Always Knew Love

Many ask "how did you decide to choose what you did?" My husband and I have always been on the same page on when comes to choices that affect our life together. We knew our baby girl was given the diagonsis in which if she had made it to full term would have been very short and would have consisted of physical pain for her. We wanted a baby so badly but we knew what we had to do. We knew when we became parents at day one after conception we were responsible for the the welfare and protection of the life inside me. We decided to take on the lifetime of emotional pain ourselves so that our little one would not have to feel one moment of physical pain. Never did we imagine when we elected to get the screening test done we would make the decision to terminate but love is a powerful motivator and will make you bring great heartache upon ourself to spare a loved one from suffering. We feel we were given the opportunity to learn about our baby's condition in order to act upon it out of compassion and love. So that's what we did.  We ended a lifetime of suffering for our baby at 15 weeks and 5 days. Myself nor the baby felt anything. She was never touched my fear, she was never cold, never hungry, never alone and more importantly she always knew love.

Saying Goodbye without being able to say Hello

4:30 AM

Alarm goes off, shower, get dressed, no breakfast allowed today

5:00 AM

Get into car start drive to Louisville

6:00 AM

Stop at McDonald’s to use restroom and grab dear husband breakfast, still no breakfast for me

7:00 AM

Arrive in downtown Louisville. Drive around the block to locate the destination and scope out the protestors. I luckily am a great Googler and had found out that this clinic was very well known for large protests pretty much every day. There are already at least 10 protestors hanging outside of the clinic carrying very disturbing signs. We knew this was going to be quite the experience.

7:15 AM

Start to walk to the clinic. Stopped by the clinic escorts telling us the clinic will not open their doors until 7:30. It’s best to stay in our car to avoid having to listen to protestors scream at you while waiting to get inside. One of the escorts would come up to let us know when she saw the clinic staff arrive.

Waiting the 15 minutes seemed like an eternity. I was very anxious. I had step my upcoming day into four steps. And getting into the clinic past the protestors was step 1.

7:25 AM

Escort comes to get us from our car. We start out from the parking garage to the clinic front doors. As soon as we get down the stairs outside of the garage protestors are standing there waiting for us. They start to rattle off their propaganda, “We can help you. We have other options.” They said they have a facility nearby that can help us save our baby, etc. You get the idea. The escorts attempt to comfort us by saying we don’t have to listen to them and let us know that we almost to the front doors. This continues until we reach the front doors at the clinic where we are greeted by someone opening the door for the incoming patients.

7:30 AM

While waiting in line you can see the protestors through the tinted windows. I could not believe some of the chants or songs I heard. One patient was unlucky; she got followed by a rather intense protestor. He literally screamed in her face the entire way down the sidewalk until she reached the front door.

7:45 AM

Checked in and sitting the waiting room while the rest of the patients get registered.

8:00 AM

All patients are brought back into the facility alone. No friend, husband, family member is allowed back beyond the waiting room doors. We are told to sit in another room with chairs to wait to be called to for our procedures and then to get our lab work and ultrasound done.

8:15 AM

I am first to get my payment taken care of. The clinic director also proceeds to tell me that since I am here for a therapeutic termination that my husband can come back to sit with me until it is time for me to go into the procedure.  This might have been the best news of the day. I wouldn’t be alone sitting waiting and neither would my husband. After getting my payment taken care of, I then got my vitals taken, blood drawn, and ultrasound performed. I was absolutely dreading the ultrasound. I did not want to have to look. Luckily, there was not a screen other than the one for the ultrasound tech.

9:00 AM

My husband got to join me inside the clinic and in a private waiting room where we were separate from the other patients.

9:10 AM

We get to watch a video about the procedure. We then are taken into a counselor’s office to discuss any questions we had, the procedure, and to make sure I was making this choice myself and not anyone else was pressuring me to have this procedure performed.  We then went back to our waiting room until the doctor arrived.

9:45 AM

The doctor had arrived and I was taken back to a private room for to have the first part of the procedure completed. We were lucky to have found out the diagnosis as early as we did. I was just under 16 weeks and between 12 – 16 weeks the procedure was one day. After 16 weeks it turned into a two day procedure.

The doctor spoke to me for a few minutes. She first gave her sentiments that our baby had trisomy 13. She asked why we came traveled to Louisville. She was surprised to hear that there were not any facilities near where we lived. I told her I was glad to have a great ob/gyn practice that was although not able to perform the procedure themselves but were willing to help me do what I wanted and ultimately find this clinic for me.

She then explained the first part of the procedure which I had read a lot about online so I felt prepared. She inserted the laminaria into my cervix which are thin sticks made from a special seaweed material that widen as they absorb moisture from your body. This was probably the most physically painful part of the procedure. Immediately, I had some cramping and really felt uncomfortable. I then went back to waiting room. I was to keep the laminaria in for 2 hours before the second part of the procedure would occur. This was my step 2. Step 2 done and two more to go.

10:00 AM

For the next hour and a half my husband and I hung out in one of the waiting rooms away from the rest of the patients. On this particular day there were around 15 women there getting similar procedures to terminate their pregnancy.  Some were very early on in their pregnancy and would be given medical abortions to stop their pregnancy. And the others were there for surgical abortions which would require surgery including general anesthesia. During this downtime, my husband tried to catch a cat nap while listening to music. I watched a movie to help pass the time and keep my mind from thinking about what was really going on and the pain I was in. I couldn’t bear to cry in the clinic. I put on my strong face and carried that with me for the rest of the day.

11:40 AM

It was time for other patients and me to be moved downstairs to surgery prep. At this time my husband was to go back to the original waiting room with the other people who were there accompanying their respective patients. We all went down stairs and were told to change into gowns. We were given lockers for our belongings. Then we told to move onto our hospital gurney.

