How do you respond to this?

[buckysprplmonkey]

OK, so how do you respond to people who ask you where the baby is? Alot of people know that our son was born and that he was born 12 weeks early only 3 weeks ago. Yet I've now had one person ask me at church where the baby was and another just emailed me to see if I was bringing him to bible study with me tomorrow. REALLY? Are people this clueless that they'd think my three month premature baby would be out and about with me already? How do you even respond to this? I'm trying really hard not to just burst out in tears at them or say something really snarky and sarcastic. I really want to go back to my weekly Bible Study that starts up for the fall tomorrow, but I don't know how to deal with that question without falling apart.

[OGirlieMama]

to you mama. It's so hard to have your baby in the NICU, and I give you credit for even being able to carry on any of your normal activities. I would just answer very simply, "he was born 12 weeks early - he will be in the hospital for a while. I'll let you know when he's home and when we're ready for visitors" (because those will probably be different timelines. ) I can't help you on how to answer without falling apart, other than that you'll get better at it as time passes. I'm sure people (particularly those at church) don't mean to be insensitive - they may not have heard all the details or done the math.

[liberal_chick]

I find that many, many people are absolutely clueless about what it means to have a premature baby. It seems like lots think premature=small.

I agree with PP as far as what to say to them. That's nicer than anything I'd come up with.

[Le Bec]

We had the same thing. Erin wasn't even breathing for herself and people wanted to know if she was home. I think I was mainly just stunned when people would ask me that so I just blurted whatever came to mind.

Like OGirlieMama said, I don't think people intend to be insensitive I just think that the media portrays prematurity as being something so simple to over come. People don't understand because they're not given the opportunity to unless they've been there.

I hope your little one is home with you soon.

[Amys1st]

Oh I feel your pain Mama!! Reading your post brought back some ugly memories. Never in my life have I found people who it seemed had shoes made of chocolate judging from how many times they put their foot in their mouth.

But in their defense, as I see now 2 plus years later, its really hard to respond to this and unless you have BTDT as we have, its pretty hard to respond.

Some of the things said to me or done:

How can you be out? If that was me, I would be at the hospital 24/7.
(I got this IRL and at MDC)
-Sure I am sure my older child would love to never see me and I still have my life to lead and you learn to literally go into Automatic pilot.

This is so awful. Or let me send you a SYMPATHY card!@!! (WTF??)

I had a beautiful baby and had some complications. We have a long road, but we still want to have pink or blue things sent, gifts etc like you would have done in June instead of Feb.

I have more but PM me if you need to vent or talk!

[venustx]

Originally Posted by liberal_chick

I find that many, many people are absolutely clueless about what it means to have a premature baby. It seems like lots think premature=small.

I agree with this, and with OGirlieMama's suggestion on how to respond to them! People don't seem to understand that preemies need to stay in the hospital for a while, and from what I've learned recently, they also don't understand that they still need special considerations (extra hand washing, no perfume, etc.) once they come home.

Incidentally, I love your boy's name. I have a little Levi who turned 4 weeks old yesterday!

[Emmeline II]

Originally Posted by buckysprplmonkey

I really want to go back to my weekly Bible Study that starts up for the fall tomorrow, but I don't know how to deal with that question without falling apart.

Maybe you could tell the study leader and he/she could relate it to the group and you show up a couple minutes late?

[Amys1st]

Originally Posted by Le Bec

I don't think people intend to be insensitive I just think that the media portrays prematurity as being something so simple to over come. People don't understand because they're not given the opportunity to unless they've been there.

.

I have to agree. Also, in our area the NICU Maggie was at has the world record for the smallest babies born and to survive. One is an 18 yr old girl who is doing great and the other is about a year older than Maggie who holds the record. She is doing as well as can be expected.

One issue I have is people hear Maggie was 1 lb 12 oz and see this normal healthy girl running around they say- WOW look at advancements we have! Not hey this was an emotional rollar coaster and there is a better chance of her NOT being like this. I have also heard people I know who are friends and family underplay the premature condition to other parents in this NICU situation because- hey look at Maggie! She was a micro preemie and shes fine, no worries!

