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Rileys Results.

SockMonkeySamSockMonkeySam member
in Parenting after a Loss

I don't know how many are on FB or seen my posts.

We got Riley's MRI results back Wednesday night. She has been diagnosised with Mitondrial Diease. It's in her brain stem, and there is no cure. I am still having a hard time accepting this for her and the long road that we will have with hosptial says and treatments to slow it down. I don't know how much time we have with her, I was told between months to years. But age range we are looking at maybe having her until 6-7.

My heart is breaking, I can't lose another child, I don't want to lose another child. It's not fair to her to suffer.

Once I have more information, were waiting for Children's in Boston to call us back, Ill try to come back and update.

Please pray for our family.

 


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    martinimommamartinimomma member

    Oh Amye, I am so sorry to hear this.  Sending T&P for strength and healing to you and dear Miss R this morning. 

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    BFP #1 5/2010 - Missed m/c at 8 weeks
    BFP #2 2/2011
    Baby G welcomed with love and relief 10/2011
    Surprise BFP 1/8/2013...say what? Baby A arrived 9/2013

    Motherhood is not for wimps

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    Mmm79Mmm79 member

    Oh, God.  I am so, so sorry.  I have been thinking about you and wondering how your appointment at Children's went on the 27th.

    This is so incredibly unfair to you and your beautiful daughter.  And to your entire family.

    You and your family will be in my thoughts and prayers.  Please let us know if we can do anything.

     

    And this may sound like an odd offer, but I work part time in Boston.  If you are ever at Children's and need anything- coffee, food, anything- please feel free to reach out.  You can PM me and I can let you know how to get in touch.

     

     

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    BFP#1 11/12/11 ~ No heartbeat 12/12/11 ~ D&C 12/19/11
    BFP#2 3/25/12 ~ Heartbeat 141 4/16/12 ~ No heartbeat 4/25/12 ~ D&C 04/30/12 
    BFP#3 7/16/12 ~ EDD 3/26/13 ~ It's a BOY ~ DOB 2/26/13






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    ProfessorPedals825ProfessorPedals825 member
    I'm so sorry you're having to face this.  I'm sending lots of thoughts and prayers your way.  Please let us know if there's anything we can do to help.  ((HUGS))

    *** aka: andreahshields ***

    *** July Siggy Challenge - Cake Wrecks ***

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    BFP#1 3/8/12; diagnosed w/ Anencephaly at 12w6d; D&C 5/9/12
    BFP#2 7/18/12; A/S 10/26/12 It's a Girl! EDD 3/29/13
    Phoebe Jordan Born 3/20/13

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    4legsRbest4legsRbest member
    I am so sorry to hear this. You are in my thoughts and prayers. I am sending you and Ms. Riley strength to handle her treatment. I am hoping for a miracle for your family. Many many (((hugs)))!
    Me: 37 DH: 40 TTC since 9/09
    #1 BFP 1/10/11; missed m/c discovered 7w5d
    IF Dx: Endo, hetero MTHFR mutation, poor morphology
    #1 IUI: 1/18/12 = BFN
    #1 IVF/ICSI 4/2/12 = 2 x 7-cell and 1 x 5-cell transferred (3dt) = BFP!!
    H was born at 41w2d on 12/29/12 - be still my heart!
    #2 IVF/ICSI 1/19/14 = 2 x 8 cells transferred (3dt) = BFP!! EDD 10/09/14
    M&W born at 37 weeks on 9/18/14 - I am the momma of 3 boys!!!

