Saturday, January 7, 2023

How to be a parent A fertility story and loss.

 



        Some of you may know that I have struggled with infertility for more than 20 years now. When Gary and I were married in February 2000,we knew we wanted to start a family as soon as we could, because we had an 18 year age difference, and have tried for a family for all of these years, sometimes with medical intervention, and most of the time not. Sometimes we had great health insurance, for a few years after Gary retired we had none. I have done so many fertility tests, and I have had all of the diagnostic procedures you can have to make sure that my reproductive organs were functioning like they should. All of the parts were good. I was told my horemones were not good and that's why I didn't have a regular period, I would need help to correct my cycles. I responded to all the drugs, my body produced eggs when the drugs told them to, and when it was time to release them we had a trigger shot and timed intercourse, we assume they did release from blood work, but cycle after cycle we did not become pregnant.

        We went along with our daily lives outside of the home, Work and gatherings and family events. We did this as long as we could, until we decided to just let nature take it's course and if it was going to happen it would. Without intervention, without monitoring. But we never did. We tried to live life for each other and we chased other dreams all the way to Maine! But we still felt the family we had always wanted wasn't complete.

        The pandemic had us really soul searching as I am sure much of the world was doing, and we decided in September of 2021 to check on my health and his to see where we were, in terms of our fertility. My clock was ticking very loudly. Gary was totally great at 62/63. My hormone issues were just as messy as they always have been, still at 44, and I expected that. So in march of 2022 I was sent to an Endocrinologist again for answers, and boy were there answers.


        After 20 years of tests and more tests, medications, and treatments, this doctor didn't think the new test results she was seeing matched what I was told I had over 10 years ago.(NCCAH) Non Classical Congenital Adrenal Hyperplasia as well as PCOS. I actually didn't have NCCAH. Yes, it was still my right adrenal gland, and by chance in a CT scan to check on my adrenals, also a small mass on my right kidney. There were other trips to doctors, for how to aproach this new medical issue, and taking into account I would still like to try to be a mother, because I am so young, the doctors felt the best course of action was to remove the very small mass from my right kidney and the adrenal gland, and I was lucky enough to have been reffered to one of only two doctors in the State of Maine who could do both, robotically, at the same time. It felt like a true whirl wind of things that have happened since then.

        In June 2022 I had this life changing surgery and a 3 day stay in the Hospital. Gary was with me the whole time. Our beautiful friends and neighbors let him stay at their condo in Portland and my amazing Mother stayed here at the farm to care for our chickens and dogs while we were gone. My heart was so happy that we were so loved and cared for by our family and friends. When we came home I had several weeks of recovery time when I wasn't allowed to do any heavy lifting, bending or gardening that could tear my internal sutures, or cause me to develop hernias. So I was good and did my best by just watering here and there and resting. That was hard. I really love to work in the gardens, but It was hot and I needed rest still. The pathology showed that the mass on my right kidney was a cancerous clump of cells, but they were able to get it all out and the margins were all clear. The adrenal gland mass was benign but was the cause of my high aldosterone, as well as my Hypokalemia and my Hypertension.

        In July I was cleared by the doctors. I was off of all medications. My Blood pressure was now normal again, I didn't need high doses of potassium any more either. And we were also cleared to start trying for a baby. After all that was our original reason for starting this crazy journey in the first place.

        Rewinding to the day we left the hospital. I actually started my period that same day. We already had decided we would keep track of this cycle to avoid my fertile window, and wait for at least a month for me to heal. So we were just focused on that, my healing, doctors appointments etc...
So weeks go by and my fertile window was just over, we thought my LH surge was done and we just went about life. What I didn't know was that first peak, was a failed surge and I had a second peak a couple of weeks later, when I should have been starting my period. But no, I was already somehow, Pregnant!

        I did the first test, and was just completely shocked to my core to see an ever so very faint line, I then did a second test the next day because I thought the test might have been wrong. But It was ever so much slightly darker this time. So this time I did a third test, with a different brand, and it was positive also. I just have to say that I have never in my now 45 years of life, never had this happen before. I was ecstatic, I told Gary and he was also so happy.

