Monday, December 16, 2013

Urgent update on my twin pregnancy

*** Edited to add below ***

~~~~~~~~

This pregnancy had been a roller coaster ride unlike anything I have ever been through. 

Last Thursday, exactly one week after the laser ablation to fix the twin-to-twin transfusion, I woke around 1 AM to find I had gushed a considerable amount of amniotic fluid. To say this was terrifying is a complete understatement. 

I changed my clothes, put a pad in, and lay in bed shaking uncontrollably for 20 minutes, the time recommended to wait and see if fluid keeps leaking. There was no more leaking, and I went to wake my husband. We contacted our midwife, who at Dr. E's request is continuing to monitor the OB part of my pregnancy (while he is managing all the MFM/high-risk stuff).  

By about 3 am, we had done the amnicator test to check if the fluid was indeed amniotic fluid. It came back inconclusive, because while it came back negative after swabbing my cervix, it did stain the clothes I had leaked on earlier blue (= positive for amniotic fluid).

At 18 weeks of pregnancy, there is not much that can successfully be done in case of extremely premature rupture of the membranes. Since I was no longer leaking, and we already had an appointment with Dr. E for later that day, it was decided that we should wait until that appointment, to assess exactly what had happened, and where we were at.

As I mentioned in my last post, the appointment was very reassuring in that both babies were alive and well, the donor baby's situation had improved, etc.

Basically, the leak was a side effect/complication of the surgery that happens 4-5% of the time. During the surgery, the scope and laser enter the skin, go through the uterus, through the (shared) chorionic sac of the twins, and through the amniotic sac of the recipient baby (in our case, Baby B). After the procedure, while the amniotic and chorionic sacs will never regain their original integrity, they are supposed to seal up to the point where there is no leaking. In fact, the amniotic sacs and the chorionic sac should never have fluid or even a gap between them. 

The u/s last Thursday showed that fluid had built up between the amnions and the chorion. The leak I had experienced was from the chorion then leaking out through the cervix, which by the time of the u/s was long and closed, and there was no more leaking going on at that time, no bulging membranes, etc.

While all this was reassuring, it still took me several days to recover from this shock. I can only compare it to finding your child in a pool of his own blood. You immediately assume the worst, and even when you find out they are alive and well, the shock is very upsetting. We were hoping the leaks would heal up as they are supposed to.

Well, this morning I woke early to find I had, yet again, leaked a large amount of fluid. This time, I was not as alarmed, as I had somewhat expected it to happen, and I knew it didn't mean the babies were lost. I again changed my clothes, put in a heavy maternity pad, and went back to bed. This time, I could feel that I kept leaking, which was unsettling. About an hour and a half later, I woke up from a major, heavy gush of fluid. It literally was such that I expected one or both of the babies to come out right along with it. I went to the bathroom, to find that not only had I completely soaked the pad, but the fluid was actually stained pink. 

I contacted Dr. E, who said to come see him at the office ASAP. We were able to get an appointment first thing in the morning, less than two hours after this all happened. The u/s showed basically the same as last time: babies alive and well, donor baby had improved even since last Thursday, long and closed cervix. However, there was now even more fluid between the amnions and the chorion, essentially squashing our hopes that this leak was going to seal on its own as it was supposed to. Unsealed, the membranes could completely rupture any time (rather than "just" the high leak we are currently seeing), which would bring on a whole new medical nightmare with a bleak outlook as far as survival of the babies.

This brings us up to where we are at right now. Our best hope at this time is to undergo yet another procedure known as "amniopatch," carried out by the same doctor and at the same hospital in L.A. where the laser surgery was originally done. Basically, they will make a patch out of some of my blood, plus platelets and some other stuff, and then inject this into the amniotic sac of Baby B. In 2/3 of cases, this will successfully seal the leak. This is again done in the OR, and requires an overnight stay at the hospital. I guess it kind of works on the same principle as adding slime to a bust bike inner tube.

As of right now, we are slated to be seen by Dr. C again first thing Wednesday morning, for all the pre-op blood work, ordering the platelets, etc., with surgery scheduled for Thursday, exactly two weeks after the original laser surgery. While this is our best shot at saving the babies, the odds are not that great, not as good as they were for the laser ablation (which successfully fixed the TTTS). 

The prospect of yet another surgery is overwhelming on more levels than I can express. I am now on "modified bedrest," meaning I have to stay put in bed or on the sofa all day, except for briefly getting up to go to the bathroom, grab a bite, etc. No chores or cooking, no stairs, no driving. The children at home have been dealing with the events of the last few weeks by being exceptionally hyper/wild/loud, unable to settle down with their typical routine, and the younger ones are also very whiny and needy. While understandable, this is a majorly compounding factor on my sanity right now.

Then there is the fact that we are now faced with yet another sky-high medical bill. So far in December, we have incurred over $25,000 between seeing Dr. E in Phoenix, and the surgery in L.A. While this was a major financial stretch for us, it was doable, though it did pretty much max us out as far as what we could handle. My insurance will not kick in until January 1st, so anything between now and then we will continue to be liable for. For the first surgery, the hospital was willing to work out a 1-year payment plan with us for their part ($13k), though reluctantly. I am not at all confident that they will let us add the charges for this second stay to that outstanding balance. Not to mention all other costs involved. 

Please, continue to pray fervently for this pregnancy. First and foremost, that the surgery this week will be successful, in spite of the odds not being very reassuring (though our best option). Please pray that I will be able to keep these babies in until they at least have a fair chance at survival outside the womb, though ideally, of course I would love to go full term. The babies are both doing well after being healed of the TTTS, but are now facing the danger of premature birth due to this new issue. Please also pray that we will be able to figure out the financial challenges ahead. Already, God is opening doors for us in this area, and we have received unexpected assistance from a couple of private entities.

I will attempt to update from the road as I have opportunity. For some icing on the cake of unfortunate events, a few days ago, one of the older kids was reaching up high on the book shelf to get his Bible down to read it, and in the process accidentally knocked down a few other books, which in turn sent my laptop/tablet tumbling to the floor, where the screen shattered, rendering my computer useless. The type of table I have (Windows Surface) is fairly new, and few places in town offer screen repair for it. Those who do need to order parts from overseas, and then want an arm and a leg for the repair. Not an option right now with everything else going on. So if I do not respond to emails, post comments, or give an update as soon as I would like to, it's likely because of my computer issues.

Thank you for following our story, and keeping us in your prayers.

