Our Little Baby Adventure

This may take you a while to read so make sure you're comfortable!

About 8 weeks ago, when I was 13 weeks along, I started getting cramps. They were very minor but I noticed them right away. I guess when you get pregnant, you become extra sensitive with how your body is feeling because everything changes so fast. Additionally, when you start getting random pains, you worry something is wrong. Ryan and I were supposed to go out to Tooele with some of his brothers to go shooting with his brother in law that's a highway patrolman. We made it down to the Collette's house and I was in more pain so I decided not to go. I really encouraged Ryan to go even though he offered to stay. Things weren't too bad at that point and I didn't want him missing out on the fun just because I needed to.

The pain continued to get worse and worse. I called the doctor on call for my OB office and she said that I should make sure to drink a lot of water and let her know if anything changed. I've learned since that when women get dehydrated, especially in the summer, they can get contractions because the hormones that cause contractions have a higher concentration in your body without the needed hydration. Anyway, I wasn't able to keep anything down. By that time I'd thrown up 3 or 4 times. I was sick a lot anyway, and I think the pain from the contractions made the nausea worse. By this time I was really miserable. Bree, my sister in law, came over with a heat pack from my belly. I had to be careful because the heat can cause brain damage to the babies.

A little while later I started bleeding, and a little later I was bleeding a lot. I had called the doctor several times and she said if the bleeding got worse, to come into the ER. It was bad enough that there wasn't really a way to contain it with pads. By that time, Ryan had gotten home. He and his dad and Ryan, our brother in law gave me a priesthood blessing and soon after we left for the hospital.

We got into the ER very quickly. I don't think there was one person waiting in front of us. What a blessing! We were obviously very worried at this point and I was in a lot of pain. They got us into a room, I got an IV, and put me on morphine for the contractions and Zofran for the nausea. Wow, it helped considerably. Ryan likes to tell people I got hooked after one dose of morphine because I wanted it so often in the coming weeks. I say, who wouldn't?!

I got my first pelvic exam...whoopie! And then it felt like we waited forever. They finally took us down to get an ultrasound and the tech took a very long time with the examination (I have since learned that that exam was nothing compared to the ultrasounds I've had since :) and it felt like he wouldn't tell us anything! I was so nervous and desperate for information! But, he did give us some big news...they're boys!!! We knew by this time that they were identical but not their sex. He got a picture of both of them in the same shot with their "twig and berries." Yep...how funny is that?! We found out that I had a medium sized hemorrhage in my uterus and that I might be on bed rest for a while. We had instructions to go back to my OB on Monday.

This was the beginning of lots and lots of doctor visits. It really hasn't been too bad going in for visits. But it is always emotional for me. Not in the sense that I cry when I go in, but that I'm nervous for whatever news they have to give me. I get scared every visit that we'll go in and one of my babies won't have a heartbeat. I guess it's just a natural instinct to be worried, but it's amazing how attached I've become to these children that I can't see or touch. Each and every one of the sacrifices I make for them help me love them and want them here with me even more.

We went back into our OB on Monday and the doctor we met with really bugged me. She wasn't our regular doctor, just another one in the office. She seriously downplayed our situation and said the hemorrhage wasn't bad at all and that I didn't need to be on bed rest. We were grateful for the news but I really felt that she was not compassionate in any way and just wanted to get rid of us quickly.

For the next week, I was still very careful. It was painful to move and so I stayed on bed rest as much as I could. My sister was in town so that was a HUGE help! She kept me company and helped clean the house and made me food. It was a crazy coincidence that she was there that week but also, such a huge blessing.

That Friday, I woke up from a nap and there was blood everywhere. Sorry for the details if this grosses you out, but it was bad. There was a huge spot on the mattress, on the floor from trying to get up and a trail all the way to the bathroom. I immediately got into the shower and texted Ryan. I was having contractions and was in some pain. At first, I didn't want Ryan to come home but after a few minutes, with the bleeding not getting any better, and the contractions continuing, I called him. He wasn't answering his phone so I kept at it, all the while, laying in the bottom of the shower. Ryan was out doing carts and a friend at work brought his phone out because she saw I kept calling. He knew it couldn't be good because I don't call him at work. He came home right away and as soon as he got home, I felt so much better emotionally. I was so scared and he has such a calming influence on me. He cleaned up the mess and helped me out of the shower and went to call the doctor. This was on a Friday and our doctor's office was still open so we went in right away.

