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XP: Update on Baby Boy

The last two weeks have been scary and full of tests. We have spent around 15 hours in the last two weeks at Lucile Packard Children's Hospital at Stanford. Today we met with the Pediatric Neurosurgeon. 
The surgeon says our baby has Meningocele, which is the least common and least severe forms of Spina Bifida. Our baby does have a defect in his Neural tube but it is small and covered by skin (which is why I passed the screening test). The Dr said our son has the best 3-5% of all cases. 

The defect happened the first few weeks or pregnancy. The defect cant get bigger or worse. It is just a gap that didn't close. He has no nerve issues.

He will need surgery to fix this. They don't know when and won't until he is born. If this hole is completely covered and no spinal fluid is leaking he can wait until he is a month old. If not surgery will be in the first 48 hours. 

His long term prognosis is excellent. The Dr said cases like this have no impairment to movement or bowel function. Many cases of Spina Bifida can cause damage to the brain. Our sons cases is NOT one of those. His brain looks normal. Everything else besides this one defect is normal. 

The Dr said "You are one of the lucky ones. Most cases do not have a happy ending but your baby does". 

Needless to say I cried for much of this consult. 

There is nothing else that be done now. Now we wait until he born, likely at 38 weeks via c section. Once born he will be taken to NICU right away for evaluation with the surgeon. The surgery part is scary but I cant think about that right now. 

I am so relieved his is a mild case. yes, this will be a rocky start but to know some day he will run around a playground means everything to me.  Now I can imagine a happy future for him.

I appreciate so much all the prayers, kind words,phone calls, good vibes. It has meant the world to me know we have people pulling for us. Thank you so much from the bottom of my heart.
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Re: XP: Update on Baby Boy

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    I'm so glad it was the best possible outcome, and wish nothing but the best for you all when he arrives!
    10/10: Married; 5/11: Dx: Blocked Fallopian Tube; 7/11: D&C/Hysteroscopy to remove polyp
    IVF #1: 9/11: ER: 12R, 11M, 10F, No Frosties; 5dt: 2 blasts, 1 morula; DD born 6/3/12
    IVF #2: 11/12-12/12: ER: 20R, 20M, 16F, 4 Frosties; 5dt: 3 blasts, DS born 8/9/13
    Baby Birthday Ticker Ticker  Baby Birthday Ticker Ticker
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    Oh what good news! Thank you for giving us an update. I was just wondering how things were going, and it sounds like this is a great outlook for your son.
    Married 8/2008. IVF with PGD March 2013.
    3/22 ER: 25R, 20M, 15F. 9 genetically normal, and 3 survived to Day 5
    3/27 ET: transferred 1 embryo, beta 9dp5dt=163, 12dp5dt=639
    4/25 1st ultrasound at 7 weeks = identical twins with heartbeats?!!!
    PPROM at 31w, delivery at 32 weeks of two beautiful girls
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    I am a lurker who has been following your story.  I am so happy that the prognosis is good and he has one of the least severe forms.  Even with that good news, I can't even imagine how rough this must be.  Best wishes to you and your family.  You are in my thoughts.

     

    IF, 5 losses, 1 son, 1 on the way.
    fall in love with someone Pictures Images and Photos  photo turtlejpg
       

    Lilypie Pregnancy tickers
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    Wish you the best. It is and will be tough, but what a relief to be in that 3-5%. Healthy wishes to you and DS.
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    Great news. I'm glad you and your baby are in good hands and have the best outlook for sb. I wish you the best.






          


     TTC since 9/10 consult 1/12 All testing came back fine Diagnosed with Unexplained infertility -3 medicated IUI's All BFN IVF - ER 11/14 24R, 15M, 13F ET 11/19, BETA 11/28 BFFN --Next step FET in Jan ET scheduled for 1/24. Beta #1 350 Beta #2 735. U/S Hell. miscarriage D&C at 9weeks. FET #2 ET 5/28 cancelled FET# 2.5 6/26 ET Beta 7/5 302 7/7 Beta #2 632 Everyone welcome



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    Baby Birthday Ticker Ticker
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    I've been following your son's story, and this update just brought tears to my eyes! So happy for him, you, and your family!

