Thursday, March 15, 2012

Baby update

I thought I'd drop in with a little update on the baby.  She's still here.  I'm still here.  We're still here.  :)

It's been about six weeks since we found out she had a one percent chance of survival, but she's still plugging along.  I had an amniocentesis a few weeks ago to confirm the Trisomy 18 diagnosis, but the results came back negative for any chromosomal defects.  The doctors were surprised and stunted and I was ecstatic, thinking this meant she might make it.  I went along thinking this for a week, until one sweet doctor had the courage to tell me that wasn't likely to happen.

I don't envy their job.  It would be so difficult to deliver bad news to hopeful parents.  We hear things from many different doctors and most seem to skirt around the truth enough that I'm left feeling confused with a false sense of hope.  I think it takes a truly gifted doctor to be able to give it to you straight, while still being sensitive.  

The hardest part through this all, is that I have connected with my baby over the last six weeks with such increased intensity.  When you wonder if each day will be the last, it's hard to think of much else.  Most of the time I'm able to feel peace in the knowledge that however things turn out, I'll be with her again, but other days I'm just plain old sad.

I sincerely appreciate the continued thoughts and prayers during such a difficult time.

Natalie


74 comments:

  1. Why do you want so many children?

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    1. I'm sorry your emotionally stunted and have had your sensitivity chip removed but please keep all pointless inquiries that are none of your business to yourself. I think she's got enough on her plate. Maybe she loves kids. Simple as that.

      Signed-
      Every single person that read your asanine question.

      We love you Natalie.

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    2. There is special place for people like you. So sad and bored you must be. It is a sickness to be as hateful as you have shown to be.

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    3. why do you care?

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  2. Oh sweet Natalie, you are truly amazing. I am so grateful for your example. Know that I keep your family in my prayers and so does my husband and our children. We love your family and are so sad you have to go through this. I have shed many tears for you. Please let me know if there is anything you need.

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  3. I didn't realize she only had a 1 % chance of survival. I can't imagine what you and your family are going through. It's a blessing to know the plan of salvation and that families are forever. You are a strong person

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  4. Prayers are sent out to you & your precious child! This is not ment as false hope but others have made it through to the end of their pregnancies with similar diagnosis. Hope & faith in whatever the outcome will get you through this.

    And to whoever posted anonymously such a rediculous question about having so many children, should be ashamed! No one ever has the right to judge another person, especially when they are going through a trying journey such as this. Bad form. Bad taste. Uncalled for.

    Bless your baby & your family, sending prayers your way

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  5. Natalie, while I've never lost any of my sweet children, my little sister has. I myself do not know what you are going through, but can share in a little bit of your grief in the fact that I lost a niece. My prayer for your baby is that she knows her Savior and rejoice with you that you will see her again someday. May Jesus bless and keep you and your family!

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  6. My name is Christine
    I love what you said, "Most of the time I'm able to feel peace in the knowledge that however things turn out, I'll be with her again." You are a truly amazing mom every second that you breathe. Everything does happen for a reason. She was created and you are so blessed with that. God is looking out for her and for you. My thoughts are with you!

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  7. I got all choked up reading this post. I'm so sorry you have to go through such a difficult time. I had a very high risk pregnancy and nearly lost my baby girl, this does not even compare to what you're dealing with. Praying for you, your family, and your unborn little girl. Stay strong!

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  8. I am sorry that someone posted that first cruel comment.Hopefully all of the other comments will blot out the first. I pray for you, your daughter and the rest of your family.

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  9. I can't even imagine what you're going through, we don't even know each other but I've thought about you a lot since you posted about this and how hard it must be. You are truly selfless and courageous and an amazing mother and person. My thoughts and prayers are with you and your family.

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  10. dear anonymous #1 - you are a butthead pansy. that's all.

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  11. I think of you often and pray for the best possible outcome. Hugs!

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  12. My thoughts and prayers are with you Natalie. I have a good friend who's baby was diagnosed early in her pregnancy with a large growth on the back of her head that is 100% fatal. The doctors were completely mystified when a few months later, all traces of the condition were GONE. Today Faith is a happy, healthy, perfect 4 year old. I know you have to be prepared for anything, but not all hope is false, miracles do still happen. Much love to you, and peace that passes all understanding. ♥

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  13. Thank you so much for the update. As I am expecting myself I think about your and your baby often and admire your faith so much. You are so strong to have such a good sense of hope while still being realistic. Miracles do happen, and I can't think a a better person for a miracle to happen to.

