched and cryed the day he was born when they had to rush to hook him up to oxygen because he went blue. Don't tell me I don't know enough about it.


you helped your SIL pump? hmm. odd.

you were 13? hmm.

you cried when your nephew turned blue? good, you are human.

but, you are not a mother of a preemie.

you were a kid yourself, barely a teenager.

I can tell you obvioulsy are a very capable and caring person, and your SIL was luckly to have you help her, but be thankful you do not have our experience. be very thankful.

but, I will say, you don't know enough about it, and your insistance that you do based on what you said above supports that.

that doesn't mean you don't know something about it. but, being a babysitter and being a mother are quite different things. do you disagree with that?

[wonderwahine]

no, i dont disagree with that, but you still dont know my full history, just because its not on my signature, it doesnt mean i havent lost a baby, it doesnt mean i havent had a preemie, and it doesnt mean I don't know what its like.

and yes, my age may say i was a teen, but I have never been a normal teen, I moved to the US and got married at 19.

and yes, it seems odd, but my SIL couldnt have an eletric pump, so i had to help her pump by opperating the hand pump while she double pumped.

[kondonis]

She didn't speak to me for almost three weeks after that, and told my father to tell me that I hurt her feelings and she wouldn't speak to me until I gave her a formal, written (!) apology. I still haven't apologized.

good for you. some people try to make it all about them - when they are third party players. I'm not sure where it comes from - why they insist on being an authority on something when the experience they have is not comparable. maybe it's out of a sense of helplessness, I don't know. but, if anyone should aplogise, your mother should apologise to you. I hope you told your dad that.

why anyone would want to insist they had experience like we do when they do not is troublesome on so many levels.

and I will clarify that I don't just mean preemie moms, but mothers of critically ill children in general. we all know the fear that has forever changed our lives.

[Amys1st]

Yes I must agree the shoebox analogy made me want to go postal a few times.

Since I have a FT baby- DD1, I know what its like not to know what a parent of a preemie is like or what they are going thru. But, with DD1, I went into PTL at 29 weeks. I was 1cm dilated but I did 7 weeks bedrest and managed to keep the baby in and also 4 cm dilated. After I got up at 36 weeks, I went until 3 days before my EDD. Some people said the bedrest was for nothing but I think it kept her in!!

At 35 weeks w dd1, I had more contractions and spent a day at the hospital. On that visit, the NEo on duty came in to meet us. She said if we deliver, she would be there and if needed, they would give the baby oxygen etc and if needed transport her to the nicu MAggie actually ended up at 3.5 years later. That day up until that point was the scarest in our marriage, seeing that Neo come into the room. I ended up going home but she kept in our minds for a long time.

The day I delivered MAggie, she met us at the door and introduced herself. DH and I said together- We met you before. That confirmed our worst nightmare. Too bad, she is the nicest lady and a special friend to our family now but then, we knew what were in for since we met her a few years back.

Since we had all those issues w/ my first prgncy (seems like a snap compared to MAggies!) we waited until dd1 was 3 until we tried again.
My dh believes we had these issues to prepare us for Maggie's arrival.

We took dd1 home two days after she delivered and had a baby moon, had a great breastfeeding relationship blah blah blah. She is a great little girl and we are so glad for that. So I do know what its like to take home a FT baby with me when I went home and how horrible it is to take home a baby 3 mos plus later.

I personally felt we had an upper hand in the nicu experience since we had a child before that so we knew what was normal or what was not. We also knew that our baby would grow and come home eventually since we had seen our older daughter grow. I still remember that new mothers in there and their questions about anything whether it was pumping, sleeping, what they needed etc. Some were good stress relievers to talk about while others it was hard to answer their questions.

To the pp who took care of her nephew- thank you for your input! I think you're a great person for what you did but I myself like others say- you havent lived it fully and no I do not know if you had several nicu experiences yourself since I am not a mindreader nor did you post them or put in your siggy. So understand your going to get brushed over or ignored unless you have a thread w questions about what should you be doing for your family members etc.

