That’s what Ashley and Scott thought before tumbling down the hole into the unfamiliar and scary world of secondary infertility, fertility medications and genetic disorders
Story written by Ashley O’Flynn
After Scott and I had been married for about four months and I was nearing the end of my Bachelor of Science in Nursing (BSN) program, we decided to stop preventing a pregnancy. Scott was a little nervous I think because let’s face it, we both assumed this was going to happen quickly and we would be welcoming a new bundle of joy in no time.
Months pass – no positive pregnancy test.
Over a year later in 2017 when I moved to a new nursing unit at work and we were still not pregnant, I decided it was time to maybe go to the OB to see what he had to say. He didn’t run labs. He didn’t ask many questions. He just put me on clomiphene (brand name Clomid).
I was alone with my older daughter, Natalie, at this appointment as it was a last-minute decision and I was scared. Scared that I was being put on this medication that I knew nothing about. Scared that I was even having to take “fertility medication.” I remember calling my husband with a shaking voice as I told him what the plan was from that appointment.
So, we did the cycle of Clomid: Day 21 progesterone level testing came and the level was low. We increased the dose and again day 21 level was low. I remember increasing the dose until we got to 150 mg and then I refused to increase to anything higher as I was worried the dose was too high and we didn’t even know if it was doing anything.
Also being a nurse, I did lots of my own research and noticed that the progesterone on a typical 28-day cycle would be highest on day 21. But for me, whose cycle was not at all 28 days – it wasn’t abnormal for me to have cycles that were 45+ days – my progesterone was probably not peaking on that “magic day” because I wasn’t the typical “normal” cycle length.
A last round of Clomid before the gut punch: “it’s time you go see a fertility specialist”
I remember voicing my concerns to the OB I was seeing, with the nurse and doctor brushing me off and telling me I didn’t know what I was talking about. It was then that I said, “Enough is enough,” and made an appointment to see another OB in the practice.
I sat down with her and voiced my concerns that I didn’t feel heard and that my concerns were brushed off without even any attempt by the doctor to explain his reasoning. She listened to me and heard me out. It was refreshing.
We decided to do one last round of Clomid at the dose I was comfortable with and see what happened. When – as I’m sure you expect – that round didn’t work either, we made another appointment to see my new OB. It was at that time she looked at me and my husband and said the words I expected to hear but that also felt like a blow to my gut … “I think it’s time you go see a fertility specialist.”
She wrote down the name of the doctor she recommended, Dr. Peter Lu, and I teared up out of nowhere. I felt so defeated and lost.
Battling secondary infertility, IVF cost concerns & insurers
What had happened so easily and quickly the first time was now feeling like it had just been tucked on a shelf I could never seem to reach. This is how secondary infertility, which is infertility after a previous successful birth, affected me. I am the financial one in our marriage and all I could think when I heard “fertility specialist” was IVF (in vitro fertilization), needles and money.
Money we didn’t have as we continued to pay down debt from school and debt from necessary purchases for our home. My anxiety, which usually is pretty manageable, went through the roof as I wondered what this was all going to cost. Little did I know that God had a plan …
Once I gathered my emotions and decided we would figure out the finances aspect of this secondary infertility as it happened, I made an appointment. After I made the appointment for February 2, 2018, and the doctor’s office informed me, they were not “tier 1” (the best coverage for my insurance) and that I would have a deductible to meet and then a lifetime max of coverage, I decided to look at my benefits closer.
While our medical team develops a unique plan for treatment, our financial counselor is committed to helping patients understand costs and financing options in their journey to start a family.
I know now just how lucky I am to have infertility benefits at all in my health insurance and this, I feel, is a part of God showing me that he has us through this entire journey. The tier 1 infertility specialists were either in Baton Rouge or Lafayette – 1 to 2.5 hours away. I emailed my HR at work and said, “So I have this appointment, but you’re telling me that when there is a perfectly capable doctor within 30-45 minutes of me that I have to go further? That isn’t right.”
I fought for an exception to their preferred doctor and WON! But that doesn’t mean it was easy at all – the insurance company still was telling me I didn’t have infertility benefits at all when clearly, I could see the secondary infertility benefits on my online benefits account. I finally got in writing the day of the appointment that this doctor’s office was in fact being covered as tier 1, and that I did have 100% coverage for the work-up and diagnostics. I felt a sense of relief.
Searching for genetic disorders that can cause secondary infertility puts their minds at ease
We went in for the appointment and I had a ton of labs drawn, and we went over my entire history and Scott’s. Dr. Lu sat there and listened to all of my concerns and all of my worries. He answered the same questions probably a million times without any hesitation. Dr. Lu offered us the Counsyl Foresight Screening.
I opted to get it done just so we could know if there was anything we needed to prepare for. My test came back as I was positive for prothrombin thrombophilia – in other words, I have a genetic mutation on my prothrombin gene that makes me more apt to have blood clots. Apparently, it is super common and most people who have it don’t ever have any issues.