        But here's the thing, the very important thing, you need to know about this news. The fact that I was pregnant, was a great shock and I had zero symptoms. I was feeling normal. We called my OB/Gyn and asked for a blood test etc. and it was early, but it was positive.
August 8th, 2022

HCG, QUANTITATIVE, BLOOD (SERUM PREGNANCY)

136.2 mIU/mL

A week later I had a second draw.....
August 16th, 2022

HCG, QUANTITATIVE, BLOOD (SERUM PREGNANCY)

3,470.0 mIU/mL


Progesterone

11.50 ng/mL


        Now here is where I have to say I was not very happy about the term Geriatric Pregnancy, because I am considered high risk, mostly due to my health history, but also because of my age!
We had our first US August 17th, 2022 and there was a pregnancy and it was in the right place. But it was still too early and I would have to come back in a week for another one. I was measured at 5w1d.
August 25th, 2022 At the second US
The uterus contains a single gestational sac with a single fetal pole. A yolk sac is identified; 5 mm in maximum diameter. There is normal fetal motion and cardiac activity. A heart rate of 134 beats per minute was obtained.

The crown-rump length is 0.4 cm, which would correspond to a gestational age of 6 weeks, 1 day and an EDD of April 19, 2023.


HCG, QUANTITATIVE, BLOOD (SERUM PREGNANCY)

28,053.0 mIU/mL


Progesterone

8.69 ng/mL


        I was assured all was well. But I was worried about my Progesterone being so low and I asked for another test to make sure it was going up as well as suppositories to support my pregnancy. As an older woman I have read quite a lot about this in particular being something that causes women my age to loose an otherwise viable pregnancy, So I advocated for this as a support. It took another 5 days to get it. Above you can see it was indeed lower than it should have been. It should have been a red flag to my doctor, but because she had already prescribed the Progesterone to me at the highest dose, she never even mentioned it. She also declined to do any further testing of my Progesterone.

        My next appointment wasn't until I was 7w6d. At this point we were in love with this little life we had made. I was super tired and had tender, growing breasts, but that was it. No other symptoms to tell me I was pregnant.
By this appointment I was taking the progesterone, but I wasn't being reassured all was well with more tests. This confused me as I thought I was considered high risk, so why no more testing? I wasn't even due for another US until 12 weeks.

        But at 10w2d I had a little cramping and a little tinge of pink when I wiped, after going to the bathroom. So I called the doctor and she had me come in.

        Friday, September 23rd 2022 4 weeks after my US with my peanut's heartbeat was detected.
EXAM: US OB < 14 WEEKS SINGLE OR FIRST GEST AND TRANSVAG

INDICATION: 45yo G1 at 10+2 by first trimester US - bleeding. Request US for viability, NT if possible. Thank you..

TECHNIQUE: Transvesical and endovaginal scanning is performed.
FINDINGS: There is a single intrauterine pregnancy. The gestational sac has a regular shape and contour. The mean sac diameter is 3.69 cm corresponding to an estimated gestational age of 9 weeks and 2 days. There is no evidence of subchorionic
hemorrhage. A fetal pole is identified with crown-rump length of 0.99 cm corresponding to an estimated gestational age of 7 weeks and 1 day. No fetal cardiac activity is identified. There is no yolk sac.


No heartbeat was detected. We had suffered a Missed Miscarriage. My OB was called to talk to us and came to the US room to express her sorrow at our loss, but just to be sure we would have to have another US in a week to confirm this US. So on Monday, October 3rd, 2022  in my OB's office I went alone to confirm our little Peanut was really gone. We discussed my options for how to further the progression of my miscarriage. At this point nothing more happened in the week after we learned about the MMC, I was ready to move the process on so on Friday that week I went back in to my OB's office and I took the Mifeprostone in the office and got the Misoprostal at the pharmacy on the way home. I asked my Dr. if it was possible to test the tissue to give us some clarity as to why I miscarried, so she sent me home with a sample collection cup and one of those halfmoon collectors you put on the toilet to collect your sample in, scheduled a follow up US for the next week to make sure I passed all the “products of conception” and to reassess my next steps.


