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."

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!