– Our Story (vol. 1) –

4

July 27, 2016

We’ve been doing a lot of reading from the packets that were provided to us from our reproductive nurses . The packets are extremely overwhelming and cover the process of IVF, ICSI and other reproductive options, along with the avail IVF terms, should you  proceed with IVF. Hatching, sperm injection, options for unused eggs, sperm and embryo’s, testing, egg retrieval, transfer, OHSS ICSI, chromosomal testing. The risks associated with IVF were also covered at length in this packet, from minor injection site irritation all the way to ovarian cancer. It may seem odd, but cancer wasn’t the risk that scared me the most..it was the risk of IVF being the last resort, and being unsuccessful. I found myself feeling sick to my stomach when considering how much medication was involved. How was this going to make me feel; how was I going to function on a daily basis; how painful are the injections going to be; how is this going to affect my marriage? These were just a few of the questions that ran through my mind, thanks to this lovely packet.

-CHOOSE WISELY-

A note in our packet informed Rick and I to compile a list of individuals who we wanted to inform of our situation. These should be people who will know what you’re going through and will be in your corner to support you while you undergo the process of reproductive assistance. This portion of the packet stated to “choose your support group wisely”. I had a running list of individuals I wanted to include in our circle, as well as an idea of the response and reaction we were going to receive when we shared. I had imagined we would receive words of encouragement and support, as well as some heartfelt facial expressions and body language as we revealed that we were struggling to start our family.

Rick and I compiled a list of our parents, siblings, and a few additional family members and close friends. My mother-in-law (the most amazing woman in my life…thank you God) and her husband already knew that we had been trying for a year. We told Ginny and Dave first that we were going to have to turn to Conceptions for some assistance. My bond with my mother-in-law is so strong that I didn’t even need to tell her, she seemed to already know that of her three sons, we would be the special snowflakes that had a different experience than her other two sons.

We began sharing our news with each of the people on our list and inviting them to take part in our journey…some responses were wonderful, while others were heartbreaking. Here are a few of the responses we experienced that I documented in my journal

  • “he was visibly uncomfortable and wanted the conversation to end as soon as it started. We were met with a cheers of our beer glass and told that “everything will be great, it’s going to be fine; it’ll be great”. The conversation then shifted to a new topic of motorized vehicles. I was crushed. The compassion and expressions I had imagined never came, my eyes began to well up with tears. I smiled and began walking away to help the ladies inside. It was everything I had in me not to completely break down on that long walk away from a difficult conversation.”
  • “Rick began telling the background of us trying for a year, unsuccessfully, and that we were going to be turning to a specialist to help us get pregnant. My eyes were welling up with tears as I listened to him tell this story, then I turned to the faces who were receiving this news…they were smiling. Abruptly we were then met with a “Congratulations!!!” My mind began to race. This response is not one that I had even considered! My mind was saying, “We just told you that we can’t get pregnant, and your response is, congratulations?!?!?!?!?!
  • “I took her hand and explained how difficult the last several months had been for me, how it seemed like everyone I know was getting pregnant on a whim, how emotionally taxing it was to know that something about my body was restricting me from providing my husband with children, that I have good days and bad. She listened closely and understood every word I shared. She understood that this was not happy news, she could see that we were going to be facing an uphill battle full of risks, a war zone for my body to endure, as well as zero guarantee on our investment of time and money”
  • “so are you going to be turkey basted or something?”
  • “we received several calls from people in our circle multiple times a week asking questions, like “where are you now”, “what happens next?”
  • “we love you both and we are so sorry you’re having to go through this. We are here to support you in any way we can”

I now understood why the packet said “choose wisely”. In retrospect, I now understand that I cannot control others emotions or natural responses, even if they are hurtful. I can only control my own responses to situations, and unfortunately at the time, I was not able to connect my emotional self to my logical self. These people whom we invited to be a part of our support circle loved us very much, however, due to the fact that this was not a situation our family and friends had been faced with before, they didn’t know how to react during their initial response. Some people take uncomfortable situations and make a joke out of it, others may ask questions, and some may flee from the conversation. I experienced all, as I’m sure many reproductively challenged couples have, and will face.

