Multiples

A/S good and not so good results....

For mobile: "A/S good and not so good results..."

We went in for our Anatomy Scan today and find out we're having 2 (ID) girls and a boy!!!  (As selfish as this sounds, this is what I've been hoping for!)

However, we found out that our 2 little girls are very at high risk for TTTS.  Girl A is measuring behing and has less fluid Girl B.  Their numbers are around 14%, and 20% makes them labeled as TTTS.  MFM believes they will get there, however, also believes that because we're catching this now, we can be proactive and aggressive on treatment.  (Also - Girl A also had some measurements for her arms and legs that are small, which they say may be a marker for DS, so we'll be doing genetic counseling.  We didn't want to do any genetic counseling/amnio, but MFM says it's best to have all the info we need and we may need all the info we can get to treat TTTS). 

Right now, the plan is to go back for another U/S in two weeks to see how fluid levels are doing and go in for genetic counseling.  If they do develop TTTS, MFM has recommended laser treatment which we would have to go to Cincinatti (we live in Cleveland)

Any encouraging stories on TTTS and prayers throughout this time would be greatly appreciated.  We've decided to NOT tell people about this (because I can't deal with the constant questions, especially when we don't really have answers) so you ladies are all I have!

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~ Leah, Rachel and Gabriel were born on May 27, 2013 (23 weeks) ~
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Re: A/S good and not so good results....

  • Praying for your sweet girls and for peace of mind for you! Hugs!
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  • I too had a/s scan today with good and not so good results. I don't have any experiences to share but sending may prayers!
    Lilypie Premature Baby tickers
  • My thoughts and prayers are with you!
  • Praying for you and your family.
    ? TTC#1 since 2/10 ?

    DX: Me - Slight androgen PCOS Him: Mild MFI Official DX: Unexplained IF

    2/11 - 8/11 - 6 cycles Femara (5mg) + TI = BFNs

    2/12 - 5/12 - Femara(5mg) + IUI = BFNs

    6/12 and 8/12 - Femara (7.5mg) + IUI = BFN :( - considered IUI#3 and 4 by RE

    9/12 and 12/12 - Femara (7.5mg for 3 days) + Ovidrel + IUI = BFN

    After 8 unsuccessful IUIs and no explanation for IF, moving on to IVF Feb. 2013.

    image


    S/PAIFW appreciated
  • Sending thoughts and prayers for you and your babies.

    6 year old daughter

    Fraternal boys born on May 11, 2013 at 36 weeks 4 days

  • Size discrepancy is not.necessarily.ttts. i am.not.sure how.many weeks.you.are, but if.ttts is even a remote.concern, you should absolutely be seen more frequently than every two weeks. I.would like to.direct.you.to a.couple.different.fb groups where you can get support and.advice. i am.not sure if.it.is allowed here directly.or.not, sonplease.send.me.a pm, or let.me.know so.i can.send you one
  • Praying for your sweet babes! GL!
    Pregnancy Ticker
  • I don't want to alarm you but if they think it's TTTS you should definitely be proactive in getting it checked before two weeks. We were just diagnosed with TTTS on Thursday and its already progressed, we leave on a plane tomorrow morning for Miami for surgery. I would definitely talk to your doctor more about what is going on and if they definitely feel this is TTTS. Good luck to you and your babes! Wishing you the best.

    Edit: we are 17w with triplets tomorrow. Diagnosed with TTTS at 16w1d and moved to stage 2 today.

    1.12 Started TTC • 10.12 M/C • 1.13 Conceived through IUI - Triplets • TTTS diagnosis and both Identical girls diagnosed with congenital heart defecs • 8.13 girls born at 31 weeks - Loss of our Baby girl "B" Addison • 10.13 L goes through open heart surgery for a complete repair of tetralogy of fallot and does great!


    Lilypie - (mpcK)Lilypie - (AydJ)

  • Many good thoughts going out to you and your babies!

    Lilypie - (yNYF)

    Lilypie - (bSes)

    T1 diabetes diagnosed 11/95 due to severe pancreatic injury
    BFP 1 1/22/10 EDD 9/30/10 Adria b. 9/11/10 d.8/9/11, Transposition of the Great Arteries,
    Pleural effusion, Kidney Failure
    BFP 2 4/26/12 EDD 1/3/13 M/C 5/13/12
    BFP 3 10/3/12 EDD 6/17/13 Twins! Preston and Juliet b. 5/22/13

     

     

     

     

     

  • Thoughts and prayers for you and LOs
    Lilypie Second Birthday tickers
     

     

     

  • I have identical girls who developed TTTS as well.  I think it's interesting that your MFM wants to be proactive and aggressive, and yet isn't going to see you for another two weeks.  

    Stage I TTTS is driven more by the fluid levels than size discrepancy.  Generally, they monitor you until that happens and then have a plan in place as far as treatment goes.  For us, an amniotic reduction leveled the fluid out enough that the donor baby could regenerate some fluid.  Her doppler readings normalized and we were stable (although still monitored with twice weekly ultrasounds) until I delivered at 32 weeks when her cord blood flow reversed. 