    Two DDs 10/08 and 08/10, no primary IF
    TTC #3 since 10/2011 - dx unexplained/weak ovulation
     3 BFN clomid + TI cycles, 5 BFN clomid/gonal f IUIs, 1 mmc IUI
    2/19/2014 IVF #1 Unexpected low E2 (oversuppressed) -> increased to max doses = 3 or 4 follicles, converting to IUI
    BFFP Saw 1 beautiful heartbeat at 6w6d, follow up u/s at 9w showed mmc. Eff this.
    NTNP 5/2014-9/2014, OPKs and TI 10/2014 - 1/2015. 
    RPL testing all normal, AFC, AMH, and FSH all normal. 
    IVF 1.2 1/22/2014 natural cycle start, AFC 28, 300 gonal f/150menopur. 
    ER 2/3/15 14R 8M 3F w/ICSI Day 5 transfer on 2/8/15 of one "Grade A+" blast and have TWO frosties! 

     image

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    Wow, that's such incredible news! I know surgery is scary regardless, but it sounds like he is in really good hands and his prognosis is great.

    **PAIF/SAIF Welcome**
    TTC #1 March 2010 - Nov 2012
    Me: 29, PCOS (anov), Hashimoto's Disease // DH: 30, normal SA
    3 Clomid, 1 Clomid/Menopur, 1 Menopur w/ TI (CX 4x's due to cysts) - All BFN
    1 Clomid/Menopur, 2 Menopur, 1 Follistim w/ IUI - All BFN
    RPL & Karyotype testing normal


    IUI #5 (12/1/12) --> Follistim + 1/3 hCG Trigger = BFP! EDD: 8/23/13
    Betas --> 61 (13dpo) // 156 (16 dpo) // 223 (18dpo) // 656 (21 dpo)
    U/S --> 5w0d - sac seen // 6w0d - hb detected // 7w0d - hb seen and heard, measuring 6w6d!
    8w6d - wiggly baby! // 9w3d - wiggly baby with fingers!

    Baby boy born 8/24/13

    imageimageimage 

      My Blog: Searching for Lucky Socks

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    Thank you so much for posting an update. I am so happy that his prognosis is good. Sending continued love and prayers.
    Lilypie Fourth Birthday tickers
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    Doriimage
    "Just keep swimming, just keep swimming..."
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    Great news and sounds like you are in excellent hands.  Best wishes. 
     TTC #1 since 6/09
    Dx: PCOS and MFI
    3 IUIs, 4 IVFs = BFFN
      3rd RE: IVF #5/FET = BFP
    14dp5dt=1170 16dp5dt=2573

    1st u/s=
    TWINS!
    It's a Boy and a Girl!

    Born at 34w3d! 
     

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    I am glad things went well and you got good news
    6 m/c
    Anovulatory cycles, increased Synthroid Diagnosed Sep 2010
    Natural cycle Dec 2010 BFP M/C 6 1/2 Weeks, D&E Jan 2011
    1 Clomid/Ovidrel BFN May 2011
    Natural cycle Aug 2011 BFP M/C 4 Weeks
    1 IUI Sept 2011 BFP M/c 7 weeks
    Provera Dec 2011 BFP M/C 3 Weeks
    DQ ALPHA HLA MATCH, High NK Cells Diagnosed Dec 2011
    IVF March 2012 BFP m/c 4weeks 5 days (IL, Prednisone)
    IVF#2w/DS July 2012 MEGA FAILURE BFN (IL, Dexamethasone)
    Diagnosed No real HLA Match, DQ Beta Triad, High TNF, Low NK Cells
    Oct 2012 Natural Cycle m/c 4wks (Lovenox, Prednisone) 
    Went to Beer Center- high tnf, low lad, implantation failure
    Nov/Dec 2012 LIT Treatment
    Dec 12 Humira
    Jan 2013 BFP
    Humira,LIT,Prednisone, Lovenox, IVIG, Baby Aspirin
    Miracle Born August 2013 Premature