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    FmrAFBratFmrAFBrat member
    ((HUGS)) I am so sorry to hear this. Your family will be in my thoughts and prayers. You are so strong and amazing and you do not deserve this. It's just so unfair.
    TTC January 2010
    BFP #1 10-11-10 ectopic discovered 10-22-10, 10-23-10 methotrexate & emergency surgery, lost right tube BFP #2 12-1-10 Found to be tissue dropped from salingectomy or missed heterotopic pregnancy from BFP #1 BFP #3 1-30-11 DS arrived on due date 10-10-11 BFP #4 Surprise 9-3-12 EDD 5-9-13 DS2 arrived 5-5-13 BFP #5 5-14-14 Emergency D&C 6-16-14 9 weeks
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    km_mdkm_md member
    I don't even have the words to express how sorry I am. Sending you and your family lots of love and t&ps ((hugs))


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    BootsOrHeartsBootsOrHearts member
    I'm so sorry you are dealing with this. It's not fucking fair at all. I hope you are getting good support from your friends and family members, lean on the people who love you to help you get through.

    ((hugs))
    **Warning: Losses and living child mentioned**
    BFP#1 1/31/12, EDD 10/6/12 Harrison Gray born sleeping @ 18w6d. You changed our lives little guy.
    BFP#2 EDD 10/29/13, C/P 2/25/13, Bye little Ish, we barely got to know you.
    BFP#3 EDD 12/21/13, Baby Boots born 11/23/13 My rainbow baby!
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    January PAL Siggy Challenge: Good Advice
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    KikiCohenKikiCohen member
    Oh no :(  I am so, so sorry to hear this news.  You will all be in my prayers. I am absolutely heartbroken for you.
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    daisy19782011daisy19782011 member
    My heart is breaking for you. You are in my thoughts and prayers. I am so sorry.

    Ticker/Siggy Warning:  Children and losses mentioned


    TTC #1 since 7/2011
    ME: 37  DH: 38
    SA-12/28/11-normal
    HSG-1/16/12-possible blocked left tube
    BFP#1---CP 7/9/12
    Hysteroscopy-8/9/12-blocked left tube for sure, proceeding with IUI#1
    IUI#1 (Gonal-F + trigger)=BFP#2 m/c @ 19w1d D&E 1/23/13
    IUI #2 (Gonal F + trigger)=BFP#3 EDD 1/6/14 TWINS!!!
    Identical girls born 11/17/13
    BFP#4 EDD 8/27/15 MMC at 7w6d

    BFP#5 m/c at 6w

    BFP#6 EDD 10/5/16  Going Strong!  It's a Girl!

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    NBBride05NBBride05 member
    I am so incredibly sorry!!! Your family will be in my thoughts and prayers. Sending you big HUGS!!!
    May PAL Siggy Challenge - Mom Humor
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    TTC Since June 2009 
    BFP #1 - 1/15/12, EDD 9/21/12, Missed M/C - 2/10/12 - I miss you Sapphire!

    BFP #2 - 7/1/12 - Met my lucky charm Alexandra on 3-16-13!!!


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    AL always welcome! 

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    katharine25katharine25 member
    Oh no. Just no. How can the universe throw you so much shit and expect you to get through it?? I'm so so incredibly sorry
    Married My Love on 6/18/2006
    BFP#1 10/1/2011. Our perfect little girl, Her heart stopped @ 12w1d. D&E 11/23/11
    BFP#2 3/13/12 Weird CP/Possible EP @ 6w0d
    BFP#3 5/28/12 CP @ 5w0d
    BFP/WTF#4 10/26/12 CP
    BFP#5 12/10/12 EDD 8/23/2013
    <3 Baby Boy Born 8/22/13 <3
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    ShaungelaShaungela member
    I am so so sorry Amye!  I dont even know what to say.  You were and always will be in my prayers!
    ~Formerly~AngnShaun~

    ~~Transferred 2 Perfect Embryos 5/28 - BFP 6/4~~ HAILEY ELIZABETH ~2/16/13~ 6:39am ~ 6lbs 2oz ~ 20" long ~ 1 Year ~ 20lbs 14oz ~ 29.25"~
    ~10.10 Ectopic, 4.11 Nat m/c 9w, 8.11, 1.12, 3.12 CPs~

    Follow Me on Pinterest

    Angela's book recommendations, liked quotes, book clubs, book trivia, book lists (100-in-2012 shelf)
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    Ladiebug710Ladiebug710 member
    Many many Ts&Ps for you and your family.

