2 days & a lifetime of thoughts

Tuesday morning, January 8th, 2013, I woke up feeling like any other day. Breakfast came, but before I could eat it, it was time to check the babies heart beats. There they were, clear as day, all three and sounding wonderful. I ate my breakfast, and was wheeled off for our routine every other day ultrasound. I laid on the table, and the technician started the scan. They always check for heart beats first, and there they were, all three. She started measuring and sampling the dopplers for the baby that was presenting on that morning. I was on my back, and while some days this feels fine for most of the scan, other days I can only handle it for a couple minutes before blood flow is compromised and I need to roll and continue to be scanned on my side before I pass out.

This was one of those days - I was feeling really light headed almost immediately, so I rolled over. The technician needed me on my right side to continue scanning the baby. Usually it's a quick recovery, but this one was so intense I continued to get nauseous, sweaty and dizzy even while on my side. It took several minutes to concentrate and focus on catching my breath and keeping consciousness. The resident OB watching the scan asked if I was ok, and said I was looking really pale. I said I'd be fine - it was just a bad episode. I probably just waited a little too long to roll over. After a few minutes had passed, it was like night and day - I was suddenly feeling better. I could feel the colour returning to my face, I could see and focus clearly. My breathing returned to normal. All was well.

The technician needed me to roll over onto my back for a few minutes more because the baby she was measuring had his head tucked way down deep in my pelvis and she needed to get a sample of the blood flow in his brain. I was feeling fine on my back again, so I stayed here while she finished up with the first baby and went to start measuring a second baby. Except, I could tell immediately that something was horribly wrong. She was scanning up and down his little abdomen, and I saw nothing. No movement, a very slack baby, I couldn't even tell where his heart was. There was just....nothing. I was too terrified to say anything, and she wasn't talking either. She asked the resident OB to call in Dr. L. He walked in to the room, and the technician pointed at the screen. The room was totally silent, nothing but the buzz of machines and equipment. "But all three of them were beating as soon as I started the scan" the technician said. In a shaky voice, I asked "but this one isn't beating now?". Dr.L said he was so terribly sorry, that he didn't know what to say. That it was so incredibly rare for something like this to happen, that he's never seen it himself. Somehow, within those 15 or so minutes, we went from three heart beats, to two. No warning, so signs of something being wrong. I was in complete shock. Dr.L tried to explain that he thought this must be an acute cord accident, considering how quickly we lost one heart beat. That perhaps the cord had gotten twisted or kinked. He then went on to try and explain that it could even possibly be a result of the TTTS, and that our recipient twin could have had passed away due to a number of complications from the syndrome, and that perhaps in Toronto they weren't able to see all the vessels that needed to be ablated. Or that some had re-connected and the TTTS continued to worsen.

I was incredibly confused. I didn't cry right away, but I was sobbing as my day nurse came in to give me a hug. Another sweet nurse offered to call Noel and ask him to come to the hospital. She had to break the news to him over the phone because I didn't want him to worry that something unfathomably worse had happened. While all of this was going on, the technician kindly asked if it was ok for her to continue to scan the other babies to make sure that neither of the survivors were in immediate danger. If we did in fact lose our recipient, then our donor twin could be in serious trouble depending on several factors. If the ablation surgery was unsuccessful, our donor twin could bleed out into our recipient twin who was no longer pumping blood back. He would quickly become anemic and the chance for heart failure, or a stroke and severe disability or death was very high. The survivors seemed to have normal blood flow and other function. I was in and out of tears, asking questions as I was able. Noel arrived and they left the room so that we could have a moment together.

