Thursday, December 26, 2013

Baby Loss

This morning, we went for our 3-week post laser surgery ultrasound checkup, and the 1-week post amniopatch follow-up ultrasound. 

The good news is that the amniopatch seems to be holding, as evidenced by the fact that there was very little fluid remaining between the membrane and the uterine wall. We will need to go back in another week to see if there is further improvement. 

The heartbreaking news is that Baby A, the former donor, has passed away. He still had a heart beat six days ago, at the ultrasound 1 day after the amniopatch procedure, so he must have died sometime between then and today. He was doing well after the laser surgery, as far as having a visible bladder and building up amniotic fluid in his formerly completely dry bag, as well as the fluid levels surrounding the brain normalizing. But he had not been gaining weight as he should have been, a result of the fact that he only had about 20% of the placenta, and a velamentous chord (which means his cord was attached only to the very edge of the placenta, and mostly attached to the membrane, with the blood vessels then going to the small share of placenta he had). In the end, Dr. Elliott feels that this was just not enough to sustain his growth at this stage in the pregnancy. 

Because of the laser ablation to separate the babies' blood cycles, Baby A passing should have no negative implications on Baby B as far as survival. Without the surgery, statistically chances were Baby B would have bled out into Baby A, without blood returning to him, resulting in the death of both babies, or severe brain injuries to the surviving twin. So we are thankful that our chances of having Baby B survive are looking very good.

We are also thankful for all the love and support we have received from friends, family, and people around the world. I will not be updating the blog much for the time being, as I sit down to write the many thank-you cards I want to be mailing out, and also finish writing the missing parts of my "Diary of a Twin Pregnancy." This post today marks my 1000th post on this blog, and believe me, it's not what I had in mind to share. 

Please keep our family in your prayers. The other children are, understandably, devastated as well, and dealing with the news in their own ways. We are thankful to God who has blessed us with all the children that we do have living with us today, and for knowing that His will is what is best for all of us.



Baby B and Baby A - looking alike even on ultrasound. 


Job 3:13 For now should I have lain still and been quiet, I should have slept: then had I been at rest,

14 With kings and counsellors of the earth, which build desolate places for themselves;

15 Or with princes that had gold, who filled their houses with silver:

16 Or as an hidden untimely birth I had not been; as infants which never saw light.

17 There the wicked cease from troubling; and there the weary be at rest.

18 There the prisoners rest together; they hear not the voice of the oppressor.

19 The small and great are there; and the servant is free from his master.

Friday, December 20, 2013

Back home

My husband and I just got back home a little bit ago. When the kids saw us pull into the driveway, they opened the door and were all standing there, beaming.

Imagine my surprise when I walked in to find my entire living room and kitchen covered in beautiful flower bouquets and balloons, as well as various "welcome home" messages taped everywhere.


The flowers and balloons were gifts from the families at our church. They are gorgeous, and smell wonderful. I am so very thankful for all the love and support we have received from our people during this time. Both with the last surgery and this, someone brought dinner to my family every single night while we were gone, to help make things easier back here at home.

I am so thankful to have all these beautiful things to look at and cheer me up as I will have to continue on modified bed rest for at least another two weeks. To everyone at our church: THANK YOU so very much for your prayers, support, the meals, and all the love to our whole family!! :)


As far as the appointment with Dr. C this morning, it really went well. I have only had minimal leaking since the amniopatch yesterday, which had worried me because I had been told to expect a lot. As it turns out, not leaking, or only leaking a little, is perfectly fine. Even though we won't know for sure if the patch worked, and will hold, for about two more weeks, it looked very promising on the ultrasound today. Already, there was much less fluid between the uterine wall and the chorion (outer sac) of the babies. Even if it never leaks out, the body will absorb it over time, and the patched membranes ***should*** seal to the uterine wall at that point, further reinforcing the patch. I should get an update next Thursday (12/26) at my 1-week post op appointment with Dr. E (which is also my 3-week post laser appointment).

Both boys are doing great. The fluid level on Baby A (former donor) is still increasing and now in the normal range, while the heart muscle on Baby B (former recipient) that had appeared thickened before due to the extra strain of too much blood volume has now normalized. The fluid levels on Baby A's brain have also normalized, and they generally look very much alike even on ultrasound, and closer in size than before. I will have to scan and post some of the bazillion ultrasound pictures I have of them. They look just like Baby Stephen!