~~~~~~~~~

Edited to add: We are very grateful to those who have offered financial aid. If you would like to help, you can follow the link below to a "pitch in" account for our expenses.




Alternatively, you can make a check out to Steven Anderson, and mail it to:

Steven Anderson
c/o Faithful Word Baptist Church
2741 W Southern Ave, Suite 14
Tempe, AZ 85282

Please realize that any funds you send would be considered a private donation, and not tax-deductible. If you donate to our church, Faithful Word Baptist Church, you would be donating to the church as an organization, not our family and our personal expenses.

Many thanks to those who are wanting to assist us during this time. More than anything, please continue to keep the babies in your prayers.

37 comments:

  1. so so so so sorry to hear this

    you take care
    just lay back, and let everyone wait on you
    pick up the pieces later

    i am praying for you all

    meg,
    waiting to hear good news,

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  2. We are praying. Thanks for keeping us updated.

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  3. Zsuzsanna -

    I'm so devastated to hear about this development.

    I immediately dropped to my knees to pray for you.

    You have been such a guiding light to me as a Christian through your blog it is the least I could do. I wish I could do more but I'm half a world away and we are broke!

    May the Lord be with you.

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  4. Oh dear lady, my family is praying for you and those precious babies! I will also be praying specifically for your.older kids; I understand how the shake-up in routine can set them wild. Praise God the babies are doing well, and thank you for sharing your updates.

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  5. Still praying for the babies. Lean on the Lord for strength during this time and remember He is in control here. Many blessings.

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  6. Thinking of you all. I know we don't agree on most things but I've been a follower of your blog for some time and I truly wish the best for you and the babies. Your whole family will be in my thoughts and prayers. Hoping for updates as you can.