Also like another pp had said- I worked very hard and did several pms to get this forum going and its a place for the nicu mamas and we need to speak w other nicu mamas and talk about what happens. A majority of nicu mamas who are in this process now only want to talk to other nicu parents for very good reasons- they know what its like to bear a child and see it in a box w wires. Thus the need for this vent forum!

I do not go into the surviving loss forum since I cannot fathom losing a child but other mamas who have can help the posters over there. I also do not go into surving abuse since I do not have anything to offer. Same thing here!

[sehbub]

no, i dont disagree with that, but you still dont know my full history, just because its not on my signature, it doesnt mean i havent lost a baby, it doesnt mean i havent had a preemie, and it doesnt mean I don't know what its like.

If you want to be accepted as a contributing part of this group, just like any other group, then share your history that makes you a part of the group. Stop telling us we don't know you're full history. Of course we don't. None of us (as far as I know) are able to read minds, but insisting you have knowledge of such an intimate, intense experience without actually explaining yourself isn't fair to those of us who have been very candid about the most tender moments of our lives.

As a pp said, unless you explain yourself, you will continue to be discredited, not because you haven't cared for a preemie/NICU baby, but simply because it's hard for a NICU parent to open up to someone who hasn't been there. It's a totally different world.

If you have given birth to and cared for or lost your OWN baby in the NICU, then by all means, please join us and share your experiences. If however you feel entitled simply because you visited someone in the NICU, no matter how close you were to that patient, it is not, nor should anyone assume it to be the same thing.

We can't know your whole story unless you tell us. Stop holding it against us.

[kondonis]

:thumb


ok, continuing on this vein, I'm going to add one more vent - (and then I'll be done for a while, I swear!)

I hate when people just meet you and guess your childs age. I was at a birthday party for my friend's son and one of the mothers in her mothers group came over to say hi and asked, so how old is your son - 8 months? I was like :irked: No, he's 16 months. and just left it in cold silence. I mean, just ASK, don't guess! And, for what its worth, he is in the 50th percentile in size for a 16 month old, and developmentally on track (finally!) so it was adding insult to injury. Like, here is a big, perfect kid - what, is he a baby?

and the funny thing is her son was the same size as my son and he was two? I have no idea what the heck she was thinking.

ok. done now. :lol thanks for listening!

[Lousli]

I get that all the time. My daughter is extremely small, she weighs less than 20 pounds and is 30, maybe now 31 inches tall. She's 19.5 months. People always think she's 9 months or a year old. I've actually met plenty of babies 9 months old that weigh more, but they don't walk, run, climb, and say 2 and three word sentences! :irked: I actually was going to start a thread here about her size to get some ideas from all of you.

[Kathi13]

I think everyone has some very valid points made here. I know a lot of things mentioned happened to me and made me very upset. But I also want to add that it is not just having the experience of caring for a preemie (NICU or Special Needs) child that defines the difference between being the parent and a being a very helpful relative or friend. What no one has really mentioned is the guilty and grieving feelings that I know a lot of us put on ourselves when we do have a preemie or Special needs child (whether preemie or FT). I went through months of guilty wondering what I did wrong, what could I have done differently, that I should have known something was wrong sooner and then maybe. I also grieved for NOT being able to carry to term, for loosing the last 3 months of being pregnant, not having the birth experience I wanted, not being able to keep my DD inutero past 28wks, etc.

These feelings contribute to the WHOLE preemie experience because not only are you dealing with having your very sick child in the NICU, possibly living far away from home, having to relay information to well meaning family and friends, you are also dealing with your own feelings guilt, anxiety, worry, etc. And while I think most people can and do sympothise with parents who have a sick child and do try and be as helpful as they know how it is still not the same as being that childs parent - it never will be.

That being said one of the worse things any person ever said to me was when DD was around 8-9m old. She had come home on O2 and less than 5lbs so her birth announcement photo had her with a nasal cannula on - someone came to visit and told me I should take the photo down (had a copy in a frame on shelves) because DD didn't look like that anymore. :irked: How many parents take down their childs first "official" photograph - just because they don't look like that anymore....

