Thanks, Mystery Giver!!

It's funny how just about the time you start to panic about something, God steps in and provides... making you feel silly for worrying! First of all, I want to thank the Mystery Giver who sent us the letter and money around Christmas for the babies. I have to admit, my faith has been a little shaky as we get closer to the end of this pregnancy with no baby gear. One day, I was especially down about it, and I assume it was some kind of early "nesting" or something. I decided on a whim to check Craigslist... again... for some of the bare essentials I knew we needed to get started. My current hang-up? A baby bed/bassinet and car seats. I know there are other things you need to get started, but these were the two things I was thinking about. Okay, obsessing about! I have been checking Craigslist on the rare occasions I can get to the computer, but the only car seats I was finding were too old or too dirty. Well, this one day I decided to price new ones, and boy did I get sticker shock! We were blessed to find Elianna's car seat on clearance (part of a stroller travel system) for about half the price of a single car seat, and we used that for Selah as well. And OF COURSE that stuff is all gone now, since I purged my house of anything "baby" last year. Argh. So, back to Craigslist I go, and I find a listing that said "Twin Boys Baby items." Hmm, that sounded promising! I clicked on it, and found a phone number, which is unusual for Craigslist. I called the lady, and found out she was a grandma to identical twin boys who just turned a year old. (And apparently, she was having the same baby purge issue I had last year.) Included in her items for sale? Two "like new" car seats EXACTLY like the new ones I had picked out. The first price she quoted me was a bit higher than I was hoping, but she eventually lowered the price... and then threw in THREE bouncers, a bag of misc baby stuff/toys and two diaper boxes full of adorable little tiny boy clothes (including a few cute matching outfits!)! All of this was for the exact amount that the Mystery Person sent us in the mail, about the price of one new car seat. YAY!!!! The same day I found one of the bassinets I wanted on ebay for half the price of a new one. (Now we just have to pray I find another one like it... they are hard to find!) I was feeling pretty good about these finds when my mom calls and said she found a rack of onesies at Target for 25 cents each. (Naturally, she cleaned them out!) By the end of the day, I had learned my lesson. God knows what we need, and He will supply our needs. Oh, I'm sure I'll still worry now and then - I'm not that spiritual! But, it did remind me that I can't control everything in our life, and sometimes I just have to let go and let God take care of it.

The Big 3-0!

Thanks to everyone who called or e-mailed me for my birthday! I can't believe I'm 30!!!!! Aaack. Oh well, right now I feel about 58... but that will (hopefully) change. We had to cancel my party due to a snowstorm, but it was still a nice evening with our immediate family. Hey, I got gifts and nachos with guacamole. I always love gifts, and lately I have been having insane cravings for spicy Mexican foods. (Which surprisingly don't make me sick. Go figure.) So, I was one happy fat lady! I certainly would NEVER have guessed I'd be preggers with twins on my 30th birthday. I thought the baby days were over!!!!! Anyways, thanks again to everyone who made it a special day for me.

Specialist Consultation

I had a consultation with the specialist, and he confirmed the TTTS diagnosis. This was not a big surprise, almost a relief after not knowing for the last few weeks. The good news is that the amniotic fluid levels are not severely imbalanced enough to warrant treatment at this time... but the bad news is that this can change within a week's time. SOOOOO, you guessed it! I get to keep up the weekly ultrasounds. Yuck. We will be going back January 2nd for a complete scan of both babies (weights, fluid levels and all the other goodies) and we will see how far the TTTS is progressing at that point. I feel like a walking time bomb, since at this point the TTTS is mild enough for both babies to survive, but just as I was drawing a breath of relief he pointed out that it can go from mild to severe in a week. ARGH. Again, the laser surgery is only possible for another few weeks, and after that things are more dicey as far as treatment and risks for the babies.

