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At the start of my cycle at the end of October, I went in for an ultrasound to confirm our suspicions that I possibly had an ovarian cyst. Sure enough, on my left side, there is an ovarian cyst about 4 times larger than the one I had rupture on my right side in January. It made sense to me, gave an answer for the random pain I had been experiencing for a few months, and explained why my cycle was so irregular for the first time. We didn’t get a blood test at the right time to confirm that it was a hormone producing cyst, but it was likely, considering the changes to my cycle. The cyst wasn’t quite large enough to require intervention; they wouldn’t go in and drain it or anything, because it was not large enough to cause an ovarian torsion. It would either rupture, or resolve, and we could keep an eye on it every few months to make sure it didn’t get bigger. I walked away feeling like I had a bomb inside of me. I was just waiting for it to rupture. Considering how painful the small cyst rupture was, I could only imagine how severe it would be with a large cyst.
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I tried to work through my options, in what was one of the hardest counseling sessions of my life. I cried through nearly the whole session. I was having so many breakdowns in my daily life, I knew I wasn’t well. But I didn’t feel brave enough to stop trying for a baby, to take the time to get well. Aidia turns 3 next month and I so desperately wanted to give her a sibling who she would be closer in age to. For both her and the younger siblings’ sakes. When she starts first grade, Jack will be in Jr High School. I thought it would be best for her and our final child to be closer in age; playmates, school mates. I just really dreamed of that for her. And if I stopped trying, on purpose, I would watch her grow older, and watch that gap widen. If it takes another couple years for another rainbow baby to arrive, assuming it’s possible, I would always be in so many different phases at once. I imagine Jr High, elementary school, and a baby at home. My kids love each other so much, but they don’t play together in the same way that kids closer in age do. Sometimes I watch them play with their cousins and tears well up. They get lonely, at home. They both always want Mom’s attention so that someone will interact individually with them on the level they want. That can be a high demand on me.
I had so much fun playing with siblings close to my age growing up. I don't know why I can't give my kids that. It's hard not to feel like it's my fault, but I always knew it wasn't. Until we decided that a break might be necessary. The idea of waiting on purpose felt like it had fault attached to it. Sometimes, at the school pick up line, I watch three kids pile into the same van, and my mind is blown that you could have all your kids close enough that they could go through school together. It actually breaks my heart. I’ve sat in the van and cried over it. Mourning this idea, this dream, that I wanted to give my family. I'm slowly accepting the fact, that even being able to have one more baby would be an absolute miracle, even if all my children turn out to be more than 5 years apart. I went through this same painful process during all the years we were trying for Aidia and Jack was getting older. I didn’t think I would have to do it again. I tell myself that as long as we have love in our family, all will be well, no matter what happens. But it still hurts. It’s a total paradigm shift. I explained to my counselor that stopping didn’t feel like an option, because time was against me. And I don’t want to be stuck in this phase for another ten years. We wanted to get our last baby here, and move forward.
I couldn’t keep enduring these mental breakdowns, though. My anxiety had reached a new level. I felt afraid of the moments I used to crave. Any time there was any quiet or peace, where I should take a moment to relax, or meditate, my stomach lurched and acid jumped up my throat. Because I'd “forgotten” for a moment to worry, constantly. To be on an endless loop of my worst moments, my fears, things I'm ashamed of, embarrassing days that were last week or decades ago.
I had developed a new kind of performance anxiety with the symphony which just pissed me off because literally i joined the group to do something good for myself. To feed my soul. I started playing percussion in 5th grade, I know what I’m capable of, but I felt out of control. Whenever I had a critical moment in front of a huge rehearsal crowd, my heart would beat as if outside my body, my hands sweat, I felt dizzy, I would visibly shake. I certainly didn’t have the confident calm that I needed to actually perform music. I would make silly mistakes because my body felt like I was running for my life. Fight or flight. The thing is, I've been in performance situations a lot in my life. I have a Bachelor's in music. I've done juries and ensembles and traveling performances. I've had great and terrible performances. What I'm doing now is relatively low pressure and fun. I couldn’t understand why my responses were so disproportionate. It was beyond frustrating. (As a side note to anyone wondering, I was able to get control of the new-found performance anxiety, and had one of the most wonderful experiences playing our oratorio to 4 sold-out shows. Rough journey, but happy ending. I’m so thankful.)