They had to stay open a little later because of us. They did an ultrasound and the boys looked great, just as they had the week before in the ER. The doctor wanted to know how much blood I was losing currently, so they cleared out all the pooled blood and checked the flow from my cervix. It wasn't too bad at that point but they could tell from my blood pressure and heart rate when I was laying down, sitting, and standing, that I had lost a lot of blood. It was enough blood that the doctors were concerned it wouldn't be safe for me to continue the pregnancy. We were checked into the hospital to stay the night and one night turned into two. I got another blessing from Ryan and his dad after we got up to our room.

Our hospital stay consisted of monitors, an IV, a hard time getting up to go to the bathroom, keeping track of how much I was peeing, checking my blood pressure and heart rate every few hours, and checking my hematocrit every six hours. No wonder I was losing so much blood. They kept taking it from me! By the time I left the hospital, my hematocrit was stable but it had dropped to about 25 points. It needs to be 38 in order to donate blood. And by the way, that hospital food really does suck! Thankfully I had Ryan and my sister to go get food for me! My teammates, Miranda and Danielle came to visit and so did Jason and Amber. I'm so glad that they came! We left the hospital Sunday evening and were so grateful that I didn't need a blood transfusion and that my blood count was stable.

Over the next couple weeks I was very careful. I tried not to move around much. We had more doctor visits and they found that my blood count was increasing, which presumably meant I wasn't losing more blood. My doctor told me I no longer needed to be on bed rest. They also found some disturbing symptoms with the babies. Their heartbeats were looking fine, but they found that Baby B had a lot more fluid around him than Baby A. In the same visit, they found that Baby A had no visible bladder. Immediately, they were concerned about what was called twin to twin transfusion syndrome. They had warned us of the risks of this when we originally found out we were having identical twins because it can only occur in a situation where the babies share a placenta.

Twin to twin transfusion syndrome occurs randomly in about 10% of identical twins. There are about 9,000 cases in the US each year. When two (or more) babies share a placenta, the babies can actually share some of their blood. Usually this blood sharing is equal. In my case, the blood sharing was not equal. Blood vessels form that transport blood from one baby to the other and the donor baby does not get as much back as he is giving. My donor was Baby A and my recipient was Baby B. Because one baby has very little blood volume, he eventually shut down blood flow to his kidneys because his little body recognized he needed to keep all the fluid in him that he could. The kidneys stopped producing urine so there was no bladder visible on the ultrasound. The other baby, the recipient, had too much blood in his body so he started peeing excessively to get rid of that liquid. This is what creates the volume of fluid difference in the two babies. At first, my donor baby had about 2 cm of fluid with no bladder visible, and my recipient had 8 cm. Eventually, the fluid levels were about .5 cm on the donor and 13 cm on the recipient. Normal fluid levels were between 3 and 7 cm for their age. The smaller, donor twin, eventually had very little to no room for movement. He was considered a "stuck twin." I found it quite humorous that on the ultrasound, his back was to us with his little bum stuck straight up and no way to move. Don't think that I'm heartless for saying that, at this stage they were in no pain or distress.

It was much harder for me to come to the realization that something was wrong with my babies, rather than just that there was something wrong with me. I could handle the pain and the discomfort but I knew that if there was something wrong with my little boys, there was nothing I could do about it.

We worried a lot over the next few weeks. We didn't know what to expect. Twin to twin transfusion syndrome or TTTS can progress very rapidly. I'd read several cases where patients were rushed into surgery the day after they found their babies had TTTS. My doctor tried to set up an appointment with the specialist here in town that does the surgery but we were given a call later that week and the appointment was never scheduled. We found out at our next appointment, that because of the blood clot that I had in my uterus from the previous ER visit and hospital stay, he was not willing to do the surgery. This was a huge disappointment to us and our doctor even shared some of her frustration with the us that we were not going to be able to go to this doctor here in Utah.

