November 2016 Moms

My Update and Goodbye *tw*

Hey everyone, I wanted to check in to thank everyone who showed so much support and to wish you nothing but happiness in the months to come. As some of you may remember, my NIPT testing came back positive for Trisomy 21 two weeks ago. I was put in a position of figuring out how to proceed but that decision was ultimately made for me. And one day I'll be grateful for that.

We had an appointment Wednesday to meet with a genetics counselor and then have CVS testing done by my peri so we could confirm the diagnosis. During the ultrasound prior to the CVS, I stupidly remarked how quiet and still Gabriel looked on the screen compared to the week before but I just didn't get it. The peri quickly came in and told us that Gabe had passed, his little heart had stopped beating. He was measuring spot on at 13wks 3days so it had just happened. My peri strongly recommended a D&E instead of waiting to miscarry naturally so I had the surgery Wednesday afternoon. To say I'm devastated is the biggest understatement in the world. I love him with all my heart and miss him so much it hurts. I can't even look at myself right now because every time I see my flat belly it just overwhelms me with grief.

I will be keeping ALL of you in my thoughts and hoping for nothing but happy and healthy babies. I will also be peeking in come November to see your beautiful pictures. But I did want to share two things with you before I go.

The first is about the NIPT. When I received the positive result, my OB told me it was over 99% accurate and I took that as a fact. I was actually curious on why she wanted me to have CVS or amnio done if it was that accurate. In talking with the genetic counselor, that number is not always accurate. She said it can vary greatly based on your individual sample. She ran the numbers on mine and it was actually 87% predictive. Still horrible, but a 13% chance of error is a HUGE difference between a 1% chance of error. I say all of this to tell you that if you ever end up in my boat with a positive NIPT, please please please have diagnostic testing done before making any decision on how to proceed. In my case it didn't matter, but it could have. Greatly.

The second thing I wanted to bring up is tricky. I guess I'll approach it this way: thank you to each and every one of you who didn't tell me to embrace my "blessing" of a Trisomy 21 diagnosis. Fact is, I wouldn't wish this "blessing" on my worst enemy. Our genetic counselor talked with us quite a bit about what a Trisomy 21 diagnosis would mean. She brought up the point that media portrays Down Syndrome typically in the very best case scenario. We see people with Downs who model and go to college and get married and doing all the things that a "typical" life affords you. But those examples are not the typical outcome of a child born with Down Syndrome. Gabe had a 70% chance of fetal demise, 50% chance of being born with a major heart defect, was 10-15x more likely to develop leukemia and/or lymphoma, had a 72% chance of hearing and/or vision problems, an increased  risk of autism, a 50% chance of thyroid problems and could, at best, approach the IQ of an 8 yr old as an adult. And these were just the major things mentioned. I was told that he would experience finger pricks, shots, and blood collection approximately 100 times in his first year of life alone and we could anticipate hopsital stays every time he encountered a respiratory illness. It was going to be a hard life for my little man, at best. So my husband and I had spent the last two weeks of our lives agonizing: would it be better to bring him into this life or to terminate it? Could I actually sign a piece of paper terminating my child's life? Or could I envision myself as an old lady dying and my last thought being the agonizing question of what would happen to my disabled son once I was gone and he was left alone? And I can tell you I never experienced agony as I did trying to make that decision. In the end, although I'm still in a state of shock and blinding grief, I'm so glad I never had to make that call. With all of my heart, thank you to everyone for your compassion. It meant the world to me. And for you who sat on your high horse and advised me to embrace my blessing, I pray with all my heart you never have to experience this blessing. I hope you get to hold on to your precious healthy baby along with your lofty moral superiority.

All my love to each and every one of you. I'm really going to miss this place.
Me: 38 l DH: 41
Gavin - 8/27/10
*TW*
Gabriel - 2nd tri loss 5/17/16 Trisomy 18 & 21
Hope -  2nd tri loss 12/7/16 complications from pneumonia


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Re: My Update and Goodbye *tw*

  • I'm so sorry to hear this.  Thinking of you and your family...
    Me: 31 | H: 32
    Married September 2014
    TTC #1 December 2014
    RE appt 12/2015
    CD3 labs normal | HSG 1/8/16 clear | H's SA excellent
    Dx: Unexplained Infertility
    February 2016, cycle 16 - cycle #1 with Letrozole 5mg + TI | Progesterone=20.6
    BFP 2/24/16 - EDD 11/7/16
    It's a girl!
    Isla Quinn born 10/29/16 at 38w5d via C/S
    --------
    TFAS March 2018
    RE consultation 8/2/18
    Suprise! BFP 8/8/18 natural cycle | EDD 4/19/19
    It's a girl!
    Afton Noelle born 4/10/19 at 38w5d via natural VBAC
  • I am so very sorry for your loss and can not imagine what you all are going through. Prayers for peace and comfort during your time of grief.