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  14. I just want to send you a hug. You may never know why this is happening, I just pray for God's peace and comfort through all this. You are an amazing example of grace and love. Blessings to you and your family.

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  15. So sorry, Natalie! Having lost my sweet baby girl suddenly @ 38 weeks, I know a little what you're going through. I had such dreams and plans.... but God had other plans. Hang in there and take one day at a time. ~Mom to 3 boys and one sweet girl angel.

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  16. Oh my gosh. I can't imagine the turmoil your heart is going through. I am so sorry. You are right that everything will work out as it should but it doesn't take away the hurt and pain. You are in my prayers.

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  17. My heart breaks for you. I am so sorry and will continue to keep you in my prayers.

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  18. Natalie, this is so horrific, and I am also praying for a miracle for you. Just know that your readers are also your supporters and we're here for you!

    Serena @ ThriftDiving.com

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  19. This just sucks. I'm so sorry. Hang in there. You are amazing. Praying for you and your sweet baby girl. xoxo McKelle

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  20. Natalie, I admire your courage and strength so much ... my prayers remain with you.

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  21. I was going to go for a chicken, posting rude comments anonymously but butthead pansy works better.

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  22. ThinkIng about you and praying for you lots! You're such a great, honest, and real person. Thanks for being an example to many.

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  23. I was painting a dresser in my garage and thinking it would soon be too hot, that time was flying so fast and it made me think of you. I hope you feel others love and concern during this incredibly difficult time. Hugs-

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  24. You are in my families thoughts & hearts as I talk about you a lot to them. I can't imagine the struggles you've having to bare while still seeming like you're able to handle each day. Your truly amazing. And even more amazing to still be the wonderful mother to your children so they know they can rely on you.
    xoxo

    The PB&J clan

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  25. Love to you & yours, Natalie!

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  26. Natalie, I woke up in the middle of the night (sick kid) and was looking on my phone when I saw this. Went back to sleep praying for you. I am still praying for a miracle for you and your sweet baby. Lots of love.

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  27. Wow Natalie I can't even imagine. I went through losing a baby to a blighted ovum at 13 weeks but going full term knowing what you know, I just can't imagine. Enjoy every moment.

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  28. My thoughts are with you. You are a beautiful person filled with love and willing to give so much love. Despite the stupidity and ignorance of some of the comments, I hope you know many people you don't know are thinking of you and have a deep respect for you.

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  29. We're all rooting for you and sending our prayers for the whole family.

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  30. I can't imagine the emotional toll of hoping for a miracle one minute and preparing yourself for the unthinkable the next. My thoughts and prayers for you and your family continue.

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  31. Dear Natalie, After reading your blog for many months, I feel like I know you (and it doesn't hurt that I have a daughter named Natalie either). When you wrote about your pregnancy and then the devastating news about your baby, I prayed for you. Each day I check to see if you've posted and wonder about how you're doing when you don't. I am amazed you can write and share as much as you have. You are a good person that has touched many people with your internet presence. Whatever the outcome, God has heard our prayers, and given us answers, even if we can't understand why. You are right to feel sad and equally right to feel hopeful. This is truly your journey but may everyone's loving comments and prayers help you and your family along the way.

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  32. I think of you often and have been praying for you, sweet girl.

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  33. May God grant you peace through this. You are in my prayers. Check out this post in seriously just read it right before I read your post. It will encourage you:
    http://biblicalhomemaking.blogspot.com/2012/03/reaping-his-harvest-sweetness-project.html

    Please read it, it answered questions for me about if I lost any of my children.

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  34. I don't know you from Adam, only stumbled upon your blog awhile back because of my furniture obsession, but I have become emotional involved with you and your baby's circumstances. I am expecting and it just really hit close to home. I think you are awesome the way you are handling it, and the love it shows for your baby. I want you to know, though it's probably no comfort, that hearing what you are going through has made me so appreciative and thankful for the blessing of healthy babies. I think about this often now, whereas before I was a little oblivious and ungrateful. I hope and pray your journey is peaceful to the end. Thanks so much for sharing this very humbling and personal trial.

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  35. I will be keeping you, your baby, and your family in my thoughts and prayers. That child is very blessed to be tied to your family for eternity! xoxo

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  36. god bless you. you are in my thoughts and prayers.

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  37. You and your precious baby are in my thoughts and prayers.