Something in my gut was telling me that they were wrong. That they weren't on the right track and were labelling the wrong baby as passing. I couldn't quite put it into words when they got back in the room, so they continued to try and figure out what may have happened to what they thought was our recipient twin. I wanted to hear their thoughts anyway. The old theories were resurfacing - the possibility that this was an identical triplet pregnancy, one giant placenta that wrapped around part of my front and all of my back and up the other side and so in Toronto they didn't ablate all of the connections because they weren't aware that it was one placenta. Or that maybe they operated on the wrong placenta in Toronto. They kept saying that the twins umbilical cords led to the posterior placenta, and the singleton to the anterior placenta. The technician couldn't clearly pinpoint on this particular day where the cord insertions were, so they couldn't say for sure. Well, they operated on the anterior placenta in Toronto, and even I could tell on the screen that there were certainly two babies attached to that anterior placenta. I kept thinking to myself, how on earth could they have possibly missed something that HUGE in Toronto. It seemed impossible. How could the doctors here be doubting the procedure. They were in there with a camera, practically their naked eye for goodness sakes. Even before the procedure they had scanned me a handful of times to be sure that they had things right, that they weren't just going in there blind. Surely they would have noticed if something wasn't quite right.

I briefly asked if this could have possibly been our singleton baby that has passed, this was the feeling I couldn't shake. After all, the 'twins' we thought were showing excellent signs of improvement. Who we'd thought was our recipient twin was showing heart function returning to normal, hydrops improving, his ductus venosous looking so much better with the reverse A-wave disappearing. It looked to be like we were headed into a sort of 'safe zone', at least for the moment, if such a thing were to exist when managing TTTS. We knew that there was still always a chance that we could lose one or both twins following the surgery, so of course I could understand their knee-jerk reaction to assume that we'd lost our recipient twin, as many cases of TTTS turn out. I just didn't agree, it didn't feel right.

I will back track a little bit, some of this I've written already. At Friday's scan, our singleton baby had a very high MCA (middle cerebral artery) reading. He'd also had a high MCA reading in Toronto, but when the doctors here called Toronto about it, they said they weren't concerned because the baby was so active, and thought we should ignore it. Dr. G here was theorizing that a high MCA reading could indicate possible fetal anemia. The thinning blood will generate that high MCA reading. Though she did mention that it was strange that it didn't seem to be progressing. So I had blood work to rule out any antibodies or virus' that I could be carrying unknowingly that could be causing fetal anemia (to my knowledge, my own iron levels would not be the cause, but my iron levels are normal anyway). Our singleton also always had that excess fluid of unknown origin, but had until recently, also had normal blood flow in all his doppler samples. This excess fluid isn't a cause or result of fetal anemia. Still we don't have many answers for that. Fetal anemia can be treated if necessary, and usually quite successfully. They can perform blood transfusions through the umbilical cord in utero. Incredible.

In any case, I went to our ultrasound on Sunday. Dr.L was scanning us that day. The babies seemed to have shifted quite a bit - those little tricksters. He labelled the donor twin on my left side, the singleton down my midline, and the recipient twin on my right side...seemed strange that they'd all be separated like that, but who am I to argue at this point. Even I was confused, they certainly did look to be in different positions. It's just so different in there now that everyone has fluid.  I asked about it, but he said it happens all the time. He sampled the babies. The donor twin looked great. The baby he thought was the singleton also looked great aside from a slightly deepening base line in the ductous venosus reading (something I would have expected to see in the recipient twin, not the singleton, but he wasn't concerned) - and he had NORMAL MCA readings! Hooray! That was the false alarm I had mentioned in a previous post. He also only found a pocket of 7-8cm of fluid around the singleton, where we usually find 11-12cm. Could it be that his excess fluid is somehow lessening?? Wonderful! The baby he thought was the recipient twin, while he couldn't get an MCA reading due to his position tucked up into my ribcage, looked to have otherwise totally normal dopplers. I left the scan feeling happy that things seemed to be going to well.

