Pressing Pause

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I was close to hitting rock bottom. Mentally. Which, by the way, is a hard thing to admit to the internet. It wasn’t just the fact that we were trying to conceive and I had to be patient about it. It was taking hormones for two weeks out of every month and then stopping them suddenly. Temping every morning, two LH tests a day, documenting all of it. Stopping my medications for migraines, sleep, and anxiety for a period of time every month, just in case pregnancy occurred. It was trying to get my thyroid back to a healthy number with my new, higher dose of thyroid medication. It was the fact I’d been off my antidepressants for 11 months, and got worse every month. It was trying to test for pregnancy early, according to days past ovulation, not a missed period, in case we needed to adjust the progesterone dose right away, but not knowing for sure when ovulation happened because of multiple peak LH tests. It was my cycle being all over the place for the first time in my life. It was having no energy to function or cope with daily life or stress. Kevin and I had the discussion often, where is the tipping point? When does it get bad enough that I have to stop? I thought I was close to the breaking point already, and then last month happened.

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.

cyst

The clinic said while they wouldn’t do any interventions with an active cyst, like prescribing ovulation meds, etc, but I could still try to get pregnant naturally. It might just be more difficult, and harder to track my cycle. Adjusting to that news was stressful, but to top it off I had insurance issues and was charged over $600 for the ultrasound, despite having already met my deductible. The hospital had coded it for infertility (even though I do not meet that medical criteria) instead of diagnostic imaging. I’ve spent hours on the phone trying to get it re-coded, and it’s in the review process now.

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.

New Challenges

It's something we've always said, when looking for the silver lining. "If we figure out the cause of the losses, at least we can get pregnant on our own and don't have to worry about that part." 8 of my 9 pregnancies were conceived the first month trying, and one was the second month of trying. That's a pretty telling statistic. With a history like that, you know you're going to be pregnant if you try to be. My worry was always if the baby would survive or not.

Because of my history, when I last wrote that we were gearing up for a baby, after treating the endometritis, I fully expected to be back on the blog writing within a month, hoping that the treatment would allow for a healthy and long gestation. July came and passed, and I wasn't too disappointed when we didn't fall pregnant. We knew the timing may have been off because of when we met with my doctor and got the “go-ahead” to conceive. it was a close window. Although I was still a bit surprised.

I actually was so sure that we would be pregnant, because in the past it always happened right away, that I started to have some pretty bad anxiety. I would suddenly remember that I might be pregnant that month, and my arms and legs would literally go numb. It was like a “going into shock” kind of response. I think it's just that fear manifesting itself physically, the flashbacks that I have from losing 7 different babies. You feel like once you're pregnant, there's no way off the roller coaster ride. You're at the top of the hill, and there's no escape other than to follow the path straight down. I talked to my counselor about it, and worked through it the best I could. It's almost impossible not to feel like loss is inevitable. And if I was pregnant, I knew it wouldn't be possible for me to just not love a baby to avoid getting my heart broken. I bond right from the start.

I felt like I had equal and opposite fears. Fear one being that I will never have another healthy baby and will need to give up for sanity's sake. (But we only want one more. And I'm only 29. So really the question is, how long can I push it until I have some sort of mental lapse?)
My opposing fear is that I do have a third child, and have no idea how I could keep my job, or how we will manage. But I try to trust in God to work out that part. It always has so far. 

 

So as I said, July passed and we were set on August being the month for good news. Halfway through the month I stopped my medications for migraines, sleep, and anxiety. And started supplementing hormones. Which honestly is so difficult. Hormones make you crazy anyway, but without taking medication I have an extremely hard time sleeping, dealing with migraines, and not having panic attacks. And yes I know there are many natural remedies. I do the best I can with those. I go to counseling; I practice breathing and relaxation. But nothing works as well as normal medication to manage my struggles. Have you ever tried just breathing through a migraine? It doesn't work very well. Fear of hurting an unknown, unborn baby keeps me from doing a lot of things that help me. Hot baths, caffeine, etc. I have more anxiety than is normal for me when we are trying to conceive, but after all, after every loss I've had, the doctors discussed what I did or didn't do early in the pregnancy. So I have to start working to preserve a pregnancy before it even exists. 

 

August passed. and I was still not pregnant. At that point it felt, weird. But it would be silly of me to be worried after only trying a few months. September rolled around and I started ovulation tests to see if I was ovulating early or late or something. Using the digital tests I got days and days of high readings, but never a peak read. I did my best keeping track of everything, and held out hope that it would be the month. I didn't want to wait too long after the antibiotic treatment to conceive- worried that the endometritis could come back, or flare up. Just when I was feeling fairly confident that September was our month, I started my period 4 days EARLY. For the first time ever in my life. I started to worry. That seemed like a luteal phase defect. Why was I not getting pregnant, for the first time ever? Why was my cycle irregular for the first time ever? I confirmed with the fertility clinic that the supplementary progesterone I was taking 2 out of every 4 weeks would not be interfering with my cycle. 

 

So October, our 4th month trying, I started temping. Doing basal body temperatures is a lot of work when you combine it with taking LH tests twice a day mid-cycle, supplementing hormones morning and night, and taking a vitamin regimen. And stopping all your helpful meds. My BBT cycle looked accurate, up until the time of ovulation, it started slowly rising and then dropping all over the place. I couldn't see any confirmation of a healthy ovulation. Granted, I wasn't sure if my temps were accurate since I toss and turn at night, can't take them at exactly the same time every morning because of work, etc. But I called the fertility clinic to see if they wanted to do an ultrasound to check for a cyst, or to confirm if ovulation actually happened. 

 

I spoke with the nurse and she told me they don't rely on temping, because they have blood tests and hormone readings they can rely on. I'm hoping my BBT chart just isn't reliable. If I did an ultrasound mid-cycle, they wouldn't be able to tell if it was just the corpus luteum, or a different problem-causing cyst. So I was told if my current cycle didn’t take, I could get an ultrasound on cycle day 2 or 3, to see if I have a cyst. Then again on day 12 to see if there's an egg there, to see if I'm even ovulating. Fortunately, I'm already on progesterone, which is how they treat a luteal phase defect anyway. Of course it's better and more accurate to have the ultrasound done at the fertility clinic, but my insurance doesn't cover it there. So I'll need to do outpatient imaging at the hospital and hopefully it's good enough to tell them the info they need.