I also need to clarify some things about the specialist. I talked to my doctor (about the things I had complained about earlier) and I found out I was not yet transferred to his practice and/or had become his patient! No wonder he never talked to me - he didn't know I existed. Poor guy, and I was so offended. My doctor simply sent me there for the ultrasounds since she wanted techs that were familiar with high-risk pregnancies. Once she clarified that, I felt much better!!! Also, he is not against the surgery, as was my initial impression, and in fact refers patients to a clinic in Ohio that performs them. Talking to him about the surgery, he seemed very well-informed about it and had indeed sent patients to get it. The only reason he only performs the amnio reduction treatment is simply because he refers all the surgery cases to the better equipped clinic in Ohio. *Another sigh of relief.* As for not diagnosing it, my initial ultrasound reports showed such mild symptoms progressing at such a slow pace (TTTS often develops and progresses quickly) that he did not see cause for concern. Now that the symptoms are more obvious, I am getting more detailed reports from him to my doctor and he is taking much more interest in my case... even though I am still not technically his patient. Overall, I feel much more comfortable with the situation now!!!! At least as far as trusting them with my medical information/diagnosis/treatment options.

As for the babies, I can still feel both moving around. This is a good sign!! The larger baby's heart is not quite as enlarged and does not seem to be under stress any more. Another good sign!! And the little one is still kicking and squirming (even did a somersault) which shows he has enough fluid to survive at this point. Yay! Now just pray that they stay put in there for a few more months, and that the TTTS stays mild enough for them both to grow strong and healthy.

Also pray for my heart condition. It is very difficult to live with and try to take care of two energetic girlies without getting really sick. I am hoping to avoid full bed rest as long as possible, and at this point the doctor is allowing me to do partial bed rest. She does not want me on my feet unless necessary, and she wants my rest times to equal my activity. Again, with two little girls this is not always possible , but we are plugging along!!!

Thanks so much for all the prayers and support. I know I keep saying this, but it's true: we could not get through this trial without all the help we've been getting. I'll give you all the new info after the 2nd, just keep in mind it takes me a while to get to a computer!!!

More ultrasounds, less good news

They have increased my ultrasounds to every week - UGH. My uterus is swelling quite rapidly, and I am now measuring at over 7 1/2 months although I am just hitting the five month mark. (This is causing some concern, since excess fluid is a sign of TTTS. You will obviously be bigger when you carry twins, but I went from running about 4 weeks ahead in size to over 8 weeks ahead in size in a matter of three weeks.) Also, there is now a noticeable fluid imbalance in the babies' sacs as well as the larger twin having an enlarged heart. The twins are also about 25% different in size, although the little one is growing at a decent rate considering his condition.

I have been exhaustively researching TTTS treatments as well as talking things over with my doctor. (Information gathering is my coping mechanism!) I really agree with my doctor that the laser surgery has the best outcome with the least risks, but since I (well, technically the babies) am not even at Stage 1 TTTS (if the diagnosis is confimed) most specialists would do the amnio reduction first. Also, there is the issue of the surgery being so highly specialized that only a handful of Maternal-Fetal centers/Children's Hospitals even do the surgery. Texas Children's Hospital seems to be one of the main hospitals with this specialty, but my doctor is also talking to specialists she knows for recommendations. I am less concerned with it being close to home as I am with it being a doctor(s) who is very familiar with the procedure!!! Also, we haven't been able to get a clear answer from our insurance, but at the most they will cover a portion of the surgery.

As you can see, we really need your prayers as we make these big decisions over the next few weeks!!! The latest I can get the laser surgery is mid-January, and after that the outcomes are much more grim. So we are getting down to the wire here, and we are so thankful for the prayers and support of our friends and family during this difficult time.

Just FYI

I have had a lot of people asking me questions about the surgery (fetoscopic laser ablation) or about TTS (twin-twin transfusion syndrome, sometimes called TTTS, depending if they count twin-twin as one word or two!) so I have added a link here with a basic overview.

Here is a video, although there is very little information in it. There is more detail in the article the video goes with.

Also, Texas Children's Hospital has a lot of information on laser ablation treatment of TTTS. Amnio reduction is by far the more prevalent treatment, but the success seems much higher with laser ablation. Until we know how severely our babies' TTTS is, we will not make a decision on which treatment we opt for.

Still no diagnosis...