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  38. Continuing to pray for you and your family. Such a difficult journey. It is so comforting knowing that you will have eternity with her in Heaven. Knowing that has really helped me with the loss of my baby girl. I really liked the book "Heaven is For Real" It just made Heaven feel a little closer and reconfirmed what I already believed. You may have heard of them before but I would also recommend the organization "Now I lay me down to sleep." They have volunteer professional photographers that will come take pictures at the hospital when she is born. They did a wonderful job for me and made a beautiful slide show. I really cherish those pictures. There are also websites that sell really special "micro-preemie" and "preemie" clothes. I really liked having something special for Lilly to wear when she was born. (I actually got 2 of the same- one for her and one for me to keep).
    Thank you for sharing your journey with us and know that you are not alone. ~ Erin

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  39. I think and pray for your family often I just recently found your blog when another I followed posted your news. Praying for your family to have strenght and clarity.

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  40. I just want to let you know that you're in my thoughts. I am so sad for your family, but there are some things that cannot be changed, no matter how difficult, and this is part of life. My prayers are with you through all of this.

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  41. I know this is a very difficult time for you. I am keeping you, your sweet baby and your family in my thoughts and prayers.

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  42. Oh Natalie. Your little girl is so special to come to your sweet family. Our thoughts and prayer are with you.

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  43. Praying for you and your family. I truly admire your strength, it's pretty amazing. Hopefully this isn't creepy, but we are in AZ also, if you need anything, dinner dropped off, play date at the park, you name it. :)

    Xx. Patience

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  44. Hi Natalie,
    I don't to give you false hope, I just want to share my friends story.

    My friend was told that her baby would not survive, she was encouraged to abort numerous times but did not.

    Mya was born with cancer, no functioning kidneys and a severe heat defect. She was on dyalisys just to stay alive. She has had open heart surgery, she has beat the cancer and just this past year she was finally healthy enough to have a kidney transplant.

    She will celebrate her 4th birthday in one week. She has her disabilities, however, these have not defined her. She is a vibrant inspiring little girl.

    I think about you daily and pray to God for you and you family.

    Be blessed,
    Lanna

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  45. Natalie, I am simply a fan of your blog, but your strength is nothing short of amazing. I will be praying for a miracle for your baby girl and strength for your family during this difficult time.

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  46. Natalie,

    Maybe you have conflicted feelings because you know that God does not cease to be a God of Miracles. Keep you faith. He knows what is best, and you just never know what may happen. Just look to God and live. Best wishes, we are all praying for you, and that whatever DOES happen is the will of God. Much love!

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  47. I'm so sorry. I know I'm just another comment of many on your blog, but I'm thinking of you and have shed a tear or two. Maybe because I can remember sorrow of our own- our first child was stillborn and our second died unexpectedly after 2 days because of medical mistakes. It is totally different from what you are going through, but sorrow is sorrow, tragedy is tragedy (although I am not sure I would call my own "tragedy")- and I am very impressed with your sweet attitude and willingness to accept something that you don't have the answers to in such a positive way. And I guess looking back at our circumstances with the first, I can definitely relate to having a false sense of hope that the baby will be fine, and struggling with the idea that if I just had enough faith, it would be so. It's a hard thing. Anyway, sorry for the book from a stranger- but you are thought about by those you don't even know....

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  48. You and your family have been in my thoughts so much since you announced the news of what was happening to your sweet baby girl, I think it is so brave of you to share this with all of us and I hope you know how many prayers and good thoughts are being sent your way. I know the odds aren't good but I'm a big believer in miracles!!

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  49. This comment has been removed by the author.

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  50. Hey there,I have been following your blog for awhile now. I just wanted to say something small about your pregnancy. GOD is the ONLY one who knows what the destiny of your little girl is going to be! Keep your head up & praise the LORD that he has given you this special gift. Prayer is VERY powerful & the LORD hears them all. Whether, he calls this baby girl home or gives you an incredible life with her he is there for you no matter what. My prayers are with all of you & through HIM you will find peace. <3

    For you created my inmost being;
    you knit me together in my mother's womb.
    I praise you because I am fearfully and wonderfully made; your works are wonderful,
    I know that full well. Psalms 139:13

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  51. I think as Latter-day Saints we often emphasize the eternal nature of families, and enduring to the end, and keeping hope and faith, but you know what? Sometimes it's okay to be just plain sad. I suffer from extreme post-partum depression (over a year with each of my girls) and I saw a touching "I'm a Mormon" ad by a New Zealand woman who herself suffered PPD. She said she finally realized that enduring is not the same as overcoming. we're asked only to endure. Not to triumph over sadness and struggle and come out on top once again. Just to endure. I never, ever thought about life quite like that. The only one who has truly overcome the world and its sadnesses is the Savior. He can help us and heal us, but he does not expect us to overcome our trials on our own. It's okay to be sad.