As the month came to an end, and my BBTs were soaring and dropping everywhere, I talked to some of the ladies in my support group. They suggested I get a laparoscopy for silent endometriosis, which makes it hard to get and stay pregnant. At this point I believe I basically have every diagnosis. One lady said she would lose 4-5 babies between every live birth, and finally doing IUIs somehow was much better, and brought her a couple healthy babies. But I could never afford a laparoscopy or IUI right now. There's no way.

I can’t control ALL these factors. Every year I feel like we get two new diagnoses. So far we’ve dealt with Leiden factor V, MTHFR, folate problems, low progesterone, Hashimotos, DNA fragmentation, endometritis, and now possibly a luteal phase defect? Or maybe just late ovulation? It’s so overwhelming. How do people have babies on accident?!

When my period hadn’t shown up today, I took a HPT and was very surprised to see a barely there faint line. I kept thinking I was imagining it, but every time I looked I could see it right away. I was worried though, that it was so faint, that maybe I got a test with a bad “evap line” which is where the test looks positive but it’s just because it was wet and then dried, leaving a shadow more than colored dye.

Well I wanted to know if it was real. I showed a few friends online and everyone saw a line worth going and testing. So my clinic ordered a beta HCG, TSH, and progesterone level.

I was gutted when the HCG came back at 2. Anything less than 5 is considered negative. But I still felt in limbo. In 2014 I had a beta come back as 2.2, that 3 or 4 days later was in the mid 80s where it was obvious I was actually pregnant. But after my loss this March, my beta gradually went down back to 2 as they monitored the completion of the miscarriage, so I could see that result still being negative too. After a few hours, my progesterone came back at only 7.6, despite two supplements a day. So I know it won’t be long before my cycle starts again. And we will move on to doing the ultrasounds to see if we can figure out what is going on.

I don’t know why suddenly I’m not getting pregnant for the first time ever. Now don’t get me wrong, I know 4 months is NOTHING when it comes to actual infertility, and I’m not trying to be insensitive to that. But also understand, we’ve been trying to have a houseful of babies since we first started trying in 2010 after we got married. That’s been a long time. And we did have Jack right away, followed by our losses starting the following year. I’ve been dealing with my personalized version of infertility my entire 20s. 9 pregnancies later, and I have an 8 year old and a 2 (almost 3) year old. We will never have a houseful of babies like we imagined. We are changed people, and want one more before we call it quits on our own terms. God willing.

It’s been a hard day. But mostly I was upset to find that my thyroid has been slowly declining this year. After my number today, I probably need to go on a higher dose of thyroid meds. Maybe that’s why I’ve felt like crap lately.

My arms ache to hold a new baby of my own. To complete our family. I don’t know why we’ve needed to have and treat so many different problems. I just hope we can overcome them one last time, and complete our family as our own choice instead of medical issues forcing that. I’m still learning that we really don’t have any control. It’s hard to completely relinquish that control, to give it all to God and say “I’ve done literally everything a person can do, for years, trying to prepare mentally and physically so a baby could survive. It’s not my choice if, or when we get pregnant, or if the baby will live or not.” I try to prepare myself for His answer, even though it has been “no” so many times, and 7 times He’s taken them back. I’ve also miraculously been blessed with two healthy children- so I’m not ready to give up yet. I look at my children and I know it's possible. I work in the hospital and go into the rooms of all these newborn babes, and think how simple and easy it seems. So painful- I’m just so worn out.

Jack, age 8.  Aidia, age 2

Gearing Up

It has been a little while since I’ve checked in. Things haven’t been easy lately, but I feel like I have to express my gratitude for what I’ve been blessed with. Even when times get really hard, the multitude of what I have overwhelms me. A roof over my head, two incredible children, the most supportive partner, a van to drive them all around in, enough food to eat, and the fact that Kevin and I are both employed to keep us afloat. In today’s world, those are miraculous things!

I feel, all the feelings. Trying to have a new baby is a totally separate emotional process and journey from grieving from our loss earlier in the year. It makes me extra thankful for my sweet rainbow baby Aidia, and my (not-so-little) baby I had before all of this started.

There’s been a lot going on in our life. Things that aren’t necessarily right to share on this blog, but I have been sufficiently overwhelmed. And yet, still determined to keep going. It doesn’t feel right to quit yet.

The month of antibiotics twice a day was sincerely brutal. I was so incredibly sick from them, constantly. I can only hope they worked the way they were supposed to. Hope that the chronic endometritis is clear. We met with our fertility doctor a few weeks ago, and we opted out of a repeat uterine biopsy. He left it up to us, so I'm a little anxious. He said as a scientist he would repeat it again...BUT it's less than 5% of cases where someone needs a different/second antibiotic treatment, and I already did the month-long treatment to start with. Plus, we still don't have the pathology bill yet, and really can’t afford to do another biopsy unless it was totally necessary. I can only hope we made the right choice. The doctor was fine with our decision, but it's always hard. Anxiety, when it comes to the life or death of a new baby just starting out, is relentless and intense.

I think that I still refuse to accept that I have infertility (that definition being I cannot carry a child to term easily.) It hurts too much. It still seems counterintuitive that we conceive so easily, and yet can long for a child for years. I've spent basically all of my twenties either being pregnant, or getting through a loss, or planning how to try and save the life of the next baby. I got pregnant with Jack just a few months after I turned 20, giving birth at 21, and here I am a month away from my 29th birthday, having gone through 9 pregnancies, and desperately hoping to complete our family with a third child. It has not been an easy decade for us.

I feel ready, as we were given the okay from our doctor to try again. Ready for the hormones, and needles, and the crushing anxiety. All the appointments. Going off my regular meds, taking up to ten supplements a day. But I find myself crying more and more because of the very act that I am gambling my heart. I'm going to conceive a baby, even though 78% of my pregnancies have ended in a loss. It’s hard to describe the feelings I have when I see that positive test; when we monitor growth for those first several weeks. It’s like I can’t ever exhale. But our next baby may have a perfectly normal chance of survival, if we have corrected the right problem this time. I’ve said it before and I’ll say it again, worst game of guess and check, ever.