    Yours doesn't have to be a sad story



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    Lilypie - (ugiy)


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    Gr8teGr8te member

    I'm so happy to hear your little guy is one of the lucky ones. I hope this consult gives you the comfort you need until LO arrives. ((HUGS))

    ~ Everyone Welcome ~
    TTC: 05/2011 Me: 32, All Clear DH: 38 Dx: MFI Low Testosterone & 1% Morphology
    IVF #1 w/ICSI & IMSI, 12/03/12: ER: 27R, 20M, 15F
    4 blasts frozen (3BA 4BA 4BB 5BB) b/c of moderate OHSS
    FET #1: 02/08/13 Transferred 3BA & 4BA | HPT 5dp5dt BFP!

    10dp5dt Beta #1 - 810 | 12dp5dt Beta #2 - 1843 BabyFetus Ticker
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    I'm so very happy that your sweet baby boy has the best case of a bad situation.  He will be fine....he will be a happy healthy  little man!
    Me 35, DH 36
    TTC summer 2008
    Diagnose me. DOR, DH perfect
    IUI # 1 6/2010, BFN
    IUI # 2 8/2010, BFN
    IVF # 1 10/2010 Canceled poor response
    IVF 1.2 12/2010 BFP! mc 6 weeks 2 days
    Mental health break for 10 months
    IVF # 2 10/2011 BFN
    IVF # 3 5/2012 BFP! 10 eggs retrieved (best ever)
    7 fertilized transferred 3
    Beta #1 14dpo - 72, Beta #2 17dpo 145 Beta 3 20dpo 521
    First u/s June 15 saw HB 126 bpm missed m/c 7/5/12 10 weeks D&C 7/6/12
    IVF#4 ER 9/30 ET 10/3 Beta 10/16 BFFN. IVF #5 final with o/e. ER 1/21 only 1 retrieved, hoping my lonestar is the one. Beta #1 2/6/13 = 209.... please let this be it! Keep growing lonestar! Beta #2 2/8/13 - 586! , Beta #3 2/10/13 = 1898. First u/s perfect little heart beat at 116 bpm. Measure 6 weeks 1 day. EDD 10/14/13
    3/4/13 measuring right on track beautiful heartbeat 171 bpm, graduated from RE to OB... bittersweet.
    PAIF/SAIF always welcome! Its a girl! 

    Maggie Grace is here!  10/5/13... 8lbs 6 ounces of pure joy!

    TTC#2  No birth control since DD was born.  Getting ready to jump back in the saddle.  Weaning this month. RE
    appt scheduled 5/8.   Here we go again!

    IFV# 6.  10/27  6 retrieved 4 mature 3 fertilized.  2 made it to 3dt 10/30. 1"very pretty 8 cell" and 1 6 cell.  Beta
    11/13.   Please stick embies!!!!  We love you so much already! 11/12/14  POAS, BFP... beta tomorrow!
    11/13 beta #1  924!!!  2nd bet 11/15 1906, one more on 11/17 3rd & final beta 3430.  First u/s 12/5, 7w4d, 2 heartbeats,
    both measuring right on track....2nd u/s... all is well... both beans measuring right on track... released from RE... first
    appointment with MFM 1/5.  Looks like this is really happening!

