This story generated a lot of posts on my listserve for parents of
preemies. Much of the concern centered around the statement made by
the neonatologist who cared for Amilia that the medical complications
she experienced were not expected to cause any long term problems.
The sentiment of our group was that it was MUCH too soon for anyone
to know what long term effects this child will have from her extreme
prematurity. This was even more evident by the fact that she very
well may be the earliest preemie to survive and therefore there are
no other children of her gestational age to compare her to.  There
was also concern expressed that the "happy ending" spin could very
well serve to discount the struggles that many of our preemies face.
Of course, we also don't know how much of this happy ending spin was
just that - media spin. Since the story first aired, it does seem to
have changed some to acknowledge that it remains to be seen how
things turn out for her. We all hope for the best for Amilia, but for
those of us whose preemies struggle with various issues, some visible
and some not so visible, an acknowledgement of their struggles seems
in order.

Just my .02.

Robin

--- In Parents_As_Partners@yahoogroups.com, "Lisa Richards"
<lisa.a.richards@...> wrote:
>
> Hello Everyone,
>
> I was reading the news today and saw this story:
>
>
> Baby, among tiniest to survive, leaving hospital
>
> A premature baby that doctors say spent less time in the womb than
any other surviving infant is to be released from a Florida hospital
on Feb. 20.
>
> http://www.msnbc.msn.com/id/17237979/from/ET/
>

To those of you who who asked me on Friday evening about pictures of my
little darlings...  I have posted several recent photos of them in the
Photos section of the Parents As Partners Yahoo web Site.

If you can't find them that way, and stll want to see them, email me
and I will send them out to you directly.

The girls are all doing very well.

Lisa

----- Original Message -----

From: Lisa Richards

To: Parents_As_Partners@yahoogroups.com

Sent: Wednesday, November 08, 2006 10:17 AM

Subject: [Parents_As_Partners] Meeting, November 18, St. Margaret's Building- All Welcome

Hi Everyone...

The meeting on November 4th, ran very smoothly and we accomplished quite a bit.  But we still need your help. 

 

There is another meeting on November 18th.  10 am at St. Margaret's Building of St. Elizabeth's Medical Center, Conference Room 4. 

 

On a side note, you should be receiving a package of 10 letters and 10 self-paid envelopes to help garner donations for the Fundraiser.  All you need to do is read them, maybe add a personal note, and send them out.  This is for a VERY worthy cause, as we all know from our miracle babies. 

 

Hope to see you all on the 18th.

 

Lisa Richards

Hello Christine-
    I am so happy that you are able to join us! We are meeting in the St
Margarets building in conference room 4. So when you walk into the St Marg
building you are going to go down the hall and the conference rooms are on
the right. Let me know if you have any questions. See you Saturday!

Thanks
Sue

----- Original Message -----

From: Christine Miller

To: Parents_As_Partners@yahoogroups.com

Sent: Sunday, October 29, 2006 7:36 PM

Subject: Re: [Parents_As_Partners] Members' Help is Requested

My name is Christine and I am a member of parents as partners.  My daughter spent 3 1/2 months in the NICU, being born at 25 weeks last year.  I would like to attend the meeting on November 4.  Please let me know where in the hospital the meeting will be.  I am willing to offer my help in any way that I can.  Thank you.

Lisa <lisa.a.richards@comcast.net> wrote:

This is forwarded from Joanne Cornetta. Please consider helping us
at the R.E.A.C.H. Program.

Hi all, my name is Joanne Cornetta and I am a mom to quadruplets
that were born at 26 weeks 2 days at St. Elizabeth's. Being on bed
rest for 6 weeks and the 4 months in the NICU, I had a lot of long
days and long nights that we can all probably relate to. At the
time I vowed that once my kids got older I would come back and help
out where I could. I think R.E.A.C.H. is my calling. I am reaching
out to you as fellow parents who believe in the R.E.A.C.H. Program.

On Saturday, November 4th, at 10:00 am we will be having a meeting
at St. Elizabeths. At this meeting we will be discussing the status
of our fund raising progress for our Gala Event in February. We
have a great team we are working with right now, but could always
use another set of hands. If you feel you can donate an hour or two
that would be great.

