More News

So I am dealing with the news that our little boys are at extremely high mortality risks this entire pregnancy. As long as they are in my womb they face constant risks. However, their odds while still inside me are so much higher for success for a few more weeks. A few days after getting the diagnosis of my mo-mo babies I woke up in the middle of the night with heavy bleeding again. It was more than I was used to (and at this point I am used to regular bleeding because of placenta previa). I called my mother in-law to drive me the hour and a half to Labor and Delivery where the Drs knew my case a little better than here in town and were more likely to give me the answers I needed. I called my parents who live about an hour and a half from my Dr in the other direction and they met us at the hospital. It was so funny for me when I walked in and told the nurses that I was 14 weeks along with mono-mono twins, they responded with, "Oh! Dr. ---- was just telling us about you today!" I had gotten the same response when I met with the Parinatologist a few days before. He had just come out of a delivery with my OB and I had been their topic of conversation. Mono-mono twins are not unheard of, but apparently our cases are rare enough that a single person can become the talk of the hospital.

While at L&D I had an ultrasound and saw the heartbeats of both babies and was instantly relieved. They are still small enough that I only feel occasional kicks and flips, so it's hard to gage how they are doing. After being at L&D for several hours, having blood work done and having the on call Dr explain to me how much blood (in form of cc) is actual cause for concern I was released. I was exhausted but so relieved to know that really everything was ok with the babies.

I've continued on bed rest, letting my kids go play with friends and neighbors that are gracious enough to take them and take care. My mother in-law has all but moved in with me to take care of the boys so I can focus on constant rest.After having the 90 minute drive to my Dr in the middle of the night my mom convinced me that it might be best to make plans to move down with her, transfer to a Dr there and only be 20 minutes from a major hospital that can handle my case. She lives in a much larger city than the one my Drs are in. I was sold and started asking for referrals from my Dr the next day.

A little over a week after my trip to Labor and Delivery I had more appointments with maternal fetal medicine for more ultrasounds. At 16 weeks (now) I have had at least 9 ultrasounds. While in my appointment I met 2 more parinatologists who both seemed excited to have another mono mono case to work with. It's exciting I guess. I did break the news to them that I was working one getting transferred to a bigger city for more total care for me and easier access to care for the babies, since I lived so far away. The Dr I was with told me that if I wasn't transferring he would probably admit me to the hospital by 20 weeks so they could monitor me better, but he was very glad that I was transferring and even talked highly about the group I would be joining.

While in this appointment the Drs decided that I haven't been dealing with placenta previa as we had previously thought. No, I have it worse than that. I have a subchorionic bleed for starters, which we've seen in both of these higher tech ultrasounds, but I didn't know what it was. I'll be honest, I'm still pretty confused. What I gather is that my bleed is in the uterus, not in the amniotic or uterine sacs that the babies are in. But it is pooling up above my cervix, causing my bleeding with excess activity or pressure. On top of this I have what is called Vasa Previa. This is the scary part. Not the bleed.

When you Google images of Vasa Previa most of them are not in English

So the picture explains pretty well what the scenario is. The umbilical cord work as a covering for all the tiny nerves and veins that transport oxygen and nutrients from the placenta to the baby. With Vasa Previa, the umbilical cord is not attached to the placenta (or sometimes the placenta is split and has vessels connecting the two portions of placenta). The Vasa Previa is when the exposed vessels/veins are over the cervix. With my case it looks like the part of the veins are attached to the membrane right above my cervix where I have my bleed up as well as vessels that traveled to the placenta. Only one of the babies has this with his umbilical cord, the other babies cord is attached normally to the placenta.

As of right now both babies are getting a fair amount of nutrition and appear healthy. Because we caught the Vasa Previa early we have the best chances for success. I will continue on bed rest the rest of my pregnancy with minimum activity. Once I move in with my mom I'll be close to the hospital for any times that I am concerned. We still except me to be admitted to the hospital for 24 hour monitoring sometime after 24 weeks. 

At this latest appointment which was 15 1/2 weeks along, when they gave me the news and started to explain Vasa Previa, all I could do was laugh a little. It's completely ridiculous how pretty much every time I see a Dr I get an ultrasound and new, major, high risk factor news about my pregnancy. I mean, my options are to laugh or cry, and crying takes up more energy than I have most days. So laughing it is. Accepting it is harder to do. I cry a little to get through the acceptance process. Everything that I have that is a complication to my pregnancy is hard to accept. There was nothing I could do to prevent any of them, nothing we can do to improve the outcome with any of these things (except plan on delivering babies by 32 weeks, because that's the plan). There is nothing that anyone can do to change these circumstances.