Waiting in this cold room was quite a lonely experience and somber. There were 6 other women in the room awaiting their turn for surgery. We were first greeted by the doctor and then the anesthesiologist. We signed that we understood the risks involved with the anesthesia. Then one by one the nurse inserted an arterial catheter for and IV. A few of us including myself were given Pitocin via an IV to help the cervix dilate even more.

One by one were wheeled into the operation room with about 15 – 20 minutes between each patient from what I could estimate without any clock or watch. This was the hardest time for me. I was left with only my thoughts. Nothing to distract me: no noise, no talking, nothing to watch, not even a clock. I spent a majority of the time holding back tears and emotion as the room was so silent you could have heard a pin drop. I actually was so tired due to the lack of sleep over the past few days I kept drifting to sleep for a few seconds and awaking back up. 

12:30 PM

It was finally my turn. The nurse wheeled me into the operating room. I was assisted onto the table and my legs were placed in stirrups. My D&E procedure was ready to be performed. All of the proper tools that assisted the doctor had been put into perfect location and new sterile tools were being opened for me.  The anesthesist said she was going to hook me up to an IV that would make me sleepy. I replied that I was so tired I'm just going to close my eyes. Step three was complete and I was drifting off to sleep for the next ten minutes with the procedure was completed. 

12:50 PM

The next thing I remember was waking up in the recovery room. I vaguely remember being helped off the gurney into the chair in recovery. The only reason I recall that was because I remember the nurse telling my to hold my sanitary napkin in place. Now step four was upon me: get awake and stay awake so I could be released from recovery. I knew the best way I would come out of anesthesia was to talk based on previous experience. So I'm pretty sure I was asking all kinds of questions and might have been chatting with another patient in the room. I felt as if I drunk so who knows what I said. I also remember wanting to get the catheter out of my arm. I was told several times I had to keep it in my arm until I was changed. 

The nurse handed me  Advil and ginger ale once I seemed awake enough. I refused the Advil as I cannot swallow pills but gladly accepted the ginger ale. I was so thirty as I hadn't had more than a few ounces of water upon waking up which at this time was seven hours ago. I was also slightly hungry but the only thing they had to offer was crackers and being gluten free I just asked for more ginger ale. 

1:00 PM

I'm not entirely sure how long I was in recovery but it couldn't have been long. Before I knew it I was being asked to use the restroom and then change back into my clothes. This was quite the experience as their was a step back unit the locker room. I am pretty sure I almost fell over getting back in there. The feeling of having a fun night out of drinking was still present. I successfully changed back into my clothes and then was told to come back to the recovery room so remove the catheter. It felt so great to have this removed. After that the nurse said I seemed so alert, from talking of course, that I was ready to be released. She went over the post-op instructions and gave me a prescription for antibiotics. I was then escorted back up to my husband and we were free to leave. 

1:20 PM 

After a big hug, we were on our way back to our car. The protestors were gone and the city was quiet. We arrived back into the car I immediately took some pain medicine along with a snack and large bottle of water. We were on our   two hour drive back home together and I was no longer pregnant. 

Heartbreaking Decisions

So what now, you might ask? Well the preliminary amnio results were due back 3 days after the test. The lab would do a FISH test. FISH stands for fluorescent in situ hybridization. FISH testing is a relatively new cytogenetic technique that allows a cytogeneticist to determine how many copies of a particular chromosome are present without having to go through all of the steps involved in producing a karyotype. For example, FISH analysis can quickly tell you how many number 13 chromosomes are present, but it cannot tell you anything about the structure of those chromosomes. In our case that is what we needed to know. Was there an excess of the 13^th chromosome in the baby’s DNA. The final results which would be the full karyotype of the chromosome including the structure would not be available for at least 7 -10 days as the cells had to be left to grow.

In the meantime we discussed our options and made our plan A., plan B., etc. Now this is where our story gets to the point of major decision that no one should ever have to go through. Do you carry the baby to full term and hope it can live for a few days, weeks, or months? Or do you terminate the pregnancy to save the baby from suffering if it does make it to full term?

 I think my husband and I made this decision on what we would do depending on the results we were given after the testing the first night after learning about the possibility of the trisomy 13. We had gone into the original screening test saying we wanted to know if there were any problems ahead of time so we could plan accordingly. We bot are engineers who are very scientific and know that advanced in modern medicine have been huge. We determined we would be part of the population that utilizes the advanced testing regardless whether we were “at risk” for anything or not. I t was covered by insurance it was a “no brainer” to us. Never did we imagine we would be one of those couples that were given heartbreaking information that would make us choose.  

We knew that carrying a trisomy 13 baby to full term was already not likely. We knew even more that bringing a trisomy 13 baby into the world was not going to be much of a life for the baby. We didn’t want to bring our child into this world just to suffer. We wanted this baby so badly and we had gone through a lot to even get to this point. But we knew we had to follow our heart if we did receive the some of the worst news that any parent could possibly receive.

Ultrasound and Amnio

At this point we have had an ultrasound at 6 weeks, 8 weeks, 10 weeks, 12 weeks, 13 weeks and 4 days, and now at 15 weeks and 2 days. This baby might be the most photographed baby in the world. What we never expected was that this day in our life that everything would change.

The ultrasound first started with the technician looking at all aspects of the baby. If she saw anything alarming, she didn’t share with us .The doctor then came in started to navigate her way around the baby as well. She noticed something did not look right with the nose. To the naked eye it appeared very large. I my mind it looked almost like a rounded bird beck. I knew something wasn’t right. The doctor decided to perform a 3D ultrasound to get a better look.

The result of the 3D ultrasound was one of the two images I wish I could get out of my mind. Looking at the baby from the front profile was quite disturbing. Something was absolutely not right with the nose and mouth. It very well could have been a cleft palate but it was too hard to really determine exactly what it was at this point in time. I this point my heart started to race. I knew things were not looking great for the diagnosis.