I also had an unknown carrier status for a serious genetic disorder, and so they advised my husband needed to be tested. We decided to go ahead and complete that as well, knowing that his insurance probably wouldn’t cover it but with the knowledge that we would just make a payment plan and pay it off. His carrier status came back fine. We didn’t have any high-risk carrier statuses, which put my mind at ease.
We did make follow-up appointments with hematology just to see if we needed to do anything to treat my prothrombin mutation. We were told “it shouldn’t affect anything especially since you’ve already had a healthy pregnancy.” With that we moved forward …
Clomid again, cervical mucus check and on to IUI
We formulated a plan to try the Clomid at the highest dose and see how my body actually responded by doing ultrasounds and labs. I had my concerns of the dose being higher than the recommended max dosage, but Dr. Lu explained how every patient is different and that the max for each person is actually at times higher than the max recommended.
I felt at ease knowing we were going to be closely monitored, not just one lab value on a single day in my cycle. Before we did the cycle, waiting for the correct cycle days, we did a “post coital test” to check my cervical mucus and to ensure that wasn’t the issue. That showed my husband did have viable sperm and my mucus at that time was fine.
Once we had cycle day 1, we did the Clomid for cycle days (I think) 5-9. We did another post coital test. This time the test showed my mucus was not good and that it was hurting my husband’s sperm. Dr. Lu informed us that our only option for being able to use this cycle for a possible chance of pregnancy was to do IUI (intrauterine insemination). So, we bought the Pregnyl trigger shot for $125 and waited for the right day in my cycle to do it.
Infertility wasn’t your plan. Let’s make a new one.
Louisiana’s first fertility clinic.
I chose to do the shot myself rather than come in for a nurse visit for them to do it. The morning we were instructed to do the trigger shot, I had Scott give it to me in my quad muscle as they instructed we could do. NEVER AGAIN! I went to work a 12-hour shift and by the end of the shift I was barely able to walk. I was limping it hurt so bad!
The “no NSAIDs” went out the window because I was in such intense pain I couldn’t sleep! We did the IUI and I went home to start the 10 days of waiting to be able to test. Meanwhile as I was instructed, we did progesterone, which as the nurse told me the possible side effects I thought, Oh great sounds like symptoms of a stroke! I even called my charge nurse for the next day and told her please don’t float me because I am hearing I may seem drugged while I take this! It made my thinking so cloudy and I felt like I was floating through the day. We prayed and prayed for the positive test.
It didn’t work. The tests were all negative. I was super let down. I called as they told me to and told them it was negative. They told me to test again in two more days and if negative, to stop the meds and let them know when cycle day 1 came again.
Switching to letrozole, dealing with ovarian cysts, using progesterone
With the knowledge now that the Clomid made my body “hostile” to sperm, we moved to a new medication, letrozole (brand name Femara) in April. But before we could do that, I had a brief pause placed on our cycle due to some ovarian cysts that were seen on an ultrasound. I had to take birth control pills for about two weeks to ensure the cysts went away before we started our next cycle with the Femara. While we did the Femara I took 7.5 mg on cycle days 3-7. I had to also do vaginal estrogen, which was super weird seeing this blue residue on my underwear!
Since I had such crazy side effects from the oral progesterone the last go around, we opted for vaginal progesterone, which was costly but once again God smiled upon us and with the help of a coupon and insurance coverage, we only paid about $70 for the script. The timing of when I was ready to ovulate did not fit well with attempting an IUI this cycle, so we did the trigger shot – this time I worked up the courage to give myself the shot in my stomach – and had timed relations.
Nope – that 10 day wait again yielded the dreaded negative test. I was upset to say the least.
Through fear and anxiety Dr. Lu took the time to remind me that with secondary infertility, “someone has to beat the odds.”
By this time the next cycle would’ve fallen when we were set to go on vacation in June. I was overwhelmed and mentally exhausted. I told them when I called with the negative test result that I needed a break because I was just mentally feeling way too stressed out. They understood and said just call when you’re ready.
We went on vacation for Natalie’s upcoming 7th birthday and sort of also for our 4th wedding anniversary the first week of June. It was much needed time away from the hustle and bustle of work and scheduling blood draws and ultrasounds. According to my Glow app, I was supposed to ovulate while we were at the beach in Clearwater, Florida. But let’s be honest, the app wasn’t ever right before so I just shrugged it off. We enjoyed our vacation but were happy to be back in our own beds at the end of the week!
A POSITIVE pregnancy test, and ultrasound pictures
A few weeks later my period was late but this wasn’t anything new. I didn’t think anything of it but decided when I came home from working my shift one Saturday to just for laughs take a pregnancy test. Never in my life did I think it would come back POSITIVE! On June 23, 2018, the test came back Pregnant. I was in utter shock. In fact, I didn’t believe it and took another one the next morning before I went to work just to be sure it wasn’t all a dream. It wasn’t.