-you’re not alone-

August 3, 2016

– PCOS –

IVF is the only option for us. After many blood draws, hormone scans, dye tests (which was excruciatingly painful) and ultrasounds, it was determined that I have PCOS, or polycystic ovarian syndrome. PCOS begins with an imbalance in hormones, namely the male hormones called androgens. 15% of the population are affected with PCOS, however it’s extremely difficult to diagnose, as a combination of symptoms are usually present all at once. Below are several symptoms which may indicate PCOS

  • Irregular periods – women with PCOS have high levels of male hormones, and the ovaries are not able to produce enough progesterone to regulate periods
  • Adult acne – this one plagued me for years…thank you hormones! Because there is such an imbalance in hormones, your body is overstimulated and reacts with acne
  • Hair growth in unlikely places – this is not just a few stray hairs growing in unsightly locations, this is growing hair on the chin, sideburns and upper lip (locations that women typically do not grow hair)
  • You can’t get pregnant – PCOS is a leading cause of infertility. When your body doesn’t create enough progesterone for a complete menstrual cycle, it causes undeveloped eggs to turn into cysts in your ovaries. The cysts then prevent healthy eggs from travelling down your fallopian tubes and into your uterus.  https://www.prevention.com/health/6-symptoms-of-polycystic-ovarian-syndrome/slide/4
  • You are pre-diabetic or have type 2 diabetes – Researchers are not yet clear on the link of insulin to PCOS just yet. However there is evidence of the body not being able to properly process insulin, and PCOS
  • Weight gain – if you have unexpectedly gained weight, specifically in the abdominal area, and you have a difficult time losing weight, it may be an indicator for PCOS. This is not a symptom that should be used for diagnosis, but certainly one that may be related to other symptoms for diagnosis

There isn’t a blanket treatment for women experiencing PCOS, so a treatment plan will be very personalized to the symptoms an individual is experiencing. In my case, very, very few of these symptoms related to me. I had a regular cycle, no unsightly hair growth, my body processed insulin properly, and I had no weight issues. I had a bit of acne in my adult years (although I was able to shake the acne years before trying to conceive)…my only real symptom was that I couldn’t get pregnant, and my ultrasound of my ovaries revealed cysts. I began taking a low dose of Synthroid, (a medication to regulate hypothyroidism), and we began discussing our plan of action with the staff at Conceptions.

I remember that IUI (intrauterine insemination) was suggested to us, however, once I got the diagnosis of PCOS, I began to do my research to find out if this was the best route for us. Upon familiarizing myself with the affects of PCOS, I discovered that the likelihood of IUI being successful was not positive. Due to the lack of progesterone, which led to eggs not maturing, therefore turning into cysts…there wouldn’t have been an egg waiting to meet the sperm introduced to my uterus through IUI. I met with our nurse to ask her if she agreed with my findings and she told us that we would probably have less than 1% chance of getting pregnant on our own, or through IUI. I had a choice here…I could either fall to pieces crying on the floor, or I could take charge and be empowered. I chose to find strength, take charge and accept that IVF was the path we were going down. This was our decision and I was going to be the director, the leader and the pillar of strength for my husband and I.

– CLASS IS IN SESSION –

August 3, 2016

Rick and I took our IVF class together last week to learn about the good, bad and the ugly related to IVF. We were going to learn how to administer the injections full of medication, as well as review the process at a high level. We arrived to the Littleton office at 8:15 that morning, 45 minutes early…the anticipation was like we were going to be starting our first day at a new job. Little did we know, this was going to be the most difficult job either of us had ever accepted. Nerves, jitters, excitement, fear, were just a few of the emotions we were experiencing that morning. We approached the front desk and gave them our $1,000 client care check. This was a fee that was not part of the IVF base cost, and one of many fees that we did not expect.