    Baby Birthday Ticker Ticker

    Baby Birthday Ticker Ticker

    BFP#1 10 wk missed mc      

    BFP#2 DS born at 40+2 on 8/14/12  BFP#3 DD Born at 39+3 on 5/13/14

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    NoeliaVNoeliaV member
    I am so so so sorry. Thoughts and prayers for you, your family and, especially, sweet Riley.
    (((((hugs)))))
    Baby Birthday Ticker Ticker
    BFP: 12/20/13 EDD: 08/23/14 (discovered m/c at 8w5d)
    BFP: 09/22/14 EDD: 06/06/15 (hoping for our rainbow)
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    OSUWifey09OSUWifey09 member
    I'm so, so sorry - wish I had more to offer than that. Sending lots of hugs and prayers for you all.
    ________________________________________________________________________________


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    melly918melly918 member
    Oh, dear. I am so sorry. This is heartbreaking. You will always be in my thoughts and prayers.
    DS born 2009
    BFP#2 ~ 8/2/11, EDD 4/11/12, D&C 9/12/11 at 9w5d
    BFP#3 ~ 4/15/12, EDD 12/21/12 ~ DD born 12/22/12
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    adoxyinherearadoxyinherear member
    My heart is just breaking for you and your family. You're all in my thoughts.
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    imageimageimageTTC since 07/11 | natural m/c 08/11 | BFP 12/6/2011 | Elinor Anna born 8/18/2012 | BFP #2 1/16/2014
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    Laurakat81Laurakat81 member
    Words fail me. I cannot even begin to make sense of this and my heart is breaking for you and your family. I'm just so sorry.

    [spoiler] My Blog: Grow Baby Grow

    BFP #1: 12/2009 m/c 1/2010 BFP #2: 6/2010 m/c 8/2010

    BFP #3: 10/2011 ectopic 11/2011 (right tube removed, learned left tube was probably nonfunctional due to scar tissue from infection after m/c)

    3 failed IUIs, IVF #1: 18R, 12M, 10F, 3 poor quality 5d embryos transferred= BFP #4!!!!!

    Betas: 9dp5dt: 64 ~14dp5dt: 91 (expecting miscarriage, doubling time of 236 hours) ~16dp5dt: 200~18dp5dt: 500

    First Ultrasound at 6w2d revealed two sacs, only one with a heartbeat

    LK arrived after 42 weeks on August 14, 2013! Beautiful, healthy, and happy!

    TTC#2: IVF booked for April 2015

    Surprise BFP#5 February 19, 2015 EDD: November 2, 2015

    Betas: 10dpo: 10, 14dpo: 77, 17dpo: 270

    First Ultrasound at 5w1d showed a miracle UTE baby! And right ovary ovulation to left fallopian tube.

    JD arrived at 38 weeks on October 20, 2015.

    TTC #3: Since October 2017. BFP #6 July 2, 2018 EDD: March 16, 2019 [/spoiler]


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    MJM3108MJM3108 member
    Words are not enough to express what I want to say. My heart is just breaking for you, your family, and sweet Riley. I will be lifting you all in prayer. I am so sorry.... 
    PAL JULY SIGGY CHALLENGE: CAKE WRECKS
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    Ticker id: ARvP

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     Lilypie - (KAFM)

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    KJsbabeKJsbabe member
    I'm so incredibly sorry. Many continued T&Ps.
    photo e9455f4d-9751-469e-a19f-460104cd2e5c.jpg photo jan15.jpg
    BFP #1 5/20/10 Natural MC at 5w4d 5/28/10
    BFP #2 11/3/10; BO at u/s 10w6d 12/16/10; Natural MC 1/7/11; D&C 4/21/11
    BFP #3 10/27/11 Please stick, LO!! 2/6/12 It's a Girl! Alexis Grace born 6/29/12
    BFP#4 4/27/14 Stick, stick, stick!! 8/11/14 It's a Boy! Evan Wesley born 1/8/15
    "Patience is waiting. Not passively waiting. That is laziness. But to keep going when the going is hard and slow, that is patience."  Let it Be (blog) ♥ My BFP Charts
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    This time I'm not leaving without you.
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    stefugestefuge member
    I am so sorry for such unbearable news.  I will be praying.
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    Lilypie Angel and Memorial tickersLilypie Kids Birthday tickers

