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!!!

Clean Playroom!!! New Porch!!!

My mumsie-in-law came over and organized the playroom, which was getting really s-c-a-r-y. She also did the girls laundry and started sorting their clothes. (Poor Selah still has a drawer full of 18 month summer clothes which are too small and not weather appropriate. I have warmer/larger clothes, but that's another project we haven't gotten around to.) It is hard enough for Chad to keep up with the housework (along with everything else) in the few hours he has after work, so the heavy-duty organizing is falling by the wayside and the house is getting, shall we say, a bit frayed around the edges. This is especially noticeable when you are lying on the couch staring at it all day, but too weak and miserable to get up and do anything without starting a puke party. So, although it may not seem like a big deal to you, having one corner of the house back in order did much for my mental well-being!!!!

Then, my darling brother came over and helped Chad finish painting our porch, a project that has been sitting untouched for an embarrassingly long time. It was really ugly, since Chad had managed to strip most of the paint off before I got sick, but then the project stalled and it looked like a vacant ghetto porch. It was too much for Chad to handle on his own (can't imagine why, I mean, what else does he have to do?!??) so once again our wonderful family came to the rescue so we could take advantage of the lovely 70 degree weather. Aunt Connie took the girls and Jon came over and got to work painting while Chad tore out the rotted parts and rebuilt them. I even got to go outside (a rare treat) where I sat in a lounger and gave unnecessary directions so I could feel useful. They ignored me for the most part, but managed to pretend my advice was helpful. The porch looks brand new. I even took pictures.

So, see, it's not always all bad news coming out of here lately.

Happy Birthday Daddy!

Happy Birthday to you
Happy Birthday to you
Happy BIRthday dear Daddy
Happy Birthday to you!

Happy birthday to the most wonderful husband and daddy in the world. I can't imagine going through this without someone like you, and I can't thank you enough for all that you do and all that you are for me. We love you!!!

Updates

We have switched my meds again, and this time we found something that has slowed the vomiting. Hooray! It doesn't make me feel any better, but I know I will get better faster if I stop getting dehydrated from throwing up so much. So, I still feel lousy, but things are looking up. With Selah I was sick through my fifth month, so I figure I am over halfway there.

Went back to the doctor and there are still two little heartbeats in there. My uterus is the perfect size for being 16 weeks... but of course I'm only 12 weeks! (She assured me this is the normal development rate with twins.) I have gained three pounds, which is great for how sick I've been. It's mostly fluid from the babies, but hey, better up than down!

Going over the report from the specialist with my doctor, she told me the twins are sharing a placenta. So, unfortunately, though they are in separate sacks, there is still the danger of twin-to-twin tranfusion. I will be going for an ultrasound on Nov 18th to see if their development seems to be equal. If not, I may need surgery if it appears that the transfusion is taking place. (You can tell because one twin will grow larger and one will stay very small.) So, please pray that they learn to share nicely at an early age!!!! I am thankful for the advances in modern medicine. There used to be nothing you could do for twin tranfusion other than let one live or else try to induce early and hope they both survived. With this surgery there is a chance that both can develop normally and be born healthy. Naturally, though, I am hoping this doesn't end up being necessary!!!!

I have been staying at my in-laws since I have been doing so badly, and the girls are loving all this "grandma time." She has read stacks of books, done art projects, taken them on outings, played outside, and all that other fun grandma stuff! And through it all she finds time to yell at me for not drinking enough fluids, which makes Chad proud since that is usually his job. She even bought some Sprite at the doc's suggestion and left it out to get nice and flat for me. I am very blessed with such a wonderful supportive family. Thanks for your help!!!!!!