Surgery Weekend

The past few days have been so full of complications, worries, and decisions; I don't know where to begin. But, they have been very significant in our lives and I need to record them.

We had last been seen in Seattle on Tuesday morning, where the specialist, Dr. Walker, determined that the babies weren't at risk enough at that point to risk immediate surgery. TTTS can be very unpredictable and there was no way to know if it would rapidly get worse and need surgery to save the babies, or if it would remain at a safe enough level to carry the babies until a reasonable delivery time without surgery. We went home to be monitored frequently for any changes that would dictate the next step.

I went to my appointment alone on Thursday while Rob was at school. I had an ultrasound tech that I hadn't had before, and she was starting to get confused by what she was finding on Baby A. She asked a doctor to come in and look with her, and they both puzzled over it, making comments like "that just doesn't make sense" and "I've never seen that happen before." They finally explained to me that the umbilical blood flow to Baby A appeared to be weak, which didn't make sense because he was the baby receiving extra blood. And when they looked at the image of his umbilical cord, it looked straight, as if it was pulled taut. The doctor's only explanation for this was that since the baby had so much extra fluid to move around in, maybe he got his umbilical cord twisted in a way that created a kink, limiting blood flow. I asked what we would be able to do about that if it turned out to be the case, and he said there wouldn't be much we could do.

The ultrasound tech couldn't find the bladder on Baby B, and as the doctor looked, he thought maybe he spotted a tiny one, but decided that it was small enough to classify me as Stage 2. Stage 3 of TTTS is where the dopplers pick up abnormalities in the babies' blood flows. Even though the umbilical abnormality they found wasn't a typical abnormality they would find in TTTS, they decided it could classify me as Stage 3. They called Doctor Walker in Seattle and scheduled me for surgery the next day.

From the time we first found out about the TTTS, one of my biggest fears has been decisions. I have never been good at making decisions, even small ones- I question myself, I stress over each option endlessly, I worry that I'm making a mistake. I've known that there are different possible treatments and that they all have risks, and I have just always hoped my situation would be black and white, and that my doctors would tell us exactly what needed to be done. Up until this point, it had been that way. Even though there has been a lot of gray uncertainty with my case, with lots of counsel and discussion with doctors, everything we have done has been what these experts have told us would give our babies the best chance.

At this appointment was when they started turning some decisions over to me. Knowing that I was planning to have surgery the next day, we discussed one of the main risks of the surgery: that it could put me into preterm labor. My doctor discussed with me that at this time (24 weeks), they would have about a 50% chance of surviving outside the womb, and of survivors, only 10% would not have lifelong problems. She told me that between 24 and 26 weeks, it is up to the parents to decide whether we would want the babies resuscitated or not, knowing the risks and suffering they could go through (and the likelihood of it being in vain). If I decided I would want them to try resuscitating them, they would give me a steroid shot for lung development in case of delivery, but if I wouldn't, the shot would be useful to get later instead. The decision was clear for me. I would do anything to give them the best chance at surviving. But, it was still a difficult thing to think about.

Then came the discussion about Baby A's possible umbilical cord problem. Though my doctor had already made the plans for me to go to Seattle, she brought up this other possibility that bugged her. If there was in fact some kind of kink in Baby A's cord, she worried that he may not even make it until surgery the next day. She gave me the option to just go and hope that things looked fine in the morning, or to come back and look one more time that afternoon. But, if I came back and Baby A was struggling, the only way to save him would be to deliver both babies immediately, at 24 weeks gestation.

This was, of course, the most horrible scenario I could think of. Having to decide whether to deliver my babies at 24 weeks -- risk Baby B's life for the chance to attempt to save Baby A, and very possibly losing both. Or whether to do nothing and give Baby B a better chance, knowing we would lose Baby A.  There would be no good option, and neither could be a choice I could live with.

We finally determined that I would go to Seattle and go right to the hospital to check on the babies to see if the umbilical cord was an urgent issue. Our minds were clouded with all these scary thoughts as we spent the day making plans for travel, plans for surgery, and plans for Collin to stay with friends for the weekend. We arrived at the hospital that night, and both heartbeats sounded good. This was relieving enough to let us sleep a little bit that night.

