A Heavy Heart

My heart is heavy tonight. We have been waiting 7 weeks for results from our ‪ anora test through Natera for both of our miscarriages (we were originally told results in 1-2 weeks). One of the reasons we have been delaying our IVF start date was to see our results as our next step will be dependent on the them (to do the PGS/freeze or a fresh cycle).

I found out earlier this afternoon that one of the samples is lost. There’s no explanation yet, and we may not get one, but somewhere between the hospital, the infertility clinic and the lab in CA one of the two samples went missing. I’m at such a loss for words on this. I hate being filled with thoughts of “why me” when I know there are so many things happening in the world far greater than this, but I can’t help myself. I feel like every step of the way if there was an easy path and a challenging path, I have been led down the challenging path. I have faith that there is a reason things have been so trying, and a lesson I am to be learning, but during nights like this it is so difficult to remain positive. At this point, to have a new sample sent to the lab, it would be an additional 6-8 weeks before we get results (this incorporates the two week turnaround time the hospital needs to retrieve the slides and send them to my RE). My heart is heavy and I’m finding it hard to see the silver lining this time.

Good news that is actually bad news

I finally receive my results from the recurrent pregnancy loss tests today.  We were on the road heading to our IVF seminar when the call came in. I received good news, but wish I hadn’t. All my test results came back as normal, meaning I do not have a blood clotting disorder. Also meaning that I am now one step closer to being labeled as having unknown reasons for my multiple miscarriages. 

Never before have I hoped a medical test would come back as positive, but in this case I had.  It would have given a reason to my miscarriages, a reason for the last 8 months of pain.  It would have put me on a path to resolve whatever the problem was. Instead, I am left with more questions and a pit in my stomach that has been there since I hung up the phone several hours ago. 

I am having trouble describing how I am feeling right now. I have officially typed out five different sentences, all of which felt authentic as I wrote them, but then felt extremely foreign as I read them. 
I am one part angry, one part sad and two parts numb and when mixed together I am left dazed and discouraged.

I spent those two weeks awaiting on these results. Fourteen days believing that I would be given an answer as to why we lost both pregnancies.  I believed these results would give me instruction as to what to do next and how to successfully carry a pregnancy.  Fourteen days convincing myself there would be a solution, and maybe an easy one like taking a low dose aspirin every day.

I spent two weeks believing I was nearing the end of my search into what went awry. 

I was wrong.
  

What to say (and not to say) to a friend who has had a miscarriage

Through my journey with miscarriages, I have come to realize what I need from friends in ways of support after a miscarriage. I have also come to realize that unless you have been through one, it can be very difficult to know what to say (and what not to say) as the friend of a mother who has lost her child due to miscarriage. I’ve been jotting notes on and off over the last few months and figured it was time to put them in a post instead of keeping them buried on my cell phone.   I realize there isn’t going to be great flow between points because they were written over several months. Either way, I hope this helps if you ever find yourself in the position of supporting a friend through a miscarriage.

Here’s a few things you can say/do:

1. Say anything. I’ve realized that people often go silent in fears of saying the wrong thing. In my opinion, saying anything is better than saying nothing. I have felt very alone/frustrated/eat and a quick hello or even chatting about what is going on in someone’s life is a welcomed conversation. And if you say the wrong thing, but with the best intentions behind it, that’s ok. I’d rather you reach out than not say anything.

2. If you say something like “Let me know what you need” or “Feel free to reach out if you need to talk” or “I’d love to get together with you soon” please please please follow through. I know often times these phrases are tossed around as the polite thing to say during a difficult time, especially when you don’t know what else to say.   It is an automated response in a time of crisis, words that society taught you to say.  This is important though: If there is no intention of making good on these offers, then please do not offer them.  I realize people are busy and time flys by quickly, but if this isn’t an offer you can make a priority then please don’t make the offer. In my opinion, this does more damage than never saying anything at all. If you can’t make good on an offer, but feel compelled to offer your help or company.  A simple “I’m sorry for your loss” is more than enough and always very appreciated.  There is nothing worse than reading one of the above phrases, finding the strength to admit that yes- I need help or support or company or some distraction and then:

a. Never hearing back.

b. Realizing it was an empty offer.

c. Realizing that you didn’t expect me to accept your offer so now you are free but not for another two weeks.

d. Realizing that you didn’t expect me to accept your offer so now you play naive and gloss over the fact that I was accepting your offer for help/support/company.  I realize people are busy and time flys by quickly, but if this isn’t an offer you can make a priority then please don’t make the offer. In my opinion, this does more damage than never saying anything at all. If you can’t make good on an offer, but feel compelled to offer your help or company.  A simple “I’m sorry for your loss” is more than enough and always very appreciated.