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  • Thank you for sharing your story. I'm so sorry for your loss and My thoughts are with you during this time. <3
  • atcwagatcwag member
    Thank you so much for sharing your story. There are so, so many things to take into consideration in a situation like this, and I too find it prudent to not blindly assume the best possible outcomes. You are very strong and I certainly wish you peace as you continue this journey. 
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  • laecedlaeced member
    I cannot fathom your pain or hurt. Know that I'm wishing you healing and peace. Best wishes to you!
  • Thank you so much for this update. You've been in my thoughts and prayers these past few weeks, and you'll continue to be in the weeks ahead. I am so sorry you lost your precious son, and I hope you can find the time and the space to let yourself grieve. Much love to you and your family.
  • My love-it is a hug. I'm so sorry you're going through this, and I'm sorry for the insensitive comment you received. It's true that it's only portrayed in best-case scenario. I hope people learn something from your post and that you never have to go through anything similar again. Gabe was very loved. 

    BFP #1 10/30/15 MMC found 11/30/15 D&C 12/11/15 EDD 7/9/16
    BFP #2  3/21/16    Nora Mae born 12/6/16
    BFP #3 11/27/20    EDD 8/6/21
    healing comes in waves, and maybe today the wave hits the rocks and that’s ok, that’s ok, darling. you are still healing, you are still healing- Ijeoma Umebinyuo, be gentle with yourself


  • Sending you so much love and good thoughts. Your post moved me tears. Wishing you and your husband all the best and I sincerely hope your pain diminishes as time goes on.
  • I'm so sorry to hear this. My thoughts are with you and your family. I hope you one day take some comfort in the fact that your baby didn't have to endure any of those things listed above and all he ever knew was the warmth, happiness and comfort of your womb. 
    DS#1: born Dec 29, 2013 
    TTC#2 since Sept 2014 - unexplained secondary IF
    BFP #2: 11.7.14  M/C: 11.27.14 @ 6w3days
    BFP #3: 04.19.2015 M/C 04.27.15 @ 4w3days
    BFP #4: 10.05.2015 C/P @ 3w4days
    Oct 11, 2015: Cycle 13. Starting Femara (2.5mg). HSG this cycle (all clear) - BFN
    Nov 12, 2015: Cyle 14. Femara 5mg + IUI - BFN
    Dec 10, 2015: Cycle 15. Femara 5mg + IUI #2 - BFP #5! C/P 4w4d
    Jan 10, 2016: Cycle 16. Femara 5mg + IUI #3 - BFN.
    Feb 10, 2016: Cycle 17.  No IUI or meds. Taking a break - Natural BFP Mar 5, 2016!!!! EDD Nov 16, 2016
    Moving to IVF March 2016
    Beta at 10dpo: 21, Beta at 12dpo: 98, Beta at 14dpo: 264, Beta at 16dpo: 745
    U/S 6w6d: single beautiful heartbeat of 121bpm - It's a boy!!!!
    Nov 3, 2016: Our family became complete. Welcome DS #2.
  • Thank you for this update. I'll be thinking of you. I can't imagine the grief you feel and I'm so sorry you have to experience it. 
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  • Echoing pps, thank you so much for sharing and educating us all. We can't let ignorance and/or stupidity go unnoticed in a situation as delicate as this. Huge internet hugs. I'm so sorry you had to go through this and wish you all the luck in the future. 
    DS  12-1-2014
    DD 10-29-2016
    #3 due 10-13-2018
  • I've been praying for you and will continue to do so. You are incredibly strong in an incredibly messed up situation. Thank you for coming back to shed some light and educate those who are completely vile. I'll be praying for Gabriel and you'll be missed. Good vibes for fast healing for you, I'm sending lots of love your way.
  • I'm so, so sorry for your loss. You and Gabriel are in my thoughts and prayers.
    Also that was incredibly eloquent, especially for someone going through such unimaginable grief. I don't know that I would've had the strength to be so polite to those who told you to embrace the "blessing" of a T21 diagnosis.
    BabyFruit Ticker
  • SheybreSheybre member
    I'm so sorry. Praying for peace and comfort for you.  <3
  • So sorry to hear of your loss. Thank you for coming back and sharing your story and the vital information from your doctor. Best wishes moving forward, and we'll be thinking of you.


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  • lin0442lin0442 member
    I'm sorry for your loss. Currently sharing a similar pain, although my journey has been different, and I'm grateful for the strength you are showing now. Please take care of yourself, let yourself mourn, and I wish the best to you and your husband. 