This is the definition of being brave. But I can't not try again. I try to stay on top of the countless vitamins and therapies and everything else that, at best, might just help a little. But it's really all I have control over. You almost wish it was a surgery or something, where humans had control over a majority of the outcome. Where I had to give my fate to a skilled surgeon. Because that makes sense in my brain. But in a situation like this where it's basically all up to God, it's so much harder to understand, and to me, feels scarier, even though I should take comfort knowing that God is in charge.

I can't let myself think about how much I want it, because it hurts so much. Too good to be true. Too impossible to really happen. And yet, I look at my children that did survive, still in awe, thinking that with divine intervention there must be at least a slight chance for this future tenth pregnancy. But to say anxiety is eating me alive is an understatement.

Honestly we should have more hope then we did after the surgery, because there's more clinical evidence but I don't feel it as much as I did then. Maybe because we have experienced loss again, after our miracle.

If anyone is interested in reading the study on the treatment and success of chronic endometritis, here is a link: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3984485/#!po=1.02041

When I was pregnant with Vincent, for those few weeks, I felt like I was on top of the world. Empowered. Full of joy. I believed all would be well. That's why it still hurts so bad. I hear a lot of women talking about being empowered when they are child free and independent. Which, truly, is wonderful for them, but personally, I feel my most empowered when I'm able to give live and feel it grow inside of me. Perhaps because of all I’ve had to overcome to get to that point. The work and the sacrifice I’ve had to put in. It comes so easily to some. And I've given my entire decade of my 20s working to try and try and try to make it happen. I can lie to myself and say I want other dreams more or just as much, but it’s just not true. I feel like one more little person is meant to be in our family. And I don’t know how much more I can (or will have to) endure to make that happen.

Jack came to me, emotional and upset one evening. He told me how much he misses Vincent and wishes that he would have survived. He said it’s so sad whenever we have a baby die, and he wants for us to have another baby. It’s just heartbreaking to see this affect him as he gets older. The first time I miscarried, Jack was only 13 months old, and now he’s nearly 8. This has been in the background of his entire life.

I pray that God has a happy ending in mind for us, that we can complete our family soon. That Aidia can be a big sister and use all those nurturing skills she was born with. That Jack can witness a miracle at the age he is now. I ask all of you reading to join your faith with ours as we put our trust in God, despite our shaking knees and anxious hearts. Looking forward to a rainbow in our future.

Biopsy

I’m not sure why I was extra nervous to have the uterine biopsy done. I’ve been through worse procedures than this through the years of RPL, but for some reason I was REALLY nervous about this one. It just sounded like it was going to hurt. Kevin and I showed up to the clinic and I went to the back to sign the paperwork before I was allowed to take the Valium for the procedure. We at least had a laugh at the consent form. Medical consent forms always sound horrifying, so they don’t really scare me (especially with working in a hospital) but still. I did not want to be awake for this. I signed, took the Valium, and they wanted to start right away. Yikes! They agreed to give me some time for the medicine to kick in, but much to my dismay (but not surprise) it was basically a sugar pill and didn’t do anything for my nerves. Those drugs never work for me. After 30 minutes I told them I would just be brave and do my best to get through it.

The physical pain wasn’t as bad as I thought it was going to be, but I did feel a little violated afterwards as they pulled all the tools out of me. I was lying there with my feet in the stirrups thinking, “how many times am I going to endure these types of tests and not even know if the outcomes will lead to anything?” It’s all because I have so much love for a baby who doesn’t even exist yet. I cried a little after the doctor left the room. I’m so thankful for people who do these types of specialized tests. But it’s all hard to endure in the moment. I spent the rest of the day in bed until the bleeding stopped.

Then the real agony started. Waiting for results. It was a test that I mostly wanted to come back positive, because you want something to fix, something that IS fixable. I thought that's what I wanted all week, until they called me and told me my biopsy came back positive. Then it felt like a brick dropped into my stomach.

Why did I feel like this? This was a GOOD thing right? No cancer, no polyps, but those little plasma cells were all stained purple, and so, I have chronic endometritis. I guess it never feels good to hear that you’ve been diagnosed with yet another condition that causes you to lose babies. I already felt like I knew I had it- deep down. But HOW is it possible that we have SO MANY different and yet CRITICALLY important issues that cause us to lose pregnancies? What kind of a sick jackpot did we win?  (example pix below, not my own pix)

They told me I could either do a combo of two meds for two weeks and do a repeat biopsy to see if it worked, or a stronger med twice a day for a month with no repeat biopsy if I was struggling to afford another biopsy. Well first of all, I’m going to go with the stronger med at this point no matter what. Because good hell. And I can’t afford another biopsy (and I’m going to be anxious about that) but I’m trying to keep in mind that this treatment has a fantastic success rate.

I started reading some more about endometritis. I learned that you are most at risk to get it after childbirth, miscarriage, getting an IUD, or any other kind of pelvic procedure. The website instructed if you were having certain kinds of pain after childbirth, you may have endometritis and may need antibiotics, etc. My RE recently told me to think of it more as inflammation than an infection, even though it’s treated with antibiotics. 

All at once my mind flashed back to my postpartum recovery with Jack. Jack was born at 9 pounds and 4 oz to a (back then) skinny little me who didn't have hips yet. I was only a Junior in College and basically still had my teenage body. I tore and suffered a great deal in the recovery of birthing that baby who was way too big for me. I narrowly escaped a c-section with him. I remember trying anything over the counter I could to numb the pain, inside or out, taking that stuff that turns your pee orange to try and make it sting less. I used to just try and squat and pee standing up because the pain was so intense. I’m not exaggerating, I did not pee sitting down for 4 months. I went to the OB so many times, crying that I could not walk well, I could not climb into bed. They treated me for yeast infections (which we never really found evidence of) maybe 10-12 times. I remember it, picking up so many rounds of vaginal Flagyl. Over and over and over. They said we had to beat what must be a yeast infection. I was 21 years old, what did I know? After so many times, they eventually started giving me injections of numbing medications mixed with steroids straight into and around the vagina to try and "help the pain." All it did was make it worse. It bruised me. It was hell. They offered doing exploratory surgery where they would “cut everything back open” and try to let it reheal, suggesting maybe I had a trapped nerve. But everything was already stinging so bad, I couldn’t fathom it. I had an infant to take care of. I was in full time school. I stopped trying to treat it. I did more baths, walked slower. Eventually, by the time Jack was around a year old I was mostly ok again.