And then when we describe our fears about her future (remember not many former micropreemie adults right now!) and her future health, our hope she dosnt develop asthma, what do we tell her when she is older etc people downplay that- oh shes fine.

All I can think of is feeling terrible when yet another couple tell us about their neighbor, SIL, friends etc and how the Mom is on bedrest at 25 weeks. One of them will say, hey I told them about MAggie and how everything will be ok.... DH Bob almost goes white when that happens.

[Le Bec]

YES! My mum does that all the time! I've lost count of the times I've told her that Erin is the exception.

On topic though - talking to the group leader sounds like a great idea!

[PE&M]

I completely understand your situation. My dd was born 13 weeks early and was in the nicu over 2 months. I couldn't deal with all the questions and phone calls, so I started a blog. I emailed the link to the blog to all of my family & friends, and whenever someone asked about her I gave them the blog address. This way, it gave me one opportunity each day or so, to collect my thoughts and feelings and update those who cared so much. It's true, many do think premature means small. I used my blog also to educate those who didn't know differently.

[buckysprplmonkey]

Originally Posted by Emmeline II

Maybe you could tell the study leader and he/she could relate it to the group and you show up a couple minutes late?

Unfortunately, my small group leader is the one who emailed and asked about it.

I wound up not responding directly to her email, but emailing the entire group (so as not to "call out" anyone). I just said that I might or might not be there over the next couple weeks while Levi's still in intensive care and gave an update of how he's doing. I asked them to make sure that we are on the prayer list the weeks I'm not there since he's got a way to go and I'm still pretty beat up from two surgeries and two months of bedrest over the summer. I also included some pictures of the baby (that included all his tubes and wires) and a link to the journal where we update on his status (which I know that they all have, but whatever, lol).

Then I went anyway and hung out with people who I know have had preemies and my friend who recently lost her DH and knows all about stupid questions. I did ok and didn't lose it at all.

Thanks everyone for the support. I needed it.

[buckysprplmonkey]

I have also heard people I know who are friends and family underplay the premature condition to other parents in this NICU situation because- hey look at Maggie! She was a micro preemie and shes fine, no worries!

Yeah, I heard alot of that when I was on bedrest this time around. We've made it a point to tell everyone in no certain terms that Levi is a miracle. They couldn't believe he lived to the first ultrasound, let alone that he's beating all the odds so smashingly now as a 28weeker in the ICN and has both hands and 10 fingers! We're actually hoping that they'll let us give a testimony of his story at church when we have him dedicated. We go to a large church and not only will it be nice to share with everyone the miracle that Levi really is, but maybe it'll educate a few people about amniotic band syndreme and about prematurity.

[skylarsmama]

Originally Posted by PE&M

I completely understand your situation. My dd was born 13 weeks early and was in the nicu over 2 months. I couldn't deal with all the questions and phone calls, so I started a blog. I emailed the link to the blog to all of my family & friends, and whenever someone asked about her I gave them the blog address. This way, it gave me one opportunity each day or so, to collect my thoughts and feelings and update those who cared so much. It's true, many do think premature means small. I used my blog also to educate those who didn't know differently.

That's what we did also. It didn't stop all of the phone calls but it did greatly reduce a lot of repetitive questions.

[OGirlieMama]

Originally Posted by buckysprplmonkey

Unfortunately, my small group leader is the one who emailed and asked about it.

I wound up not responding directly to her email, but emailing the entire group (so as not to "call out" anyone). I just said that I might or might not be there over the next couple weeks while Levi's still in intensive care and gave an update of how he's doing. I asked them to make sure that we are on the prayer list the weeks I'm not there since he's got a way to go and I'm still pretty beat up from two surgeries and two months of bedrest over the summer. I also included some pictures of the baby (that included all his tubes and wires) and a link to the journal where we update on his status (which I know that they all have, but whatever, lol).

Then I went anyway and hung out with people who I know have had preemies and my friend who recently lost her DH and knows all about stupid questions. I did ok and didn't lose it at all.

