So many emotions

I have so much joy for this pregnancy, for this little tiny human growing inside of me. 

but...

I also have an overwhelming set of other emotions that often overshadow the joy. 

thanks pregnancy loss

There is an overwhelmingly sense of fear that comes along with pregnancy after a loss(es).  This is not fear of the unknown.  Unfortunately this is fear of the known. Fear of what you have known has happened.  There is no moment not ridiculed by this fear; am I really pregnant? did I see something on the ultrasound? my boobs no longer hurt. where is my nausea? 

I have been lucky enough to have a great RE who has done a whole lot of hand holding, but the sense of fear is still there. It disappears on the day of an ultrasound appointment, but quickly returns. There is no constant reassurance that the baby you are now carrying has a heart that is still beating. However, there is a constant fear that once againyour body will fail you leaving you with flashbacks of past pregnancy loss(es). The anguish and pain that only a person whom has experienced can ever understand. The pain never disappears - it simply retreats and is resurrected during what is supposed to be one of the most joyous parts of one's life. 

Along with the fear comes extreme paranoia. Can I eat this? Can I eat that? Dissecting lab results. Listeria. Zika Virus.  You name it. You know how quickly your dreams for your unborn baby can be taken from you, and the terror you live in of making a 'mistake' and having those dreams ripped from you will drive you mad.  It will wreak havoc on your relationships and well being. 

I wish I had a miracle remedy in surviving the fear and paranoia, but I do not.  I have been merely surviving.  Thank goodness for pregnancy exhaustion, as I have noticed sleeping the fear and paranoia away is a quick fix. Although, this symptom has subsided (cue paranoia). I have been focusing on milestones. I have been thankful for each day.  I have a lot of hope for this baby, and I refuse to let the majority of this pregnancy be overshadowed with the fear of pregnancy past, but I am not going to sugar coat it - its hard. Harder than I had ever imagined. 

It's going to be a very long nine months, but I am going to fill it with lots and lots of hope. 

If this doesn't do it, I will wear shorts

I have three pairs of jeans to my name (that fit).  I was planning on purchasing new jeans this weekend, but quickly decided I should be able to fit into more of my jeans if I continue on this hardcore diet that Dr. Kwak Kim has suggested. 

So, if I don't lose, lose, lose - I will be wearing shorts in February in Chicago. Doesn't seem very pleasant, and I despise shorts. 

Dr. Kwak Kim believes my cytokines and PAI level will decrease with a significant amount of weight loss. 

So between that and the fact that I have three pairs of jeans to my name I think there is no better time than now to shed the 30 lbs I have gained over the last year. 

Here is my "plan"

• low carb - strictly following the PCOS diet 
• exercise at least 5 times per week - my Instagram followers have suggested lots of YouTube channels and DVDs.  My husband also introduced me to the big bulky exercise machine (Bow Flex) in my basement, and I plan on using that in addition to cardio. 
• meal planning - more work on the weekend, but less during the week!
• protein shakes - I hate them, but they are quick easy energy

So ya, I am hungry but I know the hard work and hunger will pay off.  

Kwak-Kim Follow Up Appointment

Le sigh. 

Here were her findings:

-Elevated homocysteine - It's 8.5, she wants it under 8.  She has switched my methylfolate to a prescription supplement of Metanx.

-Elevated PAI-1 activity - Mine is in the mid 20s, and she would like to see it in the low teens.  She has stressed the importance of a low carb diet and I should continue the Metformin.

-Elevated Natural Killer Cell activity - This was a bummer.  She recommended Prednisone and IVIG treatments.  She is recommending at least 5 which would be approximately 30K.  That my friends is not happening. You have to draw a line somewhere. She agreed she would still monitor me using Prednisone. I inquired of intralipids (much cheaper than IVIG) and she does not prescribe, but my doctor does.  

-Elevated EOSIN% (white blood cell) - Mine is a 6.5 and it should be between 1-2. This is bothering me.  It could be inflammation, but there has to be a cause. In most cases elevated EOSIN% means parasites, eczema

I am thinking our plan will be to follow her immune protocol minus the IVIG and inquire of my RE regarding prescribing intralipids. Luckily for me she does prescribe them and worked at SHER for a bit, so she does believe in immune protocols.  

From what I understand I do not have the NKC's that effect implantation, but I do have the activity that causes later miscarriages and issues with the placenta causing IGUR and 2nd trimester miscarriages. 

She also suggested transferring 2 embryos instead of 1.  I found this surprising considering the other issues we are working with. 

My AMH, which has never been tested is a 1.95 which she said is okay. I did not test positive for any auto immune disorders. I also did not test positive for any other thrombophilias.  My Vitamin D levels are finally in an okay range, and I will drop my dose to 3,000 units and 2,000 units when pregnant.  

She believes that the PAI and homocysteine can be in acceptable ranges with a low carb diet and Metanx in two cycles.  So she would be comfortable with a transfer occurring in March. 

She wants another ultrasound and endometrial biopsy done 5-7 days after this month's ovulation. 