At this point we definitely wanted to proceed with the amnio. As the doctor and ultrasound tech prepared for the test I was just ready to have this procedure over. I knew it was going to consist of a large needle being inserted into my stomach and probably some intense cramping. I was nervous but knew this was something I would have to just get through. Just like everything else thus far in our journey of creating a family.

I had decided that I did not want to see anything that went on during the procedure so I placed the scarf I wore that day over my face and just tried to control my breathing to help myself relax. My husband has prior experience with fainting after giving blood and was unable to watch me give myself shots during fertility treatments so he decided to turn his chair towards the corner until the procedure was over.

The second image I think I will vividly recall for a lifetime is what we saw after the procedure was done. The doctor needed to monitor the baby’s heart rate and movement to make sure nothing occurred during the procedure. While this was happening we got a closer look of the hands. They were not clenched but there indeed were extra fingers on each hand. In between the intense cramping from the procedure and the new found soft marker that was discovered I was not feeling well. As soon as the doctor felt the room I fell to tears. I was in so much pain physically and emotionally.  We knew the possibility of the baby having trisomy 13 was unfortunately very likely at this point.

Once we were done at the hospital I was very glad my husband and I had driven together. I don’t think I would have been able to drive home solo with the pain I was in. We hadn’t eaten any lunch so we stopped to get some food on the way home. We spent the rest of the night hanging out and resting. I of course did a lot of googling and thinking about all the what ifs moving forward. 

Learning things we never thought we would before.

At the genetic counselor’s office we were explained the science of trisomies and the calculated risk for our situation. We originally thought that the screening test meant there was a pretty much 100% chance we had a baby with trisomy 13. She explained that in fact based on my age upon conception, the age I would be at delivery, and the gestational age of the baby our risk was actually only about 1 in 6 or 14%. Hearing this statistic helped us a bit but we knew we wouldn’t be for sure until we went through the level II ultrasound and then the amniocentesis.

The level II ultrasound, which most pregnant women have done around week 20, would be a very detailed ultrasound that looks at the anatomy of the baby. At this time I was only 15 weeks and 2 days but we were hopeful the ultrasound would be able to confirm or deny any of the trisomy 13 soft markers such as polydactyl (extra fingers or toes), clenched hands, clubbed feet, cleft lip/palate, heart defects, enlarged kidneys, and neural tube defects.

The amniocentesis (amnio) is prenatal test where a small amount of the amniotic fluid is removed for testing. The sample of amniotic fluid is removed through a fine needle inserted into the uterus through the abdomen, under ultrasound guidance. The fluid is then sent to a laboratory for a full chromosome analysis. The amnio can be done between after 15 weeks. The accuracy is about 99.4%. There is a small risk that an amniocentesis could cause a miscarriage (less than 1%, or approximately 1 in 200 to 1 in 400). But at this point the risk of having the amnio done was less than the risk of us having a baby with a trisomy so we knew we had to go through with the testing. 

We decided to proceed with the ultrasound and then based on those results we would then get the amnio done following the ultrasound. 

What is a trisomy?

Trisomy 13, also called Patau syndrome, is a chromosomal condition associated with severe intellectual disability and physical abnormalities in many parts of the body. Individuals with trisomy 13 often have heart defects, brain or spinal cord abnormalities, very small or poorly developed eyes (microphthalmia), extra fingers or toes, an opening in the lip (a cleft lip) with or without an opening in the roof of the mouth (a cleft palate), and weak muscle tone (hypotonia). Due to the presence of several life-threatening medical problems, many infants with trisomy 13 die within their first days or weeks of life. Only five percent to 10 percent of children with this condition live past their first year. Trisomy 13 occurs in about 1 in 16,000 newborns.

Trisomy means three copies of one chromosome. In this case, for trisomy 13, it would have been three copies of the 13^th chromosome. Trisomies can occur with any chromosome, but often result in miscarriage, rather than live birth. For example, Trisomy 16 is the most common trisomy in human pregnancies, occurring in more than 1% of pregnancies; only those pregnancies, in which some normal cells occur in addition to the trisomic cells, or mosaic trisomy 16, survive. This condition, however, usually results in spontaneous miscarriage in the first trimester. The most common trisomies are trisomy 21 (Down syndrome), trisomy 18 (Edwards syndrome), trisomy 13 (Patau syndrome), trisomy 9, trisomy 8, and trisomy 22.

Most organisms that reproduce sexually have pairs of chromosomes in each cell, with one chromosome inherited from each parent.  Humans have 46 chromosomes (i.e. 23 pairs of chromosomes). Half from the mother and half from the father. If the chromosome pairs fail to separate properly during cell division, the egg or sperm may end up with a second copy of one of the chromosomes.

It's just a simple blood test, they said.....

We finally got the test results back from the genetic screening blood test I took about 10 days prior. I knew on this particular Monday we would most likely be getting a phone call with the test results. I had been anxious to find out the gender of the baby but never did I really put any thought into the real reason behind the test. It was to screen for the potential for any genetic disorders that might be present in the baby.

The test was called the Progenity test. It is a non-invasive prenatal test that can determine with a high degree of accuracy whether your baby may have certain genetic disorders, such as Down syndrome, Trisomy 13, and Trisomy 18. The test requires only a blood draw, and is safe for mother and baby. During pregnancy, some of the baby’s DNA crosses the placenta into the mother’s bloodstream. DNA is the blueprint of life—it holds all of the genetic information needed for our bodies to function. DNA carries this genetic information on chromosomes. Healthy humans have 23 pairs of chromosomes. Any more or less can lead to problems. The test screens for the most common chromosomal abnormalities, which can cause serious birth defects, intellectual disability, or other problems in the baby. These disorders are not typically inherited. Instead, they are usually caused by a random error during formation of the egg or sperm, or during the earliest stages of the baby’s development.

