Monoamniotic Monochorionic Introduction Page
How This Site Was Created
This site came about from an informal e-mail support group. The members found it had the necessary resources to put together a site (and silly me suggested it.. and consequently nominated to become the "glue" to make it happen - just when my boys were being born). Seriously, the group had someone who was willing to do the web page "assembly" and technical work, a couple to host a site (many thanks to SVN.NET), volunteers to contribute the money for a domain name "monoamniotic.org," (by the way there is a less used spelling of monoamnionic that I was stuck on... ah) and some determined parents and expecting parents to help others out there going through what we did when we discovered the terrible odds quoted by our doctors that our newly discovered twins may not survive their journey to babyhood. With awareness, there is a much better chance that the babies may survive and that is this site's mission - knowledge and support.
A board of our most involved people was formed and literally thousands of e-mails later - the site is becoming what we've envisioned it to be. There is still lots of work to be done and it's all volunteer by parents of twins - which is hard to do. The older my twins become, the harder it is for me to maintain the site. It's only by the incredible sacrifice of spare time (and time stolen here and there) that we've managed to pull this off. My goal now is to make the site self-sustaining. I have much work to do to do this, but hopefully I can do at least that much.
The site began with just the initial Introduction Letter as the web page with e-mail address in May, 1998... and has been slowly growing into a site with more information, a FAQ, a medical terms page, and most importantly a BBS Forum for folks to communicate. After we reached several dozen folks, the e-mail list was a bit unwieldy for some who didn't want all the e-mail. It was decided early on to protect the confidential info (e-mail addresses and names) of folks within the group thus - the authentication process (login). The BBS provides for most of the interaction between members - but the site does collect quite a bit information if we ever have a member with enough energy to compile it... we could make use of it.
One incredible fact: this site was created entirely by E-mail/Internet communication. That's what's possible today - with our board members scattered from Canada to the NorthEast, U.S. to the Southern States, to the West Coast (i.e. all corners of the U.S.A.) we somehow didn't even think that this couldn't be done - we just did it. We currently have members all over the world - and have been contacted from every continent except one - I'll let you guess which one.
I can't say enough for the founders of the informal e-mail group and everyone I've met in the group. By simply being there, this web site is now in existence. To everyone who worked on the site: coordinator, roster keeper, ambassadors, writers, collectors of information, web site searchers, technical backup, etc... - and those who are contributing their stories and experience to those who are expecting.... Thank You!
The tools: The servers at SVN.NET. Apple Macintosh computers around my home. My wife's PowerPC 7200/120 with 128mb of RAM with 1.2gb hard drive and an LC III with 20mb ram and 800mb (total) hard drive still kicking fine since 1992. A note though, the LC III is currently "headless" i.e. no monitor as is our gateway to our internet (another PPC 7200). Since it performs most duties as a server - I simply use TimBukTu to control it from any other of our Macs. My PowerPC 5300c PowerBook with 56mb of RAM and a 4gb hard drive with MO drive for offline storage played a part - but currently is being replaced with another used machine that I purchased recently (6500/250 - with accelerator G3/400). I now have a CD-RW drive to our network primarily for daily automated backups (and the occational mixed CD) and a flattop scanner (for our personal website/digital photo album see: our personal website. An ISP connection to the world (currently @Home) that my home network can access. The next upgrade will be down the road to a new G4 probably... for Dianne - and upgrade our inhouse Ethernet network to Fast Ethernet... but the boys come first now!
Software employed: Mac OS 7.5.3 through 9.0.4, Claris Home Page in the beginning of this project, GoLive's CyberStudio was used, and now Adobe PageMill, Adobe Photoshop, BBEdit, Anarchie, Fetch, Microsoft Word 98, Microsoft Excel 98, ClarisWorks 4.0, Apple's latest desktop internet search engine: Sherlock, Netscape 4.0.x through 4.61, Microsoft Internet Explorer 5, and any other little utilities normally available to me (drag and drop pieces of text to desktop, stickies, etc).
I don't have much else to say except that if you're just finding this site and have been diagnosed as monoamniotic - please join us. We have lots to share with you and perhaps some hope to offer. If anything, you have a place to "vent" your feelings like I did when I first joined the group. :-)
Keep the Faith!!!!
This site is entirely hosted, supported, and created by volunteers and donations from parents and expecting parents of monoamniotic and monochorionic twins.