Last night, I sat on the bathroom floor, letting everything sink in, and with tears in my eyes, I looked at Kevin and said, “I bet that is when it started. I had it after Jack. That’s what all the pain was from. And we created some kind of superbug doing so many rounds of Flagyl. And I have probably had this for almost 8 years.”


I feel bitter, and sorrowful, and somewhat angry. But also understanding. I don’t even think this was a “thing” in 2011. I’m glad we know now. I’m glad that we still have some hope for treating it, even though there’s risk for some scarring after having it chronically (from what I’ve read.) I also feel extra thankful for Aidia. I can't imagine not having my sweet daughter. Had we lost her, maybe we would have given up. I still feel Kevin’s surgery was a major contributor to her survival. I’m trying to think back- did I maybe take antibiotics for a sinus infection or something just before she was conceived? Did that just tip the scales enough? I almost never take antibiotics.

I think of how I ended up in the ER just 4 months ago with intense pain that I thought was another burst cyst (an ovarian cyst had just burst two weeks prior, confirmed with ultrasound.) But despite a CT, they couldn't find any other cyst or any other reason, "must have been residual pain," and sent me home. So expensive, and no explanation. Is this related somehow?

I read about some of the symptoms of endometritis. Some of which include chronic fatigue, feeling sick, etc. Lots of the same symptoms as autoimmune thyroid disease. How much of my fatigue have I been accurately associating with my thyroid, and how much could have been contributed from have a low grade infection/inflammation for like, possibly 8 years? It’s a tricky thing. It was never enough to raise my white count in my blood work. I don’t fault anyone for never finding it.

The hardest part for me right now is wrapping my head around everything. I always thought for the most part, that our babies likely had something wrong with them at the very start. Something that was incompatible with life. And maybe many of them did. Especially before Kevin's surgery. Or if it was something wrong with my blood, that's something I was born with. But to think that it's possible that the babies were healthy, with strong DNA (as karyotyping suggests), and died due to an unhealthy environment in the womb... Especially one that may have been preventable had different decisions been made after Jack's birth, is just so painful. I don't feel like it's my fault necessarily, but it's so much more heart wrenching to think that Vincent was likely a healthy baby with no problems (since he was post surgery) and couldn't thrive in my womb due to a chronic issue that despite all the years of tests, we knew nothing about. So painful. So unfair. I wish I could get him back with what we know now.

I started the antibiotics last night. I’ll be doing probiotics in the middle of the day in between my two doses so I don’t die by the end of the month. It’s been a little rough in the first 24 hours. I’m not supposed to have dairy around the time I take them, so I just popped a few apple slices in my mouth when I took them this morning, before making the hour long round trip to take Jack to summer science camp. Big mistake. Not enough food. I spent the whole drive trying desperately not to vomit all over the car. Lesson learned and moving forward I will do anything to keep my tummy happy.

It’s so much guys. Emotionally and physically. Still grieving. Still hoping. Still wanting all this work to have a glorious payoff in the days to come. <3

It's Never Boring

Do you ever feel like you are spending most of your life just trying to figure your life out?  It's been like that lately.  Logistics.  Being a PRN at work I feel like most of my job is just trying to nail down my schedule and find hours I can actually work.  I'm a stay at home mom 50 hours a week, and I have to go to work outside of those hours, day or night.  In addition to that I've been trying to schedule the kid's summer activities, manage our finances, go to counseling, and solve all our medical mysteries.  Adulting, am I right?  On the medical mystery side of things, life has been quite interesting this past month.  Even more so than I expected.

I spent a lot of time as we waiting for our karyotype results preparing myself to accept what fate had handed to us.  If we had something frequently fatal written in our chromosomes, in our very DNA, it explained so much, and there's little we could do about it.  By the time our results finally came in, I fully anticipated seeing an abnormal marker, and was ready to embark on the journey to acceptance of what this might mean for our life.  Imagine my surprise and confusion when we learned that not one, but both of us had normal karyotypes. How?  How do we have normal chromosomes and yet, 7 losses?  That in combination with Kevin's DFI result really meant that genetically speaking, we should be able to have a viable baby.  It was shocking and thrilling, to feel that little spark of hope again, that just maybe, we could complete our family with one last rainbow baby.  Even with that hope, the medical side of my brain was spinning.  I could blame 6 losses on Kevin's DFI before surgery.  Was our loss of Vincent just a "chance loss"?  Did it have to do with my blood or MTHFR?  Somehow tie into autoimmune?  Was it something else entirely? 

After our results came in, we set up a consult with our fertility doctor.  We've been working with him since 2014, but we haven't sat down to talk with him and go over everything in years.  We wanted to make sure we weren't missing anything and everyone wanted to be on the same page.  For the appointment, I tried to summarize our history into one page.  Everything we knew was a problem and everything we had ruled out.  It kind of turned into a horrifying type of resume.  I wanted to lay everything out clearly and ask the doctor if there was anything I had missed or anything more I could do.  We waited about a month before he had an opening to see us.   

When we sat down with our doctor it was a comforting place to be.  It's probably not a good thing when the fertility clinic feels like home, but those people have been so good and kind to me for so long and I trust them.  The appointment was at least an hour of the three of us just talking in his office.  He told me on the one hand, I seemed more well read in this area than some of the physicians he knows, but on the other, he was sure I had gotten to that point out of necessity, and he was very sorry for that.  We discussed all the theories.  "The more we learn the less we understand about all of this" and that type of thing.  I expressed how unless there was something brand new I just didn't think there was anything left.  He looked up, like with a twinkle in his eye y'all, and said, "Actually there is."

I was just like...wait, what?  And he explained even since the time I had been in last this was new.  At a conference he was at he learned about this new study that suggested 25-30% of women with recurrent pregnancy loss were testing positive for endometritis.  Now don't confuse that with endometriosis, you've heard of that before, it comes with fibroids and bleeding and major symptoms.  That was ruled out for me ages ago.  Endometritis is more at the cellular level.  They test for it by doing a uterine biopsy and looking for CD138 cells (I believe they are plasma cells.)  I had so many questions.  Could I have had this my whole life or was this a flare up thing?  He really didn't have the answers, it's all SO NEW.  But one thing I do know is that inflammation is so highly correlated with autoimmune and that blew my mind.  He said that was a very good point.  When this was introduced to him he thought 25-30% of patients? Impossible.  Until he started testing his own patients with 2+ losses.  He told me about a fourth of them have come back positive.  And the treatment is simple, it's basically an antibiotic treatment.