[sehbub]

Kathi, that's terrible. I also had a "friend" tell me that I should take down the photo we have in our living room of DD in her isolette with her feeding tube clearly visible. It was "disturbing." Tough.

And yes, the guilt is terrible, and ate away at me for a very long time, and still does on occasion, when yet another person (at least one a day) comments on how tiny DD is for her age. When it is mentioned that she is a 30wk preemie, the look that inevitably crosses one's face is one of "what went wrong?" In our case, nothing. My pregnancy was completely normal and perfectly healthy until I went in to unexpected labor at 27weeks.

[jkpmomtoboys]

After ds was born and we were at the ped for a well-check, a lady asked me how old he was. After I told her (he was a 29 weeker but a big one at that), she asked me if I was sure...

What?!? No, wait, hold on a minute--let me check his birth certificate...

And my dear, dear, 97 year old grandmother, who I love, still talks about how ds was the size of a roasting chicken....:irked:

[sehbub]

People compare DD to inanimate objects too, instead of just, "her back was the size of the palm of your hand, shoulder to butt."

I do think it's cute when my DSDs talk about their little sister though. They brought her an Elmo doll when she was in the NICU, and DD was smaller than the doll. The girls tell people that, and then the four year old says, "but sje's super strong like me and sissy, and she's getting so big!!" all the while DSD2 is flexing her muscles to show how strong she is.

[MCT25]

I am so glad we have a preemie/nicu forum. Because my daughter was born at 34weeks and weighed just over 5lbs I got all the "oh she wasn't THAT premature, she's fine" comments. I still get them. They drive me crazy. DD is now 19months and healthy and well and on track developmentally thank goodness but she was REALLY REALLY sick for a long time. And those people who stopped me in the stores watching me haul Sara in the sling with a diaper bag on one shoulder and her apnea monitor on the other and chase my THEN 5 year old around and said, "gee, you really shouldn't be out that soon with that baby.." OOOOOOOOOOH! They have no idea. And the people lwho complained about hand washing and no one getting to visit the baby.. . . . . . . . Yeah. My pregnancy was horrific and the birth was traumatic, as was the nicu time. And then we went back to the hospital for RSV 2 weeks after she came home. Those full-term moms whose babies are healthy and strong have no idea what it's like to hold down your struggling, screaming preemie who is recieving a spinal tap and turning blue because she's trying to breathe through the pain. They have no idea what it feels like to have empty arms at night and have your only connection to your baby be through the portholes of her isolette while you aren't allowed to hold her. They have no idea what it's like and them trying to give advice just hurts.

Meg

[Amys1st]

I am so glad we have a preemie/nicu forum. Because my daughter was born at 34weeks and weighed just over 5lbs I got all the "oh she wasn't THAT premature, she's fine" comments.

Meg

But she still was and still has premature issues. I cannot believe anyone would say that but then again I have heard some things!

Some of the babies I saw that were the sickest had 10 weeks on my dd and no one could say shes fine to them.

I think the media shows these micros and how they are beating world records etc so our society thinks they will "be fine". well my micro is "doing fine" and she is 6 mos old and has raked up a 1/2 million in medical bills to be fine. The two smallest babies ever to survive did so in Maggie's nicu - Loyola University Medical Center. One is in high school, the other is about 2 years old now. The 2 year old has a fraternal twin sister who was just over a pound. They are both doing fine. As fine as you can after a 5 mo nicu stay. My home care nurse also cares for these girls. She said the smaller one is doing better but yes both of these will eventually be fine but it will take some time. I dont think people realize that most of these babies should and will have a normal like but they need to get there first. And to get there it might be a rollar coaster ride.

[Finch]

Most people equate weight with health in babies. My patients in PTL often say to me, "oh, but the baby probably weighs xyz pounds now, so s/he should be fine, right?" It's a misconception that most of the general public has, unfortunately. Drives me nuts.