Thank you so much for your continued prayers.

Thursday, December 19, 2013

Thursday update

The procedure this morning went well. As I mentioned before, we won't know if the amniopatch will hold or not for a week or two. I have been told to expect a lot of amniotic fluid leaking tonight and tomorrow, but have so far only leaked a little while still in the recovery room.

Speaking of recovery, I am absolutely wiped out. I was wheeled from the OR to recovery almost 8 hours ago, and still don't feel back to my old self. Two weeks ago, after the much more invasive fetoscopy, I was wide awake and chipper as soon as the surgery was over. Not sure if this is a result of anesthesia, exhaustion from the events of the last week(s), the IV antibiotics (before this month, I hadn't had antibiotics in probably 20 years), or a combination of all of these. 

In addition, my headaches pre-surgery today were non-stop, and hardly bearable. I believe they are caused by tension in my neck, plus extremely low blood pressure (as low as 89/60), combined with low blood sugar from fasting since midnight, as well as being dehydrated from not being allowed to drink, either. In any case, when I was moved onto the operating table, the change in position made the headache excruciating. The anesthesiologist caught on to this, because shortly thereafter, I felt my mouth and head go somewhat numb. I could still feel the pressure, but the pain was gone. When I asked if they had put something in my IV for the pain, they told me yes. So part of my sluggish recovery may be due to the pain meds, which I am also not used to.

I have been in my hospital room since early this afternoon, mostly just dozing, reading a little bit, listening to my husband telling me stories, etc. He just ran to pick me up some dinner from a real, authentic Hungarian restaurant just down the street from here. Yum - I can't wait. I always get homesick when I am not feeling well.

Tomorrow, I will be seen at Dr. C's office in the morning. They are mostly just checking to make sure both babies are doing well. When I first found out that my midwife found two heartbeats, I started crying. Now, the words I wait for more than anything each time they turn on the ultrasound machine are "There are two heart beats!" Perspective changes everything. 

Thank you all for your continued prayers. Please pray that the boys are well in the morning, and that the amniopatch will seal the leak.

Wednesday, December 18, 2013

Today's update

We left Tempe yesterday, Tuesday, December 17th, after breakfast. My husband and his mom had picked up the rental car the night before, so all we had left to do on Tuesday morning was just up and leave. 

The rental car situation was funny, in a way. My husband had reserved an "intermediate" size car, which is supposed to be a "4-door, 5-passenger plus luggage" size vehicle. However, when he went to pick up the car, the person at Payless Rent-A-Car was aggressively, and even rudely, trying to upsell him to a larger vehicle, at almost double the cost of what we were paying. We neither needed a bigger car, nor did we want some gas-guzzler for a long-ish road trip, so my husband insisted on just getting the car we had a reservation for. When he got to the garage to pick up the car, he was handed the keys to - get ready for this - a Volkwagen Beetle!

Look - a lumberjack that drives a VW bug!

Yes, folks, Payless thinks that a 2-door lowrider with barely enough room to take our minimal luggage for a 4-day trip is now a midsize sedan! In spite of my husband's protests, the branch in Phoenix was refusing to give him a bigger car. Seeing as it was almost 10 pm, and we had to leave the next morning and didn't really have another alternative, my husband took the car. In Payless' defense, I will say that I called their corporate office to complain, and the lady there was aghast that they gave us this little economy car. Clearly, the local branch in Phoenix didn't have our vehicle class available, and instead of giving us the next available size up (which is what they are supposed to do), after failing to upsell my husband, they decided to stick us in this thing. Seeing as the branch in Phoenix is franchise owned, I took my complaint to them, but have not heard back from the manager in spite of promises to the contrary. Not really my biggest concern right now, but still...

So much for bringing along a folding wheelchair for me to use, as I am supposed to only do minimal walking... It has been funny, really, in a strange sort of way. It's just me and my husband, the open road, and... a VW bug!

I should mention that early Tuesday morning before we left, I yet again experienced two more major amniotic fluid leaks, bringing my total up to 5 by now. In between these, I do not leak at all, but it is incredibly unnerving. Each time I think the bag must be ruptured beyond repair. I have never had my water break until I push the baby out, so to me a major gush of fluid means baby is right on its heels. Which in this case has not happened, but it really worries me all the same.

