R.I.P. Lilly Hope

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jenlynn1227
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Posted: Tue Feb 17, 2009 1:41 pm 
Post subject: R.I.P. Lilly Hope
I recently went for my 18 week appointment at my high risk pregnancy clinic. I found out I was having a little girl Smile The ultrasound turned out fine, but the cardiologist noticed there was something wrong with her heart... he spent about 30 minutes examining and then decided she had congenital heard disease.... she had a defect called teteralogy de fallot. This really worried my boyfriend and I, but they reassured us that this disease was something that could be fixed right after birth. My genetic counselor then told me that there could be a 50/50 chance that our baby would be mentally disabled. Now this really worried us. I decided to get a second opinion from another high risk ob hospital and they did a fetal MRI to check Lilly's brain formation. At 19 weeks 5 days we found out that Lilly's brain had not formed correctly and she would be severely disabled. THey told us that through the surgery and brain malformation that she would not live very long if at all after the pregnancy. We decided to call our regualar clinic and they told us to terminate we would have to come in the very next day. That whole night I cried and prayed and cried, but this seemed like the right thing to do... i didn't want my baby to feel pain. I was in labor for 28 hrs. and delivered a beautiful little girl.... she stayed with us for 3 short hours before she passed. She was born on Febuary 6, 2009...
If anyone has some similar experiences i would really like the help and support.... some days I am completely fine and then other days i just want to sit at home and cry....
pips1
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Posted: Tue Feb 17, 2009 6:41 pm 
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Hi sweet
Just wanted to say how sorry I am firstly to hear your news. I can't imagine firstly how hard the decision must have been that you had to make, and then what you went through. I can't say I have been through the same at all, but we lost a little boy at 36 weeks pregnant, and the pain has stayed with me this past 18 months since we lost him. Thankfully at the time I was niaeve to how long I would grieve for, and how lost I would feel, because I think if I had known at the time what this past 18 months would be like, I would never have coped. But like you, I was in labour a long time - knowing our little one had already passed. Nothing will change the sadness, but somehow in the past 18 months, I have come to live with the pain - and I have learned to carry it, and not let it carry me. Would still do anything now just to hold him one last time though.....
I am thinking of you hun, and my heart is so sad for you too. I hope you find a path of peace for yourselves through this difficult time. Pipsxxxxx
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1lbkb
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Posted: Tue Feb 17, 2009 7:31 pm 
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My heart goes out to both of you xxxx
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