Twin to twin Transfusion syndrome

Well, recent events have really changed our lives, and I don't mean just the fact that we are having twins. A few scary ultrasounds and a trip to LA to see a fetal surgeon, have surgery, and back home for bedrest...It's a long story, but interesting...some cool baby pictures too...read more below...

We were referred back to the Maternal Fetal Medicine (MFM) doctors to have the babies checked on April 30th. My doctor has been noticing an inbalance in the amniotic fluid levels for both babies. One had too much and the other had too little. I wasn't too worried, and invited my mom to come with me to see the ultrasound. Tom went to work as usual and we went...we were in the ultrasound for over an hour and the tech was very quiet. She said she had to go do some report and left the room. After about 15 minutes one of the doctors came in to repeat the scan. She told me it wasn't fair to me to just let me sit there wondering what was going on and she told me what they were worried about. Baby A's sack was like saran wrap around her, with almost no fluid. They also couldn't detect her bladder. Baby B was doing laps in her indoor swimming pool and her bladder was dialated. Both babies were under stress because A was getting too little blood and oxygen and B was getting too much. The fluid levels were off because urine output changes when a body is under stress and now I have found out amiotic fluid is made up of baby urine. They told me they had Twin to twin transfusion syndrome (TTTS) http://www.eastsidemfm.com/ and we needed to act fast. There is a laser surgery that can be done to sever communicating blood vessels on the placenta and we were fortunate enough to live close to one of only 5 doctor's who could perform it. I called Tom and told him what was going on and my mom and I sat there in shock.

We were referred to Eastside MFM in Kirkland at Evergreen hospital for an appt. on Friday morning. Dr. Walker, who is the senior surgeon there, is half way across the world right now in Nepal climbing a mountain, so we saw Dr. Paek, his partner who has been training with him for two years. Complications don't seem to be a real weak point for us right now, so going with the flow was our only option! We were in the ultrasound for about two hours, getting blood drawn, filling out paperwork, etc. Dr. Paek explained that the babies were struggling and my surgery was going to be very tricky. The placenta is in the front of my uterus...when they go in with the scope through my abdomen, the scope and camera will have to be curved, which is alot tricker. She told us she has never done one like this on her own and would suggest we go to LA to see Dr. Chmait (pronounced Schmight) for the surgery. The other doctors had told us of this possibility so we had already been talking with family to make it possible if needed. We agreed to do this and were on a plane by Sunday!

Our consultation appt. was Monday morning with Dr. Chmait. We met his nurse, Terri first and she welcomed us just like family. She told us all about their mission and love for their patients. They have their office at Hollywood Presbyterian Medical Center, which is an older hospital with no frills. The office was down a long hallway of just blank doors...the only way you can tell it's a doctor's office is by the small sign next to the door. In the small front room they have a cork board with pictures from patients and their surviving babies. Terri knew the story behind each one and told us about visiting them while on vacation. They have patients from all around the world come to them...we can see why :) Dr. Chmait doesn't hang any diplomas on his wall and Terri said he gets mad at her every time she sends a newspaper clipping or video clip of his accoplishments to his mom and wife. Dr. Chmait was very friendly and genuine. We could tell he has similar family values and truly cares about the babies he saves. He confirmed by ultrasound that the babies were in need of surgery ASAP and scheduled us for the next day, Tues. May 6th.

After all the preop tests and paperwork were finally done, we thought we would try and squeeze something fun in while we were in LA, so ventured out to Universal Studios. We started out on the Universal City walk by going to luch at the Hard Rock Cafe. It was pretty cool....but our nerves were starting to get the best of us. After lunch we headed toward the theme park entrance only to find out they were closing in two hours and would charge us $65 each, ouch! We reluctantly decided not to go and headed back towards the shops. Tom talked me into seeing "Iron Man" in the most comfy theater we have been in....this was good, my stamina definitely lacks these days!