This morning I was able to Skype with my husband. We've been able to have great communication with each other through this deployment so far. We email daily and talk either on Skype or the phone almost daily too. We have had so many people offer sympathies to us when they find out what we are going through with this pregnancy and that Zed and I are separated during this time too. Some think that Zed should do what he can to just come home. But we can't even begin to express to others how many blessings have been put in place for us with this pregnancy because Zed is gone. Today I actually came to the conclusion that God waited for us to have these babies, waited for me to be able to get pregnant until Zed's name was on a list for deployment. We tried for a year and a half to get pregnant. It felt like forever, because we got pregnant with Mr. J and Otis so fast. It didn't make sense to me why it wasn't working this time around. But I truly think that God knew that he had these twins to send down for me, that their prenatal situation was going to be a difficult one, and that Zed and I would actually handle it BEST if HE waited to send them down while Zed was on deployment. We've had an outpouring of help and support from ward members, neighbors and the community because Zed is gone. Since he left, I've not mowed the lawn or taken the garbage to the street once. The people in my amazing community want to help and are fantastic. They help with kids, they bring in meals--quite often when I've been unable to even think about eating, or at least keeping it down. If Zed were still around--and by "around" I mean at work 8-14 hours a day-- do you think there would be as much support? I don't. Zed would have to go to work, then come home and take care of me, the boys, the house, etc. With Zed on deployment our insurance is actually better, so we will be paying less out of pocket with all the extra ultrasounds and doctor appointments that are now vital. And if Zed were here it would be much more difficult to make a decision as to how to get me closer to a hospital.

And really, as a community and for our families, what an incredible opportunity they are able to seize to serve others, and to help others. Zed and I have talked, when one of us is having a really hard time, about what it would be like if he were to come home, though. And putting aside the extra help we get and the insurance we'd have to switch back to with his full time job (we aren't full time Army. The Army is Zed's part time job) we couldn't be happy if he left his deployment. I like to think I'm a patriotic person, I LOVE the USA, always have. I tell you what though, Zed puts me to shame with his patriotism. Being married to a serviceman has upped my level of love for my country more than I ever thought it could be; but can you even imagine how much more Zed loves this nation actually being that serviceman? We've talked about how if Zed came home early by his own choice, with the situation as it stands right now, we would both feel a little empty. I support my husband in his service to this country. The part he takes in defending our freedoms is amazing to me. We've talked about, we've prayed about it, and we truly feel like it is God's will that I sustain this pregnancy the best I can here at home, while Zed sustains me and our country where is is stationed.

I'm making plans to move next week to my parents' house and then have an appointment with my new team of Drs a few days after that. We are crossing our fingers for no more "news" at this point, only progress.

At 15 w 3 days I had a Dr appointment, so I did some makeup and put on more that sweats. It was a picture worthy moment. I was back in pajama pants and Zed's giant shirt about 3 minutes after the picture was taken I think.

We love to send fun pictures to dad. Love these silly boys!

Otis one day really REALLY wanted me to send Zed a picture of him with Bear

Sometimes this is the most hanging out the Mr J gets to do with me....snuggling on my bed.

Why a Warrior?

So today I'll go into a little bit why I chose the blog title "A Warrior at Hear". It goes beyond the fact that most of the names Zed and I thought up even in humor were already taken.

The first week of April is when this pregnancy started to get really complicated. I had an appointment an hour and a half away with a parinatologist at his super fancy ultrasound in maternal and fetal medicine. Because of being on bed rest, so far away from my appointment and the general likelihood of my emotions getting the best of me I had a fantastic friend rework her entire day to take me to this appointment. My ultrasound lasted about an hour an a half. We saw two healthy little boys. Yes, at 14 weeks we could see they were boys. That happens when the ultrasound wand is going over your stomach for 90 minutes, you see a lot of angles. Each baby gave us a clear and distinct view. I was a little surprised! After having 2 boys I kind of expected girls, but I am happy for them. We are good at boys in our home.