We knew that we had to do everything we could to save our little babies so we planned a trip out to see a doctor in LA. Dr. Chmait has had a lot of experience with the surgery we would need to save our babies and we knew that if anyone would do the surgery, he would. He is the only doctor in the country that has shared the results of his surgeries and has much higher success rates than the average in the US. With his success rates, 90% of the time, at least one of the twins survives and 70% of the time, both twins survive. Without doing the surgery, 95% of the twins will die. It is amazing how much modern medicine has progressed. The odds are a miracle.

We were able to use all of the miles that I'd saved from traveling with my volleyball team for two and a half years plus some that Ryan had built up and were able to get our tickets for $60 each. My teammate, Stefanie Shardlow Neeley, grew up outside of LA and I asked her parents if we could stay at their house while we were out in California for the surgery. They were so gracious to let us stay in their home and let us use their car. We are so grateful to the Shardlows!!

Our appointment was Wednesday the 1st early in the morning so we woke up very early to make it into Hollywood on time with the traffic. Thankfully, we could use the carpool lane. We got there and met Terri, the nurse, and Ashley, the ultrasound tech that would be working with us for the next few days. They are awesome! Along with Dr. Chmait, we worked with some of the best people out there. We filled out some paperwork and started the ultrasound. It normally takes an hour and a half to two hours but it ended up taking us about three. My boys were right on top of each other and it made it really hard for Ashley to find the things she needed to. She has been doing ultrasounds for this type of surgery for 11 years and you could tell she was VERY focused. For the next few days, their position made it very difficult for Ashley in the two different ultrasounds and for the cardiologist. I think it's pretty cute that it was almost like they were hugging each other with their heads together for several days. They were worried too!! :)

Dr. Chmait eventually came in and introduced himself. This was probably the hardest time of our trip. He came in to present to us our options and discuss the risks. He was not aware that I was still leaking blood but thought before we came out to LA, that the bleeding had stopped. He told us there were five options. The first was to do nothing. The second option was to terminate the pregnancy. The third was to terminate the life of one baby so that the other would survive. If one baby were to pass because of the TTTS, it was very likely that the other would also die. This eliminates the possibility of the second one dying. This option was not normally offered by Dr. Chmait because of moral reasons, but because of the serious risks associated with my particular case, he would put us in contact with those who could do it. The fourth option was to do an amnioreduction to decrease pressure on the uterus. This doesn't actually solve the problem, it just is like a bandaid to the problem. You just hope that it holds until they can survive outside the womb. The fifth option was the surgery that we had come to do. We didn't realize what a great risk the surgery was in our particular case. Because of the blood clot that was in my uterus, the amniotic fluid would not be clear enough for Dr. Chmait to do the surgery. In addition, the proteins in the blood weaken the membranes around the babies. The surgery requires the membrane to be punctured and this would further weaken the membrane. The first problem could hopefully be solved. Dr. Chmait would be able to do a fluid exchange to pull out the dark fluid and put in clear fluid. This would add extra time to the surgery, increasing the risks for the baby. For the second problem, there is not much to be done. With the surgery, it would be very likely that my water would break very early, leading to premature babies and a high likelihood of severe brain damage. Ryan and I had a lot of thinking and praying to do.