Also, we will be sending out an envelope packet. In this packet
there will be 10 letters/10 envelopes and 10 return envelopes all
postage pre-paid. All we ask is that you send it to "10" people you
know! This could be your family, pediatrician, ob, President of the
large corporation, your next door neighbor, anyone you can think of
that would support R.E.A.C.H.

I hope you will consider this request. If you have any questions,
please feel free to contact me at j.cornetta@reachfoundation.net.

Thank you for your support.

---

We have the perfect Group for you. Check out the handy changes to Yahoo! Groups.

This is forwarded from Joanne Cornetta. Please consider helping us
at the R.E.A.C.H. Program.

Hi all, my name is Joanne Cornetta and I am a mom to quadruplets
that were born at 26 weeks 2 days at St. Elizabeth's. Being on bed
rest for 6 weeks and the 4 months in the NICU, I had a lot of long
days and long nights that we can all probably relate to. At the
time I vowed that once my kids got older I would come back and help
out where I could. I think R.E.A.C.H. is my calling. I am reaching
out to you as fellow parents who believe in the R.E.A.C.H. Program.

On Saturday, November 4th, at 10:00 am we will be having a meeting
at St. Elizabeths. At this meeting we will be discussing the status
of our fund raising progress for our Gala Event in February. We
have a great team we are working with right now, but could always
use another set of hands. If you feel you can donate an hour or two
that would be great.

Also, we will be sending out an envelope packet. In this packet
there will be 10 letters/10 envelopes and 10 return envelopes all
postage pre-paid. All we ask is that you send it to "10" people you
know! This could be your family, pediatrician, ob, President of the
large corporation, your next door neighbor, anyone you can think of
that would support R.E.A.C.H.

I hope you will consider this request. If you have any questions,
please feel free to contact me at j.cornetta@reachfoundation.net.

Thank you for your support.

This is forwarded from Joanne Cornetta.  Please consider helping us
at the R.E.A.C.H. Program.

Hi all, my name is Joanne Cornetta and I am a mom to quadruplets
that were born at 26 weeks 2 days at St. Elizabeth's.  Being on bed
rest for 6 weeks and the 4 months in the NICU, I had a lot of long
days and long nights that we can all probably relate to.  At the
time I vowed that once my kids got older I would come back and help
out where I could.  I think R.E.A.C.H. is my calling.  I am reaching
out to you as fellow parents who believe in the R.E.A.C.H. Program.

On Saturday, November 4th, at 10:00 am we will be having a meeting
at St. Elizabeths. At this meeting we will be discussing the status
of our fund raising progress for our Gala Event in February.  We
have a great team we are working with right now, but could always
use another set of hands.  If you feel you can donate an hour or two
that would be great.

Also, we will be sending out an envelope packet.  In this packet
there will be 10 letters/10 envelopes and 10 return envelopes all
postage pre-paid.  All we ask is that you send it to "10" people you
know!  This could be your family, pediatrician, ob, President of the
large corporation, your next door neighbor, anyone you can think of
that would support R.E.A.C.H.

I hope you will consider this request.  If you have any questions,
please feel free to contact me at j.cornetta@....

Thank you for your support.

Hi everyone,  I would like to introduce myself.  My name is Joanne
Cornetta and I recently joined this group.  I delivered quadruplets 2
(b), 2(g) at 26wk 2d in May 2001. My children are 5 now and growing and
developing fine.  I also have three other children 9, 27 and 31 and a
grandmother to 1. I work full time at a large Boston Law Firm and take
care of my family.  I recently joined the Fundraising efforts at the
Hospital and hope I will be able to make a difference.

