3 weeks...

They put the wrong time of death on James' death certificate.  It doesn't really bother me.  Heck, they gave him credit for an extra 15 minutes.  I will probably always be fixated on that.  One of the things that is so astounding to me is how long he went between his last breath and when his heart stopped beating.  Grown-ups (the patients I'm used to seeing) tend to die quickly once they stop breathing.  Little James lasted at least 10 minutes (see: fetal hemaglobin) from the time of what was clearly his last breath until his heart stopped. It was weird to hold him when he had clearly passed on, but still had a heart beat.  

I wish there were new moments and new photographs to see; I love looking at what we have, and seeing new pictures taken by different people.  But I have already seen them, even if it's a new angle, I've already seen those moments. No new ones are coming. Sometimes I kick myself and wonder, "what if." But that isn't going to help me or anyone else.  

We are trying to take advantage of the time while my body heals to make some other memories as a family.  However, I can't help but think of how I'd rather it had all turned out differently.  But we are still having fun.  Moving forward is weird.

Some good organizations...

We have started a "legacy page" for James Logan at the trisomy 18 foundation website.  If you would like to make a donation in his honor, we would be delighted.    http://www.trisomy18.org/goto/james_logan

When we first received James' diagnosis, it was one of the first sources of information that we found and it did a good job of presenting an unbiased presentation of the options and preliminary information. There are better and more detailed places that offer more information on the care and keeping of trisomy 18/13 kids (SOFT), but the trisomy 18 site was our first point of contact with our new reality and I am happy to support its continued operation.  They offer legacy pages where families can memorialize their children and I poured over those sites in the beginning attempting to figure out the overall prognosis for my little boy.  I hope that someone can get something useful out of James site.

Other resources that we have found to be amazingly useful:

Hospice and Palliative Care of Charlotte "Kids Path" program has a Perinatal hospice program.  Although we were not lucky enough to get to use their home hospice programs, my discussions with their director gave me amazing comfort in knowing we could get what we needed.  She also helped me put together our birth plan.

Now I Lay Me Down to Sleep - this is a national organization dedicated to helping families of stillborn or early infant death babies by providing them with a professional photographer to take pictures of their previous child to keep forever.  We were lucky enough to work with Faith Massey who is our area coordinator in the prenatal phase.  She was, unfortunately, out of town on the date of our induction. However, she went above and beyond and found us another photographer for that day. Ron Randle of Love Shutter photography was kind enough to step in on the day of our delivery and was able to make it to the hospital earlier than expected to capture pictures of our baby before his death.  Pretty amazing people and I cannot wait to see the pictures, due in any day.