My plan - meet with my RE to discuss Dr. Kwak-Kim's findings, inquire of her thoughts on the intralipids and then having the ultrasound and endometrial biopsy done by Dr. Kwak-Kim. 

Again, its just a lot. 

34

My 34th birthday was this past weekend, and I was pretty quiet about it.  Even more quiet about it than usual. I have never been a birthday princess, per se. If you are, more power to you. I have been this way since my 18th birthday. I vividly remember crying because I was turning 18. 

Issue? Perhaps Definitely. 

Anyhow, this birthday was much more difficult than birthdays of the past. I couldn't help but remember the way I spent my last birthday. I remember it clear as day.  

I fell asleep on the couch; in my coat and scarf waiting for a friend to pick me up for massages and lunch.  

The afternoon was delightful but I was exhausted. I started to then blame the exhaustion on the massage. 

I mustered up enough energy after massages and lunch to get ready for dinner with my husband at Sushisamba.  We got about a mile from our house and I requested we stay in and order take out.  

Little did I know, but I had *hoped* that I was pregnant.  Of course, this was the main goal but I did not want to get mine or my husband's hopes up just yet.  I shrugged it off as holiday exhaustion.   

At this point, I was counting down the days until I could pee on a stick. I found out I was pregnant three days later.  

The week of Christmas 2014 was without a doubt the happiest Christmas week of my life. 

The excitement I had to tell my husband, gathering cards to tell my sister-in law and mother-in-law and just the overwhelming joy that I had knowing that next Christmas we would be a family of three. 

We know how well that turned out. 

I would be lying if I said I am not hurting this Christmas but I am also "okay".  I am trying to live in the moment and hold on to the hope I have for next Christmas, but its not easy.  Not easy at all. I have my moments. 

I broke down in tears on the way to work knowing that it was this morning where I would test on a dollar cheapie and see a faint positive. It took everything for me to hold it in and not tell my husband. I planned to tell him later that evening after testing again. 

Later today, I would run to Walmart for a First Response and take it upon arriving home from work.  I was so ridiculously anxious for my husband to return home, to share the news using our "bootleg" elf on the shelf holding the positive pregnancy test. I will never forget his excitement and joy. 

I am a ball of mixed feelings.  Not wanting to relive the past, but feeling the need to. I guess you can say the reliving of the moments of the past, just happen.  Right now, I am letting them come in and letting them fade away.  

My one birthday wish is that this year is the last year we shall celebrate as a twosome. 

What is PAI-1?

PAI-1 (PIE) is a gene located on chromosome 7.

PAI-1 gene mutations inhibit fibrinolysis which is the process that degrades blood clots, but also plays a large role in other functions such as ovulation, wound healing, inflammation, etc.

A person can have a normal PAI-1 (5G/5G) or a mutated heterozygous (4G/5G) or a mutated homozygous (4G/4G).  When the gene is mutated blood clots do not break down as they should. The most serious mutation is the 4G/4G, which leads to significantly increased PAI-1 activity resulting in decreased fibrinolysis leading to thrombosis.

Got that?

The PAI-1 (4G/4G) mutation is also linked to a higher concentration of PAI-1 levels in the body. Increased levels of PAI-1 have been linked to a number of conditions including thrombosis, diabetes, pregnancy loss, obesity, coronary heart disease and liver disease.

The PAI-1 mutation, especially the 4G/4G mutation has been linked to issues with pregnancy and infertility such as implantation issues, clots in the placenta or cord and IGUR.  You can read more about the implications of the PAI-1 mutation and infertility/pregnancy issues here.

According to Dr. Kwak-Kim, PAI mutations and MTHFR mutations often come hand in hand especially in PCOS patients which are heavily concentrated in the infertility population.

You can read more about how Dr. Kwak-Kim has begun treating my PAI-1 (4G/4G) here. My future treatment will depend on my PAI-1 level.

Feel free to reach out to me, if you have any questions. I know finding information regarding PAI-1 is not easy!

Kwak-Kim Appointment

My appointment with Dr. Kwak-Kim was yesterday.  I can give you a couple of tips right off  the bat:

1)  Her wait time to get an appointment is around 3 months, and at this point is when they tell you that you have to fast for 12 hours prior to your appointment, drink 32 oz of water and not be on your menses.  By the time my appointment came around, I forgot all of this and called to inquire of any pre-appointment requirements.

2)  If you google "Dr. Kwak-Kim address" you will come across the address of Rosalind Franklin University. This is where we wound up first!  You want the address of the Reproductive Medicine Center.

3)  Be prepared to be there for about 3.5 to 4 hours - if your significant other accompanies you, he will not be able to accompany you until it is time for your Dr. Kwak-Kim consult which is the last portion of your appointment.

The appointment started off with the usual handing over your ID and insurance card.  My appointment began at 7:30 and I was promptly seen by ultrasound at 7:30.

He did an external ultrasound with a full bladder and then after emptying my bladder came a very detailed internal ultrasound.  He was very thorough and described his findings.