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    Wow, that's amazing news!  The surgery part is scary, but it must be such a relief to hear that his prognosis is so good!
    TTC #1 since November 2011
    Me 32, DH 32
    Dx: Unexplained IF
    RE consult October 2012 
    Clomid and IUI Nov 2012-March 2013 BFNs
    IVF#1 on CD10! April 2013 - ER (27 retrieved, 19 fertilized) 4/21 - ET cancelled due to OHSS. 10 frosties 
    FET#1 w/ one blast May 2013-BFN
    FET #2 w/ one blast July 2013-BFP!!! Beta 9dp5dt: 129 Beta 13dp5dt: 867 Beta 20dp5dt: 13621 Beta 27dp5dt: 53341 U/S #1: 7/31 heartbeat 127 measuring right on time EDD March 20th, 2014
    IAmPregnant Tickerimage
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    This is wonderful news! I'm so relieved for you guys. I'm sure the worrying and concerns will continue until he's safely in your arms and until his surgery is complete but I'm so happy you had a good consult. Come on lil' guy!
    BzeetyD = 38, Mr. BzeetyD = 44 together 12/02 married 9/08
    TTC #1 since 1/10
    DX: Unexplained/??? MFI issues

    Our lil' lost sparks:
    5w3d loss 7/30/10 - EDD March 2011
    8w loss 4/15/11 - EDD November 2011
    8w3d loss 8/2/12 - EDD March 2013
    4w c/p loss 10/29/12 - EDD July 2013

    Long story: trying on our own + testing testing testing with 6 rounds of Clomid, more testing, injectables + TI, laparoscopy - one tube blocked, 2 IUIs with Follistim...BFNs.
    RPL testing all normal, Karyotyping normal

    Moving on to IVF.

    IVF #1 April 2012 = BFN, IVF #2 June 2012 = BFP. U/S 7/23 = saw heartbeat but measuring behind. Follow up U/S on 7/30 - no heartbeat. D&C 8/2. Trisomy 12. IVF #3 Oct 2012 = Chemical Pregnancy

    Phone consult with CCRM on 12/12/12 - ODWU 1/4/13 - both tubes clear(!) - AFC 24, AMH 3.2, FSH 9.6, LH 5.4, E2 25. DH has high frag rate but improved!
    IVF #4 March 2013 CCRM. EP protocol w/ Menopur, Gonal-F & Dexamethasone. ER 3/29 & IMSI, PICSI. 43R 13M 10F 6blasts bio'd. CCS testing reveals 3 normals!!!
    FET 5/31/13 of 1 4AA blast - thawed and expanded. 4dp5dt BFP.
    Beta 9dp5dt = 181, 11dp5dt = 427. 1st u/s showed a healthy heartbeat! EDD 2/16/14

    After 4 years of hoping and heartbreak, our sweet little bean was born on 2/19/14
    We are so in love with her.

    "I'm not telling you it's going to be easy, I'm telling you it's going to be worth it."

    Everybody is welcome!!!
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    That all sounds very stressful! Glad to hear your LO has a mild case.
    Me:30 low AMH; DH:30 MFI (count, motility, morphology)
    2 rounds clomid 100 mg -BFN
    IUI#1- 25 mg clomid- July 2012= BFN!
    IUI #2 August = BFN!
    IUI #3 September = BFN!

    IVF #1 November - converted to IUI #4 due to poor response = BFN
    IVF #1.2 February- converted to IUI #5 due to poor response = BFN
    IVF #1.3 April- micro dose Lupron flare with HGH; 14R, 13M, 11F! Transfer of 1 day 5 blast on 4/30, 4 frosties. BFP! Beta #1 9dp5dt= 179; Beta #2 11dp5dt= 442; Beta #3 4106 Stick baby stick!!