The nurses told us it was assigned seating as they escorted us to the training room in the back of the clinic. I silently wished that we would be seated up front, so I wouldn’t be distracted by the other class attendees. My wish was answered, as Rick and I found our name tags at the very front of the classroom on a wood desk to the left. People began to funnel into the classroom, and before I knew it there were about 20 people seated and waiting for the staff to come fill us in on what life is about to look like over the next few months. Curiosity took over while we were sitting in our chairs, and I began scanning the room. I found other women doing the same of their peers. One woman at the table next to us came equipped with a three-ring binder that was three inches thick. She was extremely organized, with tabs and dividers, handouts, a research section, as well as forms and loose paper. A gentleman next to us came by himself, he had a very old purple notebook that was full except for a couple of blank pages in the back. The couple behind us were giggling and talking the entire time, it was as if they were completely disconnected from the emotional aspect of the situation at hand…perhaps a survival tactic. It was one of those situations where you wonder what each persons story is, and how infertility has affected them. I began to think of questions like, “what have you had to go through? How has infertility affected you? How severe has your pain been?” I felt a sense of sorrow come over me, that a room filled with this many people, relatively the same age as Rick and I, and we were all struggling to start a family. How was this possible, and why was it happening?

Our teachers arrived moments later. They introduced themselves and explained that they would each be covering a portion of the IVF class. The first presenter was an adorable southern woman with short blonde hair. She was an embryologist at the Littleton office,  and she wore blue scrubs and blue shoe covers, which had to be worn in the lab every day. She presented a series of PowerPoint slides to assist the group in visually understanding the intricate and microscopic process of egg retrieval, as well as genetic testing, what cryopreservation is, and how it is done, as well as an overview of the embryo transfer process.

We moved on to the second portion of the IVF class. One of the IVF nurses began explaining the contact info as well as hours of operation of all locations that were available to us. She also covered risks that are associated with IVF, and told us that we would find some more detailed handouts on the risks in the packet we would receive. Two risks stuck out for me,

  1. The possibility of OHSS (ovarian hyperstimulation syndrom) occurring in my body. This was a side affect from the fertility medications, which resulted in bloating, pain in the ovaries and abdomen, sudden weight gain, nausea and vomiting. Our IVF nurse explained that people who have PCOS are more prone to this condition. I felt the color drop from my face in an instant. I began to worry that I may be up against more than I bargained for.
  2. “You could be cancelled”…these words sprang from the IVF nurses mouth while I was trying to process the OHSS risks. It was as though bombs kept dropping in the room. The nurse explained, that if your body does not respond to the medication, “you could be cancelled.” BOOM (a bomb dropped). “You will not know if you have healthy eggs until the retrieval day, and if you don’t, you could be cancelled”. BOOM (another bomb dropped). “If you have healthy eggs, we will then introduce the egg with the sperm, but there is no guarantee that your embryo’s will mature, and you could be cancelled.” (BOOM, BOOM, BOOM) I felt like I was under attack. I felt nauseous…

Rick must have known that I was overwhelmed and feeling sick to my stomach. He reached for my hand and squeezed. He held my hand for the remainder of our time in the class.

We had made it to the question and answer portion of the class. One woman raised her hand and began asking questions about the genetic testing available. She explained that she and her husband had some genetic disorders in their families and wanted to avoid conceiving a baby naturally at all costs. They would only consider having a child if they could perform genetic testing on the embryo to ensure they did not pass down the genetic disorders. Another woman raised her hand and had a question about assistance with OHSS. This woman began to open up and tell the class that she had been through IVF once already, without success, and unfortunately experienced OHSS. She chuckled softly and said that she was prepared this time if she had to endure OHSS again. She had to sleep sitting up, eat foods high in sodium, and drink Gatorade like it was her job…I made many mental notes about these tips. Another woman asked if she could have her blood draws done at a location closer to her house. She had apparently had to come from Colorado Springs.