His findings:

• Poor blood flow to uterus 
• Good blood flow to ovaries
• Ovaries twice as big as they should be 
• Ridiculously thin lining for Day 10 (3.6)
• Small uterine fibroid 

I then waited a bit and went over to see the nurse practitioner.  I was ready to disrobe and the assistant stopped me. I only had to disrobe from the waist up! First time for everything.  She performed a physical exam and felt my thyroid could use an ultrasound.  Went back to the ultrasound tech and there were no abnormal findings with my thyroid. 

Then came blood work - I had about 17 vials of blood taken, and I have already had a lot of testing done.  So ya, lots of blood. Thank goodness my weak veins cooperated. 

We then waited about 30 minutes to see Dr. Kwak-Kim. At this point, my husband described it as travelling up this tall mountain to see this esteemed doctor.  Yep, it felt exactly that way.  We had already been there three hours before finally seeing "THE doctor". 

She is one intelligent woman.  She can write upside down for goodness sake. 

She was most concerned with my homozygous PAI mutation.  I plan on giving PAI a blog post of its own.  As of right now, she wants to start me on Metformin, even though none of my tests came back with insulin resistance.  She believes the tests will show my PAI level elevated, so wanted to get started tackling that issue ASAP.  She also wants me to follow a strict low carbohydrate diet. In essence, being homozygous PAI means my PAI levels are most likely elevated and Metformin has been used in cases to lower them.  My genetic makeup (PAI mutation) makes my body hold onto carbohydrates more than the average person - leading to insulin resistance, diabetes etc.  In her words, "You can eat the same plate of pasta as the woman next to you, but you will gain 3 lbs and the other woman will not gain an ounce." Oh, yes. Yes, indeed. 

She was also concerned about the poor blood flow to my uterus. She recommended 400iu of Vitamin E and continued baby aspirin right now.  She said that the blood thinning protocol will be tackled once my other blood tests come back.  

She also wants to keep my methylfolate dosage and B vitamins the same for right now in regards to MTHFR.  She will adjust if needed, after receiving my blood test results back. 

She believes my enlarged ovaries and thin lining are caused by my body pretty much "shutting down" after this last egg retrieval. It's very evident I had mild OHSS. She does not anticipate ovulation any time soon.  This makes complete and total sense after my last ridiculously long cycle after my last egg retrieval.  I hope she is right, and my body bounces back.  In the meantime, no heavy lifting, cartwheels or trampoline action.

She is not concerned with the fibroid, as its tiny and not causing me any issues.

I was ridiculously anxious before this appointment, and let me tell you it all fizzled away after meeting with the wonderful staff of Dr. Kwak-Kim's office and herself. 

I am glad I made the appointment, and look forward to hearing her plan of action regarding her findings.  

A Day of Prayer and Remembrance

October 15th is Pregnancy and Infant Loss Remembrance Day 

If you are a regular reader, family member or friend you know I speak very openly about our losses and will continue to do so. 

In the process of grieving my losses, I have met many others who have experienced their own losses (miscarriages and infant losses). These women are some of the strongest women I have ever met.  I am so thankful for these "strangers" who supported me at my darkest moments, who encouraged me and give me hope.  These women prayed for me when I had no words to pray for myself.  

It is today that I not only pray for our lost sons, but also these ladies and their lost sons and/or daughters.  

“A wife who loses a husband is called a widow. A husband who loses a wife is called a widower. A child who loses his parents is called an orphan. There is no word for a parent who loses a child. That’s how awful the loss is.”

― Jay Neugeboren, An Orphan's Tale

What Is In My Head

I feel like my hands are tied behind my back, and I hate it. 

So, I research and research and research some more!

I decided to make an appointment with Dr. Kwak-Kim. Well, I am in the process of receiving an appointment. I got the ball rolling last week by sending all of my records and waiting for them to approve my request for an appointment. I was notified this week of a more in-depth health questionnaire that I had to fill out and am now waiting for the call back with an appointment. She is booked into December, and I am really hoping to get into her before 2015 because of tax and insurance reasons (gotta squeeze that medical tax deduction this year)

Dr. Kwak-Kim specializes in recurrent pregnancy loss.  She has patients that literally fly to see her, and seeing she is practically in my backyard it would be foolish of me to not make an effort to see her in regards to her thoughts on my RPL panel results. I of course, have done much more research and have read through my records more than a hundred times and there are some specific things that need to be addressed by a specialist in this field - not my RE and not a regular hematologist. 

A few things that have my head spinning include the pathology reports of both losses have language of clotted blood and fibrin.  I also remember my perinatologist telling us that the placenta with our first loss was extremely small.  These can be related to blood clotting.  

I have found specific people online who have my exact mutations (PAI-1 Homozygous, HPA1 Homozygous and MTHFR Compound Heterozygous) and that have seen Dr. Kwak-Kim who put them on 40mg of Lovenox when TTC and 80mg of Lovenox when pregnant. These doses are not the recommended smallest dose that the hematologist recommended. The PAI-1 can also cause insulin resistance. However, with all tests I have had to date I do not have insulin resistance, but who knows! There is also a specific test she runs regarding the level of PAI-1 in your blood. This is one test I have not had done. 