    Me: 32 DH: 33  High School Sweethearts  Married 5/28/2005
    DS1 born 6/5/10 at 40 weeks via emergency c-section due to fetal distress and IUGR caused by placental insufficiency
    DS2 born still 8/28/13 at 32 weeks via emergency c-section due to a complete placental abruption - cause unknown
    Baby #3 on the way, EDD 2/29/16.  Originally twins, but we said goodbye to Baby B at 8 weeks.
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    Mom2anAngel2Mom2anAngel2 member
    Many T&P's coming your way.  I can not image what you are going through right now.  I am so sorry you have to deal with this, especially after everything that you have already been through.  ((MANY HUGE HUGS))

    Lilypie Angel and Memorial tickersLilypie - (B9PH)

     

    Lilypie - (0YVF)
     TTC since 11/2009; Lap/HSG/Hysteroscopy: 5/2011 (endometriosis - removed; endocervical polyp - removed; high pressure in bilateral tubes - cleared)

    BFP #1: 8/4/11; DS1 born sleeping on 11/16/11 at 19w1d

    BFP # 2: 5/7/12, EDD 1/10/13, DS2 born 1/4/13

    BFP # 3: 11/8/13, EDD 7/17/14, mmc 10wks

    BFP # 4: 5/16/14, EDD 1/15/15, praying for our 2nd rainbow baby 

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    JulyMomma2U2JulyMomma2U2 member
    My heart is breaking for you and your family.. I can't imagine the devastation this diagnosis brings.. my thoughts and prayers are with you and your family, and of course your sweet Riley.. I truly do believe in miracles.. and I'm praying that a miracle finds you and your precious daughter.
    Loss #1: 18w5d.. D&E 04Mar03 BFP #2: Jun2011.. missed miscarriage. D&C 08Jul2011 8w4d. BFP #3: Nov2011.. Our Rainbow Baby!!! DS Born: 15Jul2012! BFP #4: Nov2012.. 2U1 - DS2 born 12Jul2013.  BFP #5: 01Jan2014..3U3!!

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    crystal8503crystal8503 member
    I can't begin to find a single thing to say. I am so sorry Riley is struggling and will pray for your family. 
    BabyFruit Ticker

    BFP #1 - 12/12/11 - Missed M/C 1/9/12
    BFP #2 - 4/5/2012 - Son Born 12/12/12
    BFP #3 - 2/2/2014 - EDD 10/16/2014
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    FreyaWin2382FreyaWin2382 member
    I am so so sorry.
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    FishNchips1FishNchips1 member
    I am so very sorry. Lifting your family In my prayers..
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    4-7-11 - Natural MC @ 4w5d 6-27-11- MC @ 5w6dPgAL/PAL WelcomeDD#1- 8/20/2010DD#2- 6/21/2012EDD #3~ 5/1/2014 ~ Team Green
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    karebear57karebear57 member
    I am so, so sorry to hear this! I remember you from the loss board a couple years back. (((((hugs))))) I can't even imagine. I'm just so sorry. I'll keep you and your family in my thoughts ♥
    Tim 12/30/00 Brad 4/30/02 Alex 9/29/03 Lilypie Angel and Memorial tickers
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    karebear57karebear57 member
    I am so, so sorry to hear this! I remember you from the loss board a couple years back. (((((hugs))))) I can't even imagine. I'm just so sorry. I'll keep you and your family in my thoughts ♥
    Tim 12/30/00 Brad 4/30/02 Alex 9/29/03 Lilypie Angel and Memorial tickers
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    chusumchusum member
    This is incredibly unfair, I am so sorry your family is facing such a difficult diagnosis. I will pray for you and Riley.