I'm not trying to leave you all hanging! I have had three ultrasounds and am scheduled for two more, but the results are still inconclusive. The twins show some signs of TTS, but not others. The specialist I am going to said he does not think the surgery is necessary, but my doctor wants me to keep the option open. There are a few reasons I agree with her and have issues with my specialist:

1. The guy has never even had the decency to come into the room and meet me in person. He has the techs bring him the ultrasound reports, he makes his notes and sends them back. I do not feel like he is taking my condition seriously, or respecting me as an actual person with actual feelings.

2. He has not personally pursued the surgery with any patient, opting instead for a different procedure in which you must come in periodically and have amniotic fluid syphoned from one sac to the other. To me, this is like bailing water from a sinking ship instead of just plugging the hole, which the surgery would do. He seems a bit set in the old ways, where I would prefer someone who is exploring more cutting edge, safer and more successful options instead of "That's just the way we've always done it."

3. He diagnosed me after an inconclusive ultrasound as "No TTS suspected" then changed his mind once my doctor pointed out some of the symptoms I/the babies were showing. This does not sound like he gives a great deal of thought to his diagnoses, so I do not feel confident in his opinion.

So, overall, we will wait for the reports from the next two ultrasounds and see how things are going. I will probably go for a consultation on the surgery, so if the twins start to show more definite signs I'll be good to go before the deadline. The surgery CANNOT be performed after 26 weeks, so if the TTS occurs (with any severity) after that point you have to deal with it in ways that are less satisfactory to me. (Syphoning fluid or inducing premature labor are two of the options.)

Please pray for grace to deal with this time of uncertainty. It is almost harder to deal with an inconclusive diagnosis than a bad one. I just want to KNOW what we are facing, but God has His reasons for making us wait. Please also continue to pray for our little boys that they will grow and develop normally. I will let you know as soon as I know something!

If you want pictures...

I know my posts have been boring lately, so if you want to see cute pics of my kids you can always head over to Grandma's blog!! Heck, that's how I keep up with what they're doing lately... I have hundreds of pictures in my computer, but no energy to upload them.

A tale of two babies

Chad and I went for an 18-week ultrasound today. Normally this is a 20-week scan, but my doctor wanted me to go earlier so we can make sure we catch the twin-twin transfusion right away should they have it. I will be going back every couple weeks so they can monitor the babies' sizes, growth rates, and levels of amniotic fluid. We will know within a month if I need the surgery, and then I will have a couple weeks from that point to get it. Needless to say, the next six weeks are going to be nail-biters for us!!!! I am trying not to think about all the details of the surgery, like how we will come up with the $30,000+ if our insurance doesn't cover it, planning an out-of-state trip to a specialist that will perform the surgery (my doctor recommends a practice in Florida), finding a hotel, arranging child care... not to mention the idea of them cutting me open and zapping my tiny babies with a laser... Let's just pray they share the placenta without any issues!!!!! One is already a bit bigger, but they assured me that no two babies are identical in size, so it might not mean anything. As long as they both grow at approximately the same rate we're okay.

I know you've just scanned over that last paragraph to get to the juicy details. Yes, we found out the genders, and... It's a BOY... and a BOY!!!!! Yeppers - two of them!!! Yikes! They are still suspecting they are identical, but I guess you can't know absolutely for sure until they're born and you get a blood test. So, this will be another adventure for us!

Thankful

I know I tended to be negative in my last couple posts, so I thought I would post all the positive things I am thankful for!!

*After two more medication changes, my nausea and vomiting has been cut down to about 1/4 what it was. I was even able to take a shower on my own. Up till now, I've had to sit in a shower chair while Chad washed my hair and helped me wash. This is not as romantic as it sounds, since most of the time I was heaving my guts out in the process. Also, I have been able to walk a bit around the house, which is better than staring at the ceiling while laying on the couch. I am keeping more foods down, which is nice because my gourmet daily menu of crackers, toast, baked potatoes and ramen noodles was getting boring. It is a huge emotional boost to see improvement and know that this misery will end!!!