3. Pick up the phone, dial my number and press send. Everyone has become so dependent on texting they have forgotten the importance of a real phone call.  In my opinion, a text is a very impersonal way of communicating, one that often creates space rather than bringing people together.  This may be a personal one, as I do not like texting in a general sense, and dislike it even more when the subject matter is a difficult or personal one.   Nonetheless, a simple 5 minute call will speak volumes and mean so much. *Edit: This doesn’t mean I don’t appreciate the texts I have received. It just means that I personally prefer to talk over the phone than via text. I’ve always been that way, and it probably won’t change.  I never fully jumped on the “communicate only through text” bandwagon, but again- I do appreciate knowing I am thought of by receiving a text. 😊

4. Don’t assume I don’t want to be part of your hike/bbq/beach trip/picnic/dinner/birthday party/afternoon by the pool/group ice cream outing/etc because there will be kids and/or babies present. Leave the decision of not going up to me. It is tough feeling like I’ve been left out because I don’t have children, or left out of activities that I was once invited to. If I’m not feeling like being around children on a specific day, I will excuse myself from the activity, but will know that I was thought about and included.

5. “I’m sorry for your loss”.   A miscarriage is just that, a loss. It is the loss of a child’s life, the loss of hopes and dreams for the a future. The couple going through the miscarriage are grieving a death, and while it may be difficult to understand hopefully anyone can recognize when another is grieving and can be empathetic towards that.

6. “When you’re ready, here’s a book/support group/blog I came across that you may find helpful”.   Maybe you don’t know what to say, but almost anyone can look up reviews of a book or google support groups online. What better way of showing you care than trying to offer a source of help even if you can’t give the help & support yourself.  *Edit: I have received a few messages asking about support groups since putting this post up last night.  The one I have found most helpful so far is a nation wide organization call Resolve. They have a local support group which holds monthly meetings, and their website has been a great resource of information. A second support organization I like, although have not utilized as much, is Hope After Loss.

7. “My friend “Sally” had a miscarriage last year, here is her email if you ever want to reach out to someone who has gone through something similar.” If you yourself cannot relate to the emotions of having a miscarriage, maybe you know of a friend/family member who can and you’re willing to connect the two people as a show of support. Of course, check with your friend/family member first and then play support matchmaker. I know this has really helped me, knowing that a mutual friend connected me with someone who has been through their own battle with infertility and while I have only spoken to them a handful of times, it is nice to know that there is someone there if ever needed.

8. Ask “How are you feeling?” and then listen to their answer. There is nothing to fix, nothing to brainstorm a solution to, and nothing that requires an opinion or response (unless you are asked for one). Sometimes all that is needed is a friend to listen. If their answer is in any way a deflection, then realize that a conversation about the miscarriage is not what is needed in that given moment, but that doesn’t mean that you should never ask again. Instead, in that moment of deflection, change the topic and know that you will still be helping your friend go through their process

9. “What are you doing today? Want company?” Mind you, I may still be in my pj’s,  I may still be in the same spot on the couch since 8:00 this morning, and I may not remember the last time I brushed my hair but I would love your company; I just am not strong enough to ask for.

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Here’s a few thing that, in my opinion, should never be said. I am not going to give any of these an explanation at this moment as several of them still upset me. Yes, I have had people say some of these and yes, it hurt. It still hurts, which is why I won’t be including any side notes on these statements. Maybe I will in a future post, we shall see.

“Maybe it wasn’t your time yet.”

“At least you were able to get pregnant.”

“You can always try again.” (often a “try again soon” is added.)

“God/nature determined it wasn’t time for you to have a child yet.”

“Maybe it was for the best.”

“Oh wow, what happened?!”

With no real intention of following through on the offer: “Let me know if you need anything.” / “If you ever need to talk, do not hesitate to reach out to me.”

“That’s why I didn’t tell anyone I was pregnant until my second trimester, I didn’t want to jinx myself.”

“You can always adopt.”
“Have you thought about a surrogate yet?”

“Maybe there was something wrong with the baby so it’s for the best.”

“At least you weren’t farther along.”

“How soon until you can try again?”