That weekend I had the first part of three phases to my miscarriage. It felt like contraction like cramping low in my uterus, followed by the need to push. It was hard physically, and emotionally to see the clots each time I pushed. It was so hard to wonder what it was I was looking for in the mass of blood and urine I had to sift through to find what might be placenta or fetal tissue that we could send to the lab for testing.
After about 4 hours of this I finally stopped having the contraction like cramps. I placed what I thought might be the fetal tissue into the specimen cup and in the morning the next day I walked it into the hospital and down to the lab and gave them what I thought was my baby to test for what might have been the reason for the miscarriage. I was greeted with a lot of empathy, and sorrys from everyone I spoke to. Which made me feel cared for as well as sad.

At 13w1d on October 13th, 2022 I went back in to My OB's office for another US and there in the office was phase 2 of my miscarriage. It was another transvaginal US and she saw there were still tissues in a clump near my cervix, so my miscarriage was not complete. After the doctor took the probe out of me I started bleeding onto the floor. So quickly she and the nurse had to pivot to a full on examination. I hardly had any time to process that I was still miscarrying, before the cold metal clamps were opening me up and she was going in to see what was happening.  It took about 20 min of suctioning and swabbing, and cramping and lots of heavy breathing on my part to get through that, At the end of it she had collected a second sample of tissue and clots to send off to be tested(*more on that later) then told me I needed to go right to the Main Hospital for a second US, again to try to confirm that all had finally passed. They gave me a pad and a bottle of water to drink for the US. She asked me how I was feeling, and I mean what do you say? I'm not that great. I cried some more, maybe for the second or third time in her office in the past few weeks. More apologies.

     We headed to the hospital entrance side, I checked in at reception, only to be told I didn't have an appointment for an US. In fact I just had one. I had to go through the whole story of what had just happened in my OB's office, and that she called right in to radiology to get me in, if she would just call them to confirm it. So 15 min later, more apologies for my situation, and the confusion, I was off to have my second probe of the day, only to be told there was still tissue/mass left. My OB called me later that evening to instruct me to take a second dose of the Misoprostal to try to complete the process. There would be another US to follow.

     I went home, tired, super sad and too tired to go through the pain and cramps that night, so I took the second dose of the Misoprostal the next day. The cramps weren't quite as bad as the first time, but I still had the urges to push. I passed more clots and tissue that I collected in a baggie and stored in the fridge until the next day. No one had thought to give me a collection cup, or ask me to but I did it anyway because, at this point the first sample I had collected had no fetal tissues to test. The second sample was never tested, because the first sample had not come back yet, and as it turns out the third sample that was tested, also had no fetal tissues to test. So I believe they were in the second un tested sample, and it was heartbreaking for me not to have any closure on this at all.  I am assuming it was just an old egg with chromosomal abnormalities and that was why we miscarried, but we will never know. 

     
On Wednesday, October 19th, 2022 @ what would have been 14w pregnant,  I had my last US that finally confirmed the completion of my MMC. I would have just entered my second trimester. I would have been anxiously awaiting my 20 week scan. The one we were waiting for to tell everyone we were Pregnant. That was our goal for sharing our news. Instead I saw this in my visit notes. It was finally and completely over. 

EXAM: US PELVIC NON OB COMPLETE W TRANSVAG

INDICATION: Follow up s/p medical management.

COMPARISON: Pelvic ultrasound examination of October 13, 2022

TECHNIQUE: Transvesical and endovaginal scanning is performed. 2-D grayscale and color Doppler images were acquired.

FINDINGS: The uterus measures 12.5 x 4.9 x 6.3 cm. The uterine contour is smooth. Uterine architecture is heterogeneous.


The endometrial stripe measures 8.4 mm in maximum AP dimension. A small amount of fluid is identified within the lower endometrial and the endocervical canal.
The previously demonstrated soft tissue collection at this location which measured up to 4.1 cm
in maximum diameter is no longer identified.



        At 13w2d I finished passing the "products of conception". Quietly at home, with Gary and my puppies by my side. Every Wednesday since then, I am sad.  Wednesdays were my weekly markers for how far along we were. For almost 11weeks I loved Wednesdays. Now they are just a sad reminder of what we lost. 
        On 1/4/2023 we would have been 25 weeks pregnant. We would have been frantically figuring out where all the future baby things were going, I would be filling our freezer with postpartum meals to make our life easier. I had plans for every week until our due date. I was so happy for 11 weeks. 

