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<span><b>I lost my infant daughter last year,Vanessa Lane,at 6 days old.She would have had her 1st birthday on October 2 this year and October 8 will be the one year anniversary of her passing.<br><br>
When I was about 18 weeks pregnant with Vanessa,we learned that there were some problems.She had problems with her head,both hands and one foot.The problems with her head were very bad and our doctor said that she probably wouldn't be with us very long after birth.He said that until she was born,we wouldn't really know how bad it was,what caused it or if anything would be able to be done to help her.As I came closer to my due date,the prognosis worsened and we were told that she most likely would not survive labor and delivery.But she did,and she was with us for 6 days.She was so much stronger than they had thought.<br><br>
After she was born,we were told what was wrong and why it happened.We were also told that there was nothing that could be done to help her,the damage was too severe.She had acrania(a portion of her skull never developed properly) and an open encephalocele(an opening at the crown of her head) It was caused by Amniotic Bands.<br><br>
Basically,early in the first trimester of my pregnancy,the inner membrane of the amniotic sac(amnion) ruptured but the outer membrane (chorion) stayed intact.So I didn't lose any fluid or anything,I never even knew it had happened.But when the inner membrane ruptures like that,it allows these sticky pieces of tissue (amniotic bands) into where the baby is.They are sort of like sticky pieces of thread-like flesh.They float in the fluid around the baby and can wrap around the baby causing restrictions in the growth of whatever part they are wrapped around.If this rupture occurs after the first 45 days of pregnancy then only the limbs are usually affected.If it occurs before the first 45 days,then there can be more serious damage.With Vanessa,this rupture occured before her neural tube finished fusing and she had a band around her neck just long enough to restrict the growth of her brain and skull causing the damage that she had.She also had a band around one ankle which caused that foot to not develop.Bands also affected both of her hands and amputated a portion of one finger.(these bands can amputate fingers,toes and even entire limbs)This occurance is very rare and is not gentetic.Most people I have talked with have never even heard of it.There isn't a lot known about it.<br><br>
The time I had with Vanessa,my pregnancy and the 6 days I held her,was not near enough but it is so very precious to me.I can't believe that it has been almost a year.On one hand,it feels like an eternity since I've held her and kissed her soft cheeks.But then I just can't believe it has been a year now.I think it's just the fact that time has actually gone on.I remember when she first passed.I couldn't go anywhere because seeing people just being so normal and living their lives enraged me.My world was at a stand still and everyone was just going on with life.I felt as if I had been on a certain track in life and I thought I knew where I was heading and then out of no where I was derailed and I was in a place that I didn't want to be,and never thought I would be.<br><br>
From the moment we found out about the problems that Vanessa had,my whole world changed.I prayed for a miracle.That she would be born and by a miracle she would be OK.I had heard of that happening,where the doctor would say one thing and then the baby would be born healthy.But that wasn't the case with my sweet angel.Vanessa passed away at home on October 8,2002.I was holding her when she took her final breaths.I remember feeling like this could not really be happening.My child was dying right in front of me and there was nothing I could do to save her.I think of her always and she has changed my life and myself down to my core.<br><br>
I am in the process of making a web site for Vanessa and I would like to share it with you.It's here: <a href="http://www.angelfire.com/va3/vanessalane" target="_blank">http://www.angelfire.com/va3/vanessalane</a><br>
Her story is there as well as some pictures of her.<br><br>
Many Blessings to all of you</b></span>
 

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Thank you for sharing your precious Vanessa's all too brief life with us. I am so sorry for your loss. <img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/hug.gif" style="border:0px solid;" title="hug">
 

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Do not have words to tell you how sorry I am, Vanessa's web site is such a beautiful tribute to your amazing angel... how much a little baby girl can teach us!<br>
May God bless you and your family<img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/hug.gif" style="border:0px solid;" title="hug">
 

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Thank you so much for sharing Vanessa's story with us. I am so sorry for your loss of your beautiful girl. My heart aches for you and I am crying my eyes out at the sorrow you have experienced. I am glad you had some time with her and were able to find the strength to tell her it was ok to go.<br><br>
She is beautiful, what a sweet precious baby face, thank you so much for sharing the pictures and her story. I love the picture of you and her together where she is looking right at you and smiling, it is just such a precious moment.<br><br>
We have a member who recently had a similar loss. I am sure it will help her to hear from someone who had a similar experience.<br><br>
I am so sorry.<br><br><img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/hug.gif" style="border:0px solid;" title="hug"><img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/hug.gif" style="border:0px solid;" title="hug"><img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/hug.gif" style="border:0px solid;" title="hug">
 