We arrived in Long Beach yesterday (Tue) evening. Since the hospital is in Hollywood, we could not stay at a hotel there because the area is pretty bad, and the hotels expensive and dirty. Long Beach is beautiful, on the ocean, only about 30 minutes drive from the hospital, and much more affordable for a much better hotel (thank you, Priceline!).

My husband picked up a fish dinner for us at a little independent restaurant that made super-healthy foods, which we enjoyed by the pier overlooking the bay. I left my phone sitting on the bench where we had sat at first, before moving to another spot about 20 feet away. Just as we were finishing up dinner and ready to head back to the hotel, a random bicyclist spotted my phone in the dark on the park bench, and then asked us if we were missing a phone. Already having had my tablet broken this week, I am so thankful my phone didn't also get lost!

Today (Wednesday) morning, we were at Dr. C's office bright and early for an appointment to assess the situation. Their findings were pretty much identical to those at Dr. E's office back home. The babies are doing great, and recovering exceptionally well from the first surgery. I guess the fluid I am leaking is what has been building up between the chorion (outer bag) and the uterine lining. This is rare, and not supposed to happen. It only affects about 4-5% of women undergoing fetoscopy (like the laser surgery I had), and about 1.5% of women following amniocentesis. In my case, the first surgery was carried out before 18 weeks. Ideally, they prefer to do it after 18 weeks, because the membranes are not fully sealed to the uterine lining before then. However, given the condition of our Baby A (former donor), we didn't have time to wait until I crossed that threshold.

The major risks of a ruptured bag are infection, and pre-term birth. The new, cutting-edge treatment approach that is still virtually unavailable in most of the world is to perform a procedure called an "amniopatch." Basically, a substance made up of platelets (blood clotting cells) and clotting factors (cryoprecipitate) will be injected via amnio needle into the space between my uterine lining, and the chorion. Sometimes, the mixture is injected directly into the ruptured amniotic sac of the affected baby, but being able to avoid that is preferable. The whole procedure only takes about 5 minutes, though it must be carried out in a sterile OR, fully prepped, so start to finish it will take closer to 2 hours on my part. Then it's off to recovery, and an overnight stay at the hospital. 

My procedure is scheduled for tomorrow morning, with the follow-up ultrasound back at Dr. C's office next door to the hospital on Friday morning. Unlike with the laser surgery, we will not be able to tell immediately how successful the procedure will prove to be. It patches the leak in 2/3 of cases, but it can take a week or two to start seeing results. In fact, I was warned to expect a lot more leaking and bloody/brown discharge following the procedure, as the excess fluid drains off. Yikes! If I continue to leak, standard treatment is hospital admission and bedrest at viability (24-26 weeks - mid to late January for us), close monitoring for infection, and immediate delivery of the babies if their situation deteriorates. So you can see why I would really, really like for this patch to hold!

(On a side note, this procedure cannot be carried out after spontaneous rupture of the membranes, only those following a diagnostic procedure or fetoscopy.)

We were done with the doctor and hospital admission process by around noon today, and headed back to Long Beach, where we enjoyed some fish and chips along the pier for lunch. "Modified bedrest" means I am okay to sit long enough for a meal, shower every day, and do minimal walking on flat ground.





My husband has been going out of his way (yet again) to make this trip as enjoyable and comfortable as possible, and trying to ease my anxiety. He has the greatest sense of humor, and keeps me laughing until I worry about further rupturing my membranes. I have never before struggled with anxiety during any of my pregnancies or otherwise, but I do find myself feeling slightly panicked a lot this time around. I have also had the worst tension headaches since Monday - they just randomly strike and then go away again. Being away from all the kiddos, in a quiet hotel room with no chores or work to do, has been very different for me. 

After lunch, we headed back to the hotel, where I took a nap. In the afternoon, my husband drove me around Long Beach, where I had wanted to look up close (well, from the car) at the "Queen Mary" that is at dock here. It is a big ocean liner, that now serves as a restaurant, hotel, and amusement center. 

Our view at lunch, with the Queen Mary in the background

Now, I am relaxing at the hotel, while my husband is visiting Pacific Coast Baptist Church for their midweek service. He promised to bring me Round Table Pizza on his way back, so I am holding out for that. There will again be no food or water allowed for me past midnight tonight. Not being allowed to drink is much, much worse than not being able to eat.