SO.  My mind is blown.  Could I have possibly been on an antibiotic for something before we got pregnant with Aidia and forgotten?  I want to get this information out there.  I'm not excited about a uterine biopsy but I've done lots of painful procedures that I've had to be awake for, what else is new.  It has been such a headache to work this out.  Between the insurance and job schedules (and then there are only certain cycle days you can have the biopsy done.)  But my doctor is an angel and offered to do his portion of the biopsy for FREE so I could focus on paying for the pathology portion (it's a send out lab.)  He really wants to know if I have endometritis.  So my biopsy is in like, 4 days.   

Meanwhile, life has pressed on.  I think for many people, miscarriage may seem like a short term hardship that ends, but for many parents it doesn't feel like that.  We continue living it.  I go to work and stand outside the door of a newborn baby and its mother, and I have to take a little breath of courage to myself before going in to do my job.  My heart shatters just a bit every time, as I smile and congratulate them.  Not because I don't feel joy for them.  But because I feel so aware of how empty I am.  How I am not almost 5 months along as I should be.  The grief doesn't stop and the struggle to continue to look to the future with hope is just that, a struggle.  It's work.  It takes a lot of energy.  Sometimes you're hanging in there by a thread and it's just a normal Tuesday. 

Sometimes all Aidia wants to watch is the "Big Brother" episode of Daniel Tiger where they get everything ready and then his mom has a baby at the hospital.  She will cry until I change it to that episode because she's so fascinated and excited by it.  That part doesn't make me sad, I love her for it.  She adores babies and she's only 2.5 years old.  I hope someday I can give her that experience. 

Some nights I stay up and cry half the night.  Sometimes it feels like it just barely happened.  Like just today, I got a bill from an OB I saw during my pregnancy that wasn't processed correctly.  It doesn't just stop for me.  I've been asked if I'm "feeling better" as if having a miscarriage (or 7) was like having the flu or something.  No.  I'm not feeling better.  But I'm being as strong as I can be and having faith even on the days that I feel the most sorrowful.  It seems like having children is difficult and sacrifice enough, it shouldn't be this difficult to actually HAVE them.  It's a sentiment I've heard expressed often in the infertility community. 

For me, it's hard to be baby hungry and know I have the ability to get pregnant, but I'm so afraid to be pregnant and gamble if they would survive or not.  It's the worst kind of gamble.  It's your health, the baby's health, your sanity, your family's stability, your finances.  All of it. 

I lost a lot of ink when my tattoo healed because it had such fine lines, so I had it touched up/ redone a bit and that was healing for me a bit.  Sometimes when everything hurts a lot emotionally it helps to have something physical or tangible with me to represent all the memories, work, love, hurt, for all my babies.  It's been such a journey.

forget-me-nots

The longer I've been off any medication to manage anxiety and depression, the more difficult it is to run a normal life and keep a happy environment for my hubby and kids.  I can still manage it but it takes much more effort and comes with more breakdowns.  It's a sacrifice I'm willing to make when growing a healthy baby, but it's a harder sacrifice at the moment.  My meds can't be taken while pregnant so I can't restart them now (it takes a few months for them to work and it's very hard on the brain chemistry to start and stop them if we're going to try again.)  So it's actually easier to stay off for now since I'm already off. It's one of the reasons we don't want to put off trying if we're going to try again.  I'm already doing one of the hardest parts.  I've been working at counseling but it is hard to feel yourself slipping and gradually declining.  If the unthinkable happened and we had another loss, I would definitely take like a year off from all of this at least and go back on my meds.  But hopefully with everything we've learned, and however the biopsy turns out, we will have our last rainbow baby on the way later this year. <3

Sitting. Waiting. Wishing.

“Everyone can master grief save he who has it”

-William Shakespeare

I’ve talked before about how our odds feel insurmountable. Here is a visual representation of my brain when it comes to thinking about “the odds.” This is the "Evidence Based Management of Recurrent Miscarriages" article from the Journal of Human Reproductive Sciences.

Everything in PINK is something that we've been diagnosed with (and are treating or have treated.) For example, MTHFR, Hashimotos, Progesterone supplementation, DNA fragmentation, folate issues, aspirin therapy, Lovenox injections, etc.

Everything in BLUE: things that have been ruled out or procedures that have not worked. Like I've been tested twice for APS and I don't have it. I've tried LMWH to prevent loss with no luck. Also I don't have uterine abnormalities, etc.

The YELLOW is what we haven't done. Most of those things are out of reach. For example "no immunological test is currently recommended" when talking about "natural killer" cells. Or talking about IVF with ICSI

Everything highlighted really shows so many years. So many doctors. And so much money.

Last Saturday we had our Karyotyping done. In a nutshell, when these results come back, it will show if Kevin and I both have normal chromosomes, or if someone has a chromosome that is “balanced” or flipped, translocated, etc. Basically, when that happens, you turn out normal, but it gets tricky when the “unzipping” and pairing of reproducing happens because fatals trisomies can occur in a new baby frequently if you have an issue like that. Karyotyping is usually more of a last-resort type test because you can’t really “treat” it other than doing IVF and genetically screening the embryos before transferring them (not in our realm of possibility for many reasons.) Some people might also use a sperm or egg donor in some cases, but after having two healthy kids of our own I don’t feel like we will go down that road either.

We certainly have enough risk factors stacked up against us, where it is possible our karyotyping could be normal. That’s the hope. Our odds would be better. I would hope so for our kids too just in case anything "balanced" got passed on (if it was abnormal.)  However, at this point, with 7 losses, I would not at all be surprised if something is off with chromosomes somewhere. It’s pretty hard for me to imagine normal results coming back. I just want to know what we’re dealing with so I know how possible or impossible the odds are. 1/5? 1/20? Knowing may help us be more realistic in knowing when it’s time to stop.  We are anxiously waiting on results.  The lab told me to call in one week, but I got an email today (9 days after the draw) entitled "Karyotype Results" which stated the results still hadn't come in and to try in another week.  Face palm. 