We left the hospital and were able to contact one of Dr. Chmait's previous patients who was in a very similar situation to us. In over 500 surgeries that he's done, I am only the second case with a blood clot that would cause these complications. We prayed and felt strongly that we were in LA for a reason and that we should go ahead with the surgery. It was easy to eliminate the first three options and the fourth also created problems with weakening the membrane and the possibility of brain damage. We were able to talk to Melanie and hear her experience. We also found out that she was LDS and we don't believe that this was a coincidence. She had the surgery at 17 weeks and her water broke at 19 weeks. Through a miracle she was able to keep the babies until 27 weeks. Her girls were born and 10 days later one of them died. The other still has severe developmental problems related to prematurity. Her experience was very scary and was really all we could relate to, but we knew that it was the Lord's will for us to be pregnant in the first place. We knew it was His will that we have twin boys, that we would be in this situation, and that we should go forward with the surgery. We knew that if it was His will to do the surgery, we would be put in whatever situation He wanted for us. If He wants us to have two healthy boys, we know it can happen. If He wants us to have children with severe problems and handicaps, then we know that He will have entrusted them to our care and He will help us through it.

We went back to tell them what we had decided and went ahead with preparations for surgery. It was already scheduled for the next morning. We returned the next morning and made further preparations. There was another surgery scheduled for a woman at 7:30 and mine was at 9 so we had to be there by 7. I was able to watch parts of the surgery on my own monitor because they only did a local anesthetic on my stomach. The incision on my belly is tiny! They ended up taking out about a liter of fluid total after cleaning out all the fluid. The fluid was completely black from the blood. Crazy! I heard the doctor say right before the surgery that he had asked his little boys to pray for him for this surgery and later he told me if he had known it would have gone so well, he would have slept a lot better the night before. He also said he was as positive as it was possible for him to be that all of the blood vessels between the babies were lasered.

We had to stay the night in the hospital and the ultrasound was the next morning. I had contractions during and after the surgery so I was on magnesium to stop the contractions. Because of the magnesium I was on a clear liquid diet. So, I ate lots of jello! Through the night I was in some serious pain. It would happen when I would breath deeply or move my shoulders at all but I had a great amount of pain in my chest and shoulders. The doctors weren't really sure what it was but OWW! Thankfully it was gone by the next morning.

I was put into a wheelchair the next day and taken back over to the doctors office where we found that both of our babies had heartbeats. The greatest risk for them to pass is in those first 24 hours after surgery. Their whole world is shifted and their blood pressure changes almost instantly. That can be tough on those little guys! Our donor baby also had a visible bladder by the next morning which is rare. In addition, we found out that the lady that had surgery right before me had lost both babies by the next morning. So sad! They said they'd never seen a surgery go so well and then lose both babies. That so easily could have been us!! I pray that she will be comforted and know there is a plan for her and her little babies and that God loves her. 

We returned home to Salt Lake and I started in on my bed rest. I know it won't be the easiest thing but there is no question it will be worth it. It feels good knowing I'm doing everything I can for my little ones. I started feeling them kick about a week ago. It's fun! They also situate in different places so that my belly feels hard and you can feel their body parts sometimes. We had our weekly appointment last Thursday and it went very well. The fluid levels are starting to even out and their heartbeats look great! My heartbeat on the other hand is causing some problems! My heart has started racing unexpectedly for about five or ten minutes at a time. Sometimes I'll wake up in the middle of the night from struggling to breath. One time it was as high as 170 in the middle of the night! When this happens I get dizzy, struggle to breath, and sometimes get nauseous. So before my appointment on Thursday I'm going in for a second EKG and then I'll get fitted for a halter monitor that I'll wear for a few days. Right after those appointments I have my regular OB visit. Oh hospitals...don't you love them? :)

Normally the doctor spends a little more time taking pictures during the surgery but with mine they didn't have time because of the fluid transfer. But here is little Baby B's toes! 

Here is a picture of how they're right on top of each other. A's head is on the right and B's is on the left. A is sucking his thumb.

This is me ready for surgery.

This is right after surgery when Ryan could finally come see me. I was on oxygen throughout the surgery and right when we got out, the medicine they put me on to stop the contractions was making my heart race like crazy so I kept it on. 

This was after finding out both our babies had heartbeats. Ashley, the ultrasound tech, is on the left and Terri, our nurse, is on the right.

Thanks so much to the Shardlows for letting us stay at their house!!! 

These are just more ultrasound pictures from our many doctors appointments. Both of these are of Baby B. I think they already look like Ryan :)