I immediately let my charge nurses know because I am a transplant nurse and there are certain medications I now could NOT handle. Everyone was excited for me as they had all been walking through this secondary infertility journey with me. I waited a few days and then called Dr. Lu’s office and let them know I had gotten a positive pregnancy test. They immediately brought me in for labs and ultrasound.
My levels were good but I was very early in my pregnancy and so the ultrasound didn’t show very much. I had labs drawn a few more times and everything was progressing like it should according to the labs. Dr. Lu released me to follow with my OB. I made my first OB appointment, which confirmed the pregnancy yet again. The ultrasound at the OB’s office didn’t yet show a heartbeat, but I was measuring very early. She had me come back for a close follow-up a month later and on that ultrasound, we saw and heard the heartbeat. Scott was there and I was so happy to leave with the ultrasound pictures.
Everything was progressing and we even did the 10-week genetic blood work, which all came back perfect and showed we were having a baby BOY! I found out before Scott and went out of my way to get some friends to help get us cupcakes made to announce the gender to Scott while he was working the night shift. It didn’t go as planned but Scott was excited to know he was getting his son that he’s always wanted.
We painted the baby room and bought some newborn clothes, and Scott’s mom bought all kinds of things for her new grandson! We did a small gender reveal with Scott’s family because it was super important to me to announce it to his grandma, who had heart issues and we didn’t know how long she had left with us. Everyone was super excited!
The words no expectant mother wants to hear, then my full-on panic attack
September 4, 2018, we had our routine 14-week prenatal appointment. The LPN that always completed the baby’s heartbeat check with the Doppler had trouble chasing the baby’s heartbeat, but this wasn’t abnormal. Our boy always was stubborn and hid under my heartbeat. She was like, Darn, we’ll get another ultrasound! I didn’t think anything of it.
We had Natalie with us since there was supposed to be some tropical storm coming and they cancelled school for all the kids. The doctor walked in and we did the ultrasound … she was intent on the screen and very, VERY quiet. It scared me. I said, “Dr. Thomas you have to talk to me. What’s wrong? Please talk to me!” That’s when she uttered the words no expectant mother or couple wants to hear … “I can’t find the heartbeat.”
I immediately went into panic mode and felt like I couldn’t breathe. I started crying and hyperventilating and was like, “Sit me up. Sit me up. I can’t breathe.” Of course, Natalie is hysterical and crying as are both of us. The doctor left the room and while she was gone Scott called his mom and dad to come up.
I called my charge nurse and through sobs and hysterical tears I told her what just happened and that I needed to get taken off the schedule for the upcoming weekend. I couldn’t even process what was going on. Dr. Thomas came back in and asked if I would let her scan my belly once more just to be sure. She did and confirmed she still didn’t see the heartbeat. I asked her to please take Natalie to the nurses while we discussed the next steps.
I couldn’t process anything and couldn’t even think straight. She talked to us about our options but I was too overwhelmed. I told her I want to go home and I’ll let you know once I process this. I got home and my full-on anxiety and panic attack hit. I couldn’t sit still. I couldn’t stop crying. I couldn’t breathe. I didn’t see the ultrasound screen at all and so to me it wasn’t real yet.
I sent her a message and said, “I need something for anxiety and I need another ultrasound where I can see the screen because until I actually see the screen, this isn’t real.” She was so, so wonderful and went above and beyond and sent me a prescription to the pharmacy and scheduled me for an ultrasound the next day. She also went ahead and scheduled the D&C [dilation & curettage] at the hospital just because there was almost NO availability for the OR, and she didn’t want me waiting any longer than I had to. Scott’s parents came up to be with all of us.
The crib Scott was going to build becomes a beautiful memory box
Scott has been into woodworking and building furniture as his “side job” and hobby. He was building the crib for our baby boy’s room … well of course now that isn’t happening and he’s upset, so as soon as we got home I took Natalie and our dog, Delta, on a walk around the neighborhood so I could get some fresh air and clear my head.
I came home to Scott in the garage cutting wood. He said, “I was building a crib for my son but now I’m going to build something else for him.” Scott built this beautiful memory box for our son. It is now front and center in our living room along with a Willow Tree angel holding a baby boy that my mother-in-law got for us.
Scott, who doesn’t post on social media hardly at all, posted this picture along with the following:
“There is no way to fully describe the loss, agony, and heartbreaking loneliness my family and I have been through since Sept. 4th. As I stood next to Ashley at the ultrasound that day, I gazed at the image of my son on the screen with a grin of joy on my face. Internally, I envisioned all the happiness in my future. The thoughts of guiding my boy into becoming a man and passing on so many skills filled my heart with unimaginable pride. I never imagined how quickly it all could and would change. The words, ‘I can’t find a heartbeat,’ will likely be etched into my memory until I once again get to see my boy.