*Because I am not throwing up as much, I am not dehydrating as often which has had a HUGE impact on my heart. The more water I can keep down, the better my heart behaves itself, which in turn greatly improves my overall health. I still have bad days, but there are some good days sprinkled in now.

*Our church has been amazing. Not only have they extended the meals all the way through JANUARY, but I am also encouraged from the phone calls, visits and cards. They always seem to come when I am really getting depressed!!!! Also, people have been donating money to a "meal fund," so if we need to order carry-out or grab pizza we can. With Chad working long hours, then coming home to spend the evening caring for the girls, running errands, doing housework, paying bills, and all the other things I used to do during the day... you just can't imagine the relief it is to have a hot meal made or be able to have the money to grab a pizza. We have never been in such a loving, compassionate environment, and I am so proud of the wonderful families of our church. It's one thing to help out for a little bit, but as the months drag on we still have so many people praying for us, checking up on us and helping out with child care, meals, etc... What a blessing!!!!

*I can't forget my daily "caregivers." Even as I feel a bit better, the simplest of tasks exhausts me. I am so thankful to my family that continues to come over every morning to help with the girls and keep the house from being declared a disaster zone. I have my regulars of Aunt Sarah, Uncle Johnny and Grandma H, but others have also stepped in when they get a chance or to fill in when needed. Whether they stay and help out at the house or grab the girls and go, either way I know I would not be making the recovery I am without this tremendous amount of help. It means the world to us.

*I have clothes!!!!!! As my size has, er, rapidly expanded, I fast grew out of all but my baggiest sweatpants. I adopted some of my hubby's wardrobe, but was worried about heading to my doctor's appointment in his M&M PJ pants and Bass Pro Shop t-shirts. Being bedridden makes it a bit difficult to shop for maternity clothes, sooooo... my cousin Elizabeth came to the rescue. Her initial box held a couple pairs of jeans (that fit perfectly) and some tops, then the second, larger installment held a good assortment of tops, dress clothes, even a couple jackets. (Oh, and being the bargain hunter she is, Elizabeth couldn't resist throwing in a pair of Merrell shoes for Elianna that she found for a great price.) Yay! I have clothes!!!!!

*We have a furnace!!! We went a week and a half without heat when our furnace bit the dust and our original repairman gave us the run-around (then ended up never showing up). NOT FUN to go from being miserable to being COLD and miserable. We survived, though, and a second guy, a Christian recommended from a friend at church, came out that was just great. He was very sympathetic to our plight and had everything installed and running within days. It's so nice to hear the furnace click on, light, and actually blow out warm air!!! The simple things we take for granted.

Doctor Visit

I don't know if anyone is still checking, since my updates have become so few and far between... A lot is happening, I just never feel well enough to try blogging!!

My last visit was both good and bad. Good because I gained two more pounds and there were still two little heartbeats!!! I am still measuring bigger than average (even for twins!) but only by a couple centimeters. I can't help but get nervous, since I currently weigh 15 pounds less than I did when I delivered Selah. And I am only 16 weeks... *sigh*

The bad news is my heart condition is back. With Selah I developed a heart condition at about 24 weeks, so it was discouraging that it is back already. So, back to the cardiologist I go! Grrr..... My doctor said she suspects that there is an electrical impulse issue, with something misfiring and causing my heart to randomly speed up, pound hard, barely beat or skip beats. Also, my heart rate stays elevated even when I am just laying there (which is all I ever do) and my blood pressure is very low. All of this causes the nausea, disorientation, and fainting I had to deal with the last couple months of Selah's pregnancy. It has not gotten that bad yet, but I have to admit I really struggled with being depressed at the prospect of dealing with this again.

We also had to discuss my surgery options should the twins show signs of twin-twin transfusion. This was also a bit overwhelming, since this surgery is not performed anywhere in Michigan, and she can't guarantee that my insurance will cover it. (It might be new enough to be considered "experimental," which they won't touch.) Of course, I am just praying that I won't need this surgery, but my doctor wants to prepare for it just in case. (Because if I do need it, there is a small window in which it can be safely performed.)

So, overall I left with mixed feelings. I am happy that things are okay so far, but it's hard not to worry about the complications that seem to pile up!!!