hi everyone...
  coming up on september 20th itll be one year since my son Xander
passed away.. i took the day off from work and it so happens i have the
following day off too.. im going to go to the cemetary and visit... i
still havent come to the closure i so long for and want.  i miss him
like crazy and want him here with me soo bad.. Xander was 7 months and
15 days when he passed.. i just now i just regret not goign to see him
as often as i could.. i wish i would have spent every waking moment
with him.. i just feel like im not even a mother anymore.. and i miss
that feeling of being a mother soo much.. i know he knew when i was
there.. he did soo much better and they could turn down his oxygen when
i was there.. i just am getting to the point where im starting to
forget things and thats what i hate the most.. does anyone know
anything i can do to help? i did see a counselor for a while and that
helped but not all the way.. i just feel like everything is closing in
on me.. i just got out of a relationship as well with a great guy.. but
i made the mistake and took him and our relationship for granted... and
now theres nothing i can do to fix it... my main problem was i got in
the relationship soon after Xander passed and i was in denial for a
good couple of months. then it started to hit me and i got more and
more depressed.. i forget what it was like to jsut fall asleep it seems
like every night i cry myself to sleep

if anyones been in a situation where you lost a baby please let me know
things i can do to help the pain'?

thanks for your time and god bless all of you and your little miracles


Stephanie Broadhurst  angleyez40@...

-----Original Message-----
From: Parents_As_Partners@yahoogroups.com [mailto:Parents_As_Partners@yahoogroups.com]On Behalf Of Christine Miller
Sent: Tuesday, July 25, 2006 7:52 PM
To: Parents_As_Partners@yahoogroups.com
Subject: [Parents_As_Partners] synergis shots

Hello to all members.  My name is Christine and my daughter, Audrey, was born on April 24, 2005 at 25 weeks.  She spent 97 days in the NICU and is doing incredibly well.  She was only on the ventilator for 10 days and is just about walking.  (Her corrected date of birth is August 6.)  She received the synergis shots last year without any problem however, at her 15 month check up her pediatrician indicated that she would probably be denied since she is healthy.  I know I should be happy that she is healthy, has had no respiratory issues or chronic lung disease but I feel that she should be entitled to the shot for at least one more year to be on the safe side.  

 

Is there anyone out there who has run into this problem who could offer some suggestions or advice on how to proceed with the insurance company to get the approval for the shots?  My pediatrician is going to try to get her approved but he is not very encouraging. 

 

Thanks.

---

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----- Original Message -----

From: Christine Miller

To: Parents_As_Partners@yahoogroups.com

Sent: Tuesday, July 25, 2006 7:51 PM

Subject: [Parents_As_Partners] synergis shots

Hello to all members.  My name is Christine and my daughter, Audrey, was born on April 24, 2005 at 25 weeks.  She spent 97 days in the NICU and is doing incredibly well.  She was only on the ventilator for 10 days and is just about walking.  (Her corrected date of birth is August 6.)  She received the synergis shots last year without any problem however, at her 15 month check up her pediatrician indicated that she would probably be denied since she is healthy.  I know I should be happy that she is healthy, has had no respiratory issues or chronic lung disease but I feel that she should be entitled to the shot for at least one more year to be on the safe side.  

 

Is there anyone out there who has run into this problem who could offer some suggestions or advice on how to proceed with the insurance company to get the approval for the shots?  My pediatrician is going to try to get her approved but he is not very encouraging. 

 

Thanks.

---

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Hi - I just finished reading a very interesting book called Baby ER by
Edward Hume. It's about life in the NICU of a Hospital in Long Beach
California. I recommend it to those of you who may be ready to read
about this subject.

Robin

Hi - I just finished reading a very interesting book called Baby ER by
Edward Hume. It's about life in the NICU of a Hospital in Long Beach
California. I recommend it to those of you who may be ready to read
about this subject.

Robin

----- Original Message -----

From: Yahoo! Groups Notification

To: Parents_As_Partners-owner@yahoogroups.com

Sent: Tuesday, July 04, 2006 8:11 PM

Subject: APPROVE -- alm25wk <alm25wk@...> wants to join Parents_As_Partners

Comment from user:
My name is Christine and my daughter Audrey was born on 4/24/2005 at St.
E's NICU at 25 wks due to PROM. She spent 97 days in the NICU. I would
like to join this group.
 

This membership request requires your approval because the
Parents_As_Partners group is restricted, which means you must
approve each new member.