On a side note, today marks 4 weeks to the day that we even found out we are having twins. It seems so much longer! We have had one surgery, heading into another, plus tons and tons of ultrasounds, scares, happy moments, and victories. Life is definitely moving in the fast lane.

Many, many thanks to all of you who have prayed for us, supported us with encouraging messages and comments, brought meals to the family at home, donated financially, and prayed for our babies. We are overwhelmed by the outpouring of love and support, and very thankful for every bit of it.

I am hoping to update again tomorrow evening from the hospital, after the procedure, and after sleeping off the anesthesia. 

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.

Friday, December 13, 2013

Quick update

I wanted to share a quick update for those of you who have asked about the outcome of the 1-week post-surgery appointment yesterday.

In the very early morning hours yesterday, we had a major scare - and I am not saying that lightly. More on that when I get caught up to that part in the story; I am still about a week behind in recounting the exact events. You can imagine my anticipation of the appointment yesterday afternoon!

The appointment actually went very well, and allayed all my fears. As far as the babies are doing, the little donor baby has grown some, and has built up more fluid, to where his fluid level is now almost in the very bottom of the normal range, while the recipient baby's fluid has also come down into the normal range (1.8 and 5.some cm, normal range is 2 - 8 cm). We saw lots of good movement on Baby A (donor), and whereas he had been wedged into my lower left side, he was now in a much better position, head down along my left side. Both babies had good heart beats, and the brain issue they were concerned about a week ago has completely normalized, and the measurements are now virtually identical on both babies. We really could not have hoped for a better outcome just one week after procedure. 

I am hoping to continue recounting the whole story later today or tomorrow. 

Many, many thanks for your continued prayers. This has been a roller coaster ride unlike anything I ever expected.

Wednesday, December 11, 2013

Diary of an Identical Twin Pregnancy, Part V - My Hollywood Experience, Day 1

Part I
Part II
Part III
Part IV

I woke up fairly early Wednesday morning at our hotel in Palm Desert, mostly due to anticipation about the days ahead. It worked out well, because we still had a couple of hours of driving to do, and needed to get on the road early enough to make it through L.A. traffic and be on time for our appointment just before noon. Both the doctor's office, as well as the hospital, are located in Hollywood, which is absolutely terrible traffic-wise at any given time of day. Not the ritzy part of Hollywood, but the crowded, older part of town.

My sweet husband, knowing I would much prefer a hot breakfast from Panera Bread (which we don't have in Arizona) over the one offered by the hotel, told me to stay in bed and relax while he picked up food for us. Breakfast done, we got ready, and were out the door sometime around 7 am.

We got to L.A. with enough time to spare to stop for a quick lunch before heading to the clinic. This appointment was for another in-depth ultrasound and assessment of the babies. A very sweet, skilled, and thorough (!!!) technician spent a good 2 hours going over and over and over the babies, measuring and double-checking everything in great detail. When she was finally done, she reported her findings to Dr. Chmait. We met him shortly thereafter. First, he explained the situation to us - basically, all their numbers were almost exactly those found by Dr. E's office back in Phoenix a couple of days earlier. In order for a diagnosis of TTTS to be made, the deepest vertical pocket (DVP) of the recipient twin's amniotic fluid must exceed 8 cm, and the DVP of the donor twin's fluid measure less than 2 cm. On Monday, our babies had DVPs of 11.1 and 0.7 cm, respectively, numbers that were almost identical in the findings on Wednesday, except that donor twin's fluid had decreased to 0 cm.

As far as treatment options, he reiterated what I had already learned from Dr. E. He also explained that he only carries out laser ablations of the placenta in an attempt to save both twins, but does not carry out the type of laser surgery in which the cord of the donor twin is cut off from the placenta completely, basically killing that baby, but saving the other twin, something he deemed "unethical".

