[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]

:

 

[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

. 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]

Quote:

Originally Posted by twins10705 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.

 

[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.

"

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!

) 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.

 

[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]

Quote:

Originally Posted by 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 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.

Quote:

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. "

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.

Quote:

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.

:

 

[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.

 

[mama-a-llama]

Quote:

Originally Posted by kondonis 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.