Thanks everyone for the support. I needed it.

It sounds like you handled it really well. I am wishing you all strength and good health for Levi.

[felix23]

Originally Posted by Amys1st

I have to agree. Also, in our area the NICU Maggie was at has the world record for the smallest babies born and to survive. One is an 18 yr old girl who is doing great and the other is about a year older than Maggie who holds the record. She is doing as well as can be expected.

One issue I have is people hear Maggie was 1 lb 12 oz and see this normal healthy girl running around they say- WOW look at advancements we have! Not hey this was an emotional rollar coaster and there is a better chance of her NOT being like this. I have also heard people I know who are friends and family underplay the premature condition to other parents in this NICU situation because- hey look at Maggie! She was a micro preemie and shes fine, no worries!

And then when we describe our fears about her future (remember not many former micropreemie adults right now!) and her future health, our hope she dosnt develop asthma, what do we tell her when she is older etc people downplay that- oh shes fine.

All I can think of is feeling terrible when yet another couple tell us about their neighbor, SIL, friends etc and how the Mom is on bedrest at 25 weeks. One of them will say, hey I told them about MAggie and how everything will be ok.... DH Bob almost goes white when that happens.

We had this same problem when one of my cousin's had a son at 33 weeks. He was almost 4 lbs, but on top of being premature, he also had heart problems. Relatives kept telling her "Look at Lilly, she was so small and now she's fine, so your baby is going to do great." I kept trying to explain how Lilly was not the norm and how she didn't have all the problems that he had. But people just couldn't grasp the fact that just because Lilly did well that not every premature baby would do well. Sadly little Evan didn't make it, he was just too weak. I think the problem is that people hear only the amazing stories of tiny babies that do fine, but they never hear the one's where there isn't a happy ending.

[angie7]

Knowing me and how much stress that you deal with when your baby is in the NICU, my response would have probably been:

"he/she is still in the NICU, moron"

[CorbinsMama]

Originally Posted by Amys1st

Some of the things said to me or done:

How can you be out? If that was me, I would be at the hospital 24/7.
(I got this IRL and at MDC)

My closest friend said this to me and nearly ended our friendship because I:

- got up at 6 am, took DS to school (20 minutes away), went to the NICU (an hour away) for a few hours, picked DS up at school (an hour back), and then went home

- cooked dinner, checked on DD by phone

- somehow managed laundry, grocery shopping, bill paying, sending email updates to everyone

- slept somehow

DH was working 12 hour days, but still helped so much with shopping, making DS's lunches, and supporting me. She's his DD too and he did all this, plus only got to see her on the weekends.

My friend never offered to pick DS up from school so I could be at the NICU longer, never brought us a meal, nothing. She just stopped calling me and when I confronted her, that's what she told me: Because she would be at the NICU 24/7 and I wasn't. (Her parents live with her and her DH is a teacher who gets out of work at 3:30. She had three people who could have helped her and brought her older DD to the hospital to spend time with her.)

Sorry for that tangent! More than a year later it still hurts. Anyway, yes, people who haven't been there do not get it at all. My own mother kept asking when they were going to take DD to the hospital photo place to have her photo on the online hospital nursery so she could show her friends. It didn't matter how many times I told her that she could die if they moved her. (Yeah, she's another story.)

Everyone around me knew where DD was (all the parents at school, DH's co-workers, etc.) so no one asked where she was or wondered when I was bringing her out, but once I did take her out, I got lots of questions from total strangers about why she was so tiny, people tried to guess her age (like guessing she was 2 weeks old when she was 3 months), and things like that.

FTR, DD was a full term baby, but weighed 4 pounds 14 ounces. Lack of oxygen, aspirated meconium, had seizures, and was in the NICU for a month.

[crazyrunningmama]

Originally Posted by buckysprplmonkey

Thanks everyone for the support. I needed it.

: You need those, too. (my baby was in NICU and of course, it was all about her, little support for me, that's what I'm thinking of) Congratulations on becoming a mama! People will likely continue to say stupid/uninformed/inconsiterate things. I hope you find the support you need.
Take care.