While I am this subject, I would like to dispel an accusation I have received in a number of comments this week: that I am seeking care from "baby killers" and "abortionists". These doctors are high-risk specialists. They work full-time to save babies, not to kill them. I know of many moms who switched their care to Dr. E, after their previous doctor told them he would not continue their care unless they "selectively reduced" the pregnancy, yet Dr. E took them on and did all he could to save all the babies (often successfully). Dr. C does not even have a regular client base - all he deals with are urgent cases, most from faraway and out-of-state, and all he performs are fetal surgeries. Mostly laser ablations, but also fetal blood transfusions, stents placed in babies in the womb, etc. He literally works only on saving the lives of unborn children through highly-skilled, specialized surgeries. That alone boggles my mind - I would never be able to take on that sort of responsibility. Yet he came across as a very down-to-earth, humble man, entirely devoid of the "God complex" so many doctors are guilty of. All that aside - when there is a life (or two!) at stake, I think few of us stop to inquire about the specifics of the person doing the saving. If my loved one were drowning, I would be thankful for anyone to pull them out and save their life. It doesn't mean I condone of everyone and their life styles, just because they also do something good or heroic on occasion. God's laws are there to protect us, to serve us as humans in our best interest. When obeying these laws becomes destructive due to extenuating circumstances, the Bible is clear that they can be suspended in certain, limited instances, such as the ox or ass falling into a ditch on the Sabbath day, and needing to be rescued (even though typically, working on the Sabbath was strictly prohibited).

But back to the appointment - with the decision made that we were going ahead with the surgery the following morning, we now had to fill out all sorts of paperwork, arrange payment with the hospital next door, get my blood and other lab work done, and so on. When all was said and done, we had been there for over 5 hours!

We had a quick dinner of PB&J and milk on the road as we headed to the evening church service at Pacific Coast Baptist Church that night. This was not for their main midweek service, but rather one of the services they offer in the local communities. I am really glad we were able to go - being able to sign the hymns, hear the preaching, fellowship with other believers, and having them pray for us was a great blessing to us.

After church, we headed to our hotel, which was right on the coast in Long Beach. It was a beautiful hotel, with a fabulous restaurant. Being on strict orders not to eat or drink past midnight, we headed there around 9 pm for a late, and hopefully filling, high-protein dinner of steak. It was absolutely fabulous - even if both my husband and I dozed off at the table while waiting for the meal to arrive. :) So as of 10 pm, I really was stuffed!!

I cannot overemphasize how incredibly awesome and accommodating my husband was on this entire trip. He is always loving and caring, but especially on this trip, he was just going out of his way even more to cater to my every need, making me as relaxed and comfortable as possible. Plus, with his mom at home watching our other kids, we both had complete peace of mind about them being cared for completely, so we didn't need to waste any time worrying about them. We were hardly to our room when both of us just collapsed into bed, entirely exhausted from the long day behind us.

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.
 
 

Diary of an Identical Twin Pregnancy, Part III - We have a Problem!

Part I
Part II

Monday, December 2 - At the appointment at Dr. Elliott's office, a sweet tech does an in-depth, high-level abdominal (stomach) ultrasound exam. My husband is unable to come along, because it would mean having to bring all the kids, which I do not want to do. Instead, Isaac comes along, hoping to catch a glimpse of his brothers. My midwife is with another client and isn't able to make it, though she had wanted to.

Dr. Elliott comes into the exam room for a few minutes early on, and he immediately can identify the much-prayed-for membrane on the screen (meaning our babies do NOT share their amniotic sac, which rules out the "monoamniotic" diagnosis I had dreaded). I express my relief, but he is quick to let me know that even after just briefly watching the screen, he is almost certain of TTTS even without receiving the exact measurements yet. The tech spends about 2 hours taking all sorts of measurements, and explaining to me what she is doing all along. Even to my untrained eye, it is obvious that one twin (and his sac) is taking up the vast majority of the uterine cavity. This baby is overly active, while the other twin is hardly active at all, and wedged into my lower left side. It is also obvious that a bladder is not visible on the smaller (donor) baby due to low fluid levels.
After the ultrasound, Dr. E spends about an hour in his office explaining the results, the consequences, treatment options, etc. He is an elderly man that has been seeing nothing but high-risk  pregnancies since before I was born. He doesn't mince words, while being very easy to follow and understand. The situation is grave, and urgent - not in minutes or hours, but in days. The babies have stage II TTTS, with intermittent markers for stage III (stage V is death of one or both babies).

