Am I a hypocrite?

Ever since Mark Zuckerberg and countless other friends and celebrities have announced their struggle with miscarriages, pregnancy loss, and infertility I've felt empowered that I shared my story. I didn't announce I was expecting until I was 14 weeks. And I was one of those naive women who thought to myself "I made it to 12 weeks - I'm in the clear now! I can't wait to tell my family and friends." Never did I imagine that what would happen the follow week would a a harsh reality that I would be faced with.  After all I thought it was a simple blood test.

At the time I wasn't sure if I would share the truth about everything my husband and I went through that fateful week in May. But after some time went on we realized after several conversations we couldn't continue on living a lie. We had to be truthful and shed light on the tough decision we made for ourselves but also in the hope that others who might be faced with the same decision that they are not alone.

At the time I was very confident in sharing my story. Both of us received so much support from family and friends that helped us get through that tough time. In hindsight had I not shared that I was expecting, I doubt I would have had the love and support from so many people nor do I think I would have been as willing to share my story so openly. So although some have said to me, "It's too bad you just announced a week or so earlier." I am glad we did. Our little girl was sent lots of love although it wasn't in the human touch form.

Now as I am moving beyond the past and healing more everyday, I wonder to myself will I be as willing to share that we are expecting again. Do I want to be caught again "with my pants down" in the event that something happens again? Would I rather only have a few people know in that event or would I rather once again have my entire social network know and once again shower us with love and support? Will I offend someone who is also struggling with infertility and is jealous we were able to get pregnant again and they are still working on getting that second pink line for the first time?These questions cross my mind daily.

Of course, then I come across articles like this that make me want to cheer these women on. But here I am pondering whether I'll announce at all let alone at 12 weeks or sooner. Am I a hypocrite or what? Right now the jury is still out what I'll do if/when I am blessed with another pregnancy.

Year One in Reflection

Where did the last few months go? I feel like as soon as June hit time as flown by. I actually feel like the last 7 months since I started this blog have been years rather than months since so much has gone on. My husband and I recently celebrated our one year wedding anniversary last month. This was a perfect time to reflect on the things we’ve done together in the last year as well as look back on the challenges we’ve overcome together.

After our wedding we traveled to Disney World and Harry Potter world and realized we are too old for intense roller coasters. We had an enjoyable football season at the temporary playing location for our beloved alma mater. We took advantage of my work trip to Denver and got to experience the Rocky Mountains for the first time. We enjoyed the holidays together as a married couple and then traveled to the other side of the world to Australia. We survived two 12 hours plus plane rides and 24 hour travel days together. We explored three absolutely new cities together in a foreign country. 

Since the turn of the new year we've been on quite the roller coaster ride. We began our fertility journey and got really lucky with success on the first try. I think we all know what happened in May when we said goodbye to our little one without being able to say hello. After that we were able to get away to Florida for a holiday weekend with my family. Once we returned I had a cyst removed from my face that had been bothering me for months but I had been putting off. We also had a lot of work done around our house which kept us on our toes but also set us up for some great pool parties and sunsets this summer. 

Once I was finally cleared to do any activity again I decided to take full advantage of it. We gathered some friends and went to skyzone. I took advantage of being in LA for work and took a trip to Disneyland and rode all the rides. The 2015 All-Star Game was in our city and we did almost every fan event. We went on a scavenger hunt around the city for the All Star Mustaches. We spent a morning exploring All Star Fan Fest. Since the game month coincided with anniversary month we choose to exchange tickets for both the All Star Game and the Home Run Derby. After all the tickets were "paper", right? We also experienced the zip line that went through the entertainment district near the ball park. All Star week was quite the adventure and so exciting to be a part of. 

Now August is here and I can't believe that summer is almost over. Reflecting on the last year as a married couple (which might be my new year in review timeline vs. the new year) and specifically the last few months life has presented us with many challenges. We have been able to overcome those challenges and I think they've only made us stronger together. Yes, this is getting a little sappy but I really cannot imagine life any other way. I wish some of the circumstances had gone a little different but in the end we seem to be happy, healthy, and doing well. Some days are harder than others and some situations continue to challenge us. I know we will continue to carry on and we'll be ready to tackle that next bump in the road whenever we might hit one again. 

Controversial?

In order to even get pregnant with our angel baby we had to go through some fertility treatments which were obviously very successful as we got pregnant on the first try. Now that we are in the position of healing and determining what we want to do or need to do moving forward we went to meet with that miracle doctor to get his thoughts. I had actually called the doctor’s office a few days after the termination to let them know the news. The doctor himself called me later that day to send his condolences and reassure me if we needed him again for help he had no doubt I could get pregnant again relatively quickly. He said come back and let’s talk when you are ready.

So we arrive for our consultation. It was eerie to be back in the office once again with no baby in tow. Never did I think I would be back here so soon. Of course I thought once I had the baby I’d go visit and then potentially need to come back when we wanted to expand our family again but never did I think I would be back less than 3 months later in a totally different situation. We sit down with the doctor and he asks how we are doing, we say fine. He then replies with some condolences and a phrase I never thought I’d ever hear from a medical professional, “all you can say is f**k” in reference to receiving the news that the baby had trisomy 13. He goes on to explain there was nothing anyone could have done differently. It’s one of those situations where all you can do is say f**k! (This totally reminded me of the song "Totally F**ked" from Spring Awakening. If you haven't seen it please add it to you list and then look up the song). He then asks how we are doing. I explain I have been writing this blog and it has been a great release and healing technique. We then told him that we decided to share the details and actual story with the “world” although it might have been somewhat controversial. He replied, “Controversial? What do you mean the baby had maybe days, hours to live if it made it that far? The disorder is incompatible with life.  That’s not controversial at all.”  Hearing this, to be honest, was a breath of fresh air. Although, many cannot even fathom what they would have done in our situation we are satisfied with our decision. We have no regrets. We know this was the best decision for us. We couldn’t control what cards we were dealt. It does no good to ask why and dwell on the reality we were in. We had to keep moving forward.