Easter was hard. I don't know what's been more difficult. Mourning the loss of Vincent and thinking about the announcement I would have been making on Easter, or trying to brace myself that our "last baby" we dreamed of really might not be in the cards. Everything I'm thankful for doesn't take away that pain. I’ve tried to justify the hurt away; I've tried to tell myself to be a better mother for the children I do have. I tell myself how blessed I am, how lucky I am to have any living children at all. I've tried to dream bigger for my career. But it appears the only way to deal with grief is by going straight through it. Telling myself anything else just feels like a big fat lie. Regardless of the fact that there are worse things in the world, we are in a horrible state of limbo and grief (compounded grief) at the same time, and that sucks.

My brain doesn't like disequilibrium. Doesn't vibe well with me. I swing back and forth so hard. Just trying to somehow make it ok in my mind. One day I'll think, we can just try until it happens even if I lose my mind. The next day I realize I can’t take it, and say we can be finished and have a great life with the children we have and I’ll just ignore the heart pangs and come home and cry every night.

If I have to make my peace somehow I will. But either way, floating out here in the middle of not knowing is probably most painful of all.

We both know we have one try “left in us” before we break. That would make ten pregnancies, which just seems absurd. Far be it from me to give God an ultimatum. That's not what I'm trying to do. All I'm trying to say in my prayers lately is I've just about had it. Physically, mentally, spiritually. So if we're meant to raise a third, I feel like I need Him to send that miracle with the next pregnancy. Because at that point I maybe will have done all I can do. I just don't think I can go through what I went through to get Aidia again. 6 losses and 5 years. Really it's putting my faith in Him. I trust I will be okay no matter what happens. Even if it’s not for a very long time. Even if it always hurts. But I am really scared about it.

I have been suffering too much, too long. I want to be happy for a while, when my kids are still young. Enjoy the day to day.

I think I would be ecstatically surprised if our next baby survived and was healthy. I'm just not really planning on it. In our minds, I think in a way we’ve already lost the next one. I try not to think that way though.

We could have quit while we were ahead with Aidia. But we really, truly thought we solved “the problem.” We thought we could have as many more kids as we wanted. It seems harder to decide your baby is your last when she’s already two and a half.

Sometimes, I tell myself all these things I can have in my life, if I only have two children. Especially with the age gap. But it's painful because I know it's not what I ACTUALLY want in comparison. If I could choose.

All I can do is give our next pregnancy every best chance we can. The rest is in the hands of God. Doctors and science have done what is in our realm of possibility. We started on this medical journey in 2012. There are some things that we will try medication/supplements wise I’m sure next time, but we’ve been down that road so many times.

It was suggested to me that maybe our last baby wouldn’t be close in age to Aidia, but maybe if it was meant to happen, it would just happen in 4 or 5 years. If only I could just leave it to fate like that. I will get pregnant any time I'm not actively trying to prevent it. I can't just hope for a miracle someday. I can't just be pregnant twenty times in my life and watch them all die. It would be "too easy" to just let it go and live our life and hope for a miracle. We have to make a conscious choice. It’s so much harder. Choose to be done before we want to be.  It’s the problem with being fertile with infertility. Or recurrent loss. Whatever you want to call it. I just feel stuck.

I mean maybe I'm not at peace yet because it's not finished yet. And maybe it will be different after our next (possibly last) try. For that little soul to be wherever they need to be. I just feel like in my mind I've already lost them and that's so difficult. And I don't know how I will ever put that baby hunger to bed for good. There are worse things in the world but that doesn't really help either.

Working in a hospital I end up around pregnant or laboring moms in all kinds of circumstances, and because of where I'm at in my journey that can be painful for me. But working in a hospital certainly also keeps me grounded in the reality of how fortunate I am as I see situations that make me pause and count my blessings every shift. Life is just to no one.


Be still my soul. The Lord is on Thy side. We hear that a lot, but if we really think that God is on our side, it helps doesn’t it?

How Am I Still Surprised By This

I'm honestly surprised at myself that I still feel shock at bad news.  After all this time and so many years of hearing bad news in this realm.  While we were devastated and defeated at having to face another loss after Aidia's birth, we felt like "at least we know why."  Kevin had been feeling some pain that we thought was scar tissue before, but another miscarriage we "knew" it must be more sinister.  After all, Kevin's DNA issue was finally revealed after 6 consecutive losses (and after we had treated everything else known to man) and after his surgery, we miraculously got our girl.  So, we fully expected to have another surgery this year, re-repair whatever needed to be fixed, wait the ten months of healing, have that last miraculous rainbow babe, and be done with it forever. 

But then I did it.  I said it out loud.  Friends, never voice your worst fears aloud ok?  Just don't do it.  I actually said, "I think I'm most afraid of your DNA coming back normal, because then we would have nothing left to fix."  And when that week passed and those results came in, wouldn't you know, Kevin's DNA looked even better than it did right before Aidia was conceived.  And I was floored.  And physically ill.  And thought aloud, "what else could possibly be left?"

I was reading back through the Journal of Human Reproductive Sciences, an article called "Evidence-based management of recurrent miscarriages" (light reading I know) and it was all I could do not to laugh to myself.  We have so many risk factors that the odds seem insurmountable.  It mentions Leiden Factor V (I have it), MTHFR (have it), thyroid and autoimmune disease (check, check),  male factor (had..thought we fixed with the surgery).  The list goes on.  I think there is so much more to MTHFR than medicine understands right now.  Especially as it ties into neural tube development.  Correlation is not causation, but talking to different doctors and other loss moms over the years it seems like there is a lot of smoke and we just don't know where the fire is yet (or how to treat it.)  Many doctors treat this idea as some sort of internet conspiracy, but I've noticed the good ones know there is a bit more to it.  

The article also mentioned several issues that might be a problem that I have either been tested for and found not to have (like uterine abnormalities or antiphospholipid syndrome) or recommendations we've tried that have not helped like Lovenox injections.  We have spent so much money that we didn't have on treatments and testing like this.  Is the answer really illusive or is it really the luck of the draw with us?  It seems impossible that Kevin's surgery didn't make Aidia's birth possible- but of course we can't rule out that we didn't just improve our chances.  