In an nut shell, a baby's cord (two arteries, one vein) goes into the placenta, where the blood vessels branch out like roots on a tree. Because our boys share one placenta, some of their blood vessels have made unfavorable connections. If an arterial branch from one baby connects with an arterial branch of the other, it is not really an issue because the pressure of blood flow from both sides is roughly at an equilibrium. Same with a vein-to-vein connection. Problems arise if an artery from one baby hooks up to a vein of the other. Because arteries are high-pressure, they will bleed out into the low-pressure vein of the other baby. This means the boys' blood cycles are completely connected, with a net loss of blood volume to the "donor" baby, and a net gain to the "recipient."

The condition is very dangerous to both babies. One baby is in danger of dying from severe anemia and dehydration, leading to brain damage and cardiac arrest, while the other baby struggles with an excess of blood volume that is likely to also lead to cardiac arrest and death. Untreated, the chances of the babies surviving are about 5% for one twin, 0% for both.

There are few treatment options available, all of which I am only slightly familiar with. Remember, this is only 12 days after finding out we are having twins - I have much to learn yet. Our three options are expectant management, laser ablation of the connecting vessels between donor and recipient twin, or reduction of amniotic fluid. There are two other options that we will not even consider - terminating the pregnancy altogether, or "selective reduction" of the donor twin.

Dr. E. explains the pros and cons of all three of our options. We are in too urgent of a situation to safely be able to consider watching and waiting (about 15% of cases will resolve on their own over time, presumably due to more favorable blood vessel connections developing).

Laser ablation is his first recommendation, though the procedure is the most invasive of all the available options. He quotes the babies chances of survival as roughly 80% for the recipient, and 20-30% for the donor. We also would have to travel out of state for this - I am told clinics are available in either San Francisco, Dallas, or Houston.

Reduction of amniotic fluid is not really a cure, it more just negates the effects of TTTS. The babies cope with their unfavorable blood volumes by either secreting the excess blood serum into their amniotic sac via their urine (recipient), or holding on to all fluids for dear life to prevent further dehydration (donor). On a side note, as it turns out, Dr. E is the doctor who first thought up and pioneered therapeutic amniocentesis 30 years ago. It has since become one of the few available treatment options. Of all docs to carry this out, he is the safest and most experienced one to go with.

I tell him I will talk the options over with my husband. This information is all coming fast and furious, and mostly unexpected. On the drive home and after getting home, I explain the situation to my husband. He immediately grasps the gravity of the situation. Based on the limited information we have received so far, it seems to us that the amnioreduction is less invasive (it is), and offers better survival rates (it doesn't). We figure it is worth a try. If it doesn't work, I could always move on to the laser treatment next (NOTE: I did not know that most clinics will not carry out laser surgery after amnioreduction). I call the office back immediately to get the soonest possible appointment for therapeutic amnioreduction, the treatment option we are choosing to go with. I get an appointment for two days later, Wednesday afternoon, to be carried out at the hospital.

Next, I call my mother-in-law to ask if she can come out right away, so my husband would be able to go with me to the amnio, and any necessary repeat visits. She flies in late that same night. She is seriously wonderful like that.

