Monday, May 31, 2010

Off topic

I have been thinking about all of the free stuff given to celebrities, just so companies can get the "free" marketing. Its a good technique...especially considering how star struck our society is. You see Angelina Jolie carrying a cute diaper bag and you have to have it...$200 price tag be darned.

But isn't it a little depressing? People that make millions of dollars getting freebies? Just doesn't seem fair,

I understand celebrities and their photos reach the most people in the quickest manner, but companies could really branch out.

What about a sweet, special education mommy to two twin boys? Who...may only have a few blogger followers but has many friends IRL as well as Facebook.

It may not be millions of people...but it would be authentic word of mouth marketing.

I challenge any companies that feel like giving away something for marketing value to give it to me. I'll take pictures, videos, write a formal review...whatever.

Just help a penny pinching mom out, lol!

ETA: If you type twinsane asylum into Google, I am one of the first sites that comes up...just sayin ;)

Thursday, May 27, 2010

Pregnancy and Cincinnati part 8

Echocardiogram time.

It was basically an ultrasound where they monitored blood flow and heart dopplers. I didn't understand most of what I soucl see them measuring. Unlike when you go in to your usual doctor, they didn't explain as they went. The process took almost an hour, so I completely understand not explaining...that would have taken an eternity.

The gist of the echo told us that Baby A's heart was enlarged-it took up almost half of the space in his chest cavity (WAY too big). And his little heart was working overtime. What we eventually came to understand is while Baby B was shrink wrapped and not getting all of his nutrients, TTTS was almost harder on baby A. The strain on his hear was worrisome, and if the surgery was successful, his heart would have to be monitored for several weeks afterward.

On to our meeting with Dr. Crumbleholme. We met in a conference room with several doctors and our case manager. The doctors introduced themselves and got the meeting started.

On a scale of 1-5, with 5 being the worst (which is death of one or both boys), our twins were at a 3. In Cincinnati, they also break level 3 into three parts of progression from A-C, with C being most severe. So in their terms, we were at 3-C. Obviously not good. With as quickly as it had progressed, if we did nothing, it would likely result in the loss of one or both boys.

Dr. C. had a fabulous bedside manner. He talked to me and not at me, gave me a folder full of studies and research (Yay! My geeky science brain was so excited), answered all of our questions, and even managed to make us smile and joke. He truly understood the level of strain I was under, and did everything in his power to make me feel as comfortable as possible.

We were candidates for surgery and the surgery would be the next day around noon (they had another surgery in the morning). The surgery was fetalscopic and a laser ablation (laser severing the blood vessels they shared). The doctors would go into the uterus with a camera and map out the placents to find the blood vessels shared by the boys-there could be anywhere from 2 up to hundreds. After they mapped it once, they would map it again to make sure they found eeverything. Next would come the laser and sever the connected vessels. This would allow each boy to have his own nutrients. Additionally, the Dr. wanted to do an amnio reduction on Baby A (remove some of the excess amniotic fluid) and a microseptostomy (tiny hole in the barrier membrane between amniotic sacs-would allow for fludi to evenly flow to both boys). We had the option to deny anything we weren't sure about-and could even make a final decision as of the next morning.

One other issue-Baby B had a marginal cord insertion. His umbilical cord was attached at the tail end of the placenta, and it meant that even under ideal circumstances, he would not get as many nutrients as his brother. The surgery would give them more information as to what percentage of nutrients he was getting.

I initially opted for all 3 things, though I was incredibly wary of the microspetostomy. The main risk of that was the potential for the rupture of the membrane which would put the boys into one sac.

The surgery had risks of its own. One or both boys might not accept the change, the amniotic sacs could rupture, etc. I couldn't do nothing...I had to take the risk.

Friday, May 21, 2010

Pregnancy part 7

As I said, Cincinnati Children's is huge. We had to go downstairs and into another wing to wait on the MRI appointment. Since it is a children's hospital, there are games, toys, small furniture, and of course, children everywhere. It was strange to be a waiting patient among them. I found myself wondering what each of them were there for, and praying for good news for everyone.