Around 4 pm that day I get a call from the doctor who I spoke with before the test was administered. I can remember the words clearly: “Your baby tested positive for Trisomy 13.” I immediately started to google the condition while the doctor was still talking. I had previously briefly looked over what the test screened for but I really didn’t know what the conditions were besides Down syndrome. The doctor proceeded to say that she was going to recommend me to meet with the genetic counselor at the hospital and I needed to call to set up an appointment.  She said I would then have the opportunity to get a Level II ultrasound completed to further evaluate the screening results by looking at the baby. I then would have the ability to get an amniocentesis performed to get a diagnostic of the baby’s chromosomes. The doctor then said you know sometimes there are false positives sometimes on these tests but they were rare. I was stunned but knew I had to call my husband immediately to tell him the news.

After calling my husband, I decided I wasn’t going to get anything else done at work so I went home. Once home, my husband and I sat on the couch, talked, and sobbed together. We did some research about the condition and talked about the what ifs. We talked about the next appointment and what we wanted to accomplish. We decided we wanted to get the amniocentesis completed at that appointment. We determined the risks of the amniocentesis were less than the risk of not getting confirmation of what the baby really had or didn’t have.  Never did we ever imagine we would be going through these discussions. After all we just wanted a “healthy baby” but more and more we started to realize that may not be the reality we were dealt.

Announcement to the World!

At 14 weeks I finally started to feel better. Several foods started to sound and taste better again. I was finally in the second trimester. I also started to let myself get a little more excited about the expectation of a baby come this fall. At 14 weeks, we finally announced the arrival of baby to the rest of the world including social media. We had done a photo shoot at our alumna mater’s football stadium that was currently under construction. We tagged along with the fact that the stadium and our baby were going to be “completed” in fall 2015. We posted the photo that we had taken on campus with a baby onesie with the school’s mascot on it on social media. We photoshopped the words “Baby Under Construction: Estimated Completion Fall 2015.” We could not have been excited to share this news with our friends and family. We had held this news a secret except to immediate family and close friends until we were knew we were in the clear, aka the second trimester.

The peach revealing some personality at 13 weeks!

I went in for a routine appointment to get screened for genetic disorders. My husband and I decided we would rather know ahead of time whether our child had the risk for a genetic disorder prior to birth so we could be prepared. So we elected to get the screening done. We were told all it would be was an ultrasound. I sat down with the ultrasound tech and got the warm gel applied to my tummy to start the screening. Well low and behold our baby was currently hanging on its tummy vs. its back where it needed to be for the measurements to be taken. The tech tried to jiggle the area to get the baby to flip. Well this morning the baby decided to be a little difficult and not move. It must have been comfy and personally I don’t blame it. I love lying on my stomach although that is not an option currently.

She said they give the baby three tried to flip around. She told me to wait 10 minute in the waiting room and we’d try again. I figured maybe if I’d empty my bladder the baby might have some room to move around so I went to the bathroom in hopes that might help. The second round proved that the baby was able to move around better now but was still lying on its side vs. back. Once again no luck in moving the baby.

After this try, I decided to walk around outside the office in hopes that might help. I also did a little jumping around praying anything would help. During the third ultrasound the baby had indeed moved onto its back but it was more upright than lying down and this still was not the right position. I guess after the second fail the tech had spoken to someone else in the office about the options for me. As I was already 13 weeks and 4 days and the test was only able to be done until 13 weeks and 6 days so rescheduling the appointment wasn’t an option. Since I had not started at this office until the week prior I really missed the key window of opportunity.  She mentioned that there was a new test available that just collected the mother’s blood and was able to pull the babies blood from the maternal blood and examine the chromosomes. The only caveat was that this test was not yet implemented as an option in this office. They had not talked to all the doctors about the test yet.  

Luckily, the staff was willing to talk to the head doctor about my situation as they had planned to start offering the test in the next week or so anyhow. They were able to fit me in to be counselled about the test my one of the OB doctors and also were able to secure the right paperwork and testing equipment for me to get the test completed today. So shortly after filing out some paperwork I spoke to the doctor confirmed that the test was just blood and would have a minimal cost. It would test for all genetic disorders and also happened to be a little more accurate. Oh and it also would tell us the gender of the baby if we elected to find out. The nurse came in after speaking to the doctor and drew my blood and I was on my merry way about 90 minutes after I first arrived at the office. Since was obviously not how I had intended to spend my morning but I was glad a solution as found and everything worked out. We already have realized this child is going to give us a run for our money and is already taking some of our personalities that we express at times! And who knows we might be finding out the gender sooner than expected but that will be a secret that we will not be telling anytime soon! 

I ran and jumped rope for the first time in 4 months!

I ran! I ran for the first time since the beginning of my journey 4 months ago and I could not be happier! I also did double unders! Never did I imagine I’d be so excited to run and jump rope. Even up the dreaded hill that we have from the main street to our street and house. I was really curious on the heart rate when running and I’m happy to report at my normal pace I’m right under 15-155bpm.

First run was about 2 miles at a 9:30 – 10 min pace and I’m perfectly okay with that performance. That is all I need! I cannot wait to get some more running in around my neighborhood ! 

12.5 weeks

At 12.5 weeks we had our first encounter with our new ob/gyn practice. We choose the practice due to a recommendation by our RE doctor and the proximity of the office to the hospital we intended to deliver at. There are five doctors at this practice so we will see all five during the time before delivery since when I deliver the doctor we have will depend on who is on call that day.

The first appointment was good but a little longer than anticipated. Up until this point I had been able to avoid the dreading pee in the cup and regular well women checks. Well this practice was not letting me slip away from that anymore. First we had an ultrasound and got to see our little plum. (We have a name each week based on the size of the baby according to the bump app). It seemed to be either sucking its thumb or trying to hide its face as its hands were constantly moving to and from the face. We also got to hear the heartbeat which once again was pretty cool.

