No Amnio Today

So, we had a very long doctor’s appointment today. Appointment was at 1 and we didn’t leave until 3:30. We first met with the genetics counselor and went over the procedure itself and what the results will look like. We then went in for an ultrasound to check on baby before the procedure itself. They have to check to make sure the amniotic sac fused with the uterine cavity (I am sure those might be 2 different things, but that’s the best I can remember). Anyways, if you do the amnio before these 2 things fuse you are at an increased risk of complications. Well mine weren’t fused at all yet, so we will have to postpone the amnio a couple of weeks until this happens. She continued on and looked at all the different structures. The CH was still there and was about the same size. It looked a little better though simply because the baby was larger which made the CH not seem as large. She pointed out a bunch of key structures and everything was there and the heartbeat was strong. The doctor came in to discuss our ultrasound and take a look for himself. The ultrasound tech had raised a concern about the heart. She was trying to locate all the chambers, but was having difficulty. She noted that it could just be because the heart is still so small. When the doctor looked he told us the same thing. He said he noticed a defect called AV canal defect. He said it is still early for a positive diagnosis on this, but that is what he was seeing at this point. At the same time, when he looked at the heart from a different angle he did not see this defect at all. We already knew that heart defects were common with CH and knew we would be going for a fetal echo at some point, so we will be looking forward to that appointment for some answers. There was also a concern with the umbilical cord. Normally there are 2 arteries that flow through the cord, ours only has one. They said this is a situation seen in normal babies and babies with genetic issues so we will know more about this after the amnio results come back. There were a couple of measurements in the legs that were a little on the short side, but nothing of great concern. (OK so the baby may have my height genes).  It seems like a lot of unknowns were thrown our way again. Still all these questions about why these issues are there and what they will be like in the future.

With all this being thrown at me in this appointment, surprisingly there was a calming sensation through it all. No panic. I felt like God had his hands on me and my belly and was comforting me and making me feel like He had this in His hands. It was a weird sensation. Trey and I both left the office feeling better than we had at the first appointment. There seemed to be more hope this go around and we weren’t being given such a negative outlook. Yes, there are still a number of things that can go wrong still, but there was this sense of calming for both of us. All we can do is take it one appointment/procedure/test at a time.

The whole time we were having the ultrasound done; this baby was all over the place. I don’t think he/she  was ever still. I told Trey this baby looks like a bundle of fun.  I can’t wait to start feeling all that movement.  Again he/she was a little stubborn and wouldn’t quite cooperate with the ultrasound tech. She would get an image and go to get an image from a different angle and as soon as she would go to capture it, he would jump and change positions. It was rather entertaining to watch. I know with normal pregnancies there aren’t a lot of ultrasounds that take place, and so I kind of find this to be a positive of all this, we get lots of time to see baby and watch him/her grow.

We re-scheduled the amnio for 2 weeks on 02/13. We have to wait for Texas Children’s in the medical center to call us to schedule the fetal echo. Hopefully this next month will be full of answers and good results.

Words cannot express the gratitude for all the people we have praying for us and our baby. I pray that I am able to tell him one day about all these wonderful people that cared for him before he was ever born. I guess the old saying is true, it takes a village…

A Case of the Mondays

Nobody enjoys Mondays and it seems that everyone often complains about them. My feelings about Mondays these days come with a mixed emotion. Every Monday is when I start a new week of pregnancy. Before the diagnosis, I would send Trey a text every Monday morning saying “Happy ____ weeks. I quit after the diagnosis due to fear of the unknown and being scared to get excited about pregnancy. Not knowing what another week might bring. Since Mondays mark the beginning of a new pregnancy week this is also the day I get all the e-mail and text alerts about how baby is developing. I stopped reading them for a couple of weeks because it would make me really sad and emotional. I have started reading them again and at the end of the day they give me hope and something to hold on to. At 16 weeks I read due to muscles forming in the ear canal that baby can start distinguishing voices. I plan on having a very long talk with this little guy/gal.

This Monday brought a wave of emotions on me out of nowhere. We had a fire drill at school and as I am standing outside waiting for the all clear I see another pregnant teacher and have to fight back the tears. I see pregnant people all the time and, I hate to admit it, but I get jealous and envious of them. They all look so happy. In my head I start doing a side by side comparison and I am the terrified one living every day in fear and they are the ones planning a nursery and registering for baby gifts. The rest of the day I felt like I was on the verge of a breakdown or panic attack; like I couldn’t breathe. I’m not always like this and I have actually been doing much better emotionally since sharing my story and realizing how many people we have out there praying for us, but today was a struggle.

