Let's start with the news you've been waiting for and then we'll go through all the details of the day.
The surgery went great! They cauterized 8 veins that were running between the twins on the placenta and took 3 coke cans worth of amniotic fluid out!! I already feel so much better. I have been hooked up to a contraction monitor since I got out of the OR and everything is showing great progress. The twins showed absolutely no stress during the entire surgery.
Thank you for all your prayers, love, strength, hope, words of wisdom, mantras & lit candles. You all played your own part in the success of this day and my vocabulary is no where near vast enough to do my gratitude to you all justice. I love each and every one of you. Thank you for taking time out of your day to do a little something for our family. Our lives are rich with love, strongly bound seams that glitter with your kindness and wisdom. Thank you from the bottom of my heart.
Now for the details of the day.
At 9:30pm last night, an obstetrician and NICU doctor came in to talk me through making decisions about the twins should the worst happen. This was by far the hardest conversation to have since I arrived here but it was necessary and they needed me to decide what would happen if the twins were showing too much distress to survive in their current state. Here were the options:
1) Have an emergency c-section and let the NICU do everything they could to try to get them to survive. This would require a steroid shot ASAP that would help with lung development & assist in keeping brain damage and bleeding from happening. That shot is fully effective at 48 hours and since we were only 12 hours from the procedure, they let me know that it would not be fully effective and would not help the twins as much as if there was more time to decide.
2) Have an emergency c-section and do "comfort care" which consists of them wiping the babies off, laying them on my chest and letting me hold them until the passed away which would be anywhere from a couple minutes to an hour after they were born.
So yeah... this is definitely NOT the kind of conversation you wanting to be in after having only learned about your severe condition a little more than 36 hours before and without any sleep since then. I understand why they timed it the way they did but I was a wreck talking with them. There are hard decisions to make with every major procedure, every major change in your life. Get all the details and information you can and make those decisions from an informed place.
After talking with them for about a half hour about ALL the "what ifs", I was urged by the team to not get the shot, not try to save the twins' lives should the worst happen during the surgery. The twins were already really sick and having a hard time. That greatly decreased the already slim chances for babies of such a young age. I agreed and decided that should the worst happen, I would have them wipe the babies off and let me hold them for the remainder of their too short lives. Many people have had to make this decision in their lives. I don't wish this conversation on anyone. I will always pray for the parents that have to make these decisions.
Last night I fell asleep around 10pm and was able to sleep until 6am. Best night's sleep I have had in a really long time. They woke me up once at 3am to hook up a fluids bag to my IV since I was not allowed to eat after midnight. This helped keep me hydrated without causing any interference to the procedure scheduled for the next day. I woke up, took a shower, brushed my teeth and did my hair in a high bun so that it would be comfortable and completely out of the way. Even though I was STARVING and a little stressed this put me in the best mood and really prepped me for the day.
Around 8:30am one of the surgeons came in and walked us through the procedure, explaining all the details. He let us know that we were aiming for a 9:40ish start time for the procedure. I changed into my hospital gown and got comfortable to wait for a bit. Well, 9:40am start time turned into a 10:40 start time, which turned into a real start time of 1:00pm. While we waited, Mom and I watched the entirety of Dirty Dancing. Such a great movie and it always reminds me of my brother, Garrett, who has probably seen that movie as many times as I have seen Rocky Horror Picture Show, and THAT is really saying something!
At 1:00pm the doctors came in and walked me down to the OR room. Once inside, they had me lay down on the bed and get as comfortable as I could get. A tricky endeavor for a VERY pregnant woman to lie on her back and find something "comfortable" but after a couple minutes we figured it out. The anesthesiologist got all my IVs hooked up while the other nurses in the room strapped my legs down to the table so that I wouldn't slide off. For the ease of the doctors, the bed had to be tilted to the left at a fairly steep pitch. Once they had that all set, they put up the barrier between me and my stomach and finished prepping for the start of the surgery.
While they were doing this, I noticed that they had a couple TVs, one on each side of me that I guessed would be where the doctors would be able to see the view from the optical camera they were going to be inserting into my womb. I asked the Anesthesiologist if I could watch what was on the TV during the procedure (which required a slight change in the barrier placement). He was surprised at the question to say the least.
"You wanna watch?! Really?!"
"Of course I do! I may not get the chance to see something like this again in my lifetime and this doctor is about to use his incredible skills to save my twins. I would love to be able to take in as much of this experience as I can."