My counselor asked me if all these waves of panic I'm getting through the day, have like a "color" to them. I told her no, they are electricity. Literally a jolt in my heart and a simultaneous stab in the stomach- as if you were to look up from walking down the railroad tracks, and suddenly realize is a train immediately in front of you. But I get that physical lurch because I suddenly realize that I forgot to be upset or worried for a minute. It's a battle with myself. I couldn’t seem to get out of that cycle.
I told her my due date with Vincent was the next day, and it almost feels like your body remembers. She was discussing the possibility of EMDR. I was less than thrilled at that idea. I would rather not go back and revisit everything that could have possibly traumatized me. But I also know it's highly effective treatment. In the meantime, she wanted me to have more self compassion and recognize the pain I’m in. I agreed to try and affirm to myself something along the lines of “It’s ok to be ok” when I get those horrible anxiety pains, touch wherever it is that I’m feeling the pain: chest, stomach, etc. She counseled to try and let myself have peace occasionally. It’s ridiculous how hard that can be sometimes. We talked about how some of my biggest problems are totally out of my control, so I kind of turn obsessive about making the few things I am somewhat in control over perfect, but that's still not possible, which results in anxiety and depression. I get stuck in an obsessive loop in my head about how something should have happened or how I should do something in the future.
Naturally, I had a huge panic attack when I got home after counseling, where I couldn’t make my lungs take in air. It was basically at that point when Kevin and I decided, painful as it was, that if I wasn’t pregnant that cycle, that we would take a break, and focus on me getting well for a while. As much as we want to finish our family and put this whole phase behind us, it doesn’t help anybody if mama ends up in the loony bin and can’t even take care of the children we have. We wondered if I would even be able to handle a baby right now, if I had one. Admitting that felt like a personal failure, but sometimes the hardest and bravest thing to do, is to realize we are not superhuman, and there is a limit to what we can endure. It's a hard pill to swallow that I am worth enough to get help, even if it means putting everything else off. It’s not quitting. It’s not selfish. Even if it feels like it.
I don't write about it often for his privacy, but for several years Jack has had problems that require an extreme amount of intervention. Special needs that often drain us, financially, physically, emotionally, mentally- trying to make sure he is taken care of. Some weeks are harder than others, but it is such a strong underlying current in our day to day lives, that any little thing can suddenly become "the last straw" where I feel incapable of dealing with anything else that day. And yet feel sick to my stomach about the situation all night, and can't rest.
Any parent who has a child with special needs and required interventions will tell you the same thing. It's more than we can handle, but we continue to handle it every day. Because that's what parents do. But putting our dreams of finishing our family on hold for my own sanity felt unimaginable.
When life gets really hard like this, and you feel defeated, you realize life breaks you down for a purpose. I felt ready to accept basically anything, if I KNEW it was the right thing. The hard part is, you rarely know for sure what the right choices are in life. If God told me we weren’t supposed to have any more kids, I could probably accept that answer eventually. If He told me it would take five more years, fine. At least I would know. It’s the not knowing that is hard. And if the answer is “pause and get some help for yourself,” that answer is nearly impossible to hear. Moms don’t put themselves first.
My very wise friend said when you feel your mental health deteriorating like this, and you're putting off getting help, it doesn't just stay where it is and wait for you. It continually gets worse. Putting a dream on hold in the pursuit of wellness sounds worthwhile, but I wondered how much a break would really help me, if I truly felt sad the whole time.
I couldn’t help but consider the situation the manifestation of a tender mercy. For so many years, I told God I would rather not be able to get pregnant if the baby wouldn’t survive. Just don’t let it happen until we can conceive a healthy baby. And as hard as it has been, I feel thankful for that. Maybe He’s protecting me from an 8th loss. From a psychotic break. I think it all comes down to fully, surrendering our will and trusting Him. If we are meant to have a 3rd child, they will come, somehow, someday. Just like Aidia did. I can’t explain her, her birth makes even less sense now than after she was born. When I thought we could explain how it happened. She’s purely miracle. Being able to accept His will brings peace, even in pain. I hope I can deepen my connection with God to be able to be led where I need to go. And for life to be happier despite challenges.