    image
    Married August 9, 2008
    TTC Since September 2009

    1st   BFP | EDD 10/23/10 | Natural M/C 03/27/10 | 10w 0d
    2nd BFP 06/26/10 | EDD 02/25/11 | Natural  M/C 07/17/10 | 8w 1d
    3rd  BFP 12/17/10 | EDD 08/24/11 | Natural M/C 12/31/10 | 7w 4d
    4th  BFP 06/22/11 | EDD 02/25/12 | M/C D&C on 07/27/11 | 9w4d
    5th  BFP 09/17/11 | DD Paige Lily born 05/16/12
    6th  BFP 08/11/12 | EDD 04/11/13 | CP
    7th  BFP 09/29/13 | EDD 06/04/14 | Natural M/C 10/27/13 | 8w1d
    8th  BFP 12/16/13 | EDD 09/01/14

    DX: Pericentric Inversion of Chromosome 8 & compound heterozygous for MTHFR mutations
    RX: Lovenox/Heparin & Folgard

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    ellebelle2384ellebelle2384 member
    Sending so many thoughts and prayers.  You have been through more than anyone should ever have to go through already.  I will keep sending strength and good vibes towards you and Riley. <3
    Me: 31     DH: 33
    Dx: Me: Recurrent Pregnancy Loss; DH: Low Morphology (2%)
    BFP#1: MC 3/1/11 at 6w1d - EDD 10/21/11
    BFP#2: 5/3/11 - EDD 1/9/12 - DD Born 1/6/12
    image
    TTC #2 since 12/13
    BFP#3: MC 2/8/14 at 4w5d - EDD 10/13/14
    BFP#4: MC 5/6/14 at 4w4d - EDD 1/9/15
    BFP#5: MMC discovered 8/4/14 at 9w1d - D&C 8/5/14 - Baby Boy with Trisomy 16 (maternal origin) - EDD 3/8/15
    BFP#6: CP 11/6/14 at 4w2d - EDD 7/14/15
    IVF #1 with ICSI & PGS: May/June 2015, ER 6/3/15, 17R/17M/15F
    IVF #2 with ICSI & PGS: July 2015, ER 7/16/15, 16R/11M/9F
    PGS results = 6 normal embryos (4 boys, 2 girls)
    FET 9/23/15 = BFFN
    Natural FET 11/4/15 = BFP!
    Beta 9dp5dt = 92