As of right this second, we are going through with a third cycle of IVF.  My mind changes by the minute. I have a follow-up with our RE next week to discuss how we plan to move forward. I have a couple of creative ways that I would like to present to her and hear her thoughts on.

If you have seen Dr. Kwak-Kim, please feel free to share your experience with me. I would deeply appreciate it. 

Not Just a Date

I had been dreading this week since our loss on February 9th.  I know how raw an estimated due date of a loss is.  I still breakdown in random fits of grief - anger, sadness and anxiety from our first loss which was over 5 years ago.  

The truth is we have an entire spare bedroom full of miscellaneous baby stuff. I have been pregnant a total of 32 weeks in my lifetime. It pains me to even look at the door let alone step inside. The room where a baby should be sleeping.

The dates are forever etched into my brain - 3/1/2011 (first loss date), 7/11/2010 (first due date), 12/23/2014 (positive pregnancy test), 2/9/15 (second loss date), 8/27/2015 (second due date)

These dates will forever bring sadness and anxiety.  Even the seasons affect me. I will never forget how I told my husband we were pregnant.  I will once again pull that elf out of its box this year and my eyes are guaranteed to well with tears. Last Halloween, Thanksgiving and Christmas were the last holidays we were to spend as a twosome.  

I wish I could tell you what I have learned from our losses or the purpose of them, but I cant. 

6 Days on the Board

I had my first monitoring appointment yesterday and drum roll... the Lupron and BCP did not over suppress me which I have been worried sick about.  

I had a few follicles between 10-12, and my med dosage was not increased. I will most likely have retrieval the end of next week.  

I found out my IVF nurse is also an IVF patient. She explained that her first cycle was Antagonist and her second was Lupron. She responded much better to the Lupron cycle. Lets hope I am the same, mmmkay? I can then forgive the horrendous side effects.  She then asked if her new trainee could be at my next monitoring appointment.  My response, "You know what they say... one's company, two's a crowd and three's a party."

At this point, all I can do is laugh.

This has been a rough cycle. The Lupron side effects, a sick pup and my due date for my most recent pregnancy loss quickly approaching its a lot for me to emotionally handle. My heart is heavy and saying my heart is fragile is an understatement. 

As difficult as it is, I am trying my best to stay positive for the future while grieving the past. 

What We Wish You Knew

I have been very open regarding our baby making struggles with the hopes of spreading awareness. I have also hoped that my willingness to be so open would develop an understanding to those close to me. An answer to my tears, fears and anxiety. I wanted to compile a few tid-bits of what others wish their family and friends knew regarding their own fertility struggles.  Once you have an idea of what someone is going through it makes things so much easier to understand.

• Infertility has a tendency to take over your life.  There is no woman on a bigger mission than a woman trying to conceive. Whether you are at the beginning of your journey and obsessing over your cycle and peeing on every stick you can get your hands or going through treatments where your life is controlled by your IVF/IUI calender and RE's recommended bedtime.

• It's an emotional rollercoaster with so many ups and downs.  The whole journey is a journey into the unknown.   

• We could do without the unsolicited advice.  There is no need to share your list of reasons why living childless is awesome or mention adoption because there are plenty of children in this world looking for parents. Just dont.

• It's okay to ask questions. Those struggling with infertility are some of the strongest women I know. It is better to ask questions than to assume. People will share what they are comfortable sharing.

• Holidays are often brutal. It doesnt matter what the holiday - they can all be triggers. Do your best to respect boundaries without judgment and with compassion.

• The majority of insurance companies do not cover infertility treatments. In fact, they are looked upon as "elected procedures" because ya know infertility treatments are just so similar to breast implants. The financial strain of infertility is just as real as the emotional strain.

I jumped on Instagram to ask for other's opinions on what they with their family and friends knew regarding their infertility struggles and/or ART (assistant reproductive technology).  Here are a few...

• That it is okay to just say "good luck", I am here to listen and I am sorry.  We are not looking for advice, just support. (ttc_baby_r)
• That it really is *that* hard.  So many people, yes even family seem to think we overreact, that it cant hurt that much.  It does.  (audreyandmyangels & Blog)
• The expense is one of the hardest parts, so support me emotionaly and be respectful of what I am going through, but also dont judge me when I can't go out or take a trip.  It adds additional stress that I don't need. (icsibittybabydreams)

According to Resolve, infertlity is defined as the inability to conceive or carry a pregnancy to term after 12 months of trying.  Infertility is a disease that affects 10% of the population. 

What do you wish the other 90% of the population knew?

46, XY & 46, XX

We received our karyotypes back and they are both normal. This is surprisingly good news, please do not let me steer you the wrong way, but we are also back at not having a definite answer or "bad luck".

With the information we have right now the explanation could be poor egg quality/spindle issues leading to chromosomal abnormal embryos.

We know much more information then when we first started this journey and the decision truly lies in "putting all of our eggs in one basket" and continuing with the plan of IVF/PGS to significantly lower the chances of another miscarriage.

