Monday, December 9, 2013

Diary of an Identical Twin Pregnancy, Part IV - Change of Plans

Part I
Part II
Part III

~~~~~~~~~~~


All day Tuesday, I spent thinking about the amnioreduction scheduled for the following day. It did not sound like a very hopeful option, but I thought it was the best shot we had. The thought of a large-gauge needle going into my stomach, and draining one of my babies of most of his fluid, just really made me anxious.
 
I posted my story to several groups for mo/di twins, as well as TTTS groups, hoping for encouragement, feedback, and possibly advice from others who had been in our situation. As is turned out, this proved to be life-saving to our babies.
 
On Tuesday afternoon, during the little ones' nap time, my husband thought I needed to clear my head and get away for a bit, so we left the kids in my MIL's care and took off, just the two of us. We first went out for a wonderful lunch at my favorite restaurant. After that, we drove to some beautiful walking/biking trails nearby, where we spent a couple of hours. As I was out in the fresh air, surrounded by peace and quiet, I really was able to clear my head and absorb the information I was receiving via email on my phone from the groups I had posted in. By the end of our time at the park, thanks to modern technology, smart phones, and internet at my finger tips, I had learned that success rates after laser ablation vary vastly from clinic to clinic, depending on the expertise of the doctor performing it. Even so, survival rates for both babies were greater overall after laser surgery (though more invasive) than after amnioreduction. I also learned that most clinics will not perform the laser ablation once amnios have been performed, so we really had to choose one or the other, rather than trying the less invasive amnio first. Several people highly recommended a clinic in L.A. to me, headed by Dr. Chmait.
 
I call his office from the park, and speak to one of the wonderful and sweet ladies he has on staff. Based on the results of my exam with Dr. E the day before (yes, I had all the numbers memorized!), she quoted the success rates at their clinic for my stage as over 90% survival for one twin, over 70% for both (I later read the exact study involving their clinic that she was referencing, which showed it as >93% and >78%, respectively, which is even better). This is far better than the outlook promised by amnio. Also, unlike the amnio, laser surgery permanently fixes the problem by separating the babies' blood cycles, rather than just addressing the symptom of too much fluid for one twin. Even if one twin were to pass away, the other baby's chances of survival are no longer affected. Without separating their blood cycles, if one were to die, the other could bleed into the dead twin and then, in turn, likewise die (about 1/3 chance), or suffer severe damage (another 1/3 chance). During this phone call, I also bring up the subject of my fear/aversion of being treated by male physicians if it involved my private parts. She is incredibly sensitive to that, and promises to talk it over with the doc, and also explains to me that the surgery is almost always done by access through the stomach. Should it become necessary for the doctor to access the uterus from the very underside of my belly, with me up in stirrups, she assures me that she would cover my private areas prior to the surgery. We are very thankful for the great care, concern, and respect we receive both from Dr. C, as well as his entire staff. I cannot express enough how truly wonderfully they treated us through this whole experience.
 
My husband was taking me out to some gelato after the park. On the way there, I call Dr. E. on his personal cell phone, for which he had given me his number in case I needed to get a hold of him, to discuss my findings with him. He has transferred other moms to Dr. Chmait for treatment, and strongly encourages me to go that route. He promises to send the transfer papers to Dr. C's office that same evening.
 
I speak to Dr. C's office again. They can get me in for a pre-op exam early Wednesday afternoon, with surgery (should it indeed be warranted) scheduled for Thursday morning. It is now Tuesday evening, so things are just happening very fast. We head back home, ready to pack up and leave as soon as possible to make part of the drive to Los Angeles that evening. On the way home, we pick up a rental car to go to L.A. in, since we are leaving our big van home with grandma and the kids.
 
At home, my husband packs the necessary things for our trip, while I fill my MIL in on all the latest developments. She never for one moment bats an eye at being left home alone, with 7 kids ranging from 12 years down to 16 months, but rather just assures us that her and the kids will be perfectly fine, and not to worry about a thing (which I knew to be true from past experience. She is the only person we ever leave our children with.). To make life easier for her, I call one of the ladies at our church, and ask if she could arrange for meals to be brought every evening so she wouldn't have to worry about making dinner.
 
We get on the road around 7 pm. Even though the days ahead hold much anticipation and possible complications or even tragedy, I have total peace that we are making the right decision, and choosing the best possible odds for our babies' survival. My husband and I try to make the best of our "time away" and enjoy chatting, listening to Handel's "Messiah", and learning about twins on the drive. We make it to Palm Desert, which is about 2/3 of the way, that night, and stay at a nice hotel.
