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. 

9 comments:

  1. Ah, I haven't seen you since babies showed on the scene - you look awesome!! :)

    Praying for you all!!!
    Diana

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  2. May the procedure be a great success and I pray that you carry the twins as close to full term as possible. Thanks so much for updating us.

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  3. Zsuzsa,

    I just found out about the twins. I wanted you to know we will be praying for you and your family! I wish I was out there to help. I know I am a few time zones away, but if there is ever anything I can do please let me know! I will be praying for a successful outcome from your surgery today. I miss all of you!

    Brianne

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  4. Zsu, I and my family are earnestly praying for you. May God give you peace in this troubled time and respite from your headaches and anxiety. I cannot imagine the stress you are feeling. As a mother, my heart breaks for you.

    I for one am THRILLED that you have been able to make the best of this time - even with a "date" of sorts. I donated $50 on the first day you put your PayPal up and (for all the FJers with too much time on their hands) I hope it was MY $50 that paid for your fish and chips. If there was any left over - please, I hope you treat yourself to ice cream or whatever sweet treat you would enjoy. If it helps you relax and take your mind off things for a bit, I am 100% in support of it. I gave the money to you - it's yours, do with it as best helps you and your family at this time. If that's a rental car, a hotel or a yummy meal out - go for it!

    God bless you, your husband and your 9 sweet children.

    Sincerely,
    Anonymous (yes, THAT one)

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  5. Praying for you. Here is an oil I have found very useful for headaches - just in case you are interested. https://www.etsy.com/listing/170279845/headache-migraine-oil?ref=shop_home_active
    Blessings,
    Patti

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  6. Still praying for you and your family. I am so thankful for the updates even though I am sure you are busy and have more important things to do than update us all on your blog. Nonetheless, I appreciate it!
    On a side note, I had VW beetle for many years (white like your rental) and loved it! It was a neat little car but as soon as I had my first child it became very impractical. We've since moved on to station wagons. Sigh...

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  7. Thankful you are enjoying as much as possible. Praying in the middle of the night. Love you guys and those babies!!!! Keep resting and trusting the Lord.

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  8. My family is praying for you and your family. I want you to know that your family is doing great things for God and for people who need an example for holy living. Your husband preaching has changed my families dead Christianity and changed our lives. You and Steve are not just reaching the lost but your reaching saved.

    Caleb Wilson
    Clover SC

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