The top reason for having this ultrasound was to find a membrane separating the babies within my uterine sac. We were hoping, kind of against all odds at this point, that they would each have their own amniotic sac. We didn't find one. We were prepared for this diagnosis. Zed and I as well as other family members had started doing research on what is termed "mono-mono (mo-mo) twins" This diagram (found on Wikipedia) explains pretty well how this happens and what that means. Like I mentioned before, the way you get identical twins is when a single egg gets fertilized and then splits into 2 different babies. Depending on what day after fertilization the egg splits decides what condition the babies will grow in. Mono-mono (the 3rd image down) is my case. The egg split late enough that only one placenta (monochorionic) is evident to be there. Also, monoamniotic, only one amniotic sac for the twins to be in.

There are several serious concerns with this. It is pretty rare. Only about 1 out of every 100 identical twins are mono-mono. Only about 1 out of every 10,000 pregnancies are mono-mono. So it's not unheard of, but it is not common. The first and biggest concern is that the babies are feeding off of one placenta. It is possible for one baby to take more nutrients than the other leading to developmental deficiencies. One baby may actually end up transfusing his blood through the placenta to the other baby (Twin to Twin Transfusion) which can be quickly fatal for both babies. Both of the severe cases are made very difficult to monitor since the babies are in the same amniotic sac. The Drs now have to look at baby measurements and bladder sizes opposed to being able to evaluate the amniotic fluid levels more easily.

On top of this is the biggest concern for me at this time. The umbilical cords. Because the babies are free to swim and flip and turn around each other the risk of cord entanglement increases. But not just for the babies to become entangled in the cords, but also for the cords to become tangled  on each other. The Dr told me that usually when mono-mono- babies are delivered the umbilical cords are tied up in knots and look like giant braids or something. It didn't paint a pretty picture. Right now we know from ultrasounds that the umbilical cords are already looking like one big mass twist tied together. If one of the babies pulls to hard or something, then the oxygen and nutrition supply is cut off. I wouldn't even know until my next ultrasound if something happened to these little guys.

Most days I get to feel one or two distinct kicks, sometimes I'm pretty sure I felt a somersault, but really they are too small still to feel very much. So I can't even monitor it very well.

In most of my research most of the women with mono-mono babies are admitted to the hospital for regular if not 24 hour monitoring between weeks 24 &26. They deliver most regularly around week 32, if they made it that far.

I picked "A Warrior at Heart" as it randomly popped in my mind and seemed to perfectly describe our entire family and what we have to be to make it through this. It is very possible that my babies will not survive this pregnancy. It is very possible that they will survive and have lasting mental or physical disabilities. It is also possible that we will come home victorious with 2 healthy, happy, hungry little boys. We have so much faith in the latter option being for us, but know that we can handle any circumstance. I know I have to have a warriors heart to do what is best for my babies. To fight for them in the Drs offices, with the insurance. To fight for their best outcome by sending my 2 wonderful boys off to play with friends and family everyday and not be the one to care for them right now. It takes a warriors heart to be on bed rest, turn down opportunities, and ask others for help. It takes a Warriors Heart to be serving your country, on the other side of the world from your family, when that family is in such rare circumstances. It takes Zed having a Warriors Heart to calm and comfort me to know that we as a family can handle anything, even this crazy trial we have to endure for this year. It takes little Warrior Hearts to know that mommy can't get out of bed to play catch or go to the park, but can only stay in bed and read books. It takes little Warrior Hearts to be messenger to grandma for mommy, and to go to different houses every day of the week so mom can stay in bed. And it also takes TINY Warrior Hearts for these unborn babes to be strong. To defeat the odds that are constantly stacking up against them. It'll take Warrior Hearts for active 3.5 oz babies to be less physical, and move less for the safety of themselves and their brother.

My little family is ready to be a Warrior at Heart. No one should have to be in a position to make the decision to become Warriors at Heart, but when you are placed in that moment, and everyone has to be, we must choose to be the Warrior that will come out with our heads held high, after doing everything we can to provide the best outcome for all of us.

My Little Warriors

The Beginning

I’m writing this blog because I am having one heck of a pregnancy. Zed and I live in an amazing little town. Everyone cares so much about one another. Everyone wants to help out one another. I love it. But this is a much easier way to explain to a lot of people all of the things going on during this pregnancy.

I’ll start by saying we started this year out with crazy high hopes of getting pregnant. We’d been trying for a long time. We have 2 boys- 5 &3 – that we got pregnant with incredibly easy and quick. At this point we are pretty sure that I have endometriosis and just kind of lucked out in getting easily pregnant with Mr. J and Otis. 2 weeks into the new year we got a call that Zed’s name was on a list for deployment, with a fast mobilization. We had only a few weeks to prepare. 2 weeks into our preparations we found out that I was pregnant and were completely thrilled that we weren't going to have to wait an entire year to start trying again. So it began.

