Tuesday, February 25, 2020

PGT-A testing.
Why we did it and why I regret it. Part 2

11:21 PM 0


All those years ago, I never thought my AP human biology class would come in handy. Today is the day!

I am not going to lie, I am exhausted by all of the articles, studies and posts I have read about mosaic embryos. I have even gotten my mother to fall down the rabbit hole with me and every 20 minutes she is texting me with a new article or paper written about the topic. Mike and I have been engrossed in our Mosiac Facebook support group and the success stories on their own are just mind blowing! It doesn’t take away all fear of early loss, but the consensus seems to be that if our baby girl takes, she will most likely be very healthy... and that’s enough for us.

This week we spoke to the genetic counselor and learned a little more about the “diagnosis”. The tests found a segmental deletion (q36.2-qter) on chromosome seven. In layman‘s terms, the very very tip of chromosome seven (from 36.2-36.3) on a portion of her cells. Of course they give you all the potential risks, lower rates of implantation or early miscarriage, but having a mosaic embryo does not mean you will have a mosaic baby. In fact, that has never happened! If they implant and continue to grow, the cells themselves seem to self correct and your rate of abnormality goes to about the same level that it would with any pregnancy.  They can’t tell us what the rate of implantation is compared to a normal embryo but since the deletion she has is minimal, and rather simple, we are hoping our chances are just as high as a transfer of our boy would be. (Baby girl, I hope that someday you do not read this and think you were not normal because we are all a little imperfect and what science defines you as means nothing to your daddy and I)

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According to the RBMO Journal “While the collective transfer data still only comprises less than 500 mosaic embryos, it is clear that a high proportion of mosaic embryos have some level of developmental competence. Equally important, prenatal diagnosis follow up of the established pregnancies by amniocentesis revealed normal euploid fetuses indicating that the trophectoderm mosaicism originally seen in the blastocyst was likely of limited nature. All live births reported to date were healthy with no evidence of chromosome based syndromes. In addition, these studies revealed that outcomes were generally independent of the original chromosome involved in the mosaicism. 

Prior IVF outcomes indicated no elevated risks of chromosome disorders compared to natural pregnancies and so from the available PGT-A data, transfer of mosaic embryos appears to be a relatively safe option for couples, with low or minimal risk of negative outcomes for the pregnancy.” Which is amazing!


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Wednesday, February 19, 2020

PGT-A testing.
Why we did it and why I regret it. Part 1

10:08 AM 0

When Michael and I finally started our IVF journey we had to have a LOT of conversations. Not limited to what happens to our embryos if one of us dies, we get divorced, if both of us die and so on.... we also talked about testing them. I felt strongly that since our insurance only covered two rounds it would save us the heartache of implanting an embryo that had chromosomal abnormalities. Neither of us tested positive for any genetic markers, so I felt safe assuming our offspring would not inherit anything weird from us. So we settled on PGT-A. 

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“PGT-A, or preimplantation genetic testing for aneuploidies (abnormals), is a genetic test performed on embryos produced through IVF. PGT-A gives information about embryos’ genetic health to help your care team select the best embryo for transfer and improve your chance of achieving a successful pregnancy.”

- Cooper Genomics

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 How Preimplantation Genetic Screening (PGS) Works

Admittedly, I hadn’t REALLY done much in depth research. I just trusted it, well because... science.... right? Plus, since a natural pregnancy has been so rudely stripped away from us, with the testing, we’d additionally have the option of selecting the sex of the baby... so we thought it was a consolation prize of sorts... you know, for all our heartache. 

Even though my clinic said it was unnecessary and it was an out of pocket expense for us (averaging about $3500 on top of our already high deductible) we.... well I, felt like it was priceless and would surely help us decide on the best embryos to transfer (because I was also certain we’d have so many to choose from ðŸ˜‘). However If you’ve read our retrieval story HERE or followed us on Instagram you’ll know that wasn’t exactly the case. It was a hard lesson in comparing myself to others and overconfidence, but that’s neither here nor there. We were lucky enough to have completed this cycle with two beautiful embryos, which were sent off to the lab for testing. And then we wait..... we were told 7-10 business... or so we thought.