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    cmumamacmumama member
    I'm so sorry. My heart is breaking for you and your family. I will keep you all in my prayers.
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    Adam2010Adam2010 member
    I am so sorry. Wrapping you in giant squishy hugs ♥
    Lilypie - Personal pictureLilypie Fourth Birthday tickers
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    TTC #2 Since October 2011
    RE testing results: DH- normal ME- DX:PCOS and One copy of MTHFR gene
    IUI#1 Sept/Oct 2012-Follistim, Ovidrel, Metformin, Baby Asprin, Lovenox, Crinone, and Neevo Beta 10/24=BFN
    No 2nd IUI but instead TI with Metformin, Baby Asprin, Neevo and Prometrium
    BFP #4 5/4/13-EDD 1/19/14- grow little one, grow!
    Beta #1@15DPO HCG-95, progesterone-25 Beta #4@24DPO HCG-2498, progesterone-30, 1st U/S 6mm,133BPM 2nd U/S 1.6cm, 167 BPM
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    bluebonnetmegbluebonnetmeg member
    Again, I am so so sorry. I hope that the treatment plans work and you have sweet Riley for many more years. My heart hurts so much for you and your family. "Not fair" doesn't even begin to cover it, but she is so lucky to have a mom like you for the time she does have. ((hugs))
    BFP#1 12/18/10 EDD 8/28/11 | 2/14/11 discovered that our baby girl had anencephaly D&C 2/17/11 at 12.5 weeks | no O or AF post loss - Dx: AO + mild PCOS = secondary infertility Provera after 70 days = AF but no O | Provera + 50mg Clomid after 110 days = AF but no O 3 rounds of 100mg Clomid + Estrogen + Progesterone = mixed O results, all BFN hysteroscopy 1/6/12 - removed fibroid tissue injection cycle #1 - 75 IU follistim + ovidrel (triggered 2/9/12) + endometrin = BFP! EDD 11/3/12 | Beta @ 13dpo = 184, 17dpo = 993, 26dpo = >5000 IT'S TWIN BOYS!! Tommy and Charlie arrived on 9/10/12 after less than 6 hours of labor at 32 weeks Image and video hosting by TinyPic Image and video hosting by TinyPic Image and video hosting by TinyPic Lilypie Premature Baby tickers
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    fallfeverfallfever member
    Many T&Ps for your family. ((Hugs))
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    EIsieMaeEIsieMae member
    I am so, so sorry. You and your family will be in my thoughts and prayers.
    BFP #1: 5-14-2010, DD born 1-22-2011
    BFP #2: 4-20-2012, Natural MC 5-1-2012
    BFP #3: 7-19-2012, DS born 3-27-2013
    BFP #4: 9-13-2014, MMC discovered 10-27-14 at 10w, d&c on 11-6-14 

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    anitafloraanitaflora member
    Sending so many prayers for you and your family. I am so sorry you're going through this. There are no words adequate enough for this but please know you and your family will be in my thoughts.

    dream 1 CAME TRUE 2.13.2010


     <dream 2> 12.2011


     2.10.12 : 4 weeks


    6.17.12 : 10 weeks


    10.10.12 : 4 weeks, 6 days


    12.13.12 : 9 weeks, 1 day


    4.6.13 : 4 weeks, 4 days


    10.27.13 : 5 weeks, 6 days


    4.2.14 (IVF #1) : 4 weeks, 1 day


    6.19.14 : IVF #2 Negative


     </dream 2>


     resolve.org


    AMA, Diminished Ovarian Reserve, heterozygous MTHFR


    "all it was was a fairytale and devotion to a dream"

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    ravenclaw1ravenclaw1 member
    I'm so sorry for you and your family :(
    BFP #1 - Mango - 6/11/12, EDD 2/22/12 Natural MC 7/15/12
    BFP #2 - Nacho - 10/14/12, EDD 6/20/13, MMC 8 weeks, D&C 11/16/12
    All testing shows both H and I are perfectly normal. Baby Nacho had triploidy. 
    Back to normal business December 2012
    BFP #3 - Froggy - 1/15/13, EDD 9/27/13 TEAM GREEN
    It's a girl! Alice - Born 9/20/13, 8lbs 2oz

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    HopingforChangeHopingforChange member
    I am just so sorry and am praying for your family.
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    QuigleyCat1QuigleyCat1 member
    Prayers for your sweetheart and your entire family.  I'm so sorry, and I pray for as much time as possible.  (((hugs)))

    Lilypie - (dLe1)

     

          ***BFP 1-22-13, baby boy dx with Trisomy 13 at 15 weeks.

           We let him go to Heaven on 4-27-13 at 17 weeks 1 day***

     Lilypie - (AW2u)
     

     Lilypie - (L84X)Lilypie - (D4Hj)

     

     

     

     

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    Aubs0009Aubs0009 member
    Oh Ayme this is so unfair for you and her. I am sending some many thoughts and prayers your way. ((huge hugs))

      Rylan 1/27/2011, 2:42 pm, 5lbs 12oz, 18.5 inches long
     Ayla 10/02/2013, 10:14 am, 6lbs 14oz, 19.25 inches long
    Missed Miscarriage 6w3d 3/02/2010
    I'll hold you in my heart until I hold you in heaven    .

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