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Welcome Stephanie,

I am so sorry to hear about the loss of your son.  I too have an Angel
who passed on in 2001, and I still miss her every day.

Please tell us how we can help you.

Lisa Richards
SAHM to Julia (27 wks, now 3)
Patricia and Catherine (33 wks, 2 wks old)
Mary (22wks)
____________________________________________________________________
Comment from user:
Hi my name is Stephanie Broadhurst. I had a son in St Elizabeths Nicu.
He has since passed away. I wish to join this group thanks

Hello All,

Okay, so our twin daughters are 16 months old and we are getting ready to
buy a real family-sized car with room for our growing family.  We currently
have a 1998 Pontiac Grand Prix GT 4-door sedan and it has about 88K miles on
it and is in the shop AGAIN for repairs (AC doesn't work AND the back
windows don't work).  As you can imagine we are on a tight budget with twins
but need to think about our safety/comfort too.  Anyone bought a used
vehicle?  What should we look out/ask for (warranties, etc.)?  I had such a
horrible experience buying my last car that I said I would never do it
again, but here I am, back in the game!  Your thoughts on the good, the bad,
and the ugly in the whole family car experience are greatly appreciated.  I
am just wondering what my options are at this point.

Tracy A. Bessette
mom to Charlotte & Grace 2/1/05
--
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Checked by AVG Free Edition.
Version: 7.1.394 / Virus Database: 268.9.2/370 - Release Date: 6/20/2006

Hi All - There is some virus being sent around through yahoo groups
with a subject line that reads _New Graphic Site. In fact, I see that
it just sent one to this group from my email address. Rest assured,
this is NOT something that I sent and you should NOT OPEN THE
ATTACHMENT.

Robin

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Hello,

A message has been sent to the parsmahfel group from

   hamed_ars@...

The message summary:
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FROM: hamed_ars@...
DATE: Sat, 10 Jun 2006 21:54:11 -0700 (PDT)
SUBJECT: New Graphic Site

Note: forwarded message attached.
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Hi Everybody,

   My name is Tracy Aziz and I am a new member. In April my husband and
I became proud parents of Ayva ( she was born at 24 weeks). We are at
the important stage of looking for a pediatrician and were wondering
if anyone was near our area and had any referels? We are looking for
the area of Methuena, Ma. We have quit a few questions in mind to ask,
but we would greatly appreciate it if anyone else had any key
questions that we might have missed. please feel free to e-mail us at
any time at rtaziz2003@... .

thank You

Tracy

----- Original Message -----

From: tracy aziz

To: Parents_As_Partners@yahoogroups.com

Sent: Tuesday, May 30, 2006 8:48 AM

Subject: Re: [Parents_As_Partners] Re: Welcome New Member, Tracy!

Hi Lisa

 

   I am looking for a pediatrician in the Methuen are (I'm from Salisbury), Weston will be a little hike for us but thank you for the recommendation. I have a list of questions to interview with, but I was wondering if you had any that I might have missed? Thank You

Tracy

Lisa Richards <larichards@...> wrote:

I am very glad that Ayva has had a great 3 weeks.  The NICU is a rollercoaster ride, but when the highs come, they are unbelievable!!

 

Most members are from Massachusetts, but there are some from NH, and one in VA.  What area are you looking for a pediatrician in?  Ours has extensive experience in Preemies and he is in Weston, on Rte 30 at the junction of the MA Pike.  Dr. Michael Zackin is his name and I highly recommend him.    In fact he will also be caring for our twin daughters (due in 6 weeks).  His telephone number is 781-736-0040. 

Lisa

 

----- Original Message -----

From: tracy aziz

To: Lisa Richards

Sent: Friday, May 26, 2006 1:55 PM

Subject: Re: Welcome New Member, Rtaziz!

 

 

Hi Lisa,

 

Thank you so much for your e-mail. Ayva was born April 6 of this year, and she is doing really well. We has a few scares at the beginning but she has ahd 3 great weeks. Is everyone in the group from Mass.?  Soon my husband and I will have to start interviewing pediatricians and I was wondering if anyone could help with questions to ask the  doctor? I would really appreciate it.