The lab received our biopsies on February 11th and at about 4pm on February 14th the phone rang. It was my clinic - since it had been such a short amount of time I assumed it was a check in call - but as soon as I heard my doctors voice I knew it was more. I frantically left my desk and looked for Mike while I was listening to the Doctor tell me the results were in and we should be very happy. Again I was optimistic.... until he dropped a bomb. When will I learn.

The results.... we had one normal and one mosaic. At this point I had to stop looking for Mike... because honestly I just needed to focus. I stepped outside into the brisk February air... no jacket and just listened. 

He described the results and assured me that even though one had come back with mixed  results it could still result in a completely healthy pregnancy and a normal baby. He told me that EVERY DAY they implant embryos, just like mine, strong healthy looking embryos that made it through the “grow”, that don’t have all that “fancy testing” and they are perfectly fine. Although it may carry a slightly lower chance of implantation, he wouldn’t suggest discarding it unless we only wanted perfection. 

Somewhere in the middle of his spiel Michael appeared and I put the phone on speaker, shivering, while the doctor finished. Although deflated... I felt a pang of hope. He described the next steps.... we’ll schedule a transfer next month, the normal one first he’d suggest... and the other as a back up since most likely our insurance provider wouldn’t approve another round to “bank” embryos. 

My last question to the Doctor.... the sexes.

Normal : boy
Mosaic : girl

One of each... our perfect pair... our babies. 
  
So, you ask... why this post is labeled “Why I regret testing”? Simple, it has given us a third layer of confusion, doubt, and anxiety that we wouldn’t have had if we just trusted our doctor and gone with God. These two beautiful embryos that he provided us with would not have caused us to second-guess ourselves. Somewhere, in the back of my mind, if my precious daughter takes, I will always wonder if an illness, setback, or worse is my fault because I chose to bring her life into this world. Because I had the information before that something might be wrong. The research is so under developed right now and frankly, based on just the small amount of reading we’ve been able to do in the last 24 hours, downright faulty at times. We have to just go with our heart. 

For now, we’re going to do everything we can to learn, to fight and prepare for both our babes. We’re looking forward to a discussion with a geneticist about the specific discrepancies but so far we’ve joined some support groups and we’ve talked to so many inspiring people and have found NOTHING but positive news.  

As always please keep us in your thoughts and keep our baby boy and our baby girl in your prayers. Part two to come...

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Wednesday, February 12, 2020

A letter to our embryos

9:44 AM 0
Hi Embabies,
You made it! Our two. You beat the odds, and made it over the hurdle of 5 days in a dish. You passed your first test. I know there are many more to come... but for now you are safe and sound in a state of suspended animation. Mommy and daddy love you very much, you’re the first thing we’ve made together. 

You have no idea how much we have prayed for you. Just the thought of you has been a wish for many years and our desire to become parents came many years before that. I am not sad that it didn’t happen naturally, because then there wouldn’t have been you. It hasn’t been an easy road.... and there were some days it was so dark. But here you are... 

We hope we get to meet you both. To snuggle you and love you. We hope we get to feel you kick and wiggle inside. We hope to watch you be born. We hope to teach you to walk and talk, sing and ride a dirt bike (ok maybe just daddy). Most of all we hope you are happy and healthy.

Maybe one day you’ll read this and know just how much you’re loved and know how very wanted you were.

Forever your parents
xoxo
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Wednesday, February 5, 2020

On disappointment...

11:11 PM 3
When Michael and I started our IVF journey we never expected it to be easy. However I felt this false sense of hope like maybe it would be easy for me. Surely, I’m healthy enough and I take good care of myself and my cycle is perfect and my OB assures me I have a very hospitable womb.

The road leading up certainly was bumpy, but when we got there it all just seemed to sail by. Sure it was a little frustrating waiting for our insurance, ordering meds, and staring at them sitting on our table waiting for my cycle to start. But as soon as it did I felt like it went by in a blink. The shots didn’t hurt as much as I thought they would, in fact they didn’t hurt at all. My doctors appointments were quick and painless, although I can’t say that I’ll miss getting internal ultrasounds every other day. Our retrieval was a breeze, minus the traffic jam that almost made us late. But it was what came after it has been the hardest part.