We next met with one of the doctors. She asked if I had any questions and of course the first thing on my mind was her suggestions on exercise and activity. She said she recommends women to do no more than what they were doing prior to pregnancy. So I told her my history and that I had been limiting myself to working up to 140bpm and avoiding running and jumping. I asked if I could raise that heart rate a little more and add some running and jumping into my routine. She said if you feel well enough to do so, go for it. The main goal was to not over exhaust yourself and make sure you can breathe during the exercise.

I decided that I would self-impose a heartbeat limit on myself of 160bpm or so. I knew this would be far enough on the heart rate scale for me to really get in some better exercise that didn’t make me want to go to sleep as one of my friends stated. I was so excited to be able to run and jump rope again. I was getting really sick of rowing all the time at such a slow pace!

Overall, the appointment went well. I was sent off with a bag full of paperwork and information to read. I of course got through the material fairly quickly and realized this is what normal women get earlier on rather than having to rely on Google to answer pregnancy questions. 

. 

Graduation day at 10 weeks!

When we were 10.5 weeks we went in for the anticipated last appointment with the RE doctor. We officially graduated onto the regular ob/gyn office! We got to see our little nugget on the big screen and was even waving. We also got to hear the heartbeat for the first time which was pretty cool. After our ultrasound and a clean bill of health from the doctor we go our parting gift – pregnancy magazines and form to fill out once the baby is born so they know what we had and the name. And of course a big congratulations and good luck from all the staff. Although we will miss the great staff at the RE office we could not be more happy to moving onto the next step of our baby journey. As I said when we left, our baby graduated before it even made it out of the womb!  

8.5 weeks!

We were told to schedule another ultrasound at 8.5 weeks and we were excited to see the progress on our baby. We went and the nurse said everything looked great. The baby was measuring good and we were able to see the heart rate flutter. The baby was most definitely bigger!

Our RE doctor asked us if we had chosen a normal ob/gyn because he wanted us to schedule an appointment 4 weeks from now which would put us at 12.5 weeks. He wanted to see us back in 2 weeks. The hope was that at this 10.5 week appointment we would graduate from his office and be able to complete the pregnancy at the ob/gyn's office we have chosen. At this time we were very excited and also knew we still had several weeks to go until we were out of the first trimester. All we could do was continue to wish for the best. 

I personally at this point in time started feeling pretty crappy. After a dose of the stomach bug for the second time this year I ended up with a pretty much all day mild sickness. I didn't feel nauseous but I did feel blah and struggled to eat several foods. I ate what I could and decided that for the time being my paleo lifestyle was going to have to be but on hold to make sure I was actually eating. But I want to maintain a gluten free diet as I knew gluten would just make matters worse. So I discovered a full line of several gluten free products and so far have helped to keep me well fed, almost a little too fed in fact. But I know I can't get wrapped up in gaining weight quite yet. As I know the extra pounds had to have helped me get pregnant in the first place even if I had to go and buy new pants and bras at week 8! 

My New BFF

After my 6 week ultrasound I was permission to increase my activity but I had to keep heart rate under 140bpm. So I had to invest in a heart rate monitor. I quickly realized that the 140 bpm wasn't very high when doing any form of cardio or moderately lifting at high reps. I had to learn how to breathe slower and find the best ways my body recovers so I could continue with working out.

Anyone who's don't CrossFit knows in a metcon the goal is usually to go as fast as possible. Well know with my new limits I was focused more on quality vs quantity and/or speed. I actually felt like I spent more time waiting for my heart rate to decrease than I did working out at times but I knew I was still doing my body good. I also knew this was the safest way to keep my baby safe and healthy in the womb. So embraced the new challenge and realized something was absolutely better than nothing! 

My new BFF! 

Six Week Ultrasound

We were super excited for the first ultrasound. I knew at this point being pregnant would feel a little more real versus a figment of my imagination.

We did get to see our little embryo and the nurse was able to see a flutter of a heartbeat. When we talked to the doctor he said everything looked great. I was also now able to get back into some working out. I was still restricted on any impact movements but I could now do some moderate weightlifting and rowing. This was fantastic news although I was given a restriction on keeping my heart rate under 140 bpm. I knew this was pretty low but it was better than nothing! 

We were told to schedule another ultrasound at 8.5 weeks. Hopefully at this point we could see a heartbeat. We also knew the baby would be much bigger than the what we saw at 6 weeks! 

Second Test Results

My second blood test results came back great! My hcg levels had increased from 638 to 1400s in 48 hours! This was great news! We were then set up with an ultrasound for two weeks later when I would be 6 weeks pregnant. We would then be able to see our little offspring on and possibly even see a heartbeat.

At this point everything was really starting to settle in that this was real and we were really on the road to being parents in 9 short months! :) 

D-Day!

Once the 16th day after the IUI came I almost couldn't sleep I was so excited and nervous. I think I woke up about three times throughout the night and finally at 5:30 AM got up and tested. I can recall being very nervous by having to use the bathroom so bad I didn't have any stage fright.

I was given a generic pregnancy test from my RE so it had only a line to look for. I dipped the stick appropriately and waited the recommended time to see if the extra line would appear. Immediately I could see two faint lines which meant I was pregnant. I told my husband to come see what he thought as I wasn't sure if I was seeing things out of belief or if the lines were real. He said he couldn't tell but it looked like there was two lines. 

We decided to run over the grocery store and pick up another test just to be sure. So at 5:45 AM we ran over to buy another test. I bought one that was a little more explicit on the results; a cross vs. just lines. So once again I took the pee on a stick test twice and quickly the cross showed up! At this point, I was really excited and also in disbelief. Was I really this lucky to get pregnant the first time going through fertility treatments?! 

Of course right at 7 AM when my doctors office opened I called with the news and curiosity on what to do next! I had to go right away and get a blood test taken. I went to a local lab and got my blood tested before work so I could get the results back that afternoon. 

D-Day continued

Of course after the first pee tests and after talking to the doctors office we updated the people that knew today was the day for us to test. A group message for my family, a test to my husband's mom, and a few text messages later in the day to those few girlfriends who knew what I was going through. Everyone was so excited but knew we still had awhile to  go before we were in the clear and could really share the news!

