Miracles and hope

I'm writing this as someone who spent half a day telling hospital
staff who should have known better that there was no hope. I spent
the first half of that day believing their stories.

I am fully aware that people posting to this group with stories of
ultra-preemies who survived and TV programmes they have seen about
mircale babies are trying to be supportive, but I have to say that
having BTDT I did *not* find it supportive and in fact it added to my
pain in a lot of ways. It was hard not to believe and get my hopes
up, when I knew better. It was harder still to have to explain that
no, there would be no miracles with us.

Obviously YMMV but could people please bear this in mind, particularly
in instances like Emily's where there clearly is very little hope.

Hoping I am not speaking out of turn, but this is upsetting me.

Megan

--
Seoras David Montgomery, 7 May 2003, 17 hours: sunrise to sunset (homebirth)

To e-mail use: megan at farr-montgomery dot com

I'm writing this as someone who spent half a day telling hospital
staff who should have known better that there was no hope. I spent
the first half of that day believing their stories.

I am fully aware that people posting to this group with stories of
ultra-preemies who survived and TV programmes they have seen about
mircale babies are trying to be supportive, but I have to say that
having BTDT I did *not* find it supportive and in fact it added to my
pain in a lot of ways. It was hard not to believe and get my hopes
up, when I knew better. It was harder still to have to explain that
no, there would be no miracles with us.

Obviously YMMV but could people please bear this in mind, particularly
in instances like Emily's where there clearly is very little hope.

Hoping I am not speaking out of turn, but this is upsetting me.

Megan
Seoras David Montgomery, 7 May 2003, 17 hours: sunrise to sunset
(homebirth)

You know, I haven't BTDT but I've found all those replies very insensitive.
I think they meant well, offering hope. But I'm quite sure Emily and her
Drs know what the entire situation is and I can't see how those replies help
either.

JMO of course.

Sophie

On Thu, 26 Feb 2004 16:42:46 -0500, "Sophie"
wrote:
but then again I might just have mucked up the snipping as usual!

You know, I haven't BTDT but I've found all those replies very insensitive.
I think they meant well, offering hope. But I'm quite sure Emily and her
Drs know what the entire situation is and I can't see how those replies help
either.

Well, I am relieved I am not out on a limb at least. I know and truly
believe people were trying to be supportive. I also, unfortunately,
know that many people say things that they believe are supportive but
actually are completely the opposite. They'll never know if no one
tells me and I am a mouthy so-and-so and therefore qualified for the
job.

Megan
--
Seoras David Montgomery, 7 May 2003, 17 hours: sunrise to sunset (homebirth)

To e-mail use: megan at farr-montgomery dot com

Buzzy Bee wrote:
On Thu, 26 Feb 2004 16:42:46 -0500, "Sophie"

wrote:
but then again I might just have mucked up the snipping as usual!

You know, I haven't BTDT but I've found all those replies very
insensitive. I think they meant well, offering hope. But I'm
quite sure Emily and her Drs know what the entire situation is and
I can't see how those replies help either.

Well, I am relieved I am not out on a limb at least. I know and
truly believe people were trying to be supportive. I also,
unfortunately,
know that many people say things that they believe are supportive
but actually are completely the opposite. They'll never know if no
one tells me and I am a mouthy so-and-so and therefore qualified
for the job.

I completely agree with you, too, Megan. I don't think you're remotely out
on a limb This stuff is painful enough to deal with without having people
constantly offering you empty hopes instead of what you need, which is
understanding and sympathy. I KNOW people don't mean to be cruel when they
suggest that there's still a chance, but really, under the circumstances, it
*is* a bit cruel and a little condescending. If you're a mouthy so-and-so,
then so am I.
--
Be well, Barbara
(Julian [6], Aurora [4], and Vernon's [23 mos.] mom)

This week's special at the English Language Butcher Shop:
Financing for "5" years -- car dealership sign

Mommy: I call you "baby" because I love you.
Julian (age 4): Oh! All right, Mommy baby.

All opinions expressed in this post are well-reasoned and insightful.
Needless to say, they are not those of my Internet Service Provider, its
other subscribers or lackeys. Anyone who says otherwise is itchin' for a
fight. -- with apologies to Michael Feldman

Buzzy Bee wrote:
I'm writing this as someone who spent half a day telling hospital
staff who should have known better that there was no hope. I spent
the first half of that day believing their stories.
............................
Hoping I am not speaking out of turn, but this is upsetting me.


No Megan, you're not speaking out of turn at all. I wanted to post
something similar but was unsure of how to go about it since I have not
BTDT. I simply cannot imagine how painful this is for everyone on this
list that has been in a similar situation and especially for Emily, who is
in the midst of it. :-(

--
Nikki
Mama to Hunter (4) and Luke (2)

Sophie wrote:

[...]
I am fully aware that people posting to this group with stories of
ultra-preemies who survived and TV programmes they have seen about
mircale babies are trying to be supportive, but I have to say that
having BTDT I did *not* find it supportive and in fact it added to my
pain in a lot of ways. It was hard not to believe and get my hopes
up, when I knew better. It was harder still to have to explain that
no, there would be no miracles with us.

Obviously YMMV but could people please bear this in mind, particularly
in instances like Emily's where there clearly is very little hope.

Hoping I am not speaking out of turn, but this is upsetting me.