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  7. praying for you and the babies. also praying for peace in your other children to help ease your suffering.
    I just wanted to share with you my story in the hope that it gives you some hope. My waters broke in the middle of the night when I was 23 weeks and 1 day pregnant with my identaical twin girls last year. your blog entry took me straight back to that night and I can completly empathise with the terrifying thoughts that were running through your head!

    I was transferred to hospital and placed on bed rest despite the girls not having much fluid left in the sacs there was still enough to sustain them. My husband and I settled in for what we were hoping to be a long 4-5 months of bed rest in the hospital but it wasnt meant to be, 3 days later I went into premature labour and there was nothing the hospital could do to stop it. Thankfully I had recieved the steriod injections 3 days prior which effectivly saved our girls lives.

    Our beautiful girls were born at 23 weeks and 4 days (far too early) but praising God after 109 days in the NICU we were able to bring them home. Our babies are now 14 months old and doing fabulously. they are passing and in some cases exceeding all of their milestones and are happy healthy delightful girls!

    I completly understand the dark place you are in at the moment and I am praying that the Lord will shine a bright light for you to show you the way.

    It was the hardest time in our life but through Him all things are possible.

    Thank you for all of your updates I will be praying for you on Wednesday (thursday our time as we are in Australia :)

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  8. Is there a way we can send a donation to you Zsu?

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  9. I live close to Dr. C, please let me know if I can help in person!

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  10. Praying for you and your precious little ones. Times like this are so difficult on everyone and it is so hard to mama from the couch but we are praying, praying praying!

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  11. Praying earnestly for you and your family during this difficult time.

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  12. Sorry to hear this. Praying for you all.

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  13. Praying for you and those sweet babies. Prayers for your family as they adjust to a new normal of you on bedrest.

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  14. I know you and your husband will most likely not go the route of seeking financial help from your extended family all over the world, including myself, but I think myself and many others would gladly contribute towards easing some of the financial burden you face. I'll of course be praying for the health of your two boys and yourself, but do not hesitate to call upon those who have received far much more from your husband in terms of wisdom, knowledge, boldness, hope, etc. The Anderson's do not need the added stress of financial worries during this trial.

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    Replies
    1. We are grateful to those who have offered financial aid. If you would like to help, please make payment out to Steven Anderson, and mail it to:

      Steven Anderson
      c/o Faithful Word Baptist Church
      2741 W Southern Ave, Suite 14
      Tempe, AZ 85282

      Please realize that this would be considered a private donation, and not tax-deductible.

      Delete
  15. Zsuzsanna,

    I will continue to pray for you and your babies, also Steven and the other children. Just so you know- when my girls were in the NICU for prematurity another baby was there who was born at 25 weeks. She's just about to turn 10 and is big, strong and healthy. Prematurity doesn't always mean terrible things. Try to think positive thoughts and know that many are praying for you and your babies. Take care of your self.

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  16. Weeping with you.
    Is 43:2~
    "When thou passest through the waters, I will be with thee; and through the rivers, they shall not overflow thee: when thou walkest through the fire, thou shalt not be burned; neither shall the flame kindle upon thee.

    Praying hard. Love you and those babies!!

    Love,
    Jessica

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  17. This comment has been removed by the author.

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  18. Heartbreaking to read of your almost unbearable stress and worry, Zsuzsanna, but I am praying as hard as I can for you and your family. Your story has touched so many people's hearts already; please know that you are surrounded by nothing but best wishes. I earnestly hope that I will return to a positive update next time I check in.

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  19. Keeping you in prayer.

    Just curious - why not apply for medicaid? You pay in to it through tax dollars. If you need it, use it!

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  20. Dear Mrs. Anderson,

    I have been reading your blog for a while. Your teachings have guided me through my times of doubt. I pray for your health and the one of your babies. I also pray for your other children as it must be very hard to be without mom who has been their companion since they were born. But, I am sure they will understand. They are very bright. Thank God you home school them! Can you imagine trusting the school district with their education?

