"Hearts will never be practical until they can be made unbreakable."
― L. Frank Baum, The Wonderful Wizard of Oz

Wednesday, May 20, 2009

What helped/didn't help in our experience with Sam

This is a post I just made in response to a question on the MISS forum about what helped and didn't help when our baby died:

"In my case, my Sam was not born still (although we'd been told that might happen because of his heart, etc - that wasn't the case though. . . he thrived in utero), but here are some of my thoughts:

1) I loved when the hospital put his footprints on a hat for me right away when he was born.

2) When Sam died, I loved that his nurses offerred to make molds of his hands. They only had enough for his hands and not his feet, but because we had his footprints, I was surprisingly okay with that. They also prepared a memory box for us. . . in which they put a lock of Sam's hair (he had lots of it!), and the last little outfit he wore.

3) While Sam was alive, he never got to leave the hospital. Because of the vent, the nurses didn't like to dress him over his head. . . we found a kimono style side close outfit and were very proud of ourselves. This was put on him regularly. . . and then one day he was sent for a procedure, and the nurse didn't undress him before taking him down. They CUT off the outfit!! It was in shreds. When I heard that, I went ballistic! Sam's doctor yelled at me for crying hysterically about this. I had to try to explain how symbollic this particular thing was. I already intrinsically knew he were never be coming home, that I would never get to dress him in as many cute outfits as I wanted to. It still makes me cry to think of this particular event. I know that I "should be happy" that I got that time with Sam alive, but even still . . .

4) When Sam died, I did not like or even really appreciate that people sent us "dead flowers" (cut/arranged). I did appreciate those who got the message, and gave us live/living plants (our favorite was the Peace Plant). We still have these, and I do my best to keep them alive, too.

5) What was not helpful was looking for a in-person support group. We tried one, where my husband and I were the only ones there. The second one that we were referred to was almost all parents of babies born still or babies who died very shortly after birth. Frankly, people were jealous we got to hold Sam alive. Then we moved to another state. The only in-person support groups I've found locally are either pregnancy loss/born still groups, or Compassionate Friends, and when I talked to one of the leaders, she said her child was the youngest death in the group at 2+ years old. She said we could come, but we probably wouldn't fit in. This is all why MISS online IS my support group at this time. It's been very upsetting that we just don't "fit in" anywhere! Very frustrating. . .

6) Insurance issues. . . we "pre-registered" at the hospital I had Sam in, and we gave them both my insurance info and my husband's secondary insurance info. When I went in to have Sam, they said they didn't have any of our information, and refused to take my husband's at that point. It became a huge mess in the long run. . . which we were still dealing with a little as a month ago (with a couple of bills, still) . . . one year after Sam died. We THINK it's finally all taken care, fingers crossed!

7) Sam's surgeon completely ignored us right after Sam died, but we were still on the unit, and he was there on rounds. Most of the other doctors and some of the nurses came in to express their condolences, etc, but the surgeon would not even look our way. We noticed. My husband was very angry about this, actually.


I probably have more thoughts. . . but these are the major things for now. "

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