[ApplePieBaby]

Kathi, that's terrible. I also had a "friend" tell me that I should take down the photo we have in our living room of DD in her isolette with her feeding tube clearly visible. It was "disturbing." Tough.

My exhusband once said I should take down pictures of our daughter that died at birth because she was dead and it would disturb the other kids- I told him to take down pics of his dead grandparents first

[boscopup]

I hate when people just meet you and guess your childs age.

I haven't had too much of a problem with this, since DS has always been tall - he looks his age, basically, BUT... When we were ordering lunch one day at a mall restaurant, the cashier asked how old DS was. I told him he was 13 months old. The guy asked if he was walking yet. I said no, not yet. The guy then made a big deal about a 13 month old that isn't walking yet, as if my DS was horribly behind in that area!!! Ok, FULL TERM babies sometimes don't walk until 16-18 months of age! There is nothing at all abnormal about a 13 month old not walking. PLUS, the guy didn't know that DS was 10.5 weeks early, so he was really a 10.5 month old, adjusted!

DS started walking at 14 months, so 11.5 months adjusted- RIGHT ON TIME. :p There were full term kids on my due date list that weren't walking until 16 months. I could have slapped that cashier! :irked:

[EastonsMom]

I have never had a premeie so I am out of place here but I just want to say congrats to all you moms out there who were blessed enough to become preg. carry and nuture your children, give birth, in what was I am sure uncomfortable and VERY unplanned fashion, and have to deal with the insensitivity of not just friends but family! All children are miracles but these lil angels but a new meaning to the whole procces! I stand up for all of you! I know it probably doen't mean much coming from an 'outsider', but that is my two cents worth!

[sehbub]

It means a lot, EastonsMom. Outsider or not, you're human. Sometimes that's all the validation I need. :)

[liberal_chick]

I got a "what do you mean he's here for his 12 month check-up? He's 12 months old?" from a new nurse at my ped's office once. I said, "no, he isn't 12 months. He's 12.5." Then the other nurse gave her ds's whole back story and told her how he was right at 5 pounds at his 2 month check-up. It hurt my feelings, but she shut up really quickly about his size once she found out he was a preemie.

[intorainbowz]

Hi ....

I'm new and I'll post my whole story tomorrow. Can I just say AMEN to what has been said before.

My mom is the worst. I had to leave my little one in a carefully selected home day care for the very first time yesterday. She called me and asked how I did. I told her it was very hard. She said that since Sydney is so small, she won't remember this. I said sarcasticly that I have left her since she was born. She said so I'm used to this, implying this is a good thing. This from a woman who had 5 healthy pregnancies, 5 unmedicated labors, 5 babies who went home with her. She was also able to be a SAHM until my baby sister was 14. She knows nothing about this.

Leaving Sydney at the NICU was not a pleasure. It was hell. It was not a break, or a time to get sleep. It was the hardest thing I have ever done.

Yeah, I'm used to this. I hate this. I hate that I used all my leave on bed rest for 2 months. I hate that I was back at work part time 2 weeks after a c/s so I would have some time with my baby when she came home. I hate that I have been her main caregiver for a whole week at once. I have to work until DH graduates. We have to have health insurance.

On an infertility board we use the term WMBI Well Meaning But Ignorant. I think this applies to much of what we experience. This does not mean the comments don't hurt though.

I also want to point out that there are a lot of silly people who ask if my baby is on oxygen, when she has no tubes in her nose. They are seeing her apnea monitor. A monitor which is currently malfunctioning and I am waiting for home health. Then I can sleep.

[Amys1st]

Welcome Wendy! Cant wait to here about your baby! I can relate to the monitor thing too!

[mama2karli]

I still have trouble communicating with my (childless) best friend who asked me how DD was fed, and when I said a tube through her nose, said "gross!"

The comment probably was out of her brain as quickly as it was out of her mouth but I don't think I will ever forget it. In fact typing that makes me feel like crying because I think of all the pics we sent everyone of her with her NG tube in, and how beautiful she looked and, well.... you know. *snuffle*

[crissei]

Hi ....