Just when I was settling my mind down, and becoming as content as I could be with our decision to move forward, I started feeling really sick at work one day. I was down, because the two coworkers I was working with that day had BOTH announced they were pregnant. What are the odds of that? I was already struggling so I felt like the “ok it’s official, the universe hates me.” The baby conversation was constant through the day. Painful. And the cramping I was feeling kept getting worse, along with the nausea. I was sure it was the cyst. But my coworker convinced me that cramping and nausea were indeed pregnancy symptoms, and I should go home and take a test, just in case. I didn’t want to, because I was settled with our plan to move forward once my period showed up. But in the end I agreed. I went home in the afternoon and took a test. It wasn’t first thing in the morning, which is when you are supposed to test when you test early. I didn’t do a “four hour urine hold” to let any hCG build up, so I was sure it would be negative. And just as I was about to toss it in the trash, I noticed the faint second line that showed up. It was very fine, very faint, but still a line. Not stark white like the other negative FRER tests I had taken. My heart about fell into my feet. I was totally shocked. I wasn’t confident with calling it a positive test, because of how faint it was. When Kevin got home that night, he could see it too. So I flipped my perspective back again. Ok, here we go, now it’s actually happened right when I gave my ultimatum, and I’ve got to be ready to be pregnant now. With my other pregnancies, when I would get a faint line like that, it would be noticeably darker by the next day. So we would know for sure by the next morning.
The next morning came, and I took another test. But it wasn’t darker. It was, at most, the same as the first line. This was concerning to me, but after all, it had been less than 24 hours, and urine dilution matters a lot at that stage. And still, both tests had lines. I was a little nervous at the idea that I was possibly having a chemical pregnancy, basically where a pregnancy tries to take, but never grows. You could get a positive one day, and a negative the next, when that happens. But I still couldn’t be totally convinced they were positive. What if they were just really bad evap lines? Those days, I was totally in limbo. Maybe it was just too early.
The third time I got that same, very faint line, I decided to call the clinic. I didn’t know what was going on. I couldn’t call them positive, but they weren’t white negative tests either. They definitely weren’t getting darker. The clinic sent me in for blood work. I felt confident that my number would be low, since it was early, but that we could track it through bloodwork and see how everything was doing. I was absolutely gutted when the beta came back, not low, but negative.
I had been told by two separate friends, that their doctors had said cysts can cause little lines to show up on home pregnancy tests. I was starting to wonder if that was what was happening. My nurse had never heard of that before, but I knew whatever lines I was seeing were not accurate. Because I saw that little line just two hours away from my blood test. Even with a chemical pregnancy, evidence should have been stronger on my blood test than a urine test, since it was such a short amount of time between the tests.
So we accepted those extremely faint lines we were seeing were either evaps, or caused by the cyst, but weren’t really positive after all. And we shifted our mindset yet again. I wasn’t pregnant. It hurt all over again, but I was relieved at the same time, because that would not have been a promising start. It was time to go back to my doctor and get some help, start on my SNRI again.
It was a difficult appointment with my doctor (who I adore.) My mental screening was poor enough that they had me do a second, more in depth screening related to suicide. I guess that was validating that I needed to be there. My doctor agreed it was time to go back on the meds I had been avoiding since we had been trying for a baby. But he also wanted to convince me that if we were determined to have another child, I could stay on my meds. Some people just have to. But I am not most people, my risks are not most people’s risks. Especially with neural tube defects. I couldn’t imagine putting anything in my mouth that I knew might possibly harm my baby while I was pregnant. I know the common side effects are that the baby has to withdraw from the meds after being born. They can shake and be colicy, maybe struggle learning to feed, or have minor breathing problems. Even though that’s not the most serious of side effects, I can’t imagine doing that to my child.
He basically told me, if I had a child born with a birth defect, we would never really know if it just happened, or if it was due to the medication, since the inherent risks are about the same, and the question I needed to ask myself was- could I live with myself knowing it could have possibly, though not likely, been the meds? No. I don’t think I could. Some studies say SNRIs double your chance of miscarriage. Other studies concluded there was no added risk. But studies also agree that being clinically depressed highly increases the chance of miscarriage. So what is a depressed mom to do? Risk the baby by not taking meds and staying depressed? Risk the baby by taking meds that might help or might harm? It’s an impossible choice.
