Your experience with loss/es
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    Community Host Sapphire Sunsets's Avatar
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    Default Your experience with loss/es

    What has your experience with loss/es been like? Was there something that you feel really helped you? Was there something that you feel really harmed/hurt you? Did you get the support you needed from family/friends/co-workers? What is the one thing you wish someone had told you as you were going through your loss/es?

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    Posting Addict AVoiceInTheWilderness's Avatar
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    I've lost 10 little ones at various stages of the first trimester....I may stand alone here, but I could not have survived my losses without God. Family? One of my sisters had 2 losses, she was in a much different place tho - no connection. Instead, I chose to share here. Safe and surrounded by those who understood. The one thing I wish someone had told me as I was going through my losses? To trust in what the Holy Spirit was telling me....Welcome back, Sapphire Sunsets

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    Community Host Sapphire Sunsets's Avatar
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    Quote Originally Posted by AVoiceInTheWilderness View Post
    I've lost 10 little ones at various stages of the first trimester....I may stand alone here, but I could not have survived my losses without God. Family? One of my sisters had 2 losses, she was in a much different place tho - no connection. Instead, I chose to share here. Safe and surrounded by those who understood. The one thing I wish someone had told me as I was going through my losses? To trust in what the Holy Spirit was telling me....Welcome back, Sapphire Sunsets

    Do you mind if I ask if you ever got a reason for your losses? Wow thats alot!

    I'm so glad you came here. Yup, i would try to talk to my family but they didn't understand. It wasn't till my sister went through her own stillbirth that she really "got" it.

    Thank You

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    Community Host Sapphire Sunsets's Avatar
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    My answers to the questions:


    My experience with loss/es is what they call "compounded losses". I've lost alot (not just preg) of people all in the same time frame. Zachary (stillborn) and my Mom's friends son (he passed the exact moment i found out Zach had passed, 3,000 miles away). My god father passed on the 1yr 1 day mark annvi of Zachary being delivered. My grandmother passed on the exact 10 yr annvi of Zach passing.

    What really helped me? I think being able to help other people. I'm a caregiver by nature. It did take alot to get past those really really dark days though. I hope the fact that i came through it and am stronger because of it makes it easier for people to know that you can get eventually see the light. It's never going to go away completely but it's liveable.

    What really harmed/hurt me? OMG, I will never forget this. Now, remember this was 17 yrs ago and support groups weren't what they are now. When i was released from the hospital, i asked them if there any groups they could recommend. What group they put me in? A postpartum group with newborns present. I lasted one meeting.

    I didn't get the support needed. My family and friends not talking about Zachary and avoiding the topic when i brought him up wasn't good. I hit rock bottom and was suicidal. They still don't really get it. I know my parents seeing both their daughters go through stillbirth was painful. They are out parents and still have that feeling like they need to protect us from being hurt and there wasn't anything they could do to prevent it.

    The one thing i wish someone had told me? Wow. This is an emotional one for me. I told my sister this when she had Brendan (23 wks). That your not going to want to use the drugs to help with labour. They had me so drugged up that there are alot of things about Zach's delivery i don't remember.

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    Posting Addict AVoiceInTheWilderness's Avatar
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    How awful! A postpardum support group!? I can't even imagine . Thanks for sharing, Sapphire.

    My losses? Still no cause ever found tho CHILD-MENT BELOW:


















    My newly turned 5 yr old son, Kaden, my eldest, was diagnosed with a seizure disorder (grand mal/frontal/absence) when he was 3 1/2. He also failed a metabolic panel which pointed to a mitochondrial disorder. Saw a geneticist at UNC who said that physically and intellectualy, he did not fit this disorder. They could not rule out seeing him again one day tho as out of about 200, there are only 22 mito disorders named, so, could only test for those. Long story short usually when a panel like this is failed its genetic, and due to my losses their focus was on me. I've obviously passed something on but what is the question. Hope we find out one day..

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    For me it has been writing on here. I have had 7 chemicals besides losing Bailey at 11-12w. The chemicals were easy to deal with. I had been told since I was 16 that I would not get pregnant without help. With Bailey I was so lost. I also was able to access the Pregnancy Loss Support Team (they deal with m/c, stillbirth, infant death) and they were wonderful. Until I could get in and see the RN that runs the program for counseling sessions they would call me every few days to see how I was doing and if I needed to talk. Meeting with Patti was awesome and there I received a lot of resources to help - books, articles, and a teddy bear so my arms would not be empty. The teddy bear was donated from other families who have lost babies, we in turn have donated bears. They also have a baby loss memorial every May and then A Walk to Remember in October. I have been to 2 of the memorials and it really helps, we went to our first walk and it was so hard seeing all the babies names written along the route. I cried when I saw Bailey's name. After the memorial service this year we went to the grave where Bailey is buried with other babies who died around the same time. It is still frustrating to know that even after autopsy they were unable to determine Bailey's gender, some days I think girl and some days I think boy.