I got the first blood test results back around 2 PM (beta was 638) that day and immediately scheduled my follow up test two days later. This second blood test would measure the levels of hcg. These levels should double every 48-72 hours while pregnant and continue to increase until the second trimester. This test would show whether a healthy pregnancy was developing. 

Two Week Wait: Week Two

The second week was a little less eventful but we had plenty of activities going on that kept our mind off the unknown. I did however have to go into the doctor’s office one week after the IUI to check my progesterone levels. This was a short and sweet appointment and only had to leave a little blood behind to be tested. The results really weren't going to tell us anything except whether my body was producing enough progesterone in the event I was indeed becoming pregnant. 

I wasn't allowed to test until 16 days after the IUI. Most people are told to test after 14 days but I guess since they weren't entirely sure when I would have ovulated they rather you be safe than sorry with a false negative. So I knew the closer I got to that date the more likely I would see blood in the result I was no pregnant so naturally I was checking very closely every time I went to the bathroom. By the time I made it through Monday with no hint of not being pregnant I felt a little better and slightly hopeful but knew I still had one more day to make it through and I had no idea how my body would react to anything since I have not had a period in several years. 

Two Week Wait: Week One

The dreaded two week wait plus two days was upon us. I knew this time would be hard and I of course asked many of my friends who had been through this time on advice. Some said to just try to stay busy, and one said she researched baby stuff. I personally knew putting the cart before the horse wouldn't work for me. Heck, after dating for several years I never really started planning our wedding until after the proposal was complete. So I tried to stay busy and tried to stay as active as I could by doing yoga and walking.

Unfortunately, the two weeks were quite eventful. I ended up coming down with major tooth pain and having to get a root canal done at an emergency dentist. This is obviously not ideal in my current situation but I didn't know what else to do. The pain was so bad and nothing would work to ease it. So I went into the office knowing that the procedure was okay for someone who was expecting although most doctors recommend not having these types of procedures during the first trimester if at all possible. I figured I would classify this procedure in the category of a mother not knowing she was pregnant and drinking a lot before the first missed day of her period. And I had to get this done; the pain was the worst pain ever!

After the procedure I had a lot of pain due to the procedure although it was way less than before. I had started taking Advil but shortly realized that Tylenol was the better choice in my current situation. Opps, three days of Advil, sorry potential future child! 

Monitored Closely

After the first four days of injections I was brought back to the doctor's office to be monitored for progress. An ultrasound was performed to see how well my ovaries were simulating on the medication. The first ultrasound didn't show much but it did show that the medicine was doing its job which was to start growing a follicle. After the first monitoring appointment I was sent back home with another three days of injection protocol and a follow up appointment in a few days.

At the second appointment, the stimulation results seemed to be very good. I had one follicle that was measuring around 18.5mm and it was expected to grow at least 2 mm a day until ovulation. At this time we pretty much knew that unless another follicle happened to grow in the next few days or that my egg when released happened to split our chances for multiples was very slim. This was a relief and also sadness at the same time as we thought having twins would have been neat but we were also just happy that the process was working and we were on the right track. We also figured having one kid at a time was probably the better route!

 I was given instructions on the next few days of protocol which included a few more days of the hCG hormones and then an ovidrel shot that would make me ovulate. Due to the results of my coitus test, the decision was made to perform an IUI the day following the ovidrel shot. This would give us the best chances on getting pregnant this round. So although it wasn’t the most glamorous way to make a baby we knew it was the best way to get to the end result. So Monday morning after the ovidrel shot I traveled into the RE office and the IUI was performed. I had to hang out in the office and relax for about 10 minutes following the procedure then was on my way to work with instructions to go about my day normally.

At this time I knew something was happening in my body. I was feeling very bloated and full in the abdomen region. I had cramping and subtle pain every once in a while and I knew that this was a good sign although it was rather uncomfortable. I actually almost feel like I felt ovulation occur in my body but who knows. I knew things were happening like they should so I tried my best to stay positive and not think about it too much.  We had 16 long days ahead of us to get through until we’d find out whether this cycle was successful or not.  

Brave

Ever since I can remember I was always the one strived to put on a brave and strong face for anything that was thrown to me in life. I'm sure this wasn't always the case but as I grew up that was the way I was taught to react. I'm not sure if is an oldest child trait or not but either way I'm sure it was something I was taught by my father. He would always put me in situations I did not feel comfortable in such as meeting people I didn't know, answering the company phone, and calling businesses or people for things he needed taken care of. And of course he acted the same way. I do not ever recall seeing my father cry and he always wore a brave face.

This lesson transferred into my personal as well as professional life. Personally, I'm the one who rarely cries when hurt or in sad or happy situations, hides any emotion related to being apprehensive or nervous, and over all wearing a tough skin.  So now in the infertility situation I found myself in I tried to carry that brave face into all of my doctors appointments and procedures. I entered them all with confidence and the realization that I was ready to accept whatever the medical professionals had to say. I went to pretty much all of these appointments solo and no offense to my amazing husband but that was the way I preferred it. It was easier to be brave alone then with someone by my side.

This all made perfect sense as I reflected on the first time I performed by injection alone. I escaped from a party we were having in our house upstairs to do the injection alone and all by myself. The original plan was for my mom to do the injection again but I had been given some strong encouragement from a friend that I could probably do it on my own and that brave persona I have came out strong and I was ready to give it a try. So I went up to the master bath, got everything ready, and went for it! Of course my heart was beating and I was shaking my the time I was done but I did it. I did it on the first time and on the first try and had no issues. I was pretty proud of myself at this time. And I was also glad that I had gained by independence back. I was going to be able to do the injections myself and make it through the next few weeks without having to rely on someone else to administer the medication. This was a huge relief moving forward!

           Here's my injection goodies!