I wasn’t on antidepressants for any of my pregnancies, and I survived them. But I do wonder if I was also adding risk by not staying on them. Which is why we were taking an official break, so I can be on my meds long enough for them to help. They are the hardest type to get back off of (as my doctor reminded me.) I knew that, since I went through that hell last time I stopped them. Sick as a dog for two weeks. This is the reason I didn’t just try to take a break and take the meds for a month or two, it needs to be worth going through the process. My counselor advised me to try not to set a timetable for it, rather, have goals or ways of measuring what “feeling better” looks like. I do have a lot of those landmarks to identify when I’m doing better, but we are thinking it will need to be at least a 6 month break.
It’s hard not to blame yourself for losses when the first thing doctors would say to me was “maybe I should have started my Lovenox injections sooner, or the aspirin sooner, or hormones later, etc.” They make it sound as if it’s in your control. Causing huge amounts of anxiety about anything I consume while trying to get pregnant, or during pregnancy. Can I have any caffeine, is this prenatal ok, what time should I take my blood thinners? No one ever sat down and told me “This is not your fault. Nothing you could have done would have prevented this.” I just can’t take risky medication while pregnant after what I’ve been through. I love my doctor, but could a man ever really understand what it’s like to carry around something so precious and so fragile within you? I’ve already lost 7. No more extra risks.
I picked up my meds, ready to press forward. But that night, I felt crampy, nauseous, and was nervous about taking the meds since I still hadn’t started my period. I decided I would take an internet cheapie test, since I had never seen a fine false line on one of those. To ease my mind. So I took the test at night, no urine hold, anticipating the negative result would comfort me. It was a dark positive. I stared at it, refusing to believe it. Oh my gosh, it really was just too early before. This is for real. I wondered if it was a bad test, so I took at second one about 15 minutes later. It was the same, if not a little darker.
We again switched our mindset. Ok. Here we go. I was so unbelievably happy. But the number of plot twists felt like too much to handle. This was in the middle of opening week for symphony. I had a run through rehearsal, a dress rehearsal, and four shows within a week. I was there at least 4 hours a night, and one day was about ten hours, and I tried to deal with what was happening at home in the mornings.
The next morning I took another FRER, expecting it to light up super positive since the cheap ones did. Can I even explain my emotions when it was very clearly negative, not even a hint of a line? I had to get off this roller coaster. I couldn’t take it anymore. So I took another cheap test, also negative. In desperation I called my clinic, thinking I must be having a chemical pregnancy. They sent me in for blood work. I was expecting low numbers, which would probably drop to zero over the next few days. Instead, it was negative. So, to recap, faint barely there lines followed by negative blood work a few hours later (Wednesday). Then two dark positive tests late Thursday night, followed by negative tests and negative blood work early Friday morning. So we knew with two negative betas less than 48 hours apart, it wasn't a chemical.
So how do I explain those two dark tests? Turns out, the brand Wondfo had recently recalled more than 60k tests, for showing dark false positives, even if they were dipped in water. I left a scathing review on Amazon. I cried. Honestly the mental anguish of those days. I had been pulled back and forth, I was angry, I was defeated. And if there had been any doubt in my mind before, I knew now. I can’t do this anymore. I started my meds. And finally two days later, my period showed up. WHY did this have to happen? I had accepted it wouldn’t happen that month and was ready to move forward, but instead I had to have one last heartbreak.
When we decided “that's it, that's all we can take for now,” it felt like a huge weight was lifted off my shoulders, so much extra stress gone. But at the same time, this immense sadness settled on me.
We've been through about one year and suffered one loss since deciding to have a third and final child. We went through 5 years and 6 losses before we were blessed with Aidia. I'm going to have to be patient through the sadness, and not put my body and mind through more than I can tolerate. Patience can pay off. My body needs a chance to heal. I would rather start a pregnancy in a healthier state.
Whenever we are ready to try again, I will call and schedule a follow up ultrasound to check on any cysts, and will have a repeat uterine biopsy done to check for any recurring endometritis. But until that time, I can focus on my two wonderful and amazing children that I already have. They are the sunshine in my life. My job. My role in the Symphony. Trying to improve myself, with better sleep, better exercise. Have some happy around. I know I will still feel sad. I wish I could say I will be content with my current family size, and we can be done for good, but I would be lying to myself. We feel like there is one more baby that needs to come. But at least I will know what the plan is for now, and why.