I'm new and I'll post my whole story tomorrow. Can I just say AMEN to what has been said before.

My mom is the worst. I had to leave my little one in a carefully selected home day care for the very first time yesterday. She called me and asked how I did. I told her it was very hard. She said that since Sydney is so small, she won't remember this. I said sarcasticly that I have left her since she was born. She said so I'm used to this, implying this is a good thing. This from a woman who had 5 healthy pregnancies, 5 unmedicated labors, 5 babies who went home with her. She was also able to be a SAHM until my baby sister was 14. She knows nothing about this.

Leaving Sydney at the NICU was not a pleasure. It was hell. It was not a break, or a time to get sleep. It was the hardest thing I have ever done.

Yeah, I'm used to this. I hate this. I hate that I used all my leave on bed rest for 2 months. I hate that I was back at work part time 2 weeks after a c/s so I would have some time with my baby when she came home. I hate that I have been her main caregiver for a whole week at once. I have to work until DH graduates. We have to have health insurance.

On an infertility board we use the term WMBI Well Meaning But Ignorant. I think this applies to much of what we experience. This does not mean the comments don't hurt though.

I also want to point out that there are a lot of silly people who ask if my baby is on oxygen, when she has no tubes in her nose. They are seeing her apnea monitor. A monitor which is currently malfunctioning and I am waiting for home health. Then I can sleep.

Just wanted to say hi. :)
DS stats. are so similar to your DD. He was born by c-section at 2lbs. 13.8 oz. and in the hospital for 47 days.

[CallMeMommy]

I still have trouble communicating with my (childless) best friend who asked me how DD was fed, and when I said a tube through her nose, said "gross!"

The comment probably was out of her brain as quickly as it was out of her mouth but I don't think I will ever forget it. In fact typing that makes me feel like crying because I think of all the pics we sent everyone of her with her NG tube in, and how beautiful she looked and, well.... you know. *snuffle*

:Hug

[OGirlieMama]

I think of all the pics we sent everyone of her with her NG tube in, and how beautiful she looked and, well.... you know. *snuffle*

I know how you feel. Even after my girls came home, Kate had a nasal cannula for 2 months. I would send pictures out and wonder if people could see past it to her incredibly cuteness, or if they just said "poor sick little baby" every time. No one ever said anything except my stupid next-door neighbor (a nice but tactless guy) who came over and saw them both, and pointed to Lilly (no cannula) and said "Well, this one looks healthy!" and didn't say anything about sweet Katie. :irked:

[sehbub]

I know how you feel. Even after my girls came home, Kate had a nasal cannula for 2 months. I would send pictures out and wonder if people could see past it to her incredibly cuteness, or if they just said "poor sick little baby" every time. No one ever said anything except my stupid next-door neighbor (a nice but tactless guy) who came over and saw them both, and pointed to Lilly (no cannula) and said "Well, this one looks healthy!" and didn't say anything about sweet Katie. :irked:

Ugh. People are charming, aren't they? So sorry, mama.

[plantmama]

It's so great they got this sun forum up. I just noticed it!
I remember feeling sooo sensitive for the first few months. It is partly the hormones I think making the trauma so much worse. And the stress. And the heartbreaking reality of going home to sleep at night while your little baby is up in the nicu with some stranger who talks too loud or is just not nice enough....(most of our nurses were so great, but you know, you're just so sensitive...).
I nearly broke down when on two occasions there were moms nursing their full term babies in the pumping room. I couldn't believe my ears when people talked about how lucky I was to get sleep at night (yeah, except for waking up to pump, that's fun!). I don't even think dads of preemies can fully relate to the agony of having a preemie, because (at least for me) the mamas hormones are telling her all this stuff that she simply can't listen too. I have never experienced such real physical pain.
I would keep a lot to myself even among the other preemie moms, because there were some who had such tiny, sick preemies and they made me feel lucky.
Ds was 30 weeks early and has always been healthy with just typical preemie issues. We were in the nicu for 6 weeks.