    From 18 weeks until I delivered I was never seen less than twice per week, often 3x per week.  Make sure they are keeping a very close eye on you. TTTS can turn in a day, especially at the stage you are now. 

  • Positive thoughts to you and your family.
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  • Thanks for all your prayers!
    MFM is concerned with the differences in fluid level, but we aren't quite to stage 1 if that makes sense....

    We're currently 19w 2d...
    ~ Leah, Rachel and Gabriel were born on May 27, 2013 (23 weeks) ~
    Lilypie Angel and Memorial tickers

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  • image Dixon813:
    Thanks for all your prayers! MFM is concerned with the differences in fluid level, but we aren't quite to stage 1 if that makes sense.... We're currently 19w 2d...

    Technically a TTTS diagnosis is when the fluid levels are at least 2 and 11.  Discordant growth can be related to TTTS, but can also be something entirely different.  I would strongly urge you to get and u/s earlier than 2 weeks if TTTS is suspected.  Things can change very quickly in this disease.  I have 2 survivors.  Sending some good thoughts your way.  Stay positive!

  • Thoughts and prayers to you and your family during this time....
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  • image Mrs. Alice:

    image Dixon813:
    Thanks for all your prayers! MFM is concerned with the differences in fluid level, but we aren't quite to stage 1 if that makes sense.... We're currently 19w 2d...

    Technically a TTTS diagnosis is when the fluid levels are at least 2 and 11.  Discordant growth can be related to TTTS, but can also be something entirely different.  I would strongly urge you to get and u/s earlier than 2 weeks if TTTS is suspected.  Things can change very quickly in this disease.  I have 2 survivors.  Sending some good thoughts your way.  Stay positive!

    Just called the MFM office (with some other questions plus hearing others say they were seen more often)  was told that since I'm not coming back sooner since I'm not officially diagnozed (I'm not quite to stage one)  I think my fluid levels were 4 and 9...but I don't remember exactly because I was in shock!

    ~ Leah, Rachel and Gabriel were born on May 27, 2013 (23 weeks) ~
    Lilypie Angel and Memorial tickers

    Lilypie First Birthday tickers
  • Two weeks is.too.long.to.wait.with those #s. Please.contact Lonnie.Sommers.at.tbe Fetal health foundation. He can get you.in.touch with top tier ttts specialists.who.can reciew.your.case...I.was never tech.ically.diagnosed, yet required.amnioreductions.and.ended up.delivering at 31w b/c. Y recipient.was in going into heart failure. Please please don't have regrets. Advocate now.while.you.can.
  • Ttts hope and connections on FB.
  • Any time the fluid levels reach above 8 or below 2 that is extremely dangerous. Extensive monitoring is needed. Usually this means you already have TTTS and should not wait any length of time to be seen by an MFM.
    Please consider contacting Lonnie insert at symbol fetalhealthfoundation.org. He can direct you to a good doctor that WILL take care of you and those babies.
    Also consider joining 'MoDi Twins' on Facebook.
    You can go from perfect little babies on ultrasound to stage 4 TTTS in less than 96 hours. That's why it is so important to be seen ASAP by a specialist. It is fast.
  • image Dixon813:

    For mobile: "A/S good and not so good results..."

    Right now, the plan is to go back for another U/S in two weeks to see how fluid levels are doing and go in for genetic counseling.  If they do develop TTTS, MFM has recommended laser treatment which we would have to go to Cincinatti (we live in Cleveland)

    Hello Dixon813, I am seeing Two Big Red Flags in your posting, as some of our other people have quite Astutely pointed out. Cinnci will recommend Selective Reduction of the Monochorionic Pair, as they always do with Triplet Gestations, due to the Skill Level of their Practitioners. I have been doing Advocacy in a number of support groups on Facebook for nearly 3 years, Cinnci is Well Known to us. I don't want to come right out & call your MFM "Incompetent", But I feel I must do so here. Your MFM has a Disconnect with the Dual Realities of both the Speed of Manifestation of TTTS & the complexities posed by Triplet Gestation. Based on your posting I recommend that you initiate a search for a Replacement MFM with All Possible Dispatch. As the others point out, the Fetal Health Foundation can assist you with this & in a Timely fashion. Dr. Ruben Quintero, a Top Tier TTTS Laser Surgeon qualified to Intervene with Triple Survival as the Goal in your case, can be contacted directly. TTTS Hope & Connections on Facebook is aware of your case and has that information waiting for you. Also search for Jeremy DeBauche, father of a Triplet Set similar to yours that was treated successfully. Ultrasound needs to be performed at this point Every Third Day as TTTS is That Terribly Fast in a large number of cases. Also watch for Rapid Weight & Girth Gains, such may signal an Exacerbation in your case. You are not Alone. Please respond. God Bless You & your Triplets.