 

Thank You

 

Tracy

Lisa Richards <larichards@...> wrote:

**********************************************************

My husband and I are parents to a 24 weeker Ayva.We would like to
join
in hopes that other parents of preemies can answer some of our
questions and in hopes we can help other parents as well.

***********************************************************

Welcome,

Congratulations on your darling daughter, Ayva. What a beautiful
name!! When was she born, and how is she doing now??

I am a parent to a 27 weeker, Julia, who is now 3 1/2 years old.
Feel free to toss any questions you have at the group. I am sure
that one of us can answer it, if not, we will find you someone who
can!

Lisa Richards
Moderator
Mom to Julia
expecting twin girls 7-06

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I am very glad that Ayva has had a great 3 weeks.  The NICU is a rollercoaster ride, but when the highs come, they are unbelievable!!

 

Most members are from Massachusetts, but there are some from NH, and one in VA.  What area are you looking for a pediatrician in?  Ours has extensive experience in Preemies and he is in Weston, on Rte 30 at the junction of the MA Pike.  Dr. Michael Zackin is his name and I highly recommend him.    In fact he will also be caring for our twin daughters (due in 6 weeks).  His telephone number is 781-736-0040. 

Lisa

 

----- Original Message -----

From: tracy aziz

To: Lisa Richards

Sent: Friday, May 26, 2006 1:55 PM

Subject: Re: Welcome New Member, Rtaziz!

 

 

Hi Lisa,

 

Thank you so much for your e-mail. Ayva was born April 6 of this year, and she is doing really well. We has a few scares at the beginning but she has ahd 3 great weeks. Is everyone in the group from Mass.?  Soon my husband and I will have to start interviewing pediatricians and I was wondering if anyone could help with questions to ask the  doctor? I would really appreciate it.

 

Thank You

 

Tracy

Lisa Richards <larichards@...> wrote:

**********************************************************

My husband and I are parents to a 24 weeker Ayva.We would like to
join
in hopes that other parents of preemies can answer some of our
questions and in hopes we can help other parents as well.

***********************************************************

Welcome,

Congratulations on your darling daughter, Ayva. What a beautiful
name!! When was she born, and how is she doing now??

I am a parent to a 27 weeker, Julia, who is now 3 1/2 years old.
Feel free to toss any questions you have at the group. I am sure
that one of us can answer it, if not, we will find you someone who
can!

Lisa Richards
Moderator
Mom to Julia
expecting twin girls 7-06

---

Be a chatter box. Enjoy free PC-to-PC calls with Yahoo! Messenger with Voice.

----- Original Message -----

From: tracy aziz

To: Lisa Richards

Sent: Friday, May 26, 2006 1:55 PM

Subject: Re: Welcome New Member, Rtaziz!

 

 

Hi Lisa,

 

Thank you so much for your e-mail. Ayva was born April 6 of this year, and she is doing really well. We has a few scares at the beginning but she has ahd 3 great weeks. Is everyone in the group from Mass.?  Soon my husband and I will have to start interviewing pediatricians and I was wondering if anyone could help with questions to ask the  doctor? I would really appreciate it.

 

Thank You

 

Tracy

Lisa Richards <larichards@...> wrote:

**********************************************************

My husband and I are parents to a 24 weeker Ayva.We would like to
join
in hopes that other parents of preemies can answer some of our
questions and in hopes we can help other parents as well.

***********************************************************

Welcome,

Congratulations on your darling daughter, Ayva. What a beautiful
name!! When was she born, and how is she doing now??

I am a parent to a 27 weeker, Julia, who is now 3 1/2 years old.
Feel free to toss any questions you have at the group. I am sure
that one of us can answer it, if not, we will find you someone who
can!

Lisa Richards
Moderator
Mom to Julia
expecting twin girls 7-06

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Does anyone have (2) of these chairs they are willing to part with?  Please
let me know.  Thanks!


