VENT - mothers of full term babies giving advice on preemies - Page 2

[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]

Originally Posted by 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.

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.

[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]

Originally Posted by romans_mum

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]

Originally Posted by Amys1st

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]

Originally Posted by kondonis

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]

Originally Posted by romans_mum

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]

Originally Posted by romans_mum

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]

Originally Posted by sehbub

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]

Originally Posted by romans_mum

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]

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 : 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. 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! : 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. : How many parents take down their childs first "official" photograph - just because they don't look like that anymore....