    The reason for my comment is this. I do not have a lot of money to give. I want to make a small contribution, but I have a few questions. First, will this be a donation? Could my husband claim it on his taxes? If it is more than 600.00, the IRS requires me to issue you a 1099. Would you be okay with that?

    Also, what will happen to any extra money once all the expenses have been paid? If you get Medical (which I think you should as it is your right), your expenses will be the responsibility of the government. So, if you have extra money, how will that be used? Will Pastor Anderson continue with his quest to educate the soulless heathens or will the money go for personal expenses? I just want to know. Whatever your husband chooses to do, it will be a wise decision.

    Thank you for answering my question. As I said before, I am praying for a miracle!

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    1. You do not send a 1099 for a gift. You are allowed to give someone $600 without a 1099. In fact, it would be illegal for you to issue one to the Andersons as they are not contract labor for your business. Perhaps you should read the IRS code before you make gifts.

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  21. Still praying for you and your family. I know you know this- but reminders help. God can work such miracles. Been going through something more trying than I've been through before for the past 9 months. It's been awful. But, it's helped for me to remember all the miracles God has done in my life- quite frankly there have been many and I am humbled God continues to give these to me. May the same be true for you.

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  22. Zsuzsanna-- We also discussed perhaps helping your and Pastor Anderson out with Christmas a bit, if that is an issue for you. We'd love to purchase a game or some books to perhaps make Christmas a little more festive for the children (not to mention give them something to keep them occupied)! You have my e-mail address, so please just let us know if there is something in particular with which we can help, we know how Christmas can get financially, and this surely must be a difficult one for you and your family. Let me know and again, God bless! --Mindy

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  23. (Unfortunately, my first comment didn't post, silly thing!) Zsuzsanna, my heart dropped as I was reading your description of events, and that was even knowing that the outcome was a positive as one could hope. I am so heartsick for you during this time. I know firsthand how frustrating and difficult bedrest can be and I encourage you not be afraid to ask for help. If Faithful Word is anything like my church, there will be lovely ladies chomping at the bit to be of some help. I know that I would love to be able to make you a casserole and bring a craft to keep the kiddos occupied and I'm sure that many of your far-flung readers feel the same way. My husband and I discussed it, and although we cannot currently help you with your financial obligations due to the time of year, as soon as the first of the year rolls around we can think of nothing we'd rather do than help you pay for your sons' surgeries. You are in our thoughts often and our prayers frequently, we pray that your surgery is successful going into tomorrow and that it will be smooth as possible sailing from there. God bless you, Pastor Anderson, and your nine during this difficult time.

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  24. Anon @ 12/17 2:46PM -

    "Soulless heathens"? I doubt very much that Mr. Anderson believes nonbelievers to be "soulless;" this sort of weird, semi-comical overstatement sounds more like the colorful creation of a somewhat misinformed nonreligious internet bystander. This bizarre reference, along with your strangely pointed, and poorly considered questions make me think you have slightly misrepresented your interest in Ms. Anderson's situation, despite your protestations to the contrary.

    Nevertheless, for your financial edification:

    1. Ms. Anderson has already stated that all donations will be separate from donations to the church, so they will not be treated as tax exempt on the receiving end.
    2. As Ms. Anderson's pregnancy is not a non-profit organization, it is pretty obvious that no donations will be tax-deductible for the donor.
    3. If you are concerned about taxation, the federal gift tax does not kick in until a gift exceeds $14,000 in a single calendar year. There are provisions exempting gifts which are used to pay medical expenses even from this high threshold, but to avoid red tape and uncertainty I believe many people just keep gifts under the taxable limit. I'm fairly certain your gift will not be exceeding $14,000.
    4. Ms. Anderson has already stated that their incurred expenses so far are in the area of $25,000 and will rise significantly with the second surgery. If you really think the PitchIn fundraiser is likely to raise in excess of $50,000, then I guess your questions about the remaining balance are reasonable, but at that point I would just question the reasonableness of your assumption.