 
 

34 comments:

  1. This post brought tears to my eyes reading your gratefulness to your MIL and the kindness of the doctors and staff. I know you are so busy and overwhelmed at this time, but know you are being prayed for. I will pray for your children too as this journey impacts them as well. God bless you all.

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  2. Thank God for your wonderful mother-in-law, what a blessing it is to have someone with whom you can trust your children during such a worrisome time! I will confess that when I first read that you were expecting twins, I thought "Oh Thank God for Pastor Anderson's mother being supportive and living so nearby!" I knew that you'd be sending for her soon, if you hadn't already. I'm so very happy that the staff is willing to work with you in your belief system and support you and your husband so that you can provide the best possible chances for your little boys. Indeed, it is a season for miracles, and I know that we are certainly praying for the safety and well-being of your sons and your entire family, along with countless others. If I may make a suggestion to all your readers out there: We all knows that Zsuzsanna loves surprises in the mail, and as it is the Christmas season and most of us are sending out our annual Christmas cards to family and friends, surely it would be no great bother to add one more card to the list to cheer up a mother-to-be and her precious family who are currently going through an understandably tough time? Let's make it "snow" Christmas cards in Phoenix to support the Anderson Twins! God bless you, Pastor Anderson, and your nine! --Mindy

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  3. As Jesus forgive your sins, he can heal your twins.

    Psa 103:3
    3 Who forgiveth all thine iniquities;
    who healeth all thy diseases;
    (KJV)

    Ask steven to lay hands on you and pray.

    Mar 16:18b
    18 they shall lay hands on the sick, and they shall recover.
    (KJV)

    Glory to Jesus !

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  4. I am glad that the babies appear to have benefited from the procedure and will hopefully go to term and will grow and thrive. I must admit that I am confused by your repeated statements of concern for your modesty. Most mothers wouldn't even give it a thought as they try to do whatever it takes to save their babies.

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  5. I am envisioning a beautiful outcome for you and your unborn children. May you find a perfect solution to the issues you are facing, and be able to have a healthy and safe pregnancy.
    Blessings
    :)

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  6. Hi Zsuzsanna,
    I just wanted to say Congratulations on your pregnancy and with twins!
    God has blessed you and your family many times and will take care of anything else He has planned. You and your husband are a great team and are doing the best things for your babies! Take care and we will keep you in our prayers.

    The Freund Family

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  7. Zsuzsanna – what an absolutely terrifying couple of weeks for you and your family. I have followed your blog for years now and my family is praying for you and yours at this trying time.

    I had always wondered if any of your pregnancies would necessitate any of the obstetric interventions you have written about on your blog. Now in a single pregnancy you are likely to experience ALL of them – repeated examinations by a men you believe to be perverts (perhaps not internal exams but you are allowing him to touch you in ways you would not for any other man but your husband) and possibly baby-killers (if they perform selective reductions), repeated ultrasound exams, likely elective premature delivery, an almost guaranteed C-section, an epidural (even if a vaginal birth is attempted it will be induced with AROM +/- pitocin and culminate in the OR with an epidural in place), immediate cord clamping, children in the care of strangers (NICU nurses), formula use (depending on degree of prematurity and production to feed two at once), artificial nipple use and delayed breastfeeding. Obviously premature babies will also make it impossible to follow all your points on lactational amenorrhea, affecting the spacing for your next pregnancy and your chances of an HBAC (unless you find a midwife willing to break the law or are willing to go unassisted I guess).

    You have had very strongly worded opinions about all these things in the past, so I’m curious to see how you are processing it all. Thus far it seems you’ve recognized that obstetric interventions have been recommended for the saving/betterment of your babies’ lives and your life. Which is exactly the point. How are you coping with all these issues?

    We are praying for you and your boys.

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    1. I had a high risk pregnancy and none of what you "predict" to be inevitable happened. I had lots of medical monitoring but not a single invasive exam (those high tech ultrasounds make internal exams to check your cervix unnucessary). I breastfed/pumped for triplets and only had to supplement with formula. As a veteran mom. And someone who does lots of research to make the best choices for herself, like we all do, I think Mrs. Anderson is going to rock whatever her outcome may be. And, if this experience broadens her horizons a little and brings some good medical professionals into her life, wouldn't that be an added blessing?