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i dont know where to start. The tears I have right now are for your pain and it is also for the pride I felt as I read your story. The pride you have for your beautiful daughter. She has touched my life just now and makes you really think about life and what goes on around you. I want to thank you so very much for letting me read your story and see the pictures of your sweet baby girl. You are a very strong woman and I wish you the best. Thank you
 

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I never thought I'd come across another person that had a baby with the same birth defect as ours!! I am in awe that your lovely little one lived for 6 days! I'm so happy for you that you had that time with her. Our Chloe Louise lived for 5 hours and died in my arms as well.<br><br>
I'd love to share our story with you. I wrote a little about it in this thread. <a href="http://216.92.20.151/discussions/showthread.php?s=&threadid=59860" target="_blank">http://216.92.20.151/discussions/sho...threadid=59860</a><br><br>
Thank you so much for sharing your story! I completely understand your pain. <img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/hug.gif" style="border:0px solid;" title="hug">
 

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Thank you for sharing with us and I am so sorry for you. that seems inadequate, but know that I am thinking of you and your sweet Vanessa Lane.
 

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What a beautiful family you all make. I can't find words to tell you how deeply your story touched me. The deep love Vanessa felt in your womb and the 6 short days here on earth was enough for any lifetime. I'm just sorry her presence could not stay.<br><br>
Anniversary's are hard. Remember to be gentle with yourself and plan a quiet day. Usually, the build to these days is harder than the day itself.<br><br>
You may want to make some family rituals around her birth day. I like to make a small alter and light a candle. I place small things that remind me of my precious daughter and just keep the day clear so that I have the time I need to move through it gently.<br><br>
How are you feeling now? Do you have plans for the birth/death day?
 

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My heart just hurts for you, but I wanted to tell you how strong and brave you are. Thank you for sharing Vanessa Lane's story.<br><br>
She is beautiful. Such a sweetpea. I love her name.<br><br>
I wish you peace and strength, especially as her anniversaries are drawing closer. May they be days full of love and gentleness and happy memories.<br><br><img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/hug.gif" style="border:0px solid;" title="hug"><img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/hug.gif" style="border:0px solid;" title="hug">
 

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Thank you so much for sharing Vanessa's story and web site here. I feel very blessed to have seen your precious pictures and read your story.<br><br>
Much love to you and your family,<br>
Katherine
 

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Thank you for sharing your story. I'm so sorry for your loss; and I'm saying a prayer that you'll have peace in your heart on Vanessa's anniversary.<br><br>
The website is beautifully done. What a lovely tribute to your precious treasure.
 

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Discussion Starter · #15 ·
<b>Thank you all so much for your warm replies.Vanessa's anniversary days are approaching quickly.I do have a few things planned.Mostly things involving myself,my husband and my son and daughter,but I will be having a gathering on her birthday with other family members.I have a few things I want to say about Vanessa and the past year and I have a few poems to read.I am also having a tribute video made with pictures of her and home video footage.The backround music will be 2 special songs,Fly by Celine Dion and Hello,Goodbye by Michael W. Smith.I am going to play the tribute video at her birthday gathering.<br><br>
Then the weekend of the 3rd through the 6th we are going to the Florida Keys just the 4 of us.I am having a moderate sized stone engraved with her name and birth and heaven dates and when we go there we are renting a boat and going out to a pretty spot and dropping it in the ocean.I would like to go away somewhere every year and leave some sort of monument to her.(planting a tree,leaving engraved stones somewhere...)I also plan on making a donation in her name to my local Hospice.They helped so much,I can't say enough about their generosity.We will also each be releasing a balloon to her each of the six days she was with us.The kids are looking forward to this and I will let them pick out their own balloons for each day.I haven't decided what I want to do on her heaven date but it will be something for just the 4 of us.<br><br>
I feel like I am doing alright now.I have had a lot of moments over the past year when I thought I was losing my grip.I feel like I am slowly accepting the grief and pain of losing her as a part of my life.I think it doesn't really get "better" but I have gotten better at living my life with this pain and grief. There have been times when I would hope and pray for something to take that hurt away.But when I really thought about...I don't think I would want the pain to just go away.I wouldn't want to think of Vanessa and not hurt and not miss her.That wouldn't be right. I have come to think of the hurt as a sort of testament of how much I love her.I hurt so much because I love her so much and it's normal to feel this way. You can't have your child torn from your life and not hurt.<br><br>
I'll always hurt and I'll always miss her and think about what life would be like if she were here,what she would look like and what she would be doing. I think about her all the time and it hurts,but it's supposed to hurt.It's normal.I think when I actually said that to myself and believed it and realized there's nothing "wrong" with me and I'm not going crazy and that what I feel is what I am supposed to feel,I feel like it was a big step toward being able to productively move through my life again. I will admit that I started to fall apart at one point and it scared me and while I would NEVER do anything like end my own life,I can say that I have a better understanding as to why some people feel that is an answer. Those were dark times that I hope that I never experience ever again. It's strange to me that my love for Vanessa is what brought me to that dark place and that love is also what brought me out of it.<br><br>
Well I just want to say thank you again for allowing me to share Vanessa with you all.It means a lot to me to have people see her and read about her and her life.She touched my heart and changed me so much and the thought that no one was ever going to know her made me angry.That's why I made the web page for her.She's amazing to me and I want people to know how special she is.<br><br>
Blessing to all of you and your families,<br>
~Barbara~</b>
 