....and we're off!

My first step in this process was to first do another progesterone challenge. I then was told to order my prescription medicine for when we would begin simulating my ovaries with FSH and LH to help me have a cycle. Unfortunately, neither my prescriptions nor any infertility treatments were covered by my insurance so all of our costs after diagnoses were out of pocket. Because of this we opted to find the cheapest route for the prescription medicine. The doctor was able to send me to a common website where a lot of his patients bought prescriptions from overseas in the UK.   So I ordered the very expensive medication from this website and realized there was no turning back now!

This time on progesterone I took a different type of medicine in hopes that my period would appear. Ten days later nothing happened, no aunt flow. So I called the doctor they said to come in for an ultrasound to check everything out. My husband and I went to the doctor’s appointment. The doctor said everything looked good and that the reason I didn't have a period was due to the condition I had. He said it was time to start me on the hCG (human chorionic gonadotropin) injections.  I was glad I had injection training earlier that week as I was instructed to start injections that night! At this time a lot of emotion came over me including excitement and apprehension. We were actually starting this journey and this was all becoming very real.

I knew the first injection would have to be done by my mother in order for me to get comfortable on how it would feel. I knew my husband giving me the injection was not an option as he was not good with needles what so ever. I was told to administer my medication between the hours of 6 – 10pm. I decided for the first one it would be easiest to get it out of the way and do it right at 6pm. So at 6pm we traveled over to my parents’ house with my medicine and needles.  I mixed the medicine and then changed the syringe needle. I numbed the upper hip area on my right side with an ice cube for the injection. My mom wiped off the area with an alcohol swap and performed the injection. This procedure was actually not as bad as I thought it might have been. It kind of stung as the medicine was injected but other than that I immediately walked around after the needle was removed in hope that I would get the muscle moving and relaxed again.  I then went on with the rest of my evening and didn't even notice what was done to me.

The first injection was down. I had three more days of the same procedures and then I was going back to the doctor for an ultrasound to see how I was responding to the medicine. And at this time I was absolutely limited on my activity. I was only walking and doing yoga as I didn't want anything to happen to my ovaries on accident and I figured I spent all this money on medicine and doctor appointments I better do everything in my power to ensure it works! 

The big hurdle

At this point I was struggling with what decision and direction to go. Do I try to solve this in a natural way or do I proceed with a reproductive endocrinologist? The reason for this was because I grew up in a household that used mostly alternative medicine since I was about ten years old. Western medicine and visits to a M.D. wasn't the norm in my family. My mother chose to take us to a chiropractor who was also a homeopathic doctor. In fact, I don't think I've even had an over the counter medicine in over 20 years except when I had my wisdom teeth out. I was really torn on whether I felt using heavy duty drugs to try to get pregnant. And I was really afraid of how particularly my mother would react. At this point she did not know of anything I was going through or any information about my condition.

I luckily was able to lean on my husband and the few friends who knew what was going on for advice. After one specific conversation with one of my best friends I was able to come to a conclusion. I was going to proceed with treatment and with the doctor who I had just met with. 

Now the hard part was ahead: tell my mother. Unfortunately, the timing of this decision was right before a major holiday and a big international delayed honeymoon with my husband. I went through around several ideas on how I would tell her including writing a letter but ultimately decided in person when I got back would be the best. 

I first told my sister, which is typically how I get a good feeling on how my parents will react on different things. I also knew my sister would support me in whatever decision I made. I then told my mom by stopping over her house for lunch. Except I had been battling a bad stomach bug all week so she ate I sat and hung out. After catching up since I hadn't seen her in a few weeks I finally broke down and told her what was going on. She of course was supportive but had lots of questions. Mostly questions of the risks involved and other things I've done to try to fix the issue which had included six months of several homeopathic methods which didn't seem to make one difference at all. I explained to her that I was tired of spinning my wheels and spending a bunch of money on natural treatments that didn't seem to be working at all. I was ready to try something different and I was willing to make the sacrifices I knew I had to in order to start a family. She thankfully understood my decision and even volunteered to attend the injection training the following week with my incase I needed help with administering the medicine. That was probably the best feeling in the world at that time. I felt so much better after having this hurdle out of the way and this talk off my chest. 

Giving up my favorite hobbies

I knew once I got pregnant I would have to change my lifestyle a bit but after everything I've learned I quickly realized my life would have to be changing a lot sooner. I knew if I decided to go through with the treatment my physical fitness routines would be drastically changing. So in order to really prepare myself for the changes regardless of the route I went I decided I'd give myself a deadline. My deadline was a CrossFit competition here locally and after the competition I would start making changes.

I pushed myself really hard to perform well at the competition. I called it my last hurrah and I sure did make a great last performance. I ended up placing 2nd overall in the scaled division. This was the icing on the cake but I knew that also meant my time had come. I would be giving up CrossFit and soccer. And of course running and anything else that could be high intensity. I was pretty much going to be limited to walking, elliptical, yoga and some light bodyweight exercises. 

I know it sounds so trivial to give up exercise and some might be rejoicing to stop exercise but for me it was a rough thought to overcome. As many people know exercise is a part of me. It's my de-stresser. It's my favorite hobby. It's been a big part of my life for the last few years. It's brought new opportunities and friends. I have a full set up of CrossFit equipment in my garage for gosh sake. I knew this was going to be a rough change but I also knew it would all be worth it in the end!

I wanted a family more than I wanted or needed CrossFit, soccer, running, or whatever I wasn't able to do. I would just find a way to love walking and yoga instead. I decided to look at this new adventure in a positive way. 

Second Opinion

After the experience at the first RE office I was open to looking into different doctors and their opinions about treatment for my condition. I luckily was able to find a doctor who a friend has used and been successful with twice. This doctor came highly recommended and also known as one of the best RE doctors in the city. I was able to get in for a consultation pretty quickly and was very interested in learning what he had to say.