        Unfortunately I have been unhappy for 13 weeks. Longer than I was happily pregnant. How long will I be holding on to this sadness?  I will always have it inside me as I know every mother who has lost a child does. But mostly I have thought about how my story could help others through this in the future, or could stop this kind of thing from happening at all.

        When I was 18 years old I was told I had PCOS. and I may have, but it was much more than that. I was never counseled about my fertility future. No one sat me down and said you will have a long road ahead of you of infertility. Was it because I was unmarried? Was it because they were hoping for a long future of  me paying into the medical system for their "help"?  I don't know. So here is what I wish someone told me at 18 or 23 or even 35 when I still had younger eggs and better odds of a healthy egg.

        Insert your name here__________ , as a woman you have been born with all the eggs you will ever have in your life. As you age so do they. you don't have to decide to have children right now. but in a few years time it will be harder to have a baby with older eggs, and the older you get the older they get. Yes you can get pregnant at any age up until you go through menopause, and with expensive drugs and a good fertility clinic, and good health you could prolong that time with a donor egg.  But as your friend / medical professional/ family member I need you to hear me. Bank your eggs now. Save them for a day when you are happy, financially stable, with a partner or on your own, in a healthy and stable mental state, a safe home, or have the career you have always wanted. Whatever your reason is to put it off, bank them. Live your life, travel , excel in your career. But don't put it off. And one day if you decide you don't want to use them, you could donate them to a friend or family member who is struggling with infertility. But don't put it off. Because one day when everything is finally the way you want it to be your eggs will be older, and the trials you will have to go through will be hard, devastating even, and I want to save you from that pain. So do this for the future you. Or the future you who might give the gift of life to a sister or brother, or a cousin or a friend, or even a complete stranger. Or no one at all. But don't let your fertility slip away from you.  You may not have a medical issue that is challenging you right now, but think about Cancer, or other things that could happen in a lifetime. This is a real solution to a real future problem. I truly wish someone, anyone had explained this all to me when I was so much younger. Even 10 years ago.

        Right now it isn't much cheaper to bank your eggs for the future than it is to go through IVF.
The average cost for an IVF cycle with fresh eggs is around $15,130, while a cycle with frozen eggs is slightly less expensive at $13,180. The average cost of a new patient consultation is roughly $350, and additional fees for medications and fertility testing.

"Studies suggest that women who freeze their eggs before age 35 have a better chance of a successful pregnancy than those who freeze their eggs after age 35." This is because the more eggs retrieved and frozen, the better the chance of a successful pregnancy.J


Generally speaking, women over the age of 43 are not advised to undergo IVF with their own eggs. Instead, reproductive specialists recommend using donor eggs, as older eggs have a higher chance of being chromosomally abnormal. These abnormalities can lead to miscarriage, disease, or problems in growth or development.


It is a similar process, and one day it is what you will have to go through to use your banked eggs. The process is taxing on your body to make it produce many eggs when you are in your 40's and most women have such a small reserve at that point, they almost never get a golden egg from a single retrieval. Imagine having to pay tens of thousands of dollars to try to get a good egg and still end up having to go with a donor egg. Many women do that, just to experience becoming a mother. Some have issues maintaining a pregnancy and have to have a surrogate. All are equally good ways to become a mother. I applaud all of them, and adoption and fostering to adoption as well. All viable and wonderful ways to be a parent. Just make sure that you think about all of your future options while they are options for you. Because some day one or more of them will be off the table due to unforeseen reasons that you couldn't plan for. 

        I wasn't sure I would share this story with anyone other than a few women in my life that helped me through some of this. But I feel as women we need to have these conversations, and have people to lean on and help us through this. I truly felt so alone. I had no one to tell me what was going to happen, or how I was going to feel. So I do this for all of the future women that read this, and want to heal and move forward, or make plans for a yet unknown future. 

        We are strong. we have each other, and we are not alone.  




My positive Pregnancy Test.


My Peanut at 6w1d HR 134


The announcement we never got to make.


        We are moving on to the next phase of this process. We are trying to mend our hearts, love each other, and hope that we might still have a child. Our options are few, too costly, and none are guaranteed. Life is funny that way. Nothing you plan happens like you think it will. 

        I am here for anyone who needs me. I am okay to talk about it, and I am okay to listen to your stories as well. Just know you are not alone. 










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