Saturday, December 7, 2013

Diary of an Identical Twin Pregnancy, Part II - Problems on the Horizon

~~~~~~~~~~
Friday, November 22 - My midwife sends the transfer papers to Dr. Elliot's office.

Monday, November 25th - I receive a call from Dr. E's office to schedule an appointment. Due to Thanksgiving that week, the soonest one available is for the following Monday - one whole week away.
Our family spends the rest of the week going on with life as usual. This early on, humanly speaking, there is virtually nothing that could be done to save the pregnancy, except for reducing stress as much as possible. My main concern at this point is the monoamniotic diagnosis from the first ultrasound. While misdiagnoses are common, this is a very severe complication that could very likely kill both babies. I am being optimistic that the appointment on Monday will find the babies healthy and well. The concern about developing TTTS is only peripheral in my mind, overshadowed by the mo/mo diagnosis.
I make sure to rest even more than usual, and continue to ensure I am getting lots of fluids and protein. We have a family Thanksgiving, but take all week to prepare the meal, with help from my husband and older children.

 
 A little craft time with the girls



 Nap time for crabby babies

 Miriam made this diaper cake for me all by herself during nap time. She is a sweetie, and always surprising me with cute things she makes. 


 Dessert: apple strudel...

 ... a la mode

 We played many fun rounds of "Taboo" that day

  Singing hymns




Breakfast: pumpkin pie and hot chocolate

 Another shortcut - we switched to paper plates months ago, when this pregnancy had me wiped out with more-than-usual fatigue. Yes, even for the Thanksgiving dinner. :)

 Homemade kettle corn for story time - SO good!

We then spent the weekend switching summer to winter clothes, exchanging advent calendars, and buying and setting up the Christmas tree.
 


 This little dude just got a little chocolate calendar this year (which he enjoys very much).

In hindsight, it really worked out for the best that I could not see the specialist until after the holidays. I had been praying that if it would be better to see him sooner, they would get a cancellation and be able to fit me in. But like I have mentioned before, nothing much can be done before 17 weeks of pregnancy or so. Knowing that something was seriously wrong, but being unable to do anything about it, would have had me worried sick the whole time.


Friday, December 6, 2013

Diary of an Identical Twin Pregnancy, Part I - We Find Out

The last two weeks have been a whirlwind of events for our family.
 
Before I start the series on my unexpected pregnancy with identical twin boys, I would like to jump ahead in the story to where we are at today: on our way home from a hospital in L.A., recovering from fetal/placental laser surgery just yesterday. As of 24 hours post-surgery, both babies are alive. Baby B is faring very well and has a great chance of survival. Baby A,  the smaller baby, is still in critical condition, though showing great progress and improvement even since yesterday. Pre-surgery, we were only given a 50/50 chance of Baby A surviving (as opposed to 0% without the surgery), but are encouraged by the promisingly quick improvement since the procedure.
 
Please join us in praying for the survival of our babies, as well as their and my swift and complete recovery. If they survive, it will first and foremost be due to the grace of God. In addition, we he have been receiving expert care all along the way since the earliest warning signs were detected. Even as recently as 10 years ago, babies like ours were doomed to both die.
 
For now, let's back up the story to when it all began.
 
~~~~~~~~~~~~~~~~~~~
 
Wednesday, Oct. 23 - My first prenatal appointment with this pregnancy at 11w 5d. I was measuring a little large for dates (16cm), but anything before 20 weeks is considered fairly normal for a grand multipara (fancy term for a mom who has given birth to lots of babies). I jokingly told my midwife I was suspecting twins, but that I almost always suspect that early on, because it's somewhat of a fear of mine. Too early to check for two heart beats with a Doppler.
 
Wednesday, Nov. 20 - My second prenatal appt. at 15w 5d, exactly four weeks later. Now measuring about 23 cm, which is definitely a possible indication for multiples. The midwife checks for second heart beat with Doppler. Several minutes only reveal one heart beat, then, suddenly, a second heart beat deep on the far lower left side, hiding behind a major aorta. Midwife tells me she is 98% sure it's twins. I start crying, immediately overwhelmed at the thought of carrying, birthing, and caring adequately for two babies at once.
 
My midwife schedules a diagnostic ultrasound for late afternoon that same day
 
The ultrasound shows two babies. There is only one placenta (monochorionic), so they have to be identical. Tech initially thinks it might be girls, which surprised me because my feeling all along had been identical twin boys. However, we clearly catch a glimpse of boy parts on both shortly thereafter. So identical twin boys it is! This first ultrasound takes about 90 minutes.
 
Thursday, November 21 - My midwife receives the detailed u/s report. Concerns from the report include a possibility of monoamniotic twins (one sac, "mo/mo twins"), which is a very rare and dangerous condition, as well as twin-twin transfusion syndrome (TTTS) due to size discrepancy between the babies. My midwife strongly suggests seeing an MFM (maternal-fetal medicine) specialist, and suggests Dr. Elliot, who is considered the #1 expert in this field, nationwide, and happens to have his office just miles from our house. Moms with high-risk pregnancies move to Phoenix from all over the country to be able to have him provide their care. 
 
My midwife has worked with him in the past. She called him personally to discuss my case, as well as my concerns about patient modesty. I am fine with having my stomach exposed for ultrasounds by him if necessary, but want only to be seen by one of the female staff for anything that involves my private areas (unless we are faced with a life-and-death, emergency situation). He ensures her that his role is more that of a consultant than anything else, and that it will not be a problem.