I called Mom on my way home from work and just cried. All I kept saying was “I’m tired.” Physically I am fine. Physically this has been the easiest pregnancy ever. I had no morning sickness and, so far, no aches and pains. I’m just emotionally tired and spent. I started thinking though. If I am expecting this baby to be strong and fight and not give up, I must do the same. I can’t afford to waste time being sad or tired. I have tried to make it a habit that when I start to feel the emotions coming on or the anxiousness set in to stop and say a quick prayer. Worry about nothing; pray about everything.

We go for our next Dr. appointment on Wednesday where we will check on baby and, if everything is good, have the amnio done. I am always anxious before these appointments and very overwhelmed. I pray that we go and baby’s heartbeat is there and strong. I pray for a successful procedure and clear test results. Most of all, I pray for this stupid growth to be gone or shrinking.

Birthdays

Today I celebrated my 27^th birthday. Ask anyone who knows me and they will tell you that I have always made a big deal out of my birthdays. The countdown began on New Year’s Day and there were always weekly updates. These last few years have been quite different for me in terms of birthdays.

We started trying to get pregnant in January of 2011. I remember celebrating that birthday, the same went for New Year’s Eve, with a smile thinking “this time next year, we could have a baby or be pregnant!” There was a lot of excitement to that thought. New Year’s Eve and my birthday of 2012 came around with no baby and I was really sad. That year began with making appointments with a fertility specialist. Though I was feeling a little angry and bitter, there was slight excitement in that this could be our year. We were going to a specialist that had the tools, knowledge and capabilities to make this happen for us. I knew there could be a lot in store for us in 2012, but I had no idea it would be to the extent it was.

When we found out in November we were expecting, I was excited for New Year’s and my birthday because finally I would get to celebrate the year ahead with such excitement. We had planned to announce our pregnancy on New Year’s Eve which marked our 12^th week. We both had our separate way we were going to make it “Facebook official.” We got the CH diagnosis 4 days before, so that plan was put off.  I spent New Year’s emotional and we didn’t celebrate much. Neither one of us were really up to it. We decided to stay home; we had a gourmet meal of cereal and toast and then snuggled up in bed at 7pm to watch a movie.  

My birthday has now come and I am filled with more excitement then before. I put our story out there this last weekend and am overwhelmed with the response and the sense of relief I feel. In less than 24 hours, we had over 1,100 people view our story. It got me thinking that if even half, heck even a quarter of those people actually send up a prayer for us, how amazing that will be. I have gone back to read some of the comments people have posted on Facebook about our story and I cry with every single one. I am so grateful for the commitments of prayer total strangers have for us and our baby. These last few nights when praying for our little one, I have sent up a prayer thanking God for the courage to put our story out there and all of the amazing people who have read our story and given me so much hope. There has been a healing grace merely in the number of people our story has reached.

With this birthday I have made an important decision. Yes, it would be easy to crawl up into a ball and lay in bed, sulking in my pain, but I have decided to celebrate. I have decided to celebrate my journey over the last year (really the last couple of years). It’s been a tough road, but I really feel that it has made me a stronger woman, a stronger wife, and a stronger mother (It’s weird to refer to myself as a mother, but the truth is I became a mother the moment the stick changed colors). I have also decided to celebrate the fight, the fight for our baby’s birthday. I am promising this guy/gal to do everything I possibly can over the next 5 months or so to keep him/her safe and be able to celebrate his/her birthday in July.

The Whole Truth and Nothing But The Truth

I feel like I am at a point where I am ready to share my story. I feel like I have a dark cloud hanging over me and I want to put it all out there and ask for prayers and support from anyone willing to give it.

The best place to start a story is at the beginning. Trey and I got married back in August of 2010. I can’t imagine anyone else being more perfect for me than Trey. God really knew what he was doing when he brought us together by mere fate (that’s a story for another day). We always knew we wanted to have kids. That was something very important to both of us and we knew we didn’t want to wait long. We were in the process of changing insurance, so as soon as the new insurance kicked in in January of 2011 we got off the pill and were officially “trying.” Deep down I always knew getting pregnant was not going to be easy for us. I have always had interesting female health issues, but I never could have imagined our journey would be what it has been.