We've all seen MRI's on tv shows. I was ok with laying on the "bed", but was scared to death about having to go into the MRI headfirst. Luckily, since the MRI was on my uterus, I got to go in feet first. If I moved my head just right, I could see out of the MRI and felt much better. Of course I was more or less strapped onto the bed to position me correctly, which was not great. They also told me that it would take longer if I moved, so I vowed to remain as still as I possibly could.

What they don't tell on tv is that the MRI is LOUD. Obnoxiously so. Thankfully, the lovely technician put some headphones on my ears and piped music through them. I could still hear the MRI, but could turn some of my attention to the music and actually managed to doze off a few times. They talked to me through an intercom like system as they needed to, and it really wasn't that bad. I know I say that because I was not in that thing headfirst. If that had been the case I would have cried for the entire hour.

Right after I got out of the MRI, someone brought me a couple of juice boxes and some peanut butter crackers. It may not sound like much, but being pregnant and starving, it was as good as if it had been surf and turf!

On to lunch and then the echocardiogram, then the final consult with the doctors to discuss the findings.

And it was still Tuesday morning!

Thursday, May 20, 2010

TTTS and pregnancy part 6

It was Monday when I got into Cincinnati. My awesome mom had booked us a room at the Raddison on the Kentucky side (an absolutely fabulous hotel-they truly went above and beyond and we had paid a very discounted rate through the hospital.) Tuesday's itinerary was full and Randy was coming in Tuesday night to be there if there was surgery Wednesday.

Tuesday morning began early...I woke up about 5 so that I could eat something quickly, since I couldn't eat 3 hours before the MRI. I am a woman who needs her breakfast...and I was always hungry during my pregnancy, I wasn't sure if I would make it the requisite amount of time before I had a meltdown. The Raddison had a free shuttle that took us over to Cincinnati Children's Hospital (thank you again, Raddison. You are going to see me thank the hotel a lot...they were incredible.) The day started at The Fetal Care Center for our initial meeting and a sonogram.

The hospital was huge. You literally need a map or a tour guide to get through it. But it is truly an amazing place and they give the highest level of care. Though I do hope I never need to see it again-you understand.

Our initial meeting went well, they took all my information, answered questions, and guided me through what the day would be like. I was going to undergo all of the tests possible so the Dr. could confirm Twin to Twin transfusion as well as the severity. After the doctors had all of this information, they could determine if I was a candidate for surgery or what the options were. I remember at one point, I was aksed if the tests determined defects or disorders in addition to TTTS, if I would want to continue the pregnancy. I suspect I looked at the nurse as if she were crazy. I had come this far to save my babies...I wasn't going to give up on them for any reason.

I started with a lengthy sonogram, and my mom got to see "her boys" up close for the first time. (Gotta love the cooter cam). It wasn't difficult to see our Baby B was completely wrapped in his amniotic sac. His bladder wasn't working and he could not move due to a lack of fluid. Baby A, was in a swimming pool of fluid, but his little heart was working overtime to compensate for the excess nutrients. I cannot tell you what a relief it was to see each little heart beating, though. Every time I had a sonogram I looked for those tiny fluttering hearts, I was so terrified that we would lose one or both of them.


I know it has been far too long since i have updated! I will get back into it asap. The boys are 8 months old, and doing so well.

Elias is getting the first tooth, but Griffin is not far behind.

Griffin has a diaper rash that has required the prescription ointment which without insurance would be $100. ($50 with, but hoping they take my coupon. The sample seems to be working, I just hope it helps him!

No one is crawling yet (but they are only 6 months adjusted) Griffin sits on his own for the most part...he still bobs and weaves and tumbles over, but he is trying. Elias wants nothing to do with sitting up on his own. He will actually arch back so he is laying down again, lol. What a stinker!

I will update again soon and get back to the TTTS surgery!