I think I know what happened, but it didn't occur to me until it was too late. Dr. L got our little babies mixed up. For whatever reason, I can't accept that our recipient twin has passed. I really, really think that the baby tucked up into my ribcage is our singleton. It didn't make sense that the singleton could somehow be in-between the twins...maybe I'm clueless, but I don't understand how the twins could not be side by side, with another baby separating them and somehow still have all their outer membranes intact. Not only that, but how could our singleton go from consistent unexplained high MCA readings and polyhydramnios to otherwise completely normal aside from a slightly deepening base line in his ductus reading? A reading we'd expect from the recipient? This is totally off. Even more, the baby that passed is the biggest of the three. Our biggest baby has always been the singleton (well, once they sorted out the babies properly as the TTTS worsened, we realized then that the biggest baby has always been the singleton). At Tuesday's scan once we discovered his heart not beating, they also noticed that he had significant hydrops. Most of his internal organs were surrounded by fluid. Though again I could understand the knee-jerk reaction to assume that this was our recipient twin, I remember that the end stages of fetal anemia is exactly this, severe hydrops leading to heart failure and death.

We now have daily ultrasounds first thing in the morning. I am on c-section watch and am to fast all food and drink after midnight every night in case they need to schedule an emergency section after one of these morning ultrasounds. I have our survivors heart rates checked every 4 hours, and an NST (non stress test) performed twice a day to check for accels/decels in heart rate and movement. We are constantly being seen by nurses, doctors, the NICU, social services and counselling, and volunteers from the church.

At our ultrasound yesterday morning, the following the passing, I felt much more clear minded and was able to ask questions and get them to check on things while scanning to help answer them. My favourite doctor, Dr. W walked in just as I was about to ask my most important question. I was thrilled. He was very sympathetic and touched my leg as he apologized for our loss. He explained that he, too, based on the ultrasound findings that Dr. L wrote up, thought it was our recipient that has passed and quickly went through the possible causes but not in too much detail as he knows we've read and researched and have been told a million times before. I was thankful for that. But I was ready to ask my big question loud and clear.

Could this have been our singleton that passed? I mentioned my gut feeling, that I just feel like I know it was our singleton regardless of the known complications of the twins' TTTS and their higher chance of not making it. I explained the high MCA levels on our singleton that mysteriously returned to normal, along with his fluid levels, but that we couldn't get the MCA readings for the other baby on Sunday. That maybe our singleton was actually the baby tucked up into my rib cage, preventing us from getting his MCA reading. I also mentioned that around the other two survivors, you could clearly see the floating membranes from the unintentional tear during surgery. That their entire sac is slack and looks to be floating in the wind, as one would expect from a tear like this. Our singleton's sac has never looked like that. With his excess fluid, it has always been a clean, tight bubble.  And when we look at the baby that passed, his sac appears to be separate. No floating membranes, a clean sac. Perhaps with less fluid, but still taught. Less fluid could be explained by his death, as fluid and tissue start to reabsorb. Finally I reminded them that Toronto was certain that the anterior placenta was the twins', not the singleton's. Sure enough, the technician was able to follow two pulsing umbilical cords today, and could just almost clearly see both of their insertion into the anterior placenta (the twins). She was also able to find early in the scan that the baby who had passed, had a cord insertion into the posterior placenta (the singleton). She was unable to reproduce that again later on when I was asking, but she remembered what she'd seen. Dr. W put his hand on my leg again, and looked at me right in the eye. He said, "Hilary, I think there's a possibility you could be right." At the same time, things are SO confusing in there. The placentas are enourmous and difficult to follow, there are limbs and cords everywhere. Adding to the mess are the floating membranes and extremely active babies leading to difficulty keeping track of who's who.

The doctors have not confirmed my suspicion yet, and may not be able to until delivery. But to me, it makes perfect sense. Dr. L had the wrong babies pinned, and decided to let the missing MCA reading on Sunday slide because he thought he'd caught the worrying MCA reading on the singleton which had looked to be improved, when it was actually our recipient. So, our singleton continued to worsen over the next couple of days. If he had fetal anemia, it consumed his body until he couldn't fight any longer and we just happened to catch his heart beating in those precious moments before he left us. What breaks my heart more than it already has, is that fetal anemia is treatable. Maybe we could have saved his life. I may be completely off, the doctors may be completely off. We will have to wait until delivery to know for sure what was going on in there and who exactly we lost, though we may never know exactly what caused our little boy to let go.