So we are left to decide now if we want to continue to try, and wish for the best, treating all the risk factors the best way we know how (because when the baby seems healthy, for the 2/9 times that they have been, they seem to do fine.)  We can also consider doing karyotyping to see if there is something weird genetically going on with us that would explain so many lives ending early.  The problem with karyotyping is, it may or may not change or course of action.  I guess it depends on how bad the odds are.  So far I'm feeling pretty bad about my 2/9 odds.  I felt better once I thought they were fixed after the surgery, we just don't know if Vincent was an outlier loss.  It's a cruel thing to think he could have been a "random 1/4 loss that just happens."  

Karyotyping can also be wrong... it's not a guarantee.

Also, we aren't prepared to do IVF with ICSI (where you genetically screen the embryos before transferring them.)  It's not in our realm of possibility.  

And karyotyping is expensive.  So do we do it to find out, or do we just try again to see if the odds are in our favor?  Also, Kevin is increasingly concerned about my well being.

I don't know how many tries I have left in me. One for sure. Make it an even ten. Not sure what we will decide past that. I don't know how I will ever decide on doing something permanent (like a vasectomy or something) because it will be so painful. Ending on such a painful note. But I still have ten years of fertility left in me, and I'm not sure if I could endure the limbo that long with something less than permanent.  Either wondering all the time if we should try again, or if we will lose again, or start over again with a miracle baby.  I have been told I'm too young to worry about it, but it's actually worse that I'm young because it has to be a choice to give up my fertility that I want more than anything, to save my sanity.  

We talked about quitting while we were ahead. We really did. It didn't feel right, and we were so hopeful to give Aidia a sibling a little bit closer to her. Jack will graduate high school before she starts jr. high school. I really wanted her to have a sibling at home to share the journey with.  I think it must come down to God's will and just hoping I can learn to live with the pain of whatever will be will be.  

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It's probably just hard to imagine now.  I am still at that point where I cry like four times a day.  I probably have full blown postpartum depression.  My thyroid feels pretty sick but I'm still waiting on bloodwork to come back. I think part of the reason the first month (at least) is always so difficult, is because even when you're in a place to feel joy, you're not ready to most of the time, you're not willing to feel joy yet, so you push it aside. Except in very rare moments.

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I trust God, I do. He's got it figured out. He gave me Aidia in the right time. He led me to the right medical information that allowed us to have her. I just, don't understand right now. And I hurt.

I told myself often while pregnant with Aidia, enjoy this, even though you don't want her to be your last, she might be. So I really tried to enjoy every second of it. And I think I did my best (despite all the anxiety.) I had so much joy. And still do. I love every day and stage with Aidia. But I think since we believed we solved the mystery and problem of our losses before Aidia, I thought we would have another. It makes this that much more difficult.  I honestly can't believe we're back here.  

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I was so afraid this would happen.  It's not like my anxiety is unfounded.  All of these things I'm afraid of keep happening.  It starts to spill over and makes me afraid of basically everything.  I feel like each loss has changed me; taken a piece of me back with them.  It's like my brain has been rewired.  

I tried to take back "control" of my life this month.  I tried to do spring cleaning, go to hot yoga, go for a jog.  It was like skipping ten steps.  I'm really not even ready to get dressed every day, and I think it's going to take time for me to realize that.  Like, I'm just going to have to survive this and I can't fake it or force it.  I just crash and burn harder when I do.  I'm just trying so hard to feel better, to feel like actually living, and it's impossibly hard.

I went to a new counselor.  First time I've been to counseling in about four years.  I mostly went because I love Kevin and I know how much he wants me to get some help.  I believe in it, I just felt so raw still.  I did not feel ready.  But I've started the process.  This was the second counselor to tell me I have PTSD in the initial visit, but I'm hoping she'll help me more with how to treat it.  Like, I already knew I had it, but I feel like it's running my life right now instead of being part of my life.  I get really angry at things lately, then come crashing down into really intense sorrow or panic.  I'm hoping that I can learn some ways to somehow be out in the world with this pain and still be ok.  Happy even.    

I'm always trying to find that balance between pushing myself, and being kind to myself.  I never know what is truly "my best."  I have really appreciated this story this week if you haven't read it before.  It really explains how it feels to live with any kind of chronic illness.  Hashimoto's, you name it.  So let's all be kind to each other! 

The Spoon Theory

by Christine Miserandino www.butyoudontlooksick.com

My best friend and I were in the diner, talking. As usual, it was very late and we were eating French fries with gravy. Like normal girls our age, we spent a lot of time in the diner while in college, and most of the time we spent talking about boys, music or trivial things, that seemed very important at the time. We never got serious about anything in particular and spent most of our time laughing.

As I went to take some of my medicine with a snack as I usually did, she watched me with an awkward kind of stare, instead of continuing the conversation. She then asked me out of the blue what it felt like to have Lupus and be sick. I was shocked not only because she asked the random question, but also because I assumed she knew all there was to know about Lupus. She came to doctors with me, she saw me walk with a cane, and throw up in the bathroom. She had seen me cry in pain, what else was there to know?

I started to ramble on about pills, and aches and pains, but she kept pursuing, and didn’t seem satisfied with my answers. I was a little surprised as being my roommate in college and friend for years; I thought she already knew the medical definition of Lupus. Then she looked at me with a face every sick person knows well, the face of pure curiosity about something no one healthy can truly understand. She asked what it felt like, not physically, but what it felt like to be me, to be sick.

As I tried to gain my composure, I glanced around the table for help or guidance, or at least stall for time to think. I was trying to find the right words. How do I answer a question I never was able to answer for myself? How do I explain every detail of every day being effected, and give the emotions a sick person goes through with clarity. I could have given up, cracked a joke like I usually do, and changed the subject, but I remember thinking if I don’t try to explain this, how could I ever expect her to understand. If I can’t explain this to my best friend, how could I explain my world to anyone else? I had to at least try.

At that moment, the spoon theory was born. I quickly grabbed every spoon on the table; hell I grabbed spoons off of the other tables. I looked at her in the eyes and said “Here you go, you have Lupus”. She looked at me slightly confused, as anyone would when they are being handed a bouquet of spoons. The cold metal spoons clanked in my hands, as I grouped them together and shoved them into her hands.

I explained that the difference in being sick and being healthy is having to make choices or to consciously think about things when the rest of the world doesn’t have to. The healthy have the luxury of a life without choices, a gift most people take for granted.