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Hi,

Anyone willing to part with their Step 2 Caterpillar Swing (2 seater...they
don't make it anymore)?  How much?  Please let me know.  Thanks! :o)

Tracy

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Robin,

 

This is fantastic, thanks!  I believe we can link to the stores like the Preemie Store, PreemiesRus, etc., with no legal interference.  It would be free advertising for them.

 

The list of providers is fine if we preface it by saying that these docs have been utilized by our graduate parents and come recommended.  We, of course, could not use a list of "don't go here's", as that wouldn't be ethical.

 

I love the idea about the parent's list, and support sites for specific diagnosis.  I know I had the hardest time finding info about CP.

 

All I need is the OK from Dr. Anderson and the content suggestions.  I find that it is easier for Leo and I to get the info on our site if we don't have to do all the research as well as the coding.

 

As far as my pregnancy is concerned... I am in my 27th week, and still holding strong.  My cervix is now 5 cm and the Transabdominal Cerclage is still high and tight and hasn't moved a millimeter.  I can't believe my good fortune so far.  Both twins are girls, and the docs think I will be able to make it to June or maybe the first week of July! Thanks for asking.

 

Lisa R.

Webmaster

Parents As Partners.

----- Original Message -----

From: Robin Jokela

To: Parents_As_Partners@yahoogroups.com

Sent: Tuesday, April 25, 2006 5:02 AM

Subject: Re: [Parents_As_Partners] Website Mock-up. Please review for Saturday's Meeting.

Hi Lisa - I wasn't able to make Saturday's meeting. I like the look of the website so far. As far as content - here are some suggestions for links:

 

-Websites for various diagnoses

-List of providers (therapists,  MD's) throughout MA and surrounding states (if we can do this without any legal liability)

-Resources such as preemie stores/sites for clothing, preemie dolls ...etc (again if we can do this without any legal liability)  

- Diagnosis specific support groups

 

Message board -- It would be nice if the list of members included name and address (maybe just the town?) and names and ages of children

Hope that helps.

 

How are things going with you and your pregnancy?

 

Robin
Lisa Richards <larichards@...> wrote:

Dear Parents and Staff,

 

Please review the attached document and come prepared with suggestions about content for our website for the meeting on Saturday.  The links to the Mock-up are listed in the original email to Dr. Anderson at the bottom of this mail. 

 

The attached word document is just an aid to get us started.  Hope to see you all at the meeting Saturday, April 22, at 10 am.  For those of you who are not able to attend Saturday's meeting, please feel free to email me at home with your suggestions prior to Saturday morning.

 

Lisa and Leo Richards

 

----- Original Message -----

From: Charles Anderson

To: 'Lisa Richards'

Sent: Monday, April 17, 2006 7:50 PM

Subject: RE: Website Mock-up. Please review and respond.

Hello Lisa and Leo,

The template looks good.  We are probably going to need to work the Caritas Logo onto the page.  Sue has a good quality jpeg of the logo that she can email you.  As for content let’s make this an agenda item for this Saturday’s meeting.  Can you email the group and ask them to look at the template and come prepared with suggestions about content for our next meeting.

 

Thanks

 

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From: Lisa Richards [mailto:larichards@...]
Sent: Monday, April 17, 2006 3:33 PM
To: Charles_Anderson@...; cander328@...
Subject: Website Mock-up. Please review and respond.

 

 

Dear Dr. Anderson,

 

Here is a basic template of the site.  Nothing on it is permanent, everything on it can be changed, however, Leo and I feel that we should use this as a template to construct the site. 

 

What we need now is for the Team to decide the content of the site.  For example, Research sites, Specific Information relative to the CSEMC NICU, etc. 

 

Each link in the columns to the left and right will reference a specific page whether is it documents, photos, staff bios, etc.  We need to start thinking about the index of the site in regard to content.

 

For now if you go into www.parentsaspartners.net, you will get a page under construction site and a link to the message board ONLY.  To access the template that we are working on go to http://www.parentsaspartners.net/main.html.

 

Please email or call me (508-788-7763) with any ideas or suggestions.  Ideally we would like to see this board up and running (with only occasional construction pages) by Mother's Day.  Giving us a month's lead time on the Walk.

 

Lisa and Leo Richards

 

 

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