He obliged and moved the barrier over slightly so that I could view the monitor that the doctor would be looking it. Over the next 10 minutes, the doctor used an ultrasound to check for the best entry site while the radiologist got herself all set up beside him. They gave me a very small amount of drugs to relax me as well. Everyone in the room for sunglasses to wear to protect our eyes from the bright light of the laser we'd see in the monitors. They numbed the surface of the site where they would insert the port for the optical camera/laser and then inserted the port. I will admit that although this was the most painful part of the entire procedure, the pain wasn't much more than a sharp pinch that lasted only a couple seconds.
During the procedure, the radiologist was right beside the surgeon assisting the placement of the optical camera and checking on the hearts of the twins to ensure there was no sign of distress. The anesthesiologist was right beside my head checking in on my pain level and also watching the monitor. Once the optical camera was inserted into the port, the view got really interesting. The monitor was black except for a round projection in the middle of the screen that showed the view from the camera. The amniotic fluid was clear with tiny specks floating all around. These specks are bits of skin that have flaked off of the fetus as it grows. When amniotic fluid is collected for research like I had done, it is these flakes that give the researchers all the DNA & genetic information they need to learn all the can about the twins and their gestational adventure.
The placenta was this hilly mass on the right side of the view. It reminded me of looking across a desert of white sand. Every once and a while you could see a vein crossing the surface, a dark purple snake making its way across this seemly vast plane. Each time the doctor identified a vein that was running between the twins, he used the laser on it to cauterize it, stopping the blood flow through that vein. Although the umbilical cord for each twin needs to have veins and arteries branching out into the placenta, none of these veins should be running between the twins. This is what causes the problems of TTTS. During the procedure the surgeon found 8 of these veins and hit each of them with the laser a couple times to ensure that they wouldn't be a problem in the future. Each time he used the laser it filled the monitor with a very bright purple flash. Once the flash went away, you could easily see where the laser had caused the surface of the placenta to rise up and leave a white barrier in the vein. There was absolutely no blood from this laser procedure, it just left these white bumps everywhere the surgeon used it. I could feel the laser moving around inside me but I could not feel anything when the doctor used the laser.
Once the surgeon was done with the veins, they moved on to removing some of the excess fluid from my uterus and let me tell you, the took off a lot! The doctor had told me last night that sometimes they remove as much as an entire liter! With me they took off 36 ounces of fluid!! Can you believe it! 36 ounces! No wonder I had been in so much pain from the pressure! No wonder I looked 12 months pregnant, it was all fluid.
The doctor said that the procedure went VERY well and the radiologist said that the twins showed absolutely no signs of distress during the procedure.
When they were done removing fluid, they removed the port and gave me a single stitch to put me back together. the radiologist continued to check on the twins for about 15 minutes, they showed no signs of distress so when she was done I was cleaned up, wiped down and then moved back to my bed which they had brought down from the room. I was then rolled back down to my room where my Mom was waiting for me with a big smile.
They hooked me up to a machine that checked for contractions, gave me a pill to control contractions and let me have 1000 mL of water. I was cramping for about 10 minutes but as soon as I was able to finish the water I felt so much better. Mom and I watched Alice Through The Looking Glass and then I laid down for a short nap while Mom went for a walk outside. It was gorgeous out today!
The nurse came in about 15 minutes later and said that she wanted to take me off the IV since I was drinking so much water and she wanted to get me up and to the bathroom to see how my body was processing all the water I drank. Getting up was a little tricky but there was no major pain. The nurse showed me how to disconnect myself from the contractions monitor so that next time I could do it myself. Everything happened as it should so she said I could change out of my gown and get more comfortable. It was really nice to put underwear on again :)
She stripped the bed of the surgery bedding and I got myself all situated with my laptop, Rodgers & Hart on Spotify, a fresh 1000mL of water and here I am, writing up my update for you all.
The plan for tomorrow is to do another 4 hour round of ultrasounds & echocardiograms to see if Twin B is producing fluid and has a detectable bladder. If all checks out, Mom has booked our taxi and plane tickets to fly back home tomorrow evening. I am really looking forward to being home again. I am ecstatic that everything went well but emotionally I am drained and ready to be around all the comforts of home again.
Thanks again for all our love and support! You were a wonderful silver lining in a really tough 3 days.
With love,
Whitney