  • I cannot for the life.of.me.use the pm.function. The groups i.was thinking.of were.mentioned in.the previois post(s)
  • There is TTTS Hope and Connections and also MoDi Twins on Facebook. Are these the groups your referring to?
  • image MoDiMomma:
    There is TTTS Hope and Connections and also MoDi Twins on Facebook. Are these the groups your referring to?
    YES! These are the groups! Thank.you!
  • image MoDiSafety:
    image Dixon813:

    For mobile: "A/S good and not so good results..."

    Right now, the plan is to go back for another U/S in two weeks to see how fluid levels are doing and go in for genetic counseling.  If they do develop TTTS, MFM has recommended laser treatment which we would have to go to Cincinatti (we live in Cleveland)

    Hello Dixon813, I am seeing Two Big Red Flags in your posting, as some of our other people have quite Astutely pointed out. Cinnci will recommend Selective Reduction of the Monochorionic Pair, as they always do with Triplet Gestations, due to the Skill Level of their Practitioners. I have been doing Advocacy in a number of support groups on Facebook for nearly 3 years, Cinnci is Well Known to us. I don't want to come right out & call your MFM "Incompetent", But I feel I must do so here. Your MFM has a Disconnect with the Dual Realities of both the Speed of Manifestation of TTTS & the complexities posed by Triplet Gestation. Based on your posting I recommend that you initiate a search for a Replacement MFM with All Possible Dispatch. As the others point out, the Fetal Health Foundation can assist you with this & in a Timely fashion. Dr. Ruben Quintero, a Top Tier TTTS Laser Surgeon qualified to Intervene with Triple Survival as the Goal in your case, can be contacted directly. TTTS Hope & Connections on Facebook is aware of your case and has that information waiting for you. Also search for Jeremy DeBauche, father of a Triplet Set similar to yours that was treated successfully. Ultrasound needs to be performed at this point Every Third Day as TTTS is That Terribly Fast in a large number of cases. Also watch for Rapid Weight & Girth Gains, such may signal an Exacerbation in your case. You are not Alone. Please respond. God Bless You & your Triplets.

    Thanks so much for sharing. We made a call to our MFM nurse (the lady who is our "coordinator" (if you will) throughout this process and expressed our concern with waiting two weeks to be seen again. She is talking with my MFM (and another MFM in the practice that I'm scheduled to see next for a second opinion) about our concerns.

    She also told us that when we go in for our genetics counseling in a couple days, they will be able to check the babies again then. (which I didn't know would be happening)

    Interesting about Cincy---MFM that sometimes people CHOOSE selective reduction, but he didn't say that that is Cincy's choice. Selective reduction is not an option for us, so we will advocate in whatever way we need to make sure it doesn't happen!   The other MFM did say that Pittsburgh and Ohio State may also be good locations for us, should we need laser.

    It's just so much to process....

    ~ Leah, Rachel and Gabriel were born on May 27, 2013 (23 weeks) ~
    Lilypie Angel and Memorial tickers

    Lilypie First Birthday tickers
  • image pixiem38:
    image MoDiMomma:
    There is TTTS Hope and Connections and also MoDi Twins on Facebook. Are these the groups your referring to?
    YES! These are the groups! Thank.you!

    Thank you for these--I will look them up!

    ~ Leah, Rachel and Gabriel were born on May 27, 2013 (23 weeks) ~
    Lilypie Angel and Memorial tickers

    Lilypie First Birthday tickers
  • Thanks for responding, I am glad we have been able to get a Dialogue started. Yes, Indeed, this is a Whole Lot to process. This Principle is one of the things that binds us together in our work we call "TTTS Harm Reduction", which includes Patient & Family Outreach like our Endeavor here. This work involves supplying the latest information, based on current medical journal aericles, libraries such as MEDLINE  & the collected Experience from the well over One Thousand cases that have come to us these past 3 years. All of Us wish that someone would come Right Out of the Woodwork with actual information on This Stuff when we were Experiencing it. You are correct in that it is Not Cinnci's choice to selectively reduce, however, what if that is The Only Option they present? This was & is my point about Cinncinnatti Childrens being Well Known to us. Triplet Gestation is a Major Challenge to the Laser surgeon. Due to this & variations in Practitioner Skill Level coupled with your Goal of Triple Survival (TTTS Laser is By No Means a Standardized procedure, like Tonsillectomy for example) your choices are Narrowed to include Quintero in Florida, whom we recommend, also Moise in Houston, Walker in Seattle & Chmait (pronounced "Shmite") in Hollywood. We are afraid that any of the other 15 centers & 35 practitioners of TTTS Laser will either refuse to offer surgery or offer only Selective Reduction as a surgical option. Have your MFM search TTTS Laser resources for you & report back with a list of those who will perform TTTS Laser Placental ablation in a gestation such as yours. Also, if you have Anterior Placentation, where the Monochorionic Shared Placenta is attached up front, your Sole options for TTTS Laser are narrowed to 2: Quintero & Chmait. Please put your MFM to Work defining your options for TTTS Laser, while we all pray it is not needed, Prudent Diligence demands the aforesaid Definition for your very special pregnancy Now. God Bless You & your Family.

     

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