After three months of not starting a cycle on my own, I went in to the doctor to discuss this and for my annual well woman’s exam. The doctor recommended an ultrasound to check things out and figure out what exactly is going on. At that time, I was diagnosed with a condition known as Poly Cystic Ovary Syndrome (PCOS). Instead of my eggs releasing from my ovaries (ovulation) they were attaching to my ovary making it difficult for ovulation to ever occur. I immediately was put on medicine and advised to lose weight. I was not crazy about losing the weight. I have always struggled with weight issues, but obesity is a side effect of PCOS. The doctor told me for some women losing the weight was enough to jump start ovulation. I put myself on a low calorie diet and stayed very dedicated. I have never dieted so strictly in my life. The thing that kept me going was the thought that this is what I needed to get my baby. The doctor tried to let nature play its course. By my next doctor’s appointment I was down over 20 pounds. He was shocked, but proud. I still was not having my cycle on my own. I was in his office almost once a month for medicine to make me start so we could try again that month. By June of 2011, the doctor started me on the fertility drug Clomid in the hopes that this would bring on ovulation so we knew when it would be baby making time. I was on this medicine for a span of 6 months or so and after increasing the dosage 4 different times, we were still not getting anywhere. My cycles were still not coming on their own and at that point we were referred to a fertility specialist.

We met with Dr. Krotz at The Advanced Fertility Center of Texas in the Spring of 2012 and began further testing. Trey’s test came back completely clear (which made him very proud) as did my blood work.  I underwent another ultrasound to check out my uterus in which they fill my uterus with saline and look around for anything that would cause issue. Those findings came back clear. I then underwent an HCG test… not so fun. Here they injected me with dye and then took x-rays to see how the fluid flowed through my fallopian tubes. The radiologist found a polyp (growth) on my uterus and sent the results back to our specialist. After he analyzed the results, we did a procedure where the Dr. would go in with a camera for a better look and if he found anything he could remove it right then. Sure enough there was a giant polyp flat against the wall of my uterus (that’s why it wasn’t detected in the first ultrasound).  He was able to remove it with no complications. No swimming for a week and a half which made our cruise all sorts of fun. Anyways, the good news was we were able to start with our treatment plan.

Our treatment plan consisted of fertility injections for about a week and at the end we would have an IUI (intrauterine insemination). When on the injections, I had to go to the Dr. every two days for blood work and an ultrasound to check on my follicles. We needed my follicles to be large enough to take our HSG shot to release the egg so that we could do the procedure. Appointment after appointment we would go in and my follicles were nowhere near where they needed to be. We extended our shots by 9 days and my follicles actually started to get smaller. We had to abandon that cycle all together and try again next month. It was hard and devastating. We had spent so much time, energy and money and I felt like we didn’t even get a chance. The next month roles around and what do you know, my cycle doesn’t start on its own. I go back in for an ultrasound and there is a giant cyst on my ovary that is preventing my cycle from starting. We decide to remove it that day, and since I didn’t have anyone there with me to drive me home, I wasn’t given much in terms of a numbing agent. The cyst was drained, they even showed it to me when they were done, yuck, and we were able to try round 2. This time we upped our dosage of fertility injections. When we went in for our ultrasounds every 2 days our results were much better. Our first ultrasound showed my follicles at a size larger than we had ever gotten to the last time. We extended our shots a couple of days just to get more of the follicles where they needed to be to increase our odds of the IUI being successful. On October 22^, 2012 we were able to go in for the actual procedure. It was a good day and I felt like we were finally getting somewhere. The procedure itself took no time at all and now the waiting game began. We weren’t going to be able to go in for a blood test to check for pregnancy for a couple of weeks. While we were playing the waiting game, my ovaries decided they weren’t quite done being difficult. We were to church one night and I started to not feel well. I collapsed at church, but after a while was fine. We called the doctor and he wanted to see me first thing the next morning. He performed an ultrasound and knew immediately what was going on. He diagnosed me with Ovarian Hyperstimulation Syndrome (OHSS).  My ovaries swelled up and my abdomen took in fluid. Dehydration is the main side effect which caused the fainting at church.  I was in a lot of pain for about a week before the symptoms started to go away. Trey was leaving to go to Dallas for work on a Sunday and my blood test wasn’t until Monday. We decided to take a home pregnancy test because I wanted us to find out together. I took it that morning before church and woke Trey up to me shaking in the bathroom holding a positive test.

We were excited, but scared at the same time. We were being cautiously optimistic because we knew the first trimester statistics.

We had our first ultrasound the day before Thanksgiving in which we were 6w+3d. We couldn’t see anything, but an occasional flutter on the screen which we found out was the heartbeat.

 (6w+3d)

We had another appointment a week later where everything looked good. Baby was growing quickly.

(7w+3d)

We went back to the fertility specialist at 9 weeks for our last ultrasound before graduating and moving back to the regular OBGYN.  