Chances are, you know your friend and what they would need in a difficult time.  If you are unsure, the main thing to remember is that what is most important is your kindness, empathy and compassion.  Treat your friend as you would hope to be treated if you ever had to go through something similar.

Until next time,

Xo

hCG update

(Written on August 14th while on a plane and I forgot to post it once we landed. Whoops! 😊)

* In this post I will be discussing my journey with our fertility specialist. I may be going into detail of things done during the appointment, so please be aware that very little will be filtered. If you are not comfortable reading this about me, or my life, in this context please stop reading now. Also, please note, I am only discussing what I have experienced. This does not mean your journey will be the same, nor should you make any medical decisions based on what I have experienced or decide to do. I hope in some way, me sharing my journey helps you during yours. Xo
  
I know it has been a while since my last post, but there really hasn’t been much to update you on in regards to testing right now. I’ve been going weekly to have my hcg levels monitored and I am happy to say they are FINALLY negative (which means anything less than 2). This means I can now move forward with some of the RPL (recurrent  pregnancy loss) blood tests that couldn’t be done while I still had hcg in my system. 

Here’s a quick rundown of my level each week since the miscarriage. It took my body 7 weeks post-miscarriage for my hcg even to return to a zero. From this point, My doctor informed me that the average time before I should expect my menstrual cycle is another 6-8 weeks.  Once I have my period, we will be able to complete the next round of blood tests. To give you a starting point, I will include the level I was tested at one week prior to the miscarriage.

7 weeks pregnant: 58,609 (I week prior to miscarriage, so my levels would have been much higher at the time of the procedure.)

June 26, 2015: miscarriage, 8wks pregnant

July 15: 86.5 (2.5 weeks post miscarriage)

July 22: 27.6

July 29: 12.3

August 5: 3

August 12: 3.1 (due to the increase they had me retest)

August 13 retest: <2, which is considered a 0 by my Dr. 

As you noticed above, I had to have my levels retested. The reason for this, as examined to me, was because with numbers this low the results can often be hard to read while at the lab. In my case, my doctor was not worried about the increase, and had me take an additional test the following day. Sure enough, the next day’s results came back as being negative for the hcg hormones. Finally!! While I wish it didn’t take 7 weeks, it was much better than with my first miscarriage, which took over 13 weeks. 

Regardless of the time, I’m thankful to be moving forward in this process and hopefully will have some answers soon. 

Until next time,

Xo

Today I was angry

At this very moment I am sitting in my bed, wrapped up in a Minnie Mouse blanket and I’m angry (which is hard to do while wrapped in this particular blanket!). There’s no other way to describe it.  I’m simply …

Results and a lot of waiting

* In this post I will be discussing my journey with our fertility specialist.  I may be going into detail of things done during the appointment, so please be aware that very little will be filtered. If you are not …

A new path

* In this post I will be discussing my first appointment with my fertility specialist.  I will be going into detail of things done during the appointment, so please be aware that very little will be filtered. If you are not comfortable reading this about me, or my life, please stop reading now. Also, please note, I am only discussing what I experienced. This does not mean your appointment will be the same, nor should you make any medical decisions based on what I have experienced. I hope in some way, me sharing my journey helps you during yours. Xo

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For those who don’t know my back story, after almost a year of trying to conceive our first child I experienced two miscarriages, which happened within six months of each other. As a result of our recurrent pregnancy loss, my ob/gyn has referred me to a fertility specialist.  Today was our first appointment.  I haven’t fully digested all that happened today, but here is a rundown for anyone who may be beginning their own similar journey.

Thankfully, we arrived at our appointment early because we had a stack of forms to sign.  This was in addition to the thick packet which was filled out and already handed in. The packet mailed to us covered everything from our attempts at trying to conceive (know as ttc), both of our family’s medical history (including grandparents, aunts/uncles, cousins, etc.), our social behaviors (caffeine use, alcohol consumption, exercise, chemical we may be exposed to, questions about our sex life, our personal history, etc.), and a lot more ultra-personal information.

We were led into an exam room and my vitals were taken (blood pressure, height, weight) and we were asked some questions regarding our miscarriages. We were also asked if we wanted the tissue from our miscarriages to have genetics testing done. (We decided we would.)

Next, a one of our doctor’s residents came in and went over the packet of medical history we had previously turned in. He asked specific questions looking for further detail on some of our answers as well as reviewed our answers to make sure nothing was missed.  (Side note: our practice is part of a teaching school, so in addition to our doctor, there will often be a Resident in the room with us.)