I am meeting with our RE tomorrow morning to discuss her professional opinion and a Day 3 ultrasound. We will then go from there. As of right now, I am leaning towards continuing through with our decision to pursue IVF/PGS. Honestly, I am unsure if I can emotionally/physically endure another loss and lowering our elevated risk of miscarriage by finding a chromosomal normal embryo sounds ideal, albeit expensive. I have scoured the internet for advice from others who have been in my position and weighed the pros and cons. My husband and I have had numerous conversations with him worrying most about my health and supporting my final decision.  At this point, a decision needs to be made.  I need to have faith in that decision and not look back.

Will this roller coaster ride ever stop?

An Announcement

Up until recently I had little to no advice regarding dealing with pregnancy announcements when you are dealing with fertility issues of your own.  I have now lived it and fortunately for me it was not something the person giving the announcement took lightly but rather with care and sensitivity.

I have decided to be honest and open regarding this crazy rollercoaster we are on and in this circumstance it worked in my favor.  What we are going through is not a secret, and in its openness it creates friends and family who are supportive, compassionate and sensitive (for the most part - life isnt perfect and I will not pretend it is).

The gut reaction will be at the very least, discomfort – I am not going to lie.  Although, this discomfort has nothing to do with the announcement or the happiness you have for the other person.  It has everything to do with what you are longing for.  It brings up raw emotions from the past.  You are human and this is totally to be expected. A pregnancy announcement is an emotional trigger of a whirlwind of emotions for those struggling with infertility and recurrent pregnancy loss.

I personally felt genuine happiness but I also felt a heap load of other feelings. The theme goes on "its a lot".

I have realized one person's happiness  is not equal to extreme happiness in myself. This is human nature.  Does that make sense?  I was happy for the other person but that does not mean I was equally as happy as the other person and this is not purely due to my own fertility struggles. I don’t think anyone can feel the extreme happiness of another person as you are not the other person.  You would not hold others to these expectations, so why must you hold yourself to them?  I don’t think it’s fair to blame it all on one’s fertility struggles and it is unfair to set expectations like that for yourself.  You can feel happy and also feel other not so wonderful feelings. If you are lucky as I was, the person giving the news would totally understand this and have absolutely no expectations of your reaction.  This my friends is love and true friendship.

You follow?

It’s important to remember the courage it may have took your friend/family member to tell you the news.  They may not completely understand your journey, but they can offer you friendship and support.  As you can offer the same friendship and support in return.

Most importantly, do what you can – when you can with a focus on your comfort level. Give yourself time.  Cry if you need to.  Feel the feelings you have. Protect yourself from those not so fabulous feelings.

 

I know some women are much more private regarding their struggles, but if you ever come across this blog and need someone to talk to – please do not hesitate commenting or emailing me at naturallyunbalancedk@gmail.com

Loss, Infertility and Marriage

It’s not easy. 

We have argued, disagreed and cried.

My husband and I have been through a lot together, but pregnancy loss has been by far the most difficult.  The last couple of months have been an emotional roller-coaster; endless doctor’s appointments, numerous tests, bad news, financial strain and extremely difficult decisions.  The future holds uncertainty, but for certain the next few months will hold the same stress on our relationship.

The truth is we are not perfect and our relationship is not perfect. We are not always emotionally on the same page. In my opinion, there is a huge gender difference when it comes to dealing with obstacles such as infertility and pregnancy loss.

I have learned that a man has an instinct to “fix” problems, and in this case his hands are tied.  The heartbreak I see on his face when he sees me depressed or anxious breaks my heart, but in the throes of everything I cannot “snap out of it”.  The wicked thoughts begin, and I immediately feel he is not invested as I because his reactions cannot even touch my extreme emotions.

However, we have made it to today because we love each other unconditionally, and both know in our hearts we can survive anything. On most occasions when nobody can; he can reassure me, calm me  and love me when I am not very lovable.  I am sure there are plenty more arguments, disagreements and tantrums (by me) in our future, but we are in this together. 

There are dark days but there are also bright days. 

His love for me does not go unnoticed.  We have learned just how invested we are into one another and have learned quite a lot about each other through this difficult process.  We have learned to tread lightly and treat each other with more compassion.  We argue less and talk more. My tone is softer and he has become more patient. We are beginning to live more in the moment and focusing more on each other.  As you can see there are benefits from any struggle.  These are a few of ours.

What the days ahead will bring us is unknown, but as of right now one of our goals is strengthening our marriage.  It's been proven a weak marriage it not likely to withstand the emotional roller-coaster of infertility.   

 “For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future.” – Jeremiah 29:11

 

 

An Interview of Sorts

I was up at 5:30 AM (this never happens), took a hot shower and reviewed my notes.  I felt like I was preparing for a job interview, but instead was preparing for our IVF with PGD/PGS consultation with our RE.

As I have said in the past, an appointment with our RE is “therapy” for my ovaries, but this appointment was more like an interview to see if we wanted her to be more than that.   

I had researched my brain off regarding everything, so I was quite aware of the procedures but still had questions such as: qualifications of the person doing the biopsy, lab that completes the genetic testing, willingness to bank cycles and a few other things that I can’t remember right now.  Because holy information.