(9w ?d)

We had slowly started to become more and more excited with every successful doctor’s appointment. Just after Christmas, 12/27/12, we had our first regular OB appointment at 11w +3d and were feeling good. We were just days away from ending our first trimester and being in what many call the “safe zone.” Little did we know, our world was about to be completely turned upside down.

The doctor came in to discuss our pregnancy and ultrasounds. We went through a bunch of standard questions and discussed pregnancy nutrition, exercise, etc. When I thought the appointment was almost over and we had made it she told us she found a problem with the baby in our ultrasound. There was a large growth on the back of the babies neck associated with a condition known as Cystic Hygroma. My mind blurred out and I wasn’t grasping much of what she said after that point. We were referred to Texas Children’s and she advised us not to go home and Google anything and just wait until our appointment with Texas Children’s. The following week, 01/03/13, we went in for an ultrasound and to speak with a genetics counselor. The ultrasound went ok. We saw our baby kicking and moving around like crazy. The tech kept trying to get the baby to flip so she could get images of the other side and our stubborn child was not going to budge. The doctor analyzed the results and when he came in to speak with us confirmed the Cystic Hygroma. Here is where we got all the scary statistics. I don’t remember all the exact numbers, so I am going to generalize. In about 50% of CH cases the baby has a genetic disorder. A large number of babies are lost during pregnancy and even if the baby makes it to term, the chance of fetal demise after birth is still high.  With or without genetic disorders, the baby has a high chance of having a heart defect, another side effect of CH. I think when it is all said and done, we have less than a 20% chance of our baby making it. There aren’t any procedures that can be done in untero. The only options we have are to terminate or keep testing. We started talking about the tests we could do to find a cause (they assured us this was a complete fluke and had nothing to do with our fertility journey).  They told us that Cystic Hygromas occur in 1% of pregnancies.

We met with the genetics counselor about testing options. Our options at that point were to have a placenta biopsy where they go in and take a piece of the placenta and do a full chromosomal make up. It was risky and was going to be rather expensive. Our other option was a simple blood test that would test for 4 main genetic disorders, Downs, Turners and 2 others that I can’t recall. We talked about it and since the results of the tests weren’t going to change our minds about continuing with the pregnancy we decided to move forward with the blood test for now.  When discussing future tests the counselor kept saying IF you make it that far we can do this test or that test. I was really hung up on that IF. It was a reality that we could lose our baby literally any day.

We got the results of our blood test back and we were clear for those four disorders. Good news, but not great. Yes we tested clear for those disorders, but we still weren’t any closer to a cause and our odds did not improve at all.  She then said IF we make it to 16 weeks we can do an amniocentesis for further genetic testing and IF we make it to 20something weeks we can do a fetal echo to test for heart defects. We scheduled the amniocentesis for 01/30/13, but knew we didn’t want to wait that long to find out if our little one was still with us. By the time we would go for that appointment it will have been a month since the last ultrasound. We went for an ultrasound with our regular OB just to check on our baby. Our baby was there and had a strong heartbeat. All the measurements were spot on and other than the stupid growth, everything looked good. Now it’s only another week and a half until our next appointment.

(Baby is in good spirits, smiling at us, 14w+2d)

I don’t think I can even describe the feeling and emotions that we have been going through. When I think about all the scary numbers and statistics the only thing I can in vision is the sound of that beating heart and our baby moving all around on the ultrasound. I never imagined the love for a child being so strong this early, but I am completely in love with this baby and I feel completely helpless, like there is nothing I can do to protect my child. We have decided to try and put the scary numbers in the back of our minds and focus on the power of prayer. We know it was the power of prayer that got us pregnant in the first place, and we know that is only by a God-given miracle that our baby will make it through this. Every night before bed I pray for protection and healing for our sweet baby. We have been told that there are cases where the CH goes away and the pregnancy continues on completely normal.  There is no specific reason for why it goes away it just does. That is what I am praying for. We have so many people praying for us and fighting this battle with us. That’s all we are asking for. If you are a member of a church, prayer chain, etc. we want to be on the prayer list. This is the scariest thing we have ever been through and our trying to take things one day at a time and one appointment at a time. I know this has been quite a long post, but it’s the whole story. We are putting it all out there once and for all. I am using this blog to keep people informed, to get people to pray for our baby, but also to help me cope and get through this. I plan to update frequently about test results and appointments, but also just when I feel like I need to talk. Thank you for taking the time to read our story and feel free to pass it on to other prayer warriors, post it on Facebook or whatever you need to do to get people praying for a miracle for this baby.