I always knew I choose this doctor for his honestly and straight to the point answers but at that moment I knew he was the right choice to help us get the family we desired so badly.  He was straight forward and no bull. He gave us some advice moving forward. I’m sure many are wondering when we will start trying again to get pregnant and right now I don’t think I’m going to share those journey details via my blog. I plan to continue to write them but will delay publishing the post for some time. Maybe it’ll be once we are pregnant again or maybe sooner I’m not quite sure yet. There is a lot of unknown ahead of us and for now I think I’m going to keep the majority of it private as it is a stressful and sensitive process. I will continue to write my thoughts in the meantime. I have saved a lot of articles over the past few months and have a lot of thoughts I’d like to share from my point of view. Stay tuned!

The Risk Moving Forward

The final amniocentesis results finally came back about 10 days following the FISH results. These unfortunately left us with additional unknown and several questions. For the final amnio results the cells were left to grow for 7 – 10 days and then they were to be tested to determine the exact karyotype of the baby’s chromosomes. Well 10 days later the cells never grew and therefore we ended up with inconclusive results. We obviously felt once again like the exception rather than the rule but our genetic counselor proceeded to tell us that this was something she’s seen in trisomy 13 before so although it’s rare it is common. I’m not sure how one can use rare and common in the same sentence but we went with it.  So now were left with the question of what type of trisomy 13 was it? Was it the genetically inherited type where for some reason either my husband or I had an extra piece of the 13^th chromosome attached to one of our chromosomes?  Or was it in fact a genetic fluke in that it was a random event and had a small chance of occurring again? And lastly was it full trisomy 13 or was it mosaic, which we’ll never truly know but odds are it was full trisomy 13?

We were left asking ourselves, what now? I had read a lot about what other genetic testing could be done in the event we found out we were indeed a carrier for something. This would involve going down the IVF route and doing pre-implantation genetic diagnosis (PGD) of the embryos before they inserted back into the mother for implantation. Which I’m sure if you have any idea how much IVF costs this only would increase that cost significantly as well as complications.

Luckily, we had great resources available to us that recommended we do parental chromosome analysis to determine if my husband or I have any chromosome anomalies. So after some fight and several conversations with my ob/gyn I was able to get us both a prescription to get this blood test performed. All we had to do was go to one of the hospitals labs to get it drawn. Now herein comes even more complications. Evidently the hospital doesn't run these tests very often so the first attempt to get the blood drawn was halted due to the staff not knowing how much blood to draw or the correct tube to use. After several phone conversations the following day we finally were able to get our genetic counselor to straighten out the test requirements with the lab.

My husband and I went back the following evening to get our blood drawn. Now anyone that knows my husband knows he does not do needles well. He knew we wasn't going to be able to give nor watch the fertility injections and he has a history of passing out with getting blood drawn. We made sure the lab staff knew his history and we made sure he was laying down during the procedure. Once his blood was drawn we made sure he sat in the chair for some time and after a few minutes he said he was feeling well and let me get my blood drawn. As soon as I was finished my husband said he was getting lightheaded so we immediately had him sit back down. Two minutes later he was passed out and went in and out of consciousness a few times. In my opinion one of the scariest things I’ve seen him go through before. I’d rather not see that again so I was hopeful that this was the last time either one of us would have to get blood drawn for quite some time.  

Two weeks later, we finally received the results. Both of our chromosome analyses were normal. We were not carriers for trisomy 13. This was quite the relief. Now the only chromosome we were concerned about what the 7^th chromosome. We still wanted to know whether I was a carrier for cystic fibrosis. This was supposed to be tested back in April but wasn't for some reason. Luckily, if I was not a carrier my husband would be spared of any needles so we were hoping for that based on the previous experiences. But as far as trisomy 13 we were now at a 1% chance of having trisomy 13 happening again in a future child. That 1% is significantly high based on the typical risk for other 29 year olds who are having children but we weren't scared. We knew we wanted a family and we were willing to go whatever necessary to get there this was just part of our journey. 

A Humbled Reflection on Sharing My Blog

It's been almost one week since sharing my blog. I would have to assume most who were going to read the blog have read it by now. And “wow” is the word that comes to mind when I think about all the support I’ve gotten after posting my story. I am truly humbled by the amount of people who have read it and been brave enough to send their love and support over a tough subject for many to think about let alone talk about.  Although, I know not everyone will agree with my decision I do believe that sharing my story has really helped my husband and I heal tremendously even in the few short days since I have posted the blog to social media. Never did I imagine so many people would actually click that link and then actually read the posts. I'd like to THANK every single one of you who have taken any amount of time out of your busy lives to read anything on my blog. 

Moving forward I plan to continue to post about life and the journey we have moving forward in our healing process. Hopefully, I have some more positive stories to share in the future. In fact, I know I will because my husband and I have been keeping positive thoughts for the future and we have continued to fill our life laughter, love, and fun times. 

My favorite Disney movie happens to also have my favorite quote to live by, 

"Keep Moving Forward."

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.

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.

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!