My questions were answered and we were able to meet the embryologist that performs the biopsy. He assured me it wasn’t his first rodeo and in the end it’s the laser doing all of the work.  Oh technology.  He is also a geneticist and he quickly explained to us that we do not know who carries the translocation yet, and the first step is finding out who does.  I told him I was pretty sure it was me.  My husband’s tests are, according to my RE, “stellar” and through my research this was a clear sign I am carrying the translocation.  In addition, our losses were caused by more chromosomes rather than less chromosomes another sign it is most likely the egg.  He glanced at my husband’s tests and quickly agreed with me, but explained karyotyping still needs to be completed to ensure the genetics lab has a probe fit for our situation.  I felt better meeting the person who would be performing the biopsy. I had imagined a young intern of sorts monkeying around in lab.  Luckily, the man was seasoned, intelligent and could handly my husband and I's jokes.

Where are we now? 

We have decided to go forward with IVF with PGD/PGS.  I am scheduled for a Saline Infusion Sonohysterography this Wednesday.  It sounds like an exotic facial treatment but it’s really an ultrasound to look for scar tissue in my uterus because of my previous D&C’s.  Oh uterus, please do not fail me now.

We are awaiting karyotyping results

I must continue taking aspirin because of the thrombophilia shenanigans.

We must remember, we are extremely fortunate to be able to even attempt IVF with PGD/PGS and this cannot be taken for granted.  I need to pull myself together for a crazy few months and remember that God has a plan for us.  We have been through so much already, and I know in my heart we can get through anything.

Unexpected

I felt like it was too soon for me to write about the latest occurrences, as the feelings are too raw.  If this was my old anonymous blog, I would not have thought twice.  Vulnerability at its finest. 
 
Alas…

After our RE appointment last Thursday, I called back the doctor’s office who did the D&C and asked for a call back regarding the chromosomal findings on the baby. I wanted to make sure there wasn’t a translocation found.  I received a call back from the nurse who I had originally talked to.  I inquired of the findings and specifically asked if there was the word “translocation” anywhere on the pathology report.  She assured me it simply said “male trisomy 13”.  I then asked her to send me a copy of the results via regular mail.  She said she would. I hung up, and I didn’t think twice. I felt reassured. I was still a bit annoyed that the nurse was reading me the results rather than the doctor as the perinatologist did with our first loss.

Fast forward to this Wednesday night, G checked the mail and asked me to not open it that night (bills from pregnancy losses suck the life out of you and almost always land me in tears).  I was feeling emotionally okay but that week I had a weird feeling that something was going on.  Intuition.  I needed to open the mail. 

I opened the envelope from the D&C doctor  “UNBALANCED TRANSLOCATION” clear as day.  I have no medical degree, but I can read. I cannot even explain to you the sinking in my chest.  The pain on my face told G this wasn’t just another hospital bill. The remainder of the night was silent.

We had our RE appointment the following day where she was supposed to be giving us test results, but instead we disclosed this “bomb” of sorts.  She was just as stunned as us.  It changes everything.  She went over our test results which were all just a daze at this point with me crying in between.  G is perfect with the exception of his 50% chance of being the carrier of the translocation.  I am perfect with the exception of a blood clotting disorder and the 50% chance that I am the carrier of the translocation. The translocation is balanced in us which means there are no outward/inward signs except when we try and reproduce. Granted there is a less than 10% chance the translocation occurred “de novo” or by chance but please spare me if you think we are on the fortunate end of the odds game this time.  As my RE said, we are growing sick of being “burned”.  So, as I do believe (due to odds and our pregnancy history) one of us is the carriers this means there is a 20% chance that we will have a healthy pregnancy.  Luck of the draw. 

Where does that leave us?  To put it bluntly, it leaves us playing a “game of chance”.  What are our next steps?  We need to meet with a geneticist to have karyotyping done to see who the carrier is and to learn more about where the translocation occurs.  We need a second opinion from another RE regarding IVF with PGD (Pre Genetic Diagnosing) CHA CHING! I need to start taking baby aspirin for the blood clotting disorder. We have to discuss our options.   

So, that’s where we are in the not so glamourous life of genetics, recurrent miscarriages and all things fertility.  I apologize if we have plans and I cancel, if I don’t answer my phone or text you back.  I feel like a bulldozer just buried me with a heap load of rocks.  I just need time. I need time to think, time to take care of myself and my marriage.

A Lot

We received the chromosomal testing on the baby; Trisomy 13 – meaning three copies of chromosome 13 in each cell versus two copies in each cell.  I had a hunch it was another chromosomal loss seeing 50% (or something like that) of miscarriages are indeed chromosomal.  I also had a hunch we were having a boy – also true, but all of this information also turned me into a blubbering, crying mess at my desk on Wednesday.   How can bad luck happen twice and why?! Oh why?! Bad luck is extremely hard to accept, but we have no choice but to accept it right now. There is no way to fix bad luck, but to conquer the fear of bad luck happening again.