Most people start the day with unlimited amount of possibilities, and energy to do whatever they desire, especially young people. For the most part, they do not need to worry about the effects of their actions. So for my explanation, I used spoons to convey this point. I wanted something for her to actually hold, for me to then take away, since most people who get sick feel a “loss” of a life they once knew. If I was in control of taking away the spoons, then she would know what it feels like to have someone or something else, in this case Lupus, being in control.

She grabbed the spoons with excitement. She didn’t understand what I was doing, but she is always up for a good time, so I guess she thought I was cracking a joke of some kind like I usually do when talking about touchy topics. Little did she know how serious I would become?

I asked her to count her spoons. She asked why, and I explained that when you are healthy you expect to have a never-ending supply of “spoons”. But when you have to now plan your day, you need to know exactly how many “spoons” you are starting with. It doesn’t guarantee that you might not lose some along the way, but at least it helps to know where you are starting. She counted out 12 spoons. She laughed and said she wanted more. I said no, and I knew right away that this little game would work, when she looked disappointed, and we hadn’t even started yet. I’ve wanted more “spoons” for years and haven’t found a way yet to get more, why should she? I also told her to always be conscious of how many she had, and not to drop them because she can never forget she has Lupus.

I asked her to list off the tasks of her day, including the most simple. As, she rattled off daily chores, or just fun things to do; I explained how each one would cost her a spoon. When she jumped right into getting ready for work as her first task of the morning, I cut her off and took away a spoon. I practically jumped down her throat. I said ” No! You don’t just get up. You have to crack open your eyes, and then realize you are late. You didn’t sleep well the night before. You have to crawl out of bed, and then you have to make yourself something to eat before you can do anything else, because if you don’t, you can’t take your medicine, and if you don’t take your medicine you might as well give up all your spoons for today and tomorrow too.” 

I quickly took away a spoon and she realized she hasn’t even gotten dressed yet. Showering cost her spoon, just for washing her hair and shaving her legs. Reaching high and low that early in the morning could actually cost more than one spoon, but I figured I would give her a break; I didn’t want to scare her right away. Getting dressed was worth another spoon. I stopped her and broke down every task to show her how every little detail needs to be thought about. You cannot simply just throw clothes on when you are sick. I explained that I have to see what clothes I can physically put on, if my hands hurt that day buttons are out of the question. If I have bruises that day, I need to wear long sleeves, and if I have a fever I need a sweater to stay warm and so on. If my hair is falling out I need to spend more time to look presentable, and then you need to factor in another 5 minutes for feeling badly that it took you 2 hours to do all this.

I think she was starting to understand when she theoretically didn’t even get to work, and she was left with 6 spoons. I then explained to her that she needed to choose the rest of her day wisely, since when your “spoons” are gone, they are gone. Sometimes you can borrow against tomorrow’s “spoons”, but just think how hard tomorrow will be with less “spoons”. I also needed to explain that a person who is sick always lives with the looming thought that tomorrow may be the day that a cold comes, or an infection, or any number of things that could be very dangerous. So you do not want to run low on “spoons”, because you never know when you truly will need them. I didn’t want to depress her, but I needed to be realistic, and unfortunately being prepared for the worst is part of a real day for me.

We went through the rest of the day, and she slowly learned that skipping lunch would cost her a spoon, as well as standing on a train, or even typing at her computer too long. She was forced to make choices and think about things differently. Hypothetically, she had to choose not to run errands, so that she could eat dinner that night.

When we got to the end of her pretend day, she said she was hungry. I summarized that she had to eat dinner but she only had one spoon left. If she cooked, she wouldn’t have enough energy to clean the pots. If she went out for dinner, she might be too tired to drive home safely. Then I also explained, that I didn’t even bother to add into this game, that she was so nauseous, that cooking was probably out of the question anyway. So she decided to make soup, it was easy. I then said it is only 7pm, you have the rest of the night but maybe end up with one spoon, so you can do something fun, or clean your apartment, or do chores, but you can’t do it all.

I rarely see her emotional, so when I saw her upset I knew maybe I was getting through to her. I didn’t want my friend to be upset, but at the same time I was happy to think finally maybe someone understood me a little bit. She had tears in her eyes and asked quietly “Christine, How do you do it? Do you really do this everyday?” I explained that some days were worse then others; some days I have more spoons then most. But I can never make it go away and I can’t forget about it, I always have to think about it. I handed her a spoon I had been holding in reserve. I said simply, “I have learned to live life with an extra spoon in my pocket, in reserve. You need to always be prepared.”

Its hard, the hardest thing I ever had to learn is to slow down, and not do everything. I fight this to this day. I hate feeling left out, having to choose to stay home, or to not get things done that I want to. I wanted her to feel that frustration. I wanted her to understand, that everything everyone else does comes so easy, but for me it is one hundred little jobs in one. I need to think about the weather, my temperature that day, and the whole day’s plans before I can attack any one given thing. When other people can simply do things, I have to attack it and make a plan like I am strategizing a war. It is in that lifestyle, the difference between being sick and healthy. It is the beautiful ability to not think and just do. I miss that freedom. I miss never having to count “spoons”.

After we were emotional and talked about this for a little while longer, I sensed she was sad. Maybe she finally understood. Maybe she realized that she never could truly and honestly say she understands. But at least now she might not complain so much when I can’t go out for dinner some nights, or when I never seem to make it to her house and she always has to drive to mine. I gave her a hug when we walked out of the diner. I had the one spoon in my hand and I said “Don’t worry. I see this as a blessing. I have been forced to think about everything I do. Do you know how many spoons people waste everyday? I don’t have room for wasted time, or wasted “spoons” and I chose to spend this time with you.”

Ever since this night, I have used the spoon theory to explain my life to many people. In fact, my family and friends refer to spoons all the time. It has been a code word for what I can and cannot do. Once people understand the spoon theory they seem to understand me better, but I also think they live their life a little differently too. I think it isn’t just good for understanding Lupus, but anyone dealing with any disability or illness. Hopefully, they don’t take so much for granted or their life in general. I give a piece of myself, in every sense of the word when I do anything. It has become an inside joke. I have become famous for saying to people jokingly that they should feel special when I spend time with them, because they have one of my “spoons”.

© Christine Miserandino