My first meeting with this doctor was great. He was very honest and was straight to the point. He said yes, you do indeed have HA and explained that there was really only one pathway for me to get pregnant. He would immediately direct me to injectable medication. He stated that no other lower dose oral treatments would work for my condition. This immediately took my by surprise since that was not the impression I got with the first doctor.

He also mentioned that if I had come to him first he would not have recommended a MRI due to my medical history and also physical activity history as an athlete. He was absolutely positive something happened to my hormones and hypothalamus when I lost 20 pounds in spring of 2012. And that for some reason by body did not readjust over time nor when I gained some of the weight back.

He stated that even if I did gain weight back there was no guarantee that my cycle would come back either which was one of my questions. He said he actually did research on this topic as a fellow. He saw several ballerinas bounce back with a cycle after being injured and not able to dance but soccer players and runner were hit or miss. Some gained a cycle back and some didn't after reducing their amount of exercise. This made me feel a little better about the lifestyle I had accustomed to with following a clean, mostly paleo diet and doing CrossFit which I had thought was healthy and good for my health.

After my meeting I knew I now had some thinking and consideration to do as there were risks, sacrifices, and lots of money involved in the treatments that were recommended.

What is Hypothalamic Amenorrhea?

Hypothalamic Amenorrhea (HA) in brief is a condition in which menstruation stops for several months due to a problem involving the hypothalamus. Hormones obviously play a crucial role in every step of a successful pregnancy. The hypothalamus in the center of the brain controls reproduction. It produces the hormone, gonadotropin releasing hormone (GnRH). GnRH signals the production of other hormones needed for the egg to mature and for ovulation, such as follicle stimulating hormone (FSH) and after ovulation, progesterone luteinizing hormone (LH). In turn, FSH and LH signal the ovaries to produce estrogen. Estrogen thins the cervical mucus and, along with progesterone, prepares the uterus for a fertilized egg. Sometimes the hypothalamus stops producing GnRH, which in turn, will reduce the amount of other hormones produced (FSH, LH, and estrogen). Ovulation and menstruation stop, resulting in infertility.
(source: http://www.shadygrovefertility.com/hypothalamic-amenorrhea)

So this is what the science behind my condition and how my brain doesn't work correctly to produce the hormones needed to have a cycle. A fun fact about this condition is that only 5% of the population has this condition but it is treatable. So at least I have that going for me even if I am in the minority!

Who I am?

I'm from the grand city of Cincinnati and I'm proud of it. I love this city and don't plan on leaving anytime soon! I married my best friend in July 2014 after dating for over 8 years! We had a wedding with 250+ of our closest friends and family and began our journey as husband and wife on our honeymoon.

I personally have feel in love with health and fitness since college. I've adapted to the paleo lifestyle of eating and following CrossFit style workouts for quite some time. Both of these items have made a huge impact on my life and I thank the universe for bringing them into my life. It's changed how I go about my life, created friendships I would never have had before, and given me a rather expensive hobby! Most of my friends know I love CrossFit a lot but I try not to be one of those people who ONLY talk about CrossFit and nothing else. I do have a lot more to me than that!

I work for a large retail chain and love my job. I enjoy being involved in my community and am involved in several organizations around the city giving back to the community. I love to cook and I'm a terrible baker from scratch but I'm getting better! I enjoy doing projects around the house and watching a good movie time to time. I enjoy traveling to new places and have a goal to travel to all 50 US states. 

That's me in a nut shell! 

The back story....part 1

I should have started this blog about two months ago but here I am finally finding time and the courage to write this all down. My husband and I wanted to start a family shortly after we got married. we knew were going to wait until the beginning of the year due to some end of the year international travel.

Our story started when I finally started to investigate why I wasn't having a regular monthly cycle. And when I say not having one I'm not talking irregular I'm talking none, zero, zip. In fact, I hadn't had a natural one that wasn't induced by birth control for over two and a half years. So my ob-gyn recommended me to a reproductive endocrinologist (RE) to figure out what was going on. After some medical history, blood tests, and an MRI of the brain, it was confirmed I had hypothalamic amenorrhea. In a nut shell hypothalamic amenorrhea is a condition in which menstruation stops for several months due to a problem involving the hypothalamus but more on this later in another post.   

If I had known more and cared more to really find out what was wrong with my body I probably would have realized this is what I had awhile ago when I was given the progesterone challenge which I indeed failed. But at that time of my life that kids were the last thing I was worried about and I really didn't know what kind of trouble I might be in when it came to actually wanting to get pregnant. Reproductive health wasn't on my mind nor priority list and my ob-gyn didn't seem to think it really was a problem so I went on doing my thing. Hindsight 20/20 I should have further investigated but I didn't know what I didn't know. 

So that brings us to my diagnoses and what I needed to do to move forward with starting a family. The first RE I went to who ultimately first diagnosed me mentioned all the typical fertility methods and the progression he would recommend for me. First the most common clomid, then something stronger, then injectables if those two didn't work, and then of course the ultimate course of action IVF. Unfortunately, I did not mesh well with the doctor nor the medical staff at this RE office. After several frustrations trying to get through to talk to the medical staff I was on the search for possibly another RE. At this time is also when I started to share my condition with a select number of friends who I knew had been through some kind of fertility struggles and started to learn more. 

I cannot be more thankful for those friends that have been placed in my life in the last few years that were so willing to open up and share their experiences. It can be said that people come into your life for a specific reason although at the time you may not realize exactly why. I now 100% believe that saying and I cannot believe how lucky I've been to have those friends who have been so supportive since day 1 of my journey! 

Why I started this blog!

I'm not much of a blogger. I have had a few that I wrote a few entries in then forgot and got busy with other stuff but I always find it interesting to go back and read the old posts and remember things from my past. So I've decided to start a blog. I'm not sure which way it will go and how in depth I may or not get into my life. I just want to remember these memories for a long time and this is the best place for me to make sure that happens!