Wednesday, March 19, 2014

Bad things certainly happen to good people.

Thank you all so much for the outpouring of love and support here and especially on facebook. It is so appreciated through all of this.

Unfortunately, after our appts with the specialists today, I do not have good news to report. It looks like we are going to lose our beloved little baby as it has severe mental and physical deformities.  

*~*~*~*~WARNING: The next part is very graphic so stop here if you don't want to read it and skip to the end~*~*~*~*

Although our integrated genetic screening revealed very low risk, we hit the bad luck jackpot and our baby has severe Spina Bifida (a neural tube defect that does NOT run in either of our families). Most of the baby's spine is wide open which has caused irreparable nerve damage and it has severe brain deformities with 'water on the brain' (hydrocephalus). The head is misshapen due to the brain defects and our little Petey is paralyzed from the waist down with malformed legs and feet. S/he also only has 1 partially functioning kidney. 

(There may have been more issues but those are the main points.  I stopped listening when the doctor said this is one of the worst cases he has ever seen and that he has never seen a positive result from a case like ours.  We are a "case".)

In other words, today we were informed that our sweet baby who we worked so hard to create and who represented a happy future and an end to a difficult past is not going to make it.  The prognosis is that it will die in the womb at some point, the doctors just can't give us a definite on when exactly. If it somehow makes it through towards the end, I will deliver prematurely and it will die at birth.  Experimental fetal brain and spinal surgery would be useless. We were given the option to either terminate the pregnancy within the next couple weeks or let it run its course and I will end up having full extended labor and deliver a stillborn.

*~*~*~*~OK, safe to read again~*~*~*~*

I don't even have words for how I feel. I am absolutely shattered.
It still doesn't feel real and I honestly have no idea how I even just typed all that out.

Hubs and I have some very difficult discussions and decisions ahead of us and I don't know what will happen.  I also don't know yet if I'll post here again for a while or not. Usually I use this blog as a sounding board but I'm not sure if it'll be cathartic or too hard for me.  If I'm not around much, know that I truly appreciate all the thoughts, prayers, love and positive vibes sent our way. If you could please continue to keep us in your T&P I would appreciate it.






17 comments:

  1. This comment has been removed by a blog administrator.

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  2. Love you so much. Sending so much love your way. I am so so sorry.

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  3. I'm so very sorry and sad for your family...I know now isn't the time but I am a mom to a little girl who had a almost fatal diagnosis her only chance was one of a miracle...if I can help if you need to say the things your great are saying the good the sad the ugly I will be her. I have regrets and would be happy to sha

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  4. I am sorry my comment auto corrected and cut a lot off, my email is bntwillow at yah Oo dot com

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  5. I am so, so, so sorry. There are no words to explain how sad I am for you. Sending all my love to you, your husband and Petey

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  6. Oh chickin, I am so, so sorry. This is heartbreaking.

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  7. I wish there was something I could say that could take away even a small part of the pain you are feeling, but there are no words. I am so so sorry that you are going through this. I am keeping you and your husband and your precious petey in my thoughts and prayers. <3

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  8. I am just so beyond sorry that you are going through this Chickin. I'll be thinking of you so much. Sending much love and hugs. XOXO

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  9. oh chickin, my heart is broken for you! I have tears in my eyes, I just can't even believe it. I'm so so sorry that you & your family are going through this. Anything you need at all, we'll be here for you. You have all my love & T&Ps. <3

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  10. Chickin, my heart aches for you and your husband. I am so sorry that this is happening and will continue to send you love and hugs and pray for strength and peace for you and your husband and whatever decision you make. There are no words to help take away this pain but I hope that you can find a little comfort in knowing that all of your TB and IDOB ladies are here for you when you are ready to talk and are sending you massive amounts of love and thoughts and prayers.

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  11. Oh Chickie....I can't express how sorry I am. The tears are just flowing down my face reading this post. I can't believe you are going through this after everything you guys have been through. It isn't fair...it's just not fair.

    You are definitely in my thoughts and prayers. I am sending enormous ((((((((hugs)))))))) your way.

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  12. I am so sorry to hear all of this. Will be keeping you all in thoughts and prayers.

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  13. I lost my daughter last December to an infection I didn't know I had until my 20 week appts. We knew she wouldn't make it to full term to deliver and had some very tough choices to make. I also live in NH so theres a chance we see the same MFMs. Please contact me if you want to talk or vent. The days and weeks following our decisions were the toughest of our lives, but if I was able to be an ear for someone and somehow help it would be an honor. You are embedded in my thoughts and prayers right now.
    Lynn lmstaloney@yahoo.com

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  14. I've been trying to find the right words but there really are none. All I can say is that I am so incredibly sorry for what you are all going through. Please know that I am here, for anything you need. I love you more than I can say and I am keeping you, your H and Petey in my thoughts and prayers, and sending all of my love your way. <3

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  15. I am so sorry. I will keep you in my thoughts

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  16. I am so sorry for what you are going through. I will be keeping you guys in my thoughts and prayers. Sending you so many hugs and so much love <3

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  17. My heart broke hearing this. I am so sorry sweetie. Thoughts for eventual peace for you and your husband. Hold on tight to each other during this. <3

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