    As @DunkinDecaf said, I'm not sure I could be so polite, but people like that really have no desire to understand the complexities and challenges of life, do they. I'm sorry, and my thoughts are with you. 
  • I'm so sorry. 

    Anniversary g
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  • Thank you so much for sharing your story. My heart is breaking for you!  I'm impressed by your grace under such difficult circumstances.  Please take care of yourself and lots of love.
    Age:  39 and holding
    Unexplained infertility
    NTNP: 10 years! 
    TTC: Since 2014
    5 IUI:  BFN
    IVF 1:  MC
    IVF 2:  BFP!  DD 11/20/16


  • leighryleighry member
    So sorry for your loss. Thoughts and prayers for you and your son.
  • thank you for updating us. My heart is with you at this time. 
  • Thank you for your incredibly articulate and thoughtful update. I can't imagine the grief you and your husband are feeling right now. We have all been keeping you in our thoughts around here. I hope you find peace sooner than later, and that you never have to experience something like this again. Wishing you and your H all the best for the future. Hugs. 

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  • I'm so sorry for your loss. I'll be praying for you and Gabriel. 
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  • RaeJ004RaeJ004 member
    I've been thinking about you and am happy you updated us, but was hoping for a better outcome. I'm so sorry you're going through this. I cannot even imagine the emotions you're dealing with. 
    Lean on DH during this time and know that we're all thinking about you both!
    BabyFruit Ticker

    Georgia 3/15/2012 Matilda 6/12/2014 TWINS!! Babies 3&4 EDD 11/22/2016
  • I'm so sorry for your loss. Thank you for updating us. Please take good care and give yourself time and space to grieve and heal. Big, big hugs to you!
    Me: 31, DH: 31
    Married: September 2012
    Began TTC: September 2015
    BFP #1: 10/12/16, EDD: 06/23/15,
    (pPROM, 16 wks + emergency D&E 12/31/15)
    BFP #2: 03/09/16, EDD: 11/16/16



  • Des321Des321 member
    Thank you so much for being so open about your situation. Good luck to you, I truly wish the best for you. Sorry you have to go through this. *hugs*
  • I am so sorry for your loss. Thank you so much for sharing your story. Sending love and prayers for you, your H and your son. 

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  • I'm so sorry that you are going through this. You've been in my thoughts and prayers and will continue to be. You are so strong for sharing your story in such an eloquent and thoughtful way. I hope you are able to find peace.
  • I'm so sorry for your loss and that you've had to experience all of this heartache. My thoughts and prayers are with you and your family. Thank you so much for sharing your story and knowledge that you have gained from the genetics counselor. It was very touching and so informative about the realities of the disability. I wish you the best.
  • msu_galmsu_gal member
    Thank you for sharing your story in such a thoughtful and heartfelt way, as hard as I can imagine that was for you.  I can't imagine having not experienced what you've been through, but I'm sending thoughts and prayers to you and your family during this time. 
    Lilypie Pregnancy tickers
  • I'm so sorry for your loss. Thank you for sharing your story. It was so beautifully written. My thoughts are with you and your husband during this difficult time.
  • I'm so sorry for the loss of your son Gabriel.  If there are any support groups in your area, I recommend checking them out.  Sending thoughts and prayers to your family in this time of intense grief.  So many internet hugs, amazing mama.
    Lilypie Angel and Memorial tickers
                                        motheringcarolinegrace.wordpress.com

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  • MollySmMollySm member
    I am so sorry for your loss.  Thank you so much for all of the wisdom you took the time to impart during such a period of grief.  I will be thinking of you.  
    BabyFruit Ticker

    BFP 3.8.16  EDD 11.20.16

    image

  • Thank you for the update and your eloquence. I send a big hug and many condolences to you. 
  • My heart aches for you and your family. Thank you for having the courage to share your heart with all of us. I wish you the absolute best of luck going forward, we will certainly miss you.
  • You are in my thoughts and prayers.  <3
  • banfrogbanfrog member
    So sorry for your loss. You are in my thoughts and prayers.
  • I'm so sorry that you are going through this. I will keep you in my thoughts and prayers.
    Married since Jan 2013
    Sweet DD born at 41 weeks Feb 2015
    *Diagnosed with lean PCOS*
    TWINS due 11/22/2016



  • I am so so sorry for your loss. I can't even begin to imagine the number of emotions you have gone through these past few weeks. 

    DD: 8/20/14; DS: 11/13/16; DD: 5/3/19; DD: 8/31/21; Baby #5 (team green) due 3/24/24



  • I've been thinking about you frequently over the last couple of weeks.  I'm so so sorry that you are going through this but I echo PPs and thank you for sharing your story with us.  Prayers for you and your family.
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