      Mrs. A, I wish you and your family all the best during these next months. It sounds like you've already found a support network of women who have/are currently walking the same path. My local triplet mamas group was a sanity saver during my pregnancy and the infant years.

      My only advice is to check out the Valco Trimode double stroller with the Joey seat, best option for twins and a toddler or triplets. I found mine on Craigslist for a good price. I also had a used Mountain Buggy triple that I preferred for parks or long walks, it's nice for all three littles to be able to recline for a snooze.

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    2. Anon,

      you are being very foolish. I have NEVER been against medical intervention, the key being: when warranted and necessary. Many times, I have quoted Jesus when he said, "They that be whole need not a physician, but they that are sick"

      I challenge you to find where I have ever said otherwise. 99% of medical interventions are just that: unwarranted, and unnecessary, especially in the world of obstetrics. Just because I speak out against the overuse and abuse of whatever interventions you bring up, does not mean I am always against them. Am I the only person advocating for natural births and better HEALTH care? Are you also going after everyone else who tries their best to PREVENT, rather than TREAT, medical problems? Does that mean I don't use treatment, when needed, just because I try to avoid making it necessary in the first place?

      Plus, many of the things you mention are a big "IF". I guess unlike you, I am just not willing to roll over and die. With the laser surgery completed, the issue of TTTS has been completely resolved, and there is a very great chance that my pregnancy will be none different from any twin pregnancy (which unlike you, I do not consider to be inherently high-risk).

      Did you really think this bothers me mentally/emotionally at all? It doesn't. Why would I lay awake at night crying, because I saved my babies' lives? No, I think you were trying to be a doom-and-gloom pessimist to try to drag me down, and your little talk of "praying" for me is just a little sugar sprinkled on top of your incredibly insensitive comment. Not that you did drag me down, because if I needed any more highly invasive medical procedures in the future to save the babies, I would gladly and without second thought opt for them.

      Remember, I had the choice to do nothing about the TTTS, and just let the pregnancy spontaneously miscarry. It is what has happened in these cases for thousands of years, without any possible treatment or cure available. I didn't even need to have an u/s, and would never even have known there was an issue. We use medical advances and technologies when we believe they benefit us, not "just because". I have had u/s with 4 of my 7 previous pregnancies, when we felt the need to check on or rule out possible issues. We chose an aggressive approach this time not because we had to, or were forced to, but because we CHOSE to. Why in the world would that make me feel bad?

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    3. Very excited for you and your family. You have had a lot of pregnancies. I'm wondering if your stance on unnecessary medical intervention has saved you from troubled pregnancies until now (and it sounds like everything will be okay now, despite being your being modest!). If they messed with you in an earlier pregnancy unnecessarily, all the pregnancies might have been troubled!

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  8. I will pray for you and your babies.

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  9. I have to agree with Anonymous. How are you coping? Your views on pregnancy and childbirth are very strong, add in modesty and this whole situation must be a nightmare for you. Its bad enough having to accept that you may need one of the procedures you previously spoke out against, but to need ALL of them, then add in modesty, possible socialised healthcare and a possible inability to naturally delay future fertility, it must be making your brain explode.

    Anyway, I wish you the very best for this pregnancy. Having had a twin pregnancy myself and losing one of them 6 days post birth due to severe prematurity, my heart aches for you.

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    1. Please read my above comment to anon.

      Also, "adding modesty" has been very straightforward. Why wouldn't it be? It doesn't take long to tell someone you want to be seen by their female staff. And why am I held responsible for the health care in our country becoming socialized? Do I want socialized health care? NO. Does that mean I will just let someone die because that's all that is available? What a ridiculous thought. That's like saying the US only sells GMO foods any more, which I am against, therefore, I will just stop eating food altogether. No, I will do whatever I can to secure the best resources for my loved ones, but at the end of the day, it is not my fault if we are victims to an evil system. It's like blaming a slave that he is in slavery.

      I do not know the outcome of this pregnancy, but I do know that anything is possible, and that whatever happens is God's will. If the babies pass away, are born severely prematurely or with disabilities, or even all of these, I know that we did whatever we could to give them the best chance at life, and that the outcome is 100% in God's hands. I actually have great peace, because the responsibility is with God, not me. I am doing my part, the outcome is His to decide.