    I guess you were so eager to make some kind of ill-conceived point with your questions that you didn't bother to read or think critically before spouting off.

    I do not agree with the majority of Ms. Anderson's opinions, and I do not share her religious beliefs. However, she and her family are hurting right now, and experiencing a significant personal/family crisis. Is it really very humane of you to grill her in this manner, at this time, particularly since - as demonstrated - your questions don't actually add anything of value to the conversation? If you want to donate, then donate; if you don't, then don't. Your failure to think critically here, and perhaps more importantly, the tone of your questions, is frankly obnoxious, especially in light of the circumstances. You could always have contacted Ms. Anderson privately if you really intended to satisfy your own curiosity before donating.

    Honestly...

    Ms. Anderson:

    I wish you and your babies all the best, and dearly hope that this next planned intervention is exceptionally successful. Please take care of yourself.

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  25. Former CPA chiming in to say that the assertion of a 1099 is patent nonsense. The poster who discussed the $14,000 limit before a gift incurs tax ramifications had it right. I'm another reading who disagrees wildly with the Anderson's politics but sincerely wishes and prays for their boys to be born healthy and strong. There is a time and place for trying to make a point via your pathetic and transparent attempt at trolling, and this ain't it.

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  26. For the babies' and children's sakes please stop arguing and stabbing. Zsu you don't have to be posting or reading right now, you don't owe anyone anything. I only hope the well wishes are worth it. I disagree with soliciting donations, but I am from a country with free healthcare and I am not currently contemplating the mortality of two of my children so I do not judge. I just really wholeheartedly hope those little boys cone through this. As posted above if you want to donate, donate, if you don't, don't. The readers here are under no obligation to follow the story or help. Can we not show a little more respect in this crisis please for an anxious mother.

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  27. Hi Zsuzsanna,

    Mindy B. says it all for me. I love you and your wonderful family. I too have been heartbroken for your family and everything you are going through with the babies. I am praying for you all. What a wonderful home these babies will have. So much love from every direction with mom and dad and sibling's. Your children are out of character now, they are so used to all of your attention, but when you are comforted with your new babies everything will work out for good, as you love the Lord and are the called according to his purpose. God bless you, Proverbs 31 wife and mother.

    I count it a blessing to be able to send you and your babies a small love offering.

    Love Carol-Ann British Columbia Canada

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  28. I can only imagine how stressful this must be!! The fact that you are even able to write coherently is amazing. Can I make a suggestion? You may shoot it down already, but how about signing up the older kids for school for the remainder of this pregnancy? Stress is known to decrease the effectiveness of medical treatment, and if you are on bedrest for months, how will you manage with 7 children at home. I know very well your views on home schooling and am not trying to change them in the least. But there are exceptional (and hopefully) short-lived circumstances. If the boys and Miriam (maybe even Becky) go to school for 6 months, they will probably just be a great example to the children in their class! Then, you might be able to have some babysitting support for the younger ones.

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  29. Hi Zsuzsanna,
    Second attempt at this. I am in agreement with Mindy B. And I want you to know that I love your family. You are a Proverbs 31 wife and mother. Your children are so used to their mom always being there for them. I pray for them at this stressful time. They are such beautiful children.

    Pastor Anderson is a good man and husband and the best Bible Pastor and teacher I have ever heard in 38 years of being a Christian. Finally I am not confused about my salvation and many other doctrines. And this summer because of his encouragement I read the Bible through for the first time. I did the impossible in 3 months. I am so thankful you have a husband that loves and cares for you at a time like this. God is definitely on your side! And so am I.

    I am grateful and privileged to be able to send you a small love offering to say thank you. God bless you and your babies.

    Love, Carol-Ann British Columbia Canada

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  30. I think god will protect your babies, keep faith on!

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  31. What a terrible and stressful situation, so sorry that you have had to deal with all of this. The financial concerns on top of the physical and emotional ones must be a lot for you and you husband to deal with. I have been without health insurance in the past and it is so scary! So glad to hear that you were able to get coverage in the new year; the Affordable Care Act is such a wonderful blessing for so many people. Best to you and your family!

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