Another few weeks later and Zed was gone, training in the northern end of the state, about 5 hours from home. The boys and I made 2 trips to visit him in the 3 weeks he was still in the state. The day before Zed’s group started to fly out to another base we were able to get into a Dr up north and have an 8-week ultrasound. We found out we were having twins. Identical twins.

This was extremely exciting and pretty much nerve wracking at the same time. Zed and I have a really great rule though, only one of us is allowed to have a break-down or freak-out at a time. It’s worked for us thus far. We came to a pretty good understanding that while he was going to be gone this entire pregnancy it truly was a part of God’s hand in the timing of all this. At this point we had no idea how much God’s hand really was aiding this pregnancy.

A few people asked us early on how we could tell that the twins were identical. It works like this. Fraternal twins happen when a woman ovulates 2 eggs, and both eggs get fertilized. It is easier to identify this in early pregnancy because there are two separate sacs in the uterus, each with a baby in it. With identical twins there is one egg that is released in ovulation, it becomes fertilized, and then proceeds to split.  When you look on an ultrasound the 2 babies are in 1 sac in the uterus, usually separated by a thin membrane wall so each baby has its own amniotic sac.

You see that there is one uterine sac and two babies. Pretty cool! 

This is the beginning of our crazy adventure. Having twins is rough on a body. Twice the baby really can cause twice the sickness and everything else. My older sister had twins a few years back and we really saw how much harder the twin pregnancy was on her than her regular pregnancy—which, by the way, the women in my family are notorious for having very rough pregnancies. We don’t really get a relief in the second trimester or any point in the pregnancy for that matter. We are exhausted the entire 40 weeks, and sick at least the first 13. Very sick. And we might get sick at any other time in the pregnancy randomly. It’s not an easy process for us. But we all love our babies. OK, enough sob story.

On to my complications. At my first regular prenatal appointment with the OBGYN that I had with my other two kids we took another look at the twins and everything was still looking good as far as heart rates and such. The problem is that on the little portable ultrasound machine the Dr had in my room we couldn't see the membrane that is supposed to be separating the two babies into separate amniotic sacs. At this point we weren't super concerned because of the quality of the ultrasound we were using. My Dr referred me to Maternal and Fetal Medicine a few weeks down the road so we could use much better technology. At this point I was about 11 weeks along and we had no reason to be concerned yet. I took my kids with me to visit my parents. and spread to word that we were expecting some cute little babies!

Well a little bit later the boys and I are back into our routine. On Sunday I was having an emotional day. First, I am pregnant and exhausted and sick. Second, I had just found out that my husband and his unit were officially leaving the country on their deployment. I went to church and played the organ for sacrament meeting, then piano in primary for the next 2 hours. If you've never experience hard piano benches for 3 hours, you might be missing out on all sorts of  numb-bum syndromes. The first problem came that afternoon when I woke up from my nap and was spotting. I've never spotted even a tiny bit in a pregnancy, and this was heavy spotting. I completely freaked out and called my home teachers (in the LDS church priesthood holders are assigned families in the ward to help keep an eye on, support, and lend general help to; in my ward I'm lucky enough that my best friends' husband is my current home teacher). They came along with some other priesthood brethren and my father in-law and gave me a blessing. We receive blessings for many reasons in the church, most commonly known and talked about are healing blessings. This blessing was primarily for peace I think, because I was not handling things well. I had talked to my Dr (who happens to be in the nearest "big city" 90 minutes away) and gotten his opinion. He was not overly concerned at the time and that helped calm me down to. Until there was more bleeding. I couldn't handle it anymore and called a really good friend and had her run me to the emergency room at our little hospital here in town.

All this time my husband is calling and texting me from the airports while he is still in the USA to keep updated. I spent several hours at the emergency room and found nothing wrong. The babies were healthy and active, which was the concern. I was put on bed rest until I could see my OB in a few days.

That few days later I went in for about an hour long ultrasound and my Dr decided I most likely had placenta previa and was going to be on very limited activity restrictions for a while. Placenta Previa is when the placenta (which is a giant mass of veins inside the muscle iteslf which provides nutrition to the babes) is sitting right on top of the cervix. Too much pressure (from maybe sitting on hard benches on a stressful day for hours on end) can cause it to bleed some. It's dangerous, but very manageable with minimum activity. 

So this is the beginning of my pregnancy. By the time I was 13 weeks along I was put on bed rest.