Shortly after the interview ended, we were brought into the doctor’s office to discuss our plan, our new way of life. Being that we have gotten pregnant twice, we are not considered to have infertility. Instead, we fall under the category of Recurrent Pregnancy Loss (RTL).  We can get pregnant, we just can’t stay pregnant.   The first steps of our plan to figuring out why this happens included lots of bloodwork for the both of us, which included the Counsyl Genetic Carrier testing (I was only tested), a hcg panel (only because my most recent miscarriage was only 2 weeks ago), and other factors such as my thyroid function and a condition which causes blood clotting.

Next, I had an evaluation of my reproductive organs via a 3D transvaginal ultrasound and then the doctor and I discussed the results.  Only mildly uncomfortably, this procedure took about 15 minutes as various measurements were taken and my reproductive organs were inspected.  One of the things being ruled out was a misshaped uterus, which could lead to miscarriages.  Luckily, we learned that this is not a concern for us.

There are several tests which I could not have done yet because my body has not regulated since the most recent miscarriage. I will be tracking my hcg level via weekly bloodwork until it reaches zero. Once that happens, I will have additional bloodwork on specific days of my cycle (days 3 and again sometime between 6-12). I will also have a Sonohysterogram, which is an ultrasound used to evaluate the uterine cavity. According to my doctor, this special type of ultrasound uses fluid which is injected into the uterus, via a catheter, to view the lining in greater detail.

Due to the fact that we are able to get pregnant, my husband has had it easy so far in terms of exams.  He will not need a semen analysis and he dos not do any of the genetic screening unless it is found that I am a carrier. He did have some general bloodwork done today, but he only had three small vials drawn as compared to my 8 (3 small and 5 large vials).  He also had it fairly easy during the initial paperwork, having fewer questions to answer than I did.

Due to our recent miscarriage, it will be at least 3 months before we can start ttc again, and that length of time may be extended depending on what we find from the tests.  We will not have results from our genetic screening for 2-3 weeks and the genetic testing being done on the tissues from our miscarriages will not give us results for almost a month.

After our exams and discussions with the medical team, we met with our Financial Advisor. Luckily (unluckily) I have already hit our insurance deductible for the year so outside of a copay all the tests and bloodwork being done in the is first stage are being covered.  My husband did spend a lot of time researching what our insurance covers so there would be no surprises at this point in the day. I would highly recommend doing the same.

Here are some tips to help your first appointment go smoothly:

1) It is ok to be emotional, allow yourself to feel the various emotions you will bounce back and forth between.

2) Communicate with your husband! I spend so much of my time trying to act like I’m strong and completely ok with this that he sometimes forgets I’m one baby related commercial from completely falling apart. As a result, I then get snippy and upset with him for not realizing what I’m going through (a situation I completely created by trying to act tough!). Anyways, this whole situation can be avoided with some simple communication. I’m making more of an effort to talk to him about how I’m feeling (which seems to change often based of completely random things) and he is getting better at seeing through my “tough girl” mask.

3) Research questions to ask, as well as come up with some of your own. My hubby and I were given lots of time to ask our questions, and all of our question were answered without the feeling of being rushed.

4) Ask about support groups, most fertility specialists know of several but they do not always bring them up during the appointment unless you ask.

5) No matter how long they tell you as a time estimate for your appointment, add another hour to that.

6) Don’t be afraid to advocate for yourself. If there’s a specific test you’re interested in having done, don’t hesitate to ask about it.  Yes, they are the medical professionals but this is your body so don’t be worried to speak up. For example, my doctor wanted to wait to do all the testing and exams later when my hcg levels were at zero. I asked to do whatever tests we could today (the thought of waiting was awful to me) and he has happy to do so.

Until next time,

Xo

Hope

It will never end. No matter how many days pass, no matter how many hours separate us- the hole in my heart will never be healed. I know this now.

I thought I was stronger, I thought I was ready. I thought I was able to hold myself together. I know I am not.

I can only hope to make it through each day with my head held high, no one knowing the struggle simmering just below the surface. I can only hope to be strong on the days I feel weak. I can only hope for people in my life who understand when things are difficult are days I need them the most. Hope that tomorrow will be a better day, that someday I will have the strength to believe. Believe that I will make it through, that I am deserving, in hope.

Hope.
It is all I have. It is all I am not.