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Total goosebumps all over my body. U r so brave to share that with us all. its hard i know first hand. We lost Ellery at 2 days. He had a large blood clot in his heart. To this day [3 years later] they have no idea why. His brother was born 8-21-02 healthy as a horse. But it was scary. TRy againg if u havent already. It wont take it away but it helps and it gets easier everyday. remember there is a reason for everything thijugh u may not know why or even like iit. U will see her agagin and she is always with u. Can u bekieve that 1 little person cpould bring so much love. Good luck in all ure future pregnancies and with whatever it is u are doing. Who Knowws maybe they are playing together right now.<img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/love.gif" style="border:0px solid;" title="love">
 

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Thank you so much for sharing your story. All my whining about having a baby alone and a c-section seem so stupid now.<br><br>
You re amazing people and your daughter was amazing. I hope you are not in too much pain now.
 

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Oatmeal - everyone's feelings are valid no matter what <img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/hug.gif" style="border:0px solid;" title="hug"><br><br><div style="margin:20px;margin-top:5px;">
<div class="smallfont" style="margin-bottom:2px;">Quote:</div>
<table border="0" cellpadding="6" cellspacing="0" width="99%"><tr><td class="alt2" style="border:1px inset;">It's strange to me that my love for Vanessa is what brought me to that dark place and that love is also what brought me out of it.</td>
</tr></table></div>
This statment touched me so deeply. I too felt the same way when I lost my daugher Amanda. You mentioned the greif going to a place that was frightening. It's so normal to get to that point. I think that's the point that your mind finally grasps the reality of what's happened. It's such a dark place. I'm glad you recognize where it came from.<br><br>
Your day sounds so beautiful. I know Vanessa continues to feel the love you have for her. You'll never lose this love for her, though the pain will slowly fade until it's at a point that's more bareable for you.<br><br>
Please let us know how her day goes.<br><br>
Gently with hugs,
 

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What an amazing, sweet little girl. I am so sorry that she is no longer with you. Thank you for sharing her story with us.<br><br>
Anniversaries are definitely hard. Xiola would have been a year old this past March... the whole month before her birthday (she died in the last 10 minutes of her labor) I felt like I was 're-living' the last weeks of her pregnancy. It amazed me how I could remember the most minute things about our last days together... after her birthday, though, I felt such a release. As if, I made it to this milestone, so I can make it through whatever is yet to come.<br><br>
I hope Vanesssa's anniversary brings you a similar peace.<br><br>
Xiola's Momma
 

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<img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/mecry.gif" style="border:0px solid;" title="crying"> I am deeply sorry for you're sad loss !<br>
I seen little Vanessa's site and she was such a beautiful little girl.<br>
thanks for sharing you're story and god bless <img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/hug.gif" style="border:0px solid;" title="hug"><img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/hug.gif" style="border:0px solid;" title="hug"><img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/hug.gif" style="border:0px solid;" title="hug">
 
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