In the last portion of the class, the IVF nurses trained us on how to administer the medication. We each received a kit with a needle and vile of medicine, that was filled with water for training purposes, and a round squishy pad. The nurses demonstrated how to pull the medication into the injection needle, then they explained that we would have to exchange the needle with a much smaller one. The first size was necessary to pull the medicine into the injection tube that was connected to the needle, however, the smaller size needle made it more bearable and less painful, once injected into the skin. I allowed Rick to take the lead on this, since we had a deal, “I take the drugs, you administer the drugs”. We then were allowed to practice injecting the needle into the squishy pad that resembled skin. The gentleman sitting at our table with us was practicing his injection moves, and I just remember feeling concern for his wife. He was sure to get slapped if he didn’t learn to incorporate a little tenderness into his move!

We left the class feeling overwhelmed, terrified and ready to begin this journey. We had hand fulls of packets to take home and read through. Many pages that needed to be signed by each of us, as well as a notary public. There were many challenges and decisions to be made.

– TO TEST, OR NOT TO TEST –

This is such a difficult question for so many of us. Do you proceed with all of the available genetic testing that your clinic offers, or do you forgo? You not only have the option of  getting yourself and your husband tested to find out if you are a carrier for genetic disorders, but you can also test your embryo’s to find out if they are healthy and disorder free. Each of us struggles with this aspect of IVF in our own way. For me I struggled to make the right decision with regards to my faith. I was being pulled in one direction telling me “you’re not supposed to have the option to choose for yourself”, I also would have thoughts of “playing God” and selecting my own destiny rather than having faith, and trusting that God knows what is best for me. Then I would be pulled in another direction where I felt that God wouldn’t give me the option of IVF if he didn’t support me in this. Another pull came from wanting to be a mother and knowing that I would love my children no matter what. Another pull came from my gut and my soul. I felt as though, if I was going to go through all of this to have a family, I want to give my children the best. I want to give my children quality of life, and not be selfish That may sound harsh, but by selfish, I mean that I didn’t want to have a baby and be irresponsible in any way. In my mind, it wouldn’t have been fair to have a child who would suffer, because of my own selfish desire to be a mother. So, we dove into the world of genetic testing.

Karyotype Testing

A karyotype is an organized profile of a person’s chromosomes. Two chromosomes specify sex, XX for female and XY for male. The rest are arranged in pairs, numbered 1 through 22, from largest to smallest. This arrangement helps scientists quickly identify chromosomal alterations that may result in a genetic disorder.

What do the doctors look for?

  • The karyotype test looks for missing, extra or abnormal positioning of chromosomes
  • These signs can be a marker for Down Syndrom, trisomy 18, sickle cell anemia, cystic fibrosis, Tay-Sachs, just to mention a few

How is this test done?

  • You or your spouse will elect to do a blood draw
    • only one of you needs to elect to do this test to begin with. If the initial test comes back negative, this indicates that the person tested does not have any missing, extra or abnormally positioned chromosomes
    • the second person only needs to have a blood draw and be tested if the first test came back indicating any additional, missing or abnormal results
      • the clinic will then be looking to see if both biological parents are a carrier for genetic disorders. This increases the likelihood of passing down a disorder to your embryo’s
  • The lab will send this off for testing and contact you with the results

Preimplantation Genetic Screening (PGS)

What is PGS?

This refers to a process of the embryologist’s retrieving one or more cells from an embryo created through in vitro fertilization, before it is transferred to the uterus. This process is extremely sensitive and done under a high power microscope in a lab. The cells that were removed are tested for chromosomal normalcy (no extra, missing or abnormally positioned chromosomes).

So what do you do…this is a decision that is unique to every couple and every woman. It requires a lot of consideration, time and soul searching to know what is best for you and your family. Follow your heart and your gut when it comes to this decision, and once you’ve made it, don’t look back.

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