Megan
Seoras David Montgomery, 7 May 2003, 17 hours: sunrise to sunset
(homebirth)

I agree... I know people mean well, but it's unimaginable
to be in that situation. Hugs and support go a long way.
When we were told that Pillbug had a brain disorder and
they were suggesting termination, I did thousands of
Google searches and found some sites that stated, "my
baby was diagnosed with X, but it turned out to be a
misdiagnosis, so you shouldn't worry, because yours
may be, too". As it turned out, ours was indeed a
misdiagnosis, but I cannot describe how painful it was
to read that site and to tell yourself that you should
not get your hopes up, but how could you not, because
this is your baby, the embodiment of all your dreams,
but how could you, because you have to be prepared
to say goodbye... It is a horrible two-edged sword to
be given. All you can do is to do the best research you
can, get all the tests you can stand to get, talk to the
experts, then decide on your course of action. The
"but miracles can happen" stuff makes it worse...

-- Anita --

"Buzzy Bee" wrote in message
...

I am fully aware that people posting to this group with stories of
ultra-preemies who survived and TV programmes they have seen about
mircale babies are trying to be supportive, but I have to say that
having BTDT I did *not* find it supportive and in fact it added to my
pain in a lot of ways. It was hard not to believe and get my hopes
up, when I knew better. It was harder still to have to explain that
no, there would be no miracles with us.

Obviously YMMV but could people please bear this in mind, particularly
in instances like Emily's where there clearly is very little hope.

Hoping I am not speaking out of turn, but this is upsetting me.

Another "me too" post, Buzzy Bee. I have stayed out of that thread
deliberately because I didn't feel it was appropriate to chime in. I have
severely handicapped cousins, and I wouldn't have any idea what to say to
someone facing that kind of choice.

Donna

I'm writing this as someone who spent half a day telling hospital
staff who should have known better that there was no hope. I spent
the first half of that day believing their stories.

I am fully aware that people posting to this group with stories of
ultra-preemies who survived and TV programmes they have seen about
mircale babies are trying to be supportive, but I have to say that
having BTDT I did *not* find it supportive and in fact it added to my
pain in a lot of ways. It was hard not to believe and get my hopes
up, when I knew better. It was harder still to have to explain that
no, there would be no miracles with us.

Obviously YMMV but could people please bear this in mind, particularly
in instances like Emily's where there clearly is very little hope.

Hoping I am not speaking out of turn, but this is upsetting me.

I see that alot of those messages came from mine, I'm really sorry that it
started all that, especially to Emily, I was just following up on Jody's
post incase she wanted the information.

I will say though, to people telling me that I pretty much know nothing.
Even though this is my first child I worked in SCN and NICU (even though I'm
in graphic design now, i still work there part time) and have seen these
types of babies over and over again, hence why I gave the information. Like
Jody (i think) said, not everything ends in tragedy. But I can see why alot
of people find it easier to think that way.

So once again, to Emily, I'm very very very sorry that that part of the
thread started.

Leanne

"Donna" wrote in message
...

"Buzzy Bee" wrote in message
...

I am fully aware that people posting to this group with stories of
ultra-preemies who survived and TV programmes they have seen about
mircale babies are trying to be supportive, but I have to say that
having BTDT I did *not* find it supportive and in fact it added to my
pain in a lot of ways. It was hard not to believe and get my hopes
up, when I knew better. It was harder still to have to explain that
no, there would be no miracles with us.

Obviously YMMV but could people please bear this in mind, particularly
in instances like Emily's where there clearly is very little hope.

Hoping I am not speaking out of turn, but this is upsetting me.

Another "me too" post, Buzzy Bee. I have stayed out of that thread
deliberately because I didn't feel it was appropriate to chime in. I have
severely handicapped cousins, and I wouldn't have any idea what to say to
someone facing that kind of choice.

Donna



Same here. My own daughter was born almost term with the same amniotic
fluid problems Emily is facing now. I wouldn't wish my daughter's problems
on anybody and I can't imagine they would be anything but magnified if she
had been born 14 weeks earlier.

Denise

"Buzzy Bee" wrote in message
...
I'm writing this as someone who spent half a day telling hospital
staff who should have known better that there was no hope. I spent
the first half of that day believing their stories.

I am fully aware that people posting to this group with stories of
ultra-preemies who survived and TV programmes they have seen about
mircale babies are trying to be supportive, but I have to say that
having BTDT I did *not* find it supportive and in fact it added to my
pain in a lot of ways. It was hard not to believe and get my hopes
up, when I knew better. It was harder still to have to explain that
no, there would be no miracles with us.

Obviously YMMV but could people please bear this in mind, particularly
in instances like Emily's where there clearly is very little hope.

Hoping I am not speaking out of turn, but this is upsetting me.

Megan

--
Seoras David Montgomery, 7 May 2003, 17 hours: sunrise to sunset
(homebirth)

To e-mail use: megan at farr-montgomery dot com

I agree with you. I was a bit ****ed off reading the messages about Emily's
little one, it's the last thing she needs. False hope is damaging and the
doctors in this situtaion will have considered the possiblity of the baby
surviving and obviously they know what they are talking about.

Just because babies can be "saved" at 22 weeks doesn't mean that Emily's can
or that he/she necessarily should be. She really doesn't need this pressure
and I applaud you for speaking out.

Judy