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    2. I'm upset about people making digs about the modesty thing. I had breast cancer. I'm fine now. Probably 75 people saw my breasts throughout the ordeal. Had I not asked for modesty it would have been 575 people who saw me. I understand what you are saying about your husband and respect. For me, it was all about me! I am modest because that is what is comfortable for me. The husband respect aspect is just a bonus for us.

      Just because someone isn't comfortable with stranger's hands on them and being looked at by strangers when you are in a vulnerable position doesn't mean that you are risking your health or your babies.

      People need to do what they need to do. If you are comfortable letting it all hang out, go for it. But there is no need to harass and say mean things about someone that isn't comfortable with it. It's a personal preference that ties in with how you live.

      Sorry for ranting on your blog. I should get my own. I just can't stand it when people judge something like this. Walk in your own shoes and shut up.

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    3. Zsu said: "It doesn't take long to tell someone you want to be seen by their female staff. And why am I held responsible for the health care in our country becoming socialized? Do I want socialized health care? NO"

      That's not what I meant. I probably didn't word it very well. I mean that there is a possibility that your babies might end up in the NICU. Having been there myself I know how expensive NICU care is. As far as I'm aware premature babies under a certain weight are automatically enrolled into Medicaid in Arizona. That's what I meant by socialised healthcare, as Medicaid is a form of socialised healthcare, just not a universal one.

      If it came to that, and I sincerely hope that it doesn't Zsuzsanna, how will you deal with that in your mind? That's what I meant. It is never easy having to do something you find abhorrent. And I wondered how you will process that.

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  10. Zsuzsanna,

    You and your lovely family are in my thoughts and prayers. I share the belief that most obstetric interventions are overused and unnecessary. I cannot imagine how hard this must be, I cannot imagine your level of worry. Do not listen to the people making ridiculous comments about your beliefs. Simply stating the facts about the state of modern obstetrics and making informed and safe choices in pregnancy and childbirth does not mean that one would eschew intervention to save the life of a child or children. It simply means that you are protecting yourself and your children from UNNECESSARY, OVERUSED and UNSAFE interventions when they are unneeded. That is not radical, that is being a responsible consumer and an informed mother.



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  11. I am curious as to why we don't simply pray and send our best wishes? We may not all 100% agree with your views or posts, but that is not the issue at this point. We don't know each other, but I can pray for a sister who is hurting right now and wants what is best for her children. Praying for you and your family. Praying for God's will, praying for the health and safety for your family.

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  12. I feel like a stalker. I keep checking in to see if there's an update on how the babies are doing, hoping everything's okay. Please know there are lots of folks out there--yes, even FJ people--praying for you and the babies and hoping everything turns out okay.

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    1. Sorry for the slow updates. We won't find out anything new until tomorrow (Thu) when I go in for the one-week post-op ultrasound. I am hoping to get the story of last week and the surgery up to speed in the meantime.

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    2. Though I must admit, I have entertained the idea of not publishing any more updates, at all, seeing how the FJ crowd is just going nuts over this. Several of my readers have been relaying the details from their thread on me, concerned about my privacy. I was rather livid at their outrageous claim that I am lying about paying for treatment, when we have paid 100% of all costs to all doctors and u/s clinics, and have assumed full liability for payment to the hospital (it will be paid monthly over the next year, with 11 payments remaining as of right now). I am also angered by their claim that I am being cared for by "abortionists", when both doctors are NOT. Dr. E. sees many patients who have been turned down by their OBs for refusing to "selective reduce" the pregnancy, and Dr. C. flat out told us that he does not carry out cord ablations of one twin only, in order to save the other at the expense of the first, deeming that "unethical". If you don't hear another update, it means I decided not to continue sharing this story publicly, but will rather go back to updating friends and family by way of personal email (which is what I did for the first two weeks).

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    3. Fair enough. For what it's worth, by "FJer" I mean that I found out about this from the message board, not that I'm an active poster there. I do understand your privacy concerns though and wouldn't fault you the least if you decided to stop posting updates. Best wishes with the rest of the pregnancy (whether or not you decide to continue updating).

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  13. This is how I lost my (IVF) twins, and these posts are taking me back to that terrible place I somehow survived. I, too, refused to "reduce." I have been sending so many prayers your way, even though we may disagree on many things.