Early Friday morning, we headed to Dr. Walker's office for them to take a look at the ultrasound.  In a way, it was pretty disappointing. They found a good sized bladder on Baby B, meaning we weren't actually in Stage 2 at all (it was probably just small at the Portland appointment because he had peed). And Dr. Walker wasn't extremely concerned that the weak blood flow on Baby A was anything urgent yet, and it wasn't a typical abnormality that would classify us as Stage 3 either. The thing that concerned him was that Baby A's heart showed strain. It was still pumping properly, but it was tighter than it should be, showing that it was working extra hard.  He said some doctors would classify our case as a Stage 1 with an asterisk, saying Baby A's heart had abnormal blood flow, and some might categorize the abnormality as maybe a Stage 3. Our case was just very unique and hard to classify. Typically, to get the laser surgery, you'd have to be at least Stage 2, although the stages don't always have to go in order.

So, Dr. Walker told us that we had the choice. We could go through with the surgery that day as planned, or we could wait and come back on Monday to see what was happening. If we waited 3 days, he thought we would probably need the surgery at that time anyway. The difference would be if the surgery put us into preterm labor and we delivered the babies, they would have had 3 more days in the womb. And every day counts. However, that would also give them 3 more days to be affected by the TTTS, so they could potentially be less healthy by then.

When we arrived that day, we understood that urgent treatment was the only option to save our babies. But then, this gave us the tiniest bit of doubt that it could wait just a little bit longer. There was also the hope we always had that it could miraculously turn itself around and improve without the risky intervention. Our doctor said either choice would be reasonable, and there was no right or wrong answer. Of course, we were already in Seattle without Collin and coming back on Monday would mean another trip, more missed school for Rob, and figuring out what to do with Collin once again, but we had not let convenience dictate any of our actions before and we didn't want it to now.

It was extremely hard to be put in the position of making this decision.  There was no way to predict what would happen with our babies, so there was no way to know what would put them at least risk. We had a few minutes to be alone and discuss it. We prayed hard. We considered risks and possible outcomes. I wanted so badly to just have an answer and be sure about it.  Finally, Rob felt good about the decision to proceed with the surgery. And I felt good about trusting his feeling. 

We went to the pre-op room and started to get ready. About an hour and a half before the surgery was scheduled, as I was lying down with nurses taking my vitals, I started noticing contractions. They were pretty frequent so I timed them. They lasted about 40 seconds each, and soon they were happening every 2 minutes. We were so scared that I was going into labor, that we wouldn't be able to have the surgery now, that it was too late. We think it was either the huge amount of fluid in my belly that had come on so quickly and added too much pressure, or the fact that I had been dehydrated for a few days, again because of the huge amount of fluid pushing against my stomach, making it so I couldn't eat or drink much at all. The fasting before surgery couldn't have helped with the dehydration either. 

But, either way, this was how we knew we made the right decision. My body was not going to be able to handle this extra fluid much longer. If we had decided to go home, we would have been on the road in the middle of nowhere when this happened. Dr. Walker came in and I was given medication to help stop the contractions. Though frequent, the contractions were mild enough, and he felt comfortable going through with the surgery with the plan to remove fluid as well, to reduce pressure on my cervix. 

As I was wheeled into the operating room, I got really nervous seeing all the people and equipment in there. They had told me I would have spinal anesthetic, with the option to be put to sleep if I chose. As soon as I got in there, I started shaking hard, probably a combination of the cold and the fear. I immediately said that I wanted to be unconscious. I ended up being fine with just a small dose of something to help me relax though. They also gave me the option to be able to see the video of what was going on, and I said definitely not. 

The spinal block was the most amazing thing for me at that moment. As soon as it took effect, it was like every pain and stress my body had been going through for weeks immediately melted away. I literally had not been able to feel even remotely comfortable for so long, and it was so wonderful to suddenly be completely pain-free. (I'm sure the additional drugs contributed to the euphoria a little bit too). 