    *trying to keep hope*




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    Wow!  I'm so happy for you that you're getting the great medical care and information that you need, and that your LO has such a good prognosis!  You're in my thoughts!
    TTC #1 7/10, Me (31)- Dx DOR (AMH 0.6); DH (30)- normal
    BFP on Cycle #8. Natural M/C at ~8 weeks
    IUI #1 and #2 (8/12, 9/12)- 50 mg Clomid + Ovidrel = BFNs
    IVF #1 (EPP) 13R/10M/9F, 5DT 1-4AA blast, beta #1-148, beta #2-322, 5 frosties! 
     image  image  
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    I'm so glad you got the news that your LO has a mild case. I'll continue to keep you all in my thoughts & prayers. ((Hugs)) 
    Oct 13 April Siggy: Bunnies
    The 33 Most Important Bunny GIFs On The Internet


    image

    DS born on 9/30/13 from IVF #1.2!
      Lilypie - (xNS5)
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    OMG I am so happy that your LO is beating the odds!!!! Keeping you both in my thoughts for the best possible outcome in this scenario!
    TTC #1 since Oct 2009, Dx: Unexplained Infertility
    HSG: Right tube all clear, left tube inconclusive
    3 failed Clomid Cylces
    4/5 lap revealed blocked left tube, but right tube is open
    April/May- 50 mg Clomid + Ovidrel + IUI #1= CANCELLED left ovary ovulating
    June 1- 100 mg Clomid + Ovidrel + IUI #1 = BFN
    June 28- 100 mg Clomid + Ovidrel + IUI #2 =BFP!
    7/12 Beta #1= 14 Beta #2= >5 Chemical Pregnancy :(
    July-Nov long break to recover emotionally and financially
    Nov 24- 100 mg Clomid + Ovidrel + IUI #3= BFN
    Jan 22- Gonal-F + Ovidrel + IUI# 4 = CANCELLED no response on right
    IVF #1- Start stims 4/7, ER 4/20, 21R, 14F, 6 frosties, ET 4/25, 2 embryos transferred= BFN :(
    FET #1- June 2012, Lurpon starts 5/27- CANCELLED
    FET #1 take 2- August 2012, delayed until Sept-CANCELLED
    FET #1 take 3- ET 10/11, 2 embryos transferred,= BFFN
    FET #2- Transfer 12/4--Cancelled, no embies survived thaw :(
    Next steps-- IVF #2 with new RE in March
    HOLY SURPRISE BFP 2/15/13!!!! Beta 1- 286, Beta 2- 782, First Ultrasound 2/25- baby in uterus & all looks good!


    BabyFruit Ticker

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    This is so awesome! You said it best, the best case scenario of this diagnosis. I am thrilled you got such great news. Lots of T&P for delivery day.
    TTC#1: 14 months on our own (did HSG, b/w, SA);
    BFP on Cycle 14--TWINS! Identical twin boys stillborn at 19wks(1/9/10)
    3 break cycles; took clomid 50mg, BFP #2 Beta #1 35, Beta #2 338!!! Owen was born 2/11/11! 
    TTC#2: 4 cycles on clomid: BFNs
    BFP #3: Cycle #5 100mg clomid; beta #1 21; beta #2 6=CP 
    Cycle #6 break cycle TTC no meds=BFN
    Cycle #7: 150 clomid+ovidril+IUI=BFN (switched to RE)
    Cycle #8: follistem+ovidril+TI=BFN
    Cycle #9 Forced break due to cyst
    Cycle #10 follistem+ovidril+TI=BFN
    Cycle #11 follistem+ovidril+TI=BFN
    Cycle#12 Forced break due to cyst, went on BCP; did repeat HSG, Saline U/S
    Cycle #13 IVF: Follistim/Menapur ER 11-30 11 eggs, 5 mature, 4 fertilized and 3dt on 12-3; BFN
    Cycle #14: IVF#2 lupron/follistim/menopur ER 1-22, 19 eggs, 14 fertilized, 5dt on 1-27, BFP!! beta 1: 63, beta 2: 119; EDD 10-15-13; 1 frozen embie
    Miracle Surprise BFP, EDD 10-1-15; saw HB great Betas, 11weeks lost baby MC at home
    Moved forward with FET transfered solo frostie on 6-4-15, beta 1: 315, beta 2: 738, u/s showed one baby on track EDD 2-21-16
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    I've been thinking of you - so glad you updated us! I'm so sorry you've had to go through this emotional roller coaster, but what a relief that this is the best case scenario!! I know that the early stages after birth will be difficult, but it sounds like you are in good hands and you have a great team of doctors with a good plan. In the meantime, I'll continue to send good throughts your way!! :)
    *** Trigger Warnings ***