I have only briefly let me blame myself for this. At the same time I know that it is too late, and worrying about something I could have done differently won't bring him back or help our survivors continue to fight. The thoughts I had were that I should have been a better advocate for our babies, and spoken up when I thought things were amiss. That maybe we could have treated him and kept him alive, just as we did for his brothers. I am sometimes angry at myself that we chose not to get an early ultrasound, as the doctors may have had a clearer idea now of who's who, and who belongs to which placenta or whether this was really a case of identical triplets. Maybe if I had known sooner that we were carrying three babies, that I would have eaten better. Taken better care of myself. Maybe I wasn't healthy enough when we were trying to get pregnant again - I was a stick, and breast feeding, and wasn't eating properly. Maybe I was malnutritioned enough to cause abnormalities in the developing placentas. I am also terrified, and not certain that this isn't what happened, that maybe the pressure I'd had on my inferior vena cava while on my back at the beginning of that ultrasound cut off so much blood flow to give me that sort of awful reaction, and at the same time cut off oxygen to our precious little boy long enough to stop his heart in minutes. This scenario in particular, I don't think of often. My worst nightmare would be that I somehow contributed to his passing. Could my body's severe reaction in that moment have been the sign that we were losing our baby? It would make sense - we are one, completely connected. Why wouldn't it produce a physiological response in my own body. Maybe I would have felt that same way regardless of the position I was in, maybe it was my body's way of telling me that something terrible was happening. That we were losing the life that I was once growing.

Other things I think about, are that maybe our little guardian angel knew something we didn't. Maybe he knew that if we intervened and entered my uterus again to give him a blood transfusion, that it would have ruptured his already stressed membranes from the extra fluid and perhaps led to preterm labour or an emergency c-section - but that it would have been too soon for his twin brothers to be delivered while they were still recovering from the effects of TTTS and that it would have in turn led to their passing. Or that the blood transfusion through his umbilical cord would have caused it to go into spasms and lead to his passing, and we'd forever blame ourselves and wonder what would have happened if we just waited. There is also the possibility that perhaps his consistant polyhydramnios, something that he'd had from our very first ultrasound, and his high MCA readings were the result of an unknown defect or congenital disorder. It has always gone unexplained, yet nothing had been ruled out. Maybe he knew that he would not have made it regardless of any intervention, and so he tucked himself up close to my heart and let us miss his MCA reading, sacrificing himself to save his brothers, to give them a few more days or weeks to grow and to be well enough to live on the outside. These are the scenarios that, although devastating and heart breaking and make me cry until I can't breath, also help to lift me up, and keep me going and stay positive for our survivors.

I know that he is with us still, I can feel him. I know that he is watching over his brothers and giving them strength to keep going. I know that he's watching over his mommy and daddy and making sure that we stay strong, too. I know that he loves Lilah and looks up to his big sister and will watch over her, too. I am so grateful and thankful to have these days now, how ever many that are left, to keep him with me. To carry him safe and warm, to talk to him and stroke his spot on my belly, to give us time to grieve him and prepare ourselves for the rest that is to come. We are so, so sad. Devastated. Absolutely, irreparably heart broken. We will always feel his loss, this giant hole, we will always grieve losing him. And yet I find that when I'm not crying the worst tears a mother could cry, I feel warmth and love. I feel like I can talk about him, through the tears, with strength knowing that God has a plan, that our little guardian angel has a plan, and that I can trust in the decisions they've made. When I prayed the night before his passing, I prayed that our babies would come only when they were ready. Maybe this little boy, our little boy, was ready.

Than you again for all of your warm and comforting messages, we are so blessed to have the presence, love and support of each of you in our lives. We are doing ok, the best we can given the circumstances. We cry and we hurt, but we're still smiling and trying to laugh and move forward, staying calm for Lilah, with cautious excitement for our survivors while we grieve for our son who left us far too soon.

We feel your love, and send ours in return :)