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.