“From the moment Ashley and I learned we were pregnant, I knew I would build the baby’s crib. I would push my ever-growing woodworking skills as far as I could. I sketched out the design and sought out the right wood to use. On Sept. 5th, I stood in my garage with all the wood for the crib stacked behind me all prepped and ready to be transformed. In front of me, laid across my sawhorses, was a single spare board of the same wood. I wept as I began working on that piece of wood, intent on building something for my son. With my tears soaking into the wood, I began transforming it into this memory box.
“With this box complete, I will now continue working on the crib. Coping and healing continues with each passing day, and together Ashley and I will pray to be blessed with another child.”
My blood pressure tanked after the D&C
Once I had gotten my second ultrasound and saw just how perfectly formed our son appeared on the ultrasound, I began preparing for the D&C that was scheduled for September 6, 2018. We were scheduled for 4 p.m. and we got there, and the nurses were amazing. They were so caring and thoughtful. I am high anxiety and so I begged them to please let me wake up in recovery with my husband there. They agreed that as long as I was stable and that there was enough room, they would allow him to come back. I opened my eyes and immediately asked for him.
The nurse was amazing and went and got him as quickly as she could. I asked to sit up and then that’s when it was realized I was bleeding – a lot. My blood pressure tanked and I was immediately laid back flat. It was then that I began hurting and feeling dizzy. I open my eyes again to see blood being pressure bagged into my IV.
I panicked and began trying to get myself comfortable but in the process my movements were causing more and more bleeding. The nurse told me I needed to stop moving because I’m bleeding and may need to go back to surgery if they can’t figure out where it was coming from. The doctor came back to my bedside and they did an ultrasound to find if there was a major source for my bleeding.
With no source seen, they quickly gave me pain medication, some anti-anxiety medication to help me calm down, and they gave me a medication that helped the bleeding stop. My heart rate remained high, so in order to avoid ICU they put me on telemetry (heart monitoring) and brought me to a room. My blood pressure remained low and I ended up spending about three days in the hospital while they monitored me.
I am so lucky to have had an amazing husband and family who never allowed me to be alone while I was in the hospital. I have a great work family as well. My work family texted me and checked on me constantly! They kept me sane and made sure I knew they were thinking about me. I just cannot imagine if I hadn’t had them. They also made the return to work so much better! I got lots of hugs and even to this day when I need an extra hug or a few minutes to cry because something triggered my emotions, they are there!
During my time off from my loss, I felt I needed some extra support as we walked through secondary infertility. I started listening to podcasts, specifically the Sarah’s Laughter infertility podcasts, and found one story that stuck out tremendously because it sounded exactly like my own. This woman, Kim, happened to be the leader of the online infertility support group. I immediately reached out to her and joined the group.
Kim was there for me with every positive pregnancy test and subsequent losses. She texted with me often and kept me “sane.” I slowly took on leadership responsibilities in the group and now co-lead both the infertility online group and the PAIL (Pregnancy After Infertility and Loss) online group. We meet twice a month online and it has been the best thing I’ve ever done for myself. If you’re interested in joining don’t hesitate to reach out to me via Kim’s support group email ([email protected]) or my own email ([email protected]).
While thinking about IVF and trying to conceive naturally, another positive pregnancy test
For the time being, we allowed my body and mind to heal and we were just trying to make it through the holidays before we would go back to Dr. Lu and figure out what our next steps were … we were just taking this one day at a time and letting God take the reins for now.
We continued to have multiple “chemical” pregnancies during our time with Dr. Lu both with injectable medications and “natural miracles.” We were told IVF was our only option of having a successful pregnancy and that the odds of me having a successful natural pregnancy were less than 10%. It took me a lot of tears and a lot of processing because in my mind my line in the sand of secondary infertility was “I will never do IVF.”
We left that appointment and I felt like there was no way we would ever have a child. We decided as we waited and prayed on what decision we should make about IVF that we would just continue to try naturally. October 30, 2019, brought us the most unexpected news – a positive pregnancy test. Cue the anxiety and fears … I didn’t believe it was true.
June 23, 2020
I took a digital test and it again was positive. I let Dr. Lu know, and we did beta HCG tests (human chorionic gonadotropin, a hormone that can indicate pregnancy) and ultrasounds and followed until we saw a heartbeat. Through fear and anxiety Dr. Lu took the time to remind me that “someone has to beat the odds.”
We did baby aspirin and Lovenox for my prothrombin mutation and although we had some minor issues pregnancy wise with pre-term contractions and an amniotic band, on June 23, 2020, we welcomed Elise Marie to our family. And I cannot thank Dr. Lu and the nurses enough for all the support and hugs they gave me through our entire journey.