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    Community Host Sapphire Sunsets's Avatar
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    Quote Originally Posted by AVoiceInTheWilderness View Post
    How awful! A postpardum support group!? I can't even imagine . Thanks for sharing, Sapphire.

    My losses? Still no cause ever found tho CHILD-MENT BELOW:


















    My newly turned 5 yr old son, Kaden, my eldest, was diagnosed with a seizure disorder (grand mal/frontal/absence) when he was 3 1/2. He also failed a metabolic panel which pointed to a mitochondrial disorder. Saw a geneticist at UNC who said that physically and intellectualy, he did not fit this disorder. They could not rule out seeing him again one day tho as out of about 200, there are only 22 mito disorders named, so, could only test for those. Long story short usually when a panel like this is failed its genetic, and due to my losses their focus was on me. I've obviously passed something on but what is the question. Hope we find out one day..

    Marie, I just realized the other day that it was you!

    Wow! So he has seizures? I worked with kids at a residential school and the classroom i was in about 7 of the kids would have seizures. Very scary!

    Have they done the genetic testing on you? I hope you find out too.

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    Quote Originally Posted by mom2robbie View Post
    For me it has been writing on here. I have had 7 chemicals besides losing Bailey at 11-12w. The chemicals were easy to deal with. I had been told since I was 16 that I would not get pregnant without help. With Bailey I was so lost. I also was able to access the Pregnancy Loss Support Team (they deal with m/c, stillbirth, infant death) and they were wonderful. Until I could get in and see the RN that runs the program for counseling sessions they would call me every few days to see how I was doing and if I needed to talk. Meeting with Patti was awesome and there I received a lot of resources to help - books, articles, and a teddy bear so my arms would not be empty. The teddy bear was donated from other families who have lost babies, we in turn have donated bears. They also have a baby loss memorial every May and then A Walk to Remember in October. I have been to 2 of the memorials and it really helps, we went to our first walk and it was so hard seeing all the babies names written along the route. I cried when I saw Bailey's name. After the memorial service this year we went to the grave where Bailey is buried with other babies who died around the same time. It is still frustrating to know that even after autopsy they were unable to determine Bailey's gender, some days I think girl and some days I think boy.


    I'm glad you feel comfortable writing here.

    It's awesome that you were able to access that team. It's amazing how far support has come from how it used to be.

    I would love to do some sort of memorial or walk. I put Zach's name in the Shrine of the Holy Innocents in NYC, every month on a certain day (first tuesday?) they do a special mass and say all the names of the babies in the book.

    (((hugs))) Go with your instinct. I never knew if my m/c (4-5 wks) was a boy or girl, I did choose 2 names but i really do believe that was a boy too.

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    Posting Addict AVoiceInTheWilderness's Avatar
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    mom2robbie - I am so sorry for you losses....Wish we had a pregnancy loss support team like you had/have..

    Sapphire - Yes, very scary!! His are nocturnal so it's hard to know what is going on when he sleeps . The two grand mals (went status epilepticus) we are sure of he woke from - then they progressed. Frontals when they happen (only maybe 2-3 times that I've noticed since we put him on supplements, strict diet) I can usually tell - movements plus he will wake with a headache over his eyes.

    No genetic testing on me yet, tho, I have not pushed it. I will probably see my neurologist (had one for headaches - saw once) in the next few months to discuss if insurance would allow testing on me, given Kadens failed metabolic panel. We shall see...
    Last edited by AVoiceInTheWilderness; 01-28-2013 at 08:47 AM.

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    Posting Addict mom2robbie's Avatar
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    Quote Originally Posted by AVoiceInTheWilderness View Post
    mom2robbie - I am so sorry for you losses....Wish we had a pregnancy loss support team like you had/have..
    The support team is awesome. Patti who runs it has had 3 losses herself so she knows exactly what we have gone through. We are so lucky that they have the program and it is all free (well, all medical stuff is free here but not usually counseling). Even though it has now been almost 2 years I can still call, email or go in if I need to.

    Yes, very scary!! His are nocturnal so it's hard to know what is going on when he sleeps . The two grand mals (went status epilepticus) we are sure of he woke from
    My husband's seizures are nocturnal so I know that that is like. They thought he was under control until we were living together. One night he has 7 in a row, I was at the point if he had one more I was calling 911. He has now been seizure free for about 7 years.

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