The truth is we know much more than others, as many couples receive a normal female karyotype (46xx) from the testing and in many cases this cannot be counted on as true.  The normal karyotyping could be the mother’s tissue being analyzed because the fetal tissue is unable to be separated from the mother’s tissue.  You know science.

Chromosomal testing on two out of two losses is not the norm.  

Our first loss was an extremely rare situation, so chromosomal testing was done.  Our second loss we were lucky enough to also receive chromosomal testing because it was our second loss and we wound up having to rush to the ER.  In both cases, we received heartbreaking, gut wrenching answers but they were answers. So in essence we are extremely lucky to have two chromosomal findings in our losses.  Does that make sense? Sometimes the unknown sounds “better”, but I know in my heart this is not true.  Both losses are numerical chromosome losses and in most cases have nothing to do with the genetics of Mother and Father.   However, there is the possibility and they can be due to sperm or egg quality.    

Luckily for me, we had our “therapy for my ovaries” RE appointment the next day.  She hasn’t received all of our test results back, but thus far the glucose/insulin levels have checked out normal, Vitamin D is as expected and testosterone level is normal.  However, I have slightly higher than normal androgen levels.  She explained they were not extremely elevated by any means, but the next course of action would be a retest.  Overall she wasn’t very concerned about them. 

She stressed how fortunate we were to have all of the information we have, which I know but unfortunately doesn’t make it any easier. We then heard the dreaded “extremely bad luck” and the fact that Trisomy 13 is nowhere near as rare as our first 20 week Triploidy pregnancy. The odds of Trisomy 13 are something like 1 in 10,000. Odds are scary when you keep falling victim to them.

She followed that up with all of the positive information we have in our corner such as the implantation success of this uterus of mine. I find it amusing how during situations like this you grasp on to what you have that is “normal” and “functioning”.  My uterus is awesome.  She stressed the importance of the vitamins.  I then asked for more vitamin recommendations.  She hesitated to add any because I think she senses that I drive myself crazy with worry and researching. Alas,  I will be adding magnesium and a real food based B vitamin. We then discussed  the next course of action which will be to wait for the remainder of the tests to come back and if all checks out we shall try again. This I knew was coming as the diagnosis for bad luck is to try again.  This time around, I will use Clomid in the hopes of eggs which are fresher and more hardy.  A process called Superovulation in hopes for a super, amazing well-balanced egg.   It only takes one!!  This I keep telling myself.  I also plan on inquiring about acupuncture, as through my research, blood flow to the uterus may be an issue.  

We thanked her and I told her its truly like leaving a therapist when we come to see her. I am always leaving with hope and a positive outlook, but its a lot. 

Busy Is Good

It has been quite a couple of weeks between home improvements, tax season, G transferring to a busier store and lots of lab work. I am definitely welcoming the busy because my mind being busy at the moment is the best thing for me.  

After months of hemming and hawing in the typical G & K manner we decided on flooring.  We were originally only planning on replacing the carpet, but in typical G & K manner the project developed into replacing all of the flooring.  The downstairs is almost complete, and the upstairs will be complete in the next couple of weeks. This will probably be our last major home improvement for quite some time as it is really the last big thing that was irking us me.  I think it's the perfect time to relax for a bit and work on some much smaller weekend projects that we can DIY.  Our savings account will thank us! 

In addition to the flooring, we also had the hallways/entryways painted.  We decided on Water Chestnut by Behr. I will probably put a post together about the renovations we have completed since moving in, but I really am not that great about taking “before” pictures.  You will have to take my word for the atrocity of mauve sponge painted walls in the master bedroom and.  Our home was move in ready, but we knew there were things that we wanted to change/upgrade. We set a plan in place when we moved in and decided to do the majority of renovations in increments to allow time to save money and not have to finance the upgrades.  I must say I am beyond satisfied with our progress and ability to work together through both the financial aspects and renovation chaos.

I am writing this while waiting to get my blood drawn for the two hour glucose test the doctor ordered. I would much rather be doing anything else, tis life!  I went for the majority of my blood work yesterday and this hefty 10 vial round is the last of testing unless the RE orders other tests at our next appointment which is a week from Thursday. I am still having ups and downs.  I was feeling particularly down when I was waiting to be called for my blood work at the Fertility and Cyrogenics lab yesterday when out of nowhere came my RE. She obviously does not “work” at the lab. You could tell she saw the uneasiness in my face because she stopped to say hello and squeeze my shoulder.  She is a kind caring woman, and for this I am grateful.

I also attempted to get back to my “housewife” persona and cooked a couple of quick meals this past week including North Shore Poor’s Paleo Creole Burgers and a variant of her Saturday Carnivore Scramble and both did not disappoint. Both were delicious and followed the new “baby making friendly diet”.

As you can see life is happening around here and this is a very, very good thing.

Faith & Loss

A week of appointments ending in some faith

 

I followed up with the ER OB who performed the D&C on Monday and followed that up with HGB/HCT/PLT blood test.  My levels are still low, but definitely coming back. Horray for all of those hamburgers and steaks I have been consuming.  My HCG is also at 0 and all of my parts are back where they were pre-pregnancy.  I will not lie.  Hearing this made me more sad.  I followed up with my regular OB on Tuesday who recommended the RPL (Recurrent Pregnancy Loss) Panel and a trip to an RE.  Lucky for me, I had already had one lined up for Thursday.