When the nurse told us that they had retrieved seven eggs I was immediately disappointed in myself. “Why didn’t I get more?” I had felt so positive leading up to the retrieval. I had been told that I had so many good follicles. I saw them, in their bulging glory on the ultrasounds and watched them grow as the week progressed. Seven, that’s all? The nurse assured me that was a great number and it was on par with what they typically get. Then doubt started to creep in “what if they’re not all mature? what if they don’t fertilize? What if none of them are normal?” I could literally see that number tanking before my eyes. The next blow came the following day. When I got the call about how many were mature and how many fertilized. 7 retrieved, 5 mature and 4 fertilized. I looked at it as a failure. “Why weren’t all seven of them perfect?” I know logically, (and statistically) it is impossible for all of them to be perfect but somehow I blamed myself. Could I have taken more vitamins? Could I have drank more water? Could I have taken it easier on myself? 

I’m not gonna lie, I kind of spent yesterday in a pity party for myself thinking “oh well it’s already failed, I’m already doing a terrible job, my outcomes don’t look very good.“ My husband, Michael, the forever optimist, is beaming with glory. Four babies... I can already see him dreaming. I put on my smile, posted a photo to Instagram, beamed about my four growing embabies, while inside I tore myself down. I went to bed pretty early, Full of nerves and already impatiently waiting next weeks report.

 But something happened overnight. This morning I woke up to so many encouraging words on social media and another woman commented about the incredibly high number of egg she had collected and only three that fertilized and I thought to myself “Girl! You’ve got three!” And in that moment I thought to myself “Why do we do this to ourselves? Why do we automatically feel as if we failed because we have made three embryos in one month?” We literally did some thing that our bodies are not supposed to do. We made the possibility of three babies in one month. If we were conceiving naturally we’d be a one in a million, an anomaly, but instead we are doubting ourselves because we only made three.

I can’t say that there won’t be days that I will be discouraged, or that the wind will be taken out of my sails because of an update, but I am going to look at myself now as lucky, as amazing, and a goddamn miracle for making MY four this month. 


I know that there’s still a lot of time between now and the day they tell me how many made it to day 5 Blastocysts, and we’ve chosen to do chromosomal testing so there’s even more time until we get the results of those. But for now I am going to love these for embabies with all my heart and commend myself for the job I did creating them.


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Tuesday, February 4, 2020

Retrieval day!

1:00 PM 0
We woke bright an early to get showered and out of the house at a decent time. Our arrival was supposed to be at 7:45... but I wanted to get us there early so we left the house over an HOUR before we needed to be there. The clinic is usually a 25 minute ride so we should have had MORE than enough time. Thank God we left when we did because an accident on the highway had 2 lanes shut down and we sat in traffic for almost 30 minutes before we were able to sneak off an exit and route around the traffic getting us to the clinic at 7:50! Talk about panicking!!! They whisked me in so quickly I wasn’t even able to give Mike a kiss goodbye. 

The nursing staff at Uconn Fertility are amazing! They were all so kind and encouraging and quickly got me through intake before I was suited up and hooked up by the Anesthesiologist. From there they walked me into the OR where I was stirruped up (hello world) and out.

Next thing I remember was waking up.... laughing hysterically while asking Mike if he took photos of his “specimen” for the gram. (Don’t worry, you’re safe. He didn’t) But I did force him to snap some selfies there in recovery with me (and my prepped letter board) with my handy dandy selfie stick . Courtesy of a couple who’s wedding I shot a few years back that had them as favors! it is definitely the dorkiest thing I own!!

After about 20 minutes the nurse came in and gave me our numbers. SEVEN.



I’m not going to lie. I was expecting more.... I was HOPING for more. I thought I had this in the BAG! 

They also told me that normally, they would have been able to give me my maturity results that day however because of the unusually high number of retrievals that day,  I was going to have to wait 24 hours for those... along with my fertilization numbers. And that is where the long week of waiting began...

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