    TTC #1 since March 2011
    Dx = Unexplained IF
    1 medicated TI cycle & 4 clomid IUIs = all BFNs
    June 2013 IVF #1 = 6 frosties + BFP!
    DS1 born 2/14

    TTC #2 since December 2014
    May 2015 unassisted BFP ended in m/c at 7wks
    April 2016 FET #1 = BFN
    June 2016 FET #2 = c/p
    August 2016 FET #3 = BFP!
    DS2 born 4/17
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    I'm glad that your LO will be in such good hands and that his case is mild. T&P for him.
    Baby Birthday Ticker Ticker


    BabyFetus Ticker
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    I am so happy you got the best news possible. Continued prayers for your little one.
    TTC 1/2010 DH Dx - Azoospermia 2/2011
    Hysteroscopy 3/2011 2 Polyps removed 4/2011
    DH on Clomid / Arimidex to address hormonal issues - Sperm found July 2011!
    IVF #1 September 2011 - ER 9/8/2011- 8R, 5M - icsi - 1 made it to transfer - BFFN :-(
    IVF #2 Lucky November 2011 - ER 11/25/2011 - 15 eggs!, 13 mature, 10 fertilized with isci - 7 made it to transfer! Transferred 1 - 8 cell and 2 - 7 cell. BFP!!!!
    1st U/S - Twins! 2nd U/S - 3 heartbeats!!! - HOLY COW!!!
    Prayers for our take home babies!
    2 babies born on 3/27/12 and lost. Last baby born on 3/29/12 and lost at 20 weeks.
    My angels grew wings shortly after birth.
    Ahava Raisel, Matisyahu Nissim & Zev Chaim - Mommy and Daddy will always love you.
    IVF #3 July 2012 - ER 7/17/2012 - 10 R. 5 F. 4 made it to ET
    Transferred 2 on 7/20/2012 no snow babies :-(
    Beta on 7/31/2012 = BFMFN
    A miracle gift expected to come to us through adoption around 9/2012
    Baby girl adopted - Birth Mother changed her mind and took the baby back
    IVF #4 October 2012 - New RE. Doing PGD Testing. 8 R, 7F, 2 made it to 5 day blast for PDG testing. Both Normal (Thank you G-d!!!) 1 boy and 1 girl
    transferred one beautiful 5day blast (girl)
    Please G-d the almighty one - let this be our take home baby!
    Beta #1 158, Beta #2 318, 1 Absolutely magnificent HB at 175! Thank you G-d!!!
    Baby Girl born August 5th. Thank you G-d for our precious miracle.
    AMA. PAIF & SAIF always welcome - I need all the prayers I can get!

    Lilypie Angel and Memorial tickers
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    I replied to you over on Special Needs, but wanted to here too.  My DD also has SB.  She's 20 months and is amazing.  I remember exactly how you're feeling, as I was in your shoes 2 years ago.  It was especially difficult after going through the IF journey, and then to have something "wrong" with your baby.  Feel free to pm if you ever need anything, I've been there mama!  You and your baby are going to be great :)
    Lilypie Second Birthday tickers

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    Wow I'm so glad the little guy is doing well. God bless him and your family. T&P for you.
    TTC Since 112010 Naturally. Diagnose:PCOS(ME) + Low Motility(HIM). Started IVF+ICSI Cycle 12312. ER 27 & ET 210 two embies transferred. *BFN 1ST IVF CYCLE.* **Getting as healthy as possible and will try IVFICSI#2 again hopefully in April.** -- HAVE FAITH; LET GO & LET GOD --
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