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  52. You and your family are in my prayers, i was encouraged by this blog http://thetrinitytransformation.blogspot.com/

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  53. Natalie,
    My sister found your website and thought that your situation reminded her of mine. I too have 4 children, 3 boys, 1 girl. I am currently in week 20 of my 7th pregnancy. I lost a little boy at 23 weeks due to what they believed at the time was Lethal Multiple Pterygium Syndrome. This little guy seems to be heading to the same fate. At 12 weeks because of my previous experience I requested and had a more thorough ultrasound so that I could be assured that all was well with this little one. Unfortunately, he showed signs of hydrops, clubbed feet and had a cystic hygroma. Since then, I have been going in for weekly ultrasounds to check the progress. He is currently in heart, lung and liver failure. He has little to no amniotic fluid around him and yet he continues to survive. They have done the chromosomal tests as well and have not found any abnormalities. There is nothing that someone can say that will make your situation better. Some days will be good and some won't be. Allow yourself to feel how you feel. It is okay not to answer the phone or clean the house sometimes. Do what you can handle and know that it is enough. Your kids will recover much faster than you will, no matter what the outcome. Just trust your instincts and don't let other people's word of "encouragement" get you down. If you need a friend, I would love to be there for you. There are so few people who can really understand what you are going through.
    Katie B

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  54. You're so brave to just carry that baby and love her and trust that God knows what He's doing. I'm praying for you your little one and your family.

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  55. Natalie,I am praying for your family! I can only imagine how hard things have been for you and your family in this difficult time. I know its hard to, but try to remember as much as a shock as this devastating news is for you and your family and to all of us that have read about it, none of it was a surprise to the Lord. God not only knew about this since before time began but God is confident and he has you in the palm of his hand, he knows every hair on your head and he loves you dearly. My family is praying for you and yours.
    Love always and God bless, Cherise Kaiser
    "There is not a pit so deep, that God is not deeper still" - Corrie Ten Boom

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  56. Natalie,

    Thanks for updating us, you've been in my thoughts a lot lately, and I hope you and your family will be able to feel peace through the rest of your pregnancy. Hang in there-

    xo, Jenna

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  57. Continued prayers for peace, patience, and strength, for you and your family.

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  58. I just want to let you know that our family have been praying for you and your family and we pray that God will bless you all richly and be with your soon to be addition...

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  59. Continued thoughts and prayers for your whole family.

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  60. Thinking of you today.

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  61. Praying for you and your family!!!

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  62. Praying for you Natalie, I can't imagine what you're going through, but I am keeping you and your family in my thoughts and prayers.

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  63. Oh , Natalie I can't imagine what you & your family are going through. You truly are a amazing example of strength. I hope & pray you continue to keep your faith & endure through this time. We are keeping you in our Prayers.
    Dee

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  64. Hi Natty....I've been a "follower" but never posted. I am so sorry for the trial that you are going through and pray that God will bring the comfort and peace you need, each and every moment you need it.

    I highly recommend this site http://angiesmithonline.com/ and Angie's book I Will Carry You.

    She experienced the loss of her sweet daughter Audrey and will be able to relate and offer some encouragement.

    My prayers are with you and your family.

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  65. Hi Natalie. I am sorry to hear of this news. I am fairly new to your blog...it's wonderful, btw. :) I too lost a pregnancy, not in the same way but still a loss. My water broke prematurely at 18 weeks. We just found we were having a healthy little girl and I was SOOOO excited as we already had a boy (our first). My little girl, I felt her kicks, I felt her life. No one else experienced it but me. Once my water broke I was sent home for the weekend to see if it might seal itself (as sometimes it does) but it did not. I too connected with my baby. She was a part of me, already a part of our family. I delivered that following Monday. I failed giving her a life. It will haunt me forever. Unfortunately, there is not a hallmark card to explain what you are feeling, what I felt. We have to lean on those loved ones around us and hug our children that much tighter and remember the lives around us and the blessing they have given us and will continue to give us. Bless you, Natalie. You are in my thoughts and prayers.

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  66. Hi Natalie, I am inspired by your soft spirit that comes through the computer as I read your posts. I wish I could hug you! Your a such a brave beautiful Mother and perfect for God's plan. I am trusting in his word for you and your family and lifting you up in prayer. Thank you for updating, as I have been wondering.

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