 

We had an appointment with the RE that we saw in June, and hoped to never have to see again.  It went well.  It was refreshing to not be in a paper gown, on my back and in stirrups.  It was more like therapy for my ovaries rather than examination of my ovaries.

There is a lot of unknown, but she did solidify the known positives:

• We were able to get pregnant
• Normal FSH/Estraidol levels on Day 3  

She had only met one couple that had suffered a triploidy loss, as we did with our first loss.  She also believes that both losses were very different which brings comfort and discomfort.  Ya know, more of my favorite thing “the unknown”.  We will not know the chromosomal results from the second loss until early April.  It was refreshing to hear she agreed both G and I should forgo the chromosomal karyotyping of our blood until we know the results from the second loss.  It makes sense seeing the triploidy loss was aneuploidy meaning it wasn’t a translocation or missing gene situation.  In addition, 50% of pregnancy losses are chromosomal with only 4-5% of them being from a parent’s genes.  Oy vey.

 

Her “hunch” is it may be poor quality eggs due to later ovulation (possible light case of PCOS) and inflammation. Then again it could also be auto immune related seeing autoimmune disorders run in my family. The blood tests shall be the final word.  It was reassuring to finally hear a doctor recognize that it was quite possibly more than just “bad luck”.

In the meantime,  I will be eliminating all processed carbs, corn and soy from my diet. No more scolding hot baths, saunas, caffeine or alcohol.  I am also going to be adding Omega Twin Oil, additional 1,000 mg of folic acid, 1,000 mg each of EPA and DHA, additional 2,000 iu of Vitamin D3 and 200 mg 2x daily of CoQ10 to my vitamin regimen. 

 

In addition to the “normal” RPL (Recurrent Pregnancy Loss) blood panel she also requested a 2 hr Glucose, Free and Total Testosterone, SHBG, DHEAS, 25-Hydroxy Vitamin D and Natural Killer Cell tests.  G will also be going through a SA and SA Fragment test. Cha-Ching! Cha-Ching! Is it worth the money? Absolutely, but I can still wish we never had to go down this road.   Alas, we are and God has to have a plan.

We have a follow-up appointment with the RE in 2 weeks, and she should have our test results by then.

The appointment in length was over an hour long.  She ended the appointment with her personal history of a chromosomal pregnancy with a geneticist telling her there was only a 1% chance of her having any healthy children.  She went on to have two healthy children. 

 

Hope and I can say after yesterday, I have it.

** To those who just experienced a pregnancy loss I give you this advice --- Step away from Google. I had diagnosed myself with 2342433 different scenarios and the truth is – Biology (as one of my good friends said).  After a loss, it’s all so raw.  You are desperate for answers and feel hopeless.  Your hormones are all over the place, you lost a baby.  You lost the dreams you had for this baby.  Be good to yourself.  Have faith. Develop the right support system for you. I am still deathly afraid of what the future may bring, but after today I have some faith and you deserve the same <3

7 Days

Writing has always been my choice of therapy, and its something I turn to when I feel like I am sinking. My catharsis.

It has been 7 days since my emergency D&C after 6+ hours of attempting to naturally miscarry. I am in the throes of depression and feel all sorts of defeat.  I have dealt with anxiety, but have never ever been in the deepest throes of depression as I am now. My therapist believes postpartum. Regardless of the type, I wish I could take this pain away from anyone who is suffering from loss or depression. I can personally say I have never suffered as I am now. This I know is true. I was planning on returning to work this morning, but it didn't happen due to a variety of reasons including a stress/hormonal/dehydration induced migraine. I am not who I was 8 days ago.

The last 7 days have spent in a wave of ups and downs. I am aware, but as of right now the waves cannot be controlled. I have been lucky enough to spend a lot of that time with G, but the time without him around has not been easy on me. Probably another reason I couldn't lift myself out of bed this morning. He was in bed, and I couldn't leave him.  My therapist suggested finding something to comfort myself, and right now the only thing I can find is him.  I want to be as close to him as possible, and find myself thanking God that I was blessed to have met him and spend the rest of my life with him.  I am thankful for him, but aware that I need to ultimately tune in to controlling the anxiety and self-soothing.

The doctor appointments have begun. I went to therapy this past Saturday, and visited my primary care/chiropractor this past Thursday.  I was given a homeopathic anxiety spray and also a prescription of Xanax. I made my follow-up doctor appointments for next week with my regular OB and the OB that performed the procedure. I will also be making another appointment with the RE we saw this past summer. As of right now, the plan is simply putting one foot in front of the other, grieving but not letting depression get the best of me.

It is all easier said than done.

**I plan on continuously blogging about our loss not only for me, but for anyone that may feel as alone and hopeless as I have the last week.  If you are reading this, YOU are not alone. There is someone else feeling exactly the way you do right now.