We arrived at the hospital at 8:00 the morning of March 6th, got checked in, checked out, iv put in, etc. We waited for about half an hour, filling out paperwork and waiting. Terri came in and helped wheel me to the OR and Tom kissed me goodbye and headed to the waiting room where he spent the next couple of hours listening to Spanish soap operas...he really enjoyed it, haha! :) After preppiing me some more and setting up everything in the OR, Dr. Chmait came in and started the surgery. They gave me a local anesthetic and wheeled a monitor by my head. The did yet another ultrasound to double check placenta placement and got a surprise.....they discovered a long snake like shaped blood clot (hematoma) running along the edge of the placenta right where he needed to go in. So, not only was it to be complicated because of the placenta being in the front, now he had to work around the hematoma. Ah, breathe deeply....I was getting relaxed, but still felt a little anxious listening to the doctors talking. First thing he did was make an incision about a half inch in the right side of my abdomen and inserted a long metal tube for the camera and laser to go down. OUCH, yes it hurt a little! Next came the camera....Dr. Chmait was not happy to find that the amniotic fluid was as dark as Coca Cola...I had some bleeding a few weeks ago that sent me to ER. Apparently the residual blood can discolor the fluid. He reassured me he could take care of this and everyone scrambled quickly to make it happen. They did an amniotic replacement that took what seemed like forever. They pumped out 3 liters of bad fluid and replaced some with sterile saline. What a strange sensation! I could feel my stomach getting smaller and the cool fluid going in. As soon as it was clear enough, he went in with the camera and ran right into a little hand :) Meet baby B :)

How cool is that? I got to see our babies up close and personal and Dr. Chmait gave us the photos! Since it took so long clearing the fluid, he had to work quickly, so meeting the babies was brief. He showed me her little face from the chin up...

Next, we meet baby A....hand and arm, then feet....how cute :)

The rest of the surgery Dr. Chmait would go in with the camera and find the offending vessel. The assisting doctor followed every step with the ultrasound to help guide the laser. When he found the vessel to be cut, he would remove the camera and go in with the laser. Just a couple of zaps with Terri running the foot pedal took care of it. He must have cut about 20 vessels and retraced his steps showing me from one side of the placenta to the other, connecting the dots. He was very happy to get every offending vessel and closed up. Ah, sigh of relief, now more waiting....Check out USC's website for more details and photos from Dr. Chmait's surgeries. http://www.ourbaby.org/diagnoses/twin-twin.htm I was wheeled into recovery where Terri gave me a shot to keep the contractions from coming. Now for the breakdown....a few tears of let down and panic, then I was all good again. The next 24 hours would be crucial. I spent the night in the hospital being monitored for contractions and pumped with antibiotics. The bed was horrible and my hip was aching. The nurse gave me a sleeping pill in hopes to help me sleep. It just made me dizzy resulting in barfing up my entire undigested dinner, yum....or not! I sort of slept here and there while listening to Tom snoring away in his roll away bed. Morning came and I had only had one contraction all night. Since I threw up the night before they ordered me a most delicious, blech, liquid diet consisting of chicken broth, jello, tea and coffee, which I don't drink. The nurse winked at me and suggested I steal some of Tom's breakfast, so I did. Cold oatmeal and mushy fruit never tasted so good! After a while they removed my IV and unhooked the monitors....ah, i could actually go to the bathroom without calling anyone for help :) Terri came and picked us up...my very own wheelchair chauffer :)

She took us to their office, which is attached to the hospital, for an ultrasound to check the babies. Dr. Chmait held his breath a little, put the wand on my stomach.....one heartbeat, and there's the 2nd! He smiled and said, good news! Terri congratulated us, and Dr. Chmait checked the blood flow and activity of each baby. Baby A was more active than she had been and baby B's heart was no longer struggling to beat under the pressure of all the extra blood. We had passed 2 big hurdles and he told us the babies were cured of TTTS. The next 4 weeks the babies will be measured and watched to make sure they are growing like they should. After the 4 weeks, this nightmare will be over :) As far as the hematoma goes, Dr. Chmait told me I GET to be on bedrest for possibly the rest of my pregnancy...oh, joy. Tom decided I might need a new couch to spend my days on. One thing to look forward to, I guess. Terri took us back to the hospital to be discharged and we got another wheelchair escort to the car.

We returned to our hotel room after many slow steps from the car to the elevator and I headed for the bed. Apparently I was tired or something because I fell asleep and was out cold for a couple of hours. I took a shower and we watched a movie....then back to sleep. The next morning we got up bright and early, had breakfast and headed for the airport. We got home Thurs. afternoon and entered real life. My parents had scrubbed my house and prepared my room with a TV tray and all the trimmings...now the fun begins!