    I'm not sure what FJ means, but surely you of all people recognize the value of being able to say what you want and not tiptoe around someone's feelings. It's your life and you can decide what to post or not, but I want you to know that you might be surprised who is praying for you with these updates.

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  14. You don't know me but I started following your blog about a year ago. I have never commented before but have felt the lord compelling me to do so after reading about your twins. As a mother my heart breaks for you and your family. I cannot imagine what you are going through right now and the decisions you have had to make. I don't always agree with everything you say in your blog but it is so well written it is almost like actually having a conversation with you. I think you are a wonderful mother who loves and gives to her family with all she has. Even though you don't know me please know I will be praying for you and your family and have been thinking of you much of the time. Only another mother can understand the love you have for your babies that you carry in your womb. I'm so thankful you have succh an awesome MIL. She sounds incredible. Unfortunately I lost mine 2 years into my marriage. You are so very blessed to have her in your lives. Please tell her I think she's incredible. I will be following your blog to see how everything turns out. May God bless and keep you close during this time of struggle.

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  15. Being an avid reader of your blog ever since I found your husband's sermons several months ago (through watching the After the Tribulation video) I find that I feel like I know your family between your blog and Pastor Anderson's sermons, even though I live several hours away and none of us have ever met! Strange, I know. But I have been sick for the past several weeks and had not been on my computer and when I signed on today to see the twin update posted on the good Pastor's youtube page and then came right over to your blog to see your posts as well, my heart is just torn in pieces for you guys for going through such a rough time with this pregnancy. I myself had a very rough last pregnancy, but I hope it's encouraging you to know that after MANY prayers I am sitting here looking at a very healthy, happy, perfectly normal little four year old girl despite all the problems and "scares" we had during that pregnancy. I will be praying with my family DAILY for you, your sweet twin boys, your other children, and of course the good pastor as well, that the Lord be with you to comfort you and to protect those beautiful babies that they will be healthy, and just FINE. As we both know, the Lord Jesus and God the Father have more than the ability to see you and your family through this and to make everything PERFECT for you. No family deserves it more than yours. I just wanted to send out my support to you, and let you know that I am asking all of my extended family to pray for you guys as well, and that is a LARGE group of people, I'd say that between my actual family and then them passing on prayers for you to their respective prayer chains all over the US that would be about 300-400 people at least praying for you worldwide. I just wanted to let you know that. I just love you guys!! Take care of yourself!!!! God Bless you all!!

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  16. Zsuzsanna,

    I have been praying for you and your twin boys. I have triplets (healthy now, but they were born at 28 weeks) and any multiple pregnancy can have added stress and complications. I have NO doubt that you will do whatever you can to assure your children the best possible health. Since so many on the internet seem to be taking a perverse interest in your pregnancy maybe you should not continue to publish about it. If they are causing you even the slightest bit of stress then please just update your friends and family privately. As much as possible, (and I know it is hard) eliminate any stress that you can. I will continue to wish you the peace that passeth understanding.

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  17. Poland is also rooting for you and your children! Anna

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  18. I hope that you'll continue to share the story. I had no idea that TTTS even existed until I read about it here. Wishing the absolute best for you and the babies. I'm so glad you had someone to call on to help with the children... hopefully you're able to rest and relax a bit.

    -Julie

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    1. I didn't know about TTTS either. I don't see how going to a specialist is seeing an "abortionist." Anyone who says that is either daft or being deliberately hurtful. I hope you and the babies continue to do well. -Kristina

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  19. What is FJ?

    Praying for you.

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  20. I'm another FJ member who wishes you nothing but joy and healthy babies. I'm very glad that you are taking advantage of all the medical help available, help that mothers would have done anything to be able to access in the past and that is still out of reach for the majority of the worlds women. You don't need to justify that in any way.

    I hope your pregnancy proceeds happily and healthily and that you add two healthy baby boys to your family. Then you'll be ready for another set of three girls!

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  21. Hi
    Please don't stop posting updates-I really have appreciated them-We are praying and so is our church. Amy

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  22. God bless you. I don't agree with many of your political views, but you seem to be a wonderful mother who loves her children very much, and a very intelligent, thoughtful person who would do anything for her family. I am praying for you and your family, and I hope everything is ok with your little ones. Prayers and love to you.

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Your KINDLY WORDED, constructive comments are welcome, whether or not they express a differing opinion. All others will be deleted without second thought.