Rob was able to be in there with me, and he could see what was going on in the video. They made a small incision in me and sent in the tiny camera. Dr. Walker used this to examine the vessels on the placenta and determine which ones were connected between the two babies. When he found a connection, he sent in the laser energy and cauterized them. He found 11 total.  It didn't take long, maybe 30 minutes. Afterwards, he used the camera to get a little video of the babies! Rob got to see their faces through a real video rather than an ultrasound, and at that point I really wished I was able to see. But, we will get a DVD of the procedure and I can't wait!  Dr. Walker then drained over 1.5 liters of excess fluid from Baby A's sac, and they checked to make sure both babies' heartbeats were okay. 

We are so amazed at the technology that allowed this to be possible. It blows our minds that our doctor could identify exactly which vessels he was looking for. It is amazing that our two babies were able to have surgery on their placenta while still in the womb. Also, let me just add that we loved Dr. Walker. He was so knowledgeable, so thorough in looking at our case, so kind and caring, and really took the time to help us understand and answer all our questions. His British accent probably only added to his likability as well. After being sent through so many different nurses, we just felt better as soon as Dr. Walker came in, because we knew he would make sure everything was right.

Recovery wasn't bad at all. I had to wait a while for the anesthesia to wear off, but I was still basking in the feeling of painlessness. Rob and I felt so happy and relieved. I didn't go into labor during the procedure, there weren't any other scary complications, and the babies' hearts were still beating after. Our main fears did not happen! Also, even as I started to regain feeling in my body, I felt so much better with the fluid drained. I could take in a full breath, my back wasn't in extreme constant pain, and my belly was a little smaller. Also, after being dehydrated the previous days, I had IV fluids in me and I felt so great. The only concern I had was that I still felt contractions. They were mild, and I was told they were to be expected after this surgery, but it's never comforting to feel contractions when preterm labor is a real fear. I was given medication to help stop them.

We checked the babies' heartbeats throughout the evening, and even in a hospital bed, I was able to sleep more comfortably than I had in a long time because of the huge relief of fluid pressure in my belly. In the morning, Dr. Walker came to do an ultrasound. Both heartbeats were fine, and Baby B already seemed to have a little more fluid! Baby A's heart looked a little less strained as well. We weren't counting on any big changes; all the doctor was really checking for was that both hearts were beating. The idea is that hopefully in the next few weeks, things will start to even out and the effects of the TTTS will go away. They checked my cervix. I was really concerned that all the contractions I'd been having had shortened it, but it hadn't changed. We were discharged and headed home, to be monitored by my doctors here now. 

I am taking it easy, lying down as much as I can, keeping pressure off my cervix. I was also given instructions to drink about a gallon of water per day, eat as much as I can, and aim for 175 grams of protein per day.

I wish I could just say that the surgery fixed everything and the babies are healed, but it's not an immediate thing. We still have to watch. Both babies have gone through some abnormal things while in the womb- unusual amounts of blood flow, surgery on their placenta, etc.- so we still worry about their health. There is also still the likely possibility of premature delivery. I still feel contractions and my body may continue to be affected by the trauma it has been through. Early delivery is always a concern with twins, but especially with all the complications I've had. Our doctors are at least hoping for 28 weeks, which sounded so crazy and horrible before, but now that we have been faced with the possibility of 24 weeks, 28 sounds a little better. We just want to make it as long as possible! But, we feel confident now that getting this surgery has given them the best possible chance under all the circumstances.

We feel so blessed to live in this time and place where something like this could be possible. We also know that through all the decisions and stress, our prayers were answered and we were guided in the things we should do. We received guidance through the thoughts that came to us at the right times- thoughts from the temple or blessings we have received- and we know these were answers to our prayers. We also appreciate all the thoughts and prayers from friends and family and know that they have been answered as well. Every text or facebook message I got throughout the day comforted me and helped me feel a little peace through the whirlwind of stress. It was amazing how such a difficult time could have moments of such peace. Though this has been one of the most trying experiences of our lives, it is also something that has strengthened our testimonies of our Heavenly Father and brought us closer to Him.