From doyleew@... Mon Feb 16 18:31:01 2004 Return-Path: X-Sender: DoyleEW@... X-Apparently-To: cherubsrus@yahoogroups.com Received: (qmail 40851 invoked from network); 17 Feb 2004 02:30:58 -0000 Received: from unknown (66.218.66.172) by m7.grp.scd.yahoo.com with QMQP; 17 Feb 2004 02:30:58 -0000 Received: from unknown (HELO imo-r04.mx.aol.com) (152.163.225.100) by mta4.grp.scd.yahoo.com with SMTP; 17 Feb 2004 02:30:57 -0000 Received: from DoyleEW@... by imo-r04.mx.aol.com (mail_out_v36_r4.14.) id r.142.222b60fd (16335) for ; Mon, 16 Feb 2004 21:30:50 -0500 (EST) Message-ID: <142.222b60fd.2d62d6da@...> Date: Mon, 16 Feb 2004 21:30:50 EST To: cherubsrus@yahoogroups.com MIME-Version: 1.0 Content-Type: multipart/alternative; boundary="part1_142.222b60fd.2d62d6da_boundary" X-Mailer: 8.0 for Windows sub 6024 X-eGroups-Remote-IP: 152.163.225.100 From: doyleew@... Subject: Again - Name & Things to Help .... X-Yahoo-Group-Post: member; u=7232406 X-Yahoo-Profile: doyle_propst --part1_142.222b60fd.2d62d6da_boundary Content-Type: text/plain; charset="US-ASCII" Content-Transfer-Encoding: 7bit Hi all, 1) Name - I'm not really worried about if it is first when it is accessed via the web - I think eventually it will be the BEST based upon the multitude of talents and experience we have so far here. Plus I truly believe we can do more - already we have the human "resources." If you feel your name "idea" isn't good - don't - you never know. If you want to ask others opinions outside of this listserv too - kids usually can come up with the most amazing things! (Hint) 2) I would like to encourage those grieving parents out there - if they have time to look into being a facilitator for their area for MISS Foundation. They have an abundance of resources and all it would be is to find a place to have meetings once a month - MISS provides information on how to do this and some really wonderful materials to know how to help and reading it has helped me better understand my grief too. (a) The one thing I found that hit home was that they want facilitators to give their local number so when someone calls they get a voice. That is key. Something to keep in mind for this organization. How many times have we called that other to have the number not working or just to leave a message - that was never returned? 3) Once we have a name, we all agree on - and ALL vote on - think of a mission statement - some of you have already come up with good things to draw from with the names. 4) In the coming weeks or few months - if you have contact with doctors or nurses - ask them their opinions on what they think is needed. I know they look at the Internet as a mixed blessing. Sometimes it gives information that will take you in a direction medically that isn't best. (Personally, I have a problem with statistics because one year if a hospital has 10 CDH babies and all have good pulmonary function - survival rate is 100%; the next year - it could be 0%. Statistics can be altered too.) a) Gather information or write down the hospital and their NICU rules, benefits - Karen mentioned a quilt they received when Patrick was born. Any other information regarding care, CDH or ECMO would be helpful. If you don't want to give the originals - make a photo copy. (We received a booklet on ECMO from UVA.) b) What did the hospital do for you - support for your grief or for your special child? Where did they refer you? We received a folder of booklets and also numbers we could call. This is important. c) Follow-up care - was any offered - for the children who are still here gracing us or for your family going through this grief? This I feel is very important. There isn't enough. There needs to be more. I'm not suggesting you all quit life and take this on - but there is a need that isn't being utilized as a state rep in VA - I received contact from 5 families - that is all. After three deaths, the 4th survived and I met with her family! I received 2 contacts from outside CHERUBS. All of the above could also help in a "Mission Statement" too. Also - guys, I know you don't write much but for so LONG you all are so ignored. What did go right, what went wrong - what do you wish could have been there for you as a father? Children - your own kids - or if you know of other situations with survivor's siblings. (Both the loss of a sibling and the fragile health of a sibling can be VERY traumatic.) Again, I am in awe of everyone here - and in a week - 20 now are on this listserv & all the ideas! WOW! Elizabeth, Mom of Rachel 6/6/85; Cecilia 11/2/99-12/10/99& Noah 8/13/02 --part1_142.222b60fd.2d62d6da_boundary Content-Type: text/html; charset="US-ASCII" Content-Transfer-Encoding: quoted-printable Hi all,=

1) Name - I'm not really worried about if it is first when it is accessed v= ia the web - I think eventually it will be the BEST based upon the multitud= e of talents and experience we have so far here.  Plus I truly believe= we can do more - already we have the human "resources."  If you feel = your name "idea" isn't good - don't - you never know.  If you want to = ask others opinions outside of this listserv too - kids usually can come up= with the most amazing things!  (Hint)

2) I would like to encourage those grieving parents out there - if they hav= e time to look into being a facilitator for their area for MISS Foundation.=   They have an abundance of resources and all it would be is to find a= place to have meetings once a month - MISS provides information on how to = do this and some really wonderful materials to know how to help and reading= it has helped me better understand my grief too.

       (a)  The one thing I found that h= it home was that they want facilitators to give their local number so when = someone calls they get a voice.  That is key.  Something to keep = in mind for this organization.  How many times have we called that oth= er to have the number not working or just to leave a message - that was nev= er returned?

3)  Once we have a name, we all agree on - and ALL vote on - think of = a mission statement - some of you have already come up with good things to = draw from with the names.

4)  In the coming weeks or few months - if you have contact with docto= rs or nurses - ask them their opinions on what they think is needed.  = I know they look at the Internet as a mixed blessing.  Sometimes it gi= ves information that will take you in a direction medically that isn't best= .  (Personally, I have a problem with statistics because one year if a= hospital has 10 CDH babies and all have good pulmonary function - survival= rate is 100%; the next year - it could be 0%.  Statistics can be alte= red too.)

       a) Gather information or write down th= e hospital and their NICU rules, benefits - Karen mentioned a quilt they re= ceived when Patrick was born.  Any other information regarding care, C= DH or ECMO would be helpful.  If you don't want to give the originals = - make a photo copy.  (We received a booklet on ECMO from UVA.)

       b) What did the hospital do for you - = support for your grief or for your special child?  Where did they refe= r you?  We received a folder of booklets and also numbers we could cal= l.  This is important.

       c) Follow-up care - was any offered - = for the children who are still here gracing us or for your family going thr= ough this grief?  This I feel is very important.  There isn't eno= ugh.  There needs to be more.  I'm not suggesting you all quit li= fe and take this on - but there is a need that isn't being utilized as a st= ate rep in VA - I received contact from 5 families - that is all.  Aft= er three deaths, the 4th survived and I met with her family!  I receiv= ed 2 contacts from outside CHERUBS.

All of the above could also help in a "Mission Statement" too.  Also -= guys, I know you don't write much but for so LONG you all are so ignored.&= nbsp; What did go right, what went wrong - what do you wish could have been= there for you as a father?

Children - your own kids - or if you know of other situations with survivor= 's siblings.  (Both the loss of a sibling and the fragile health of a = sibling can be VERY traumatic.)

Again, I am in awe of everyone here - and in a week - 20 now are on this li= stserv & all the ideas!  WOW!
Elizabeth, Mom of Rachel 6/6/85; Cecilia 11/2/99-12/10/99& Noah 8/13/02=