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.  

​

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.

​

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.  

​

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

  

So. Tired.

I finally finished bleeding.  The process was every bit as brutal and cruel as I remember. I went in for all my follow up blood draws and watched all traces of hCG slowly disappear from my system. The tubes of blood I had to verify were labeled “post-spontaneous abortion.” I despise everything about betas after a loss. I understand that they are necessary, and I never fight doing them. I’m thankful I don’t require surgery. There’s just something so violating about hauling your broken soul into the hospital, and submitting your body to more poking and prodding, even after you know all hope is lost. The pain of miscarriage was somewhat extreme on random days, and I would end up hunched over my bathtub, wailing like I was in labor, but also weeping in heartache. I didn’t understand how I could be in that much pain with so little hCG left.

Grief always hits strongest when you're not expecting it to. I'll be rocking Aidia to sleep and singing a lullaby, when suddenly I get so choked up, I can't get any more sound out, and tears just stream down my face. I rock her in silence instead, holding on so tight to that huge blessing in the form of a little girl. Sometimes grief comes in the form of vivid and painful dreams, or panic in the middle of the night.

Music is my saving grace right now. I may not be making any money with it at the moment, but I majored in it for a reason. It carries me away from my problems and lifts my spirits, it boosts my energy, and gives me some purpose again. It can make me feel human.

I reluctantly set up an appointment with a counselor, at Kevin’s request. I believe in counseling; I have done it a few times before...I just literally could not understand it would be feasible right now. Jack already does counseling nearly weekly.  I ran into so many obstacles, between the counselor’s schedule and mine; it felt impossible. I set up a late evening appointment on a weeknight next month. Still not sure how I’m going to work it out.

Honestly, where do people get their energy from? Not like “Life Coach” type energy, just normal, regular energy for the mundane tasks of life. I have no energy. Blame it on the Hashimotos, blame it on depression. But I'm telling you- I am tired down in my bones. It takes every ounce of effort I can muster to take care of my kids' needs. Need after need, all through the day, and there is literally nothing left over. Except for me to fall into a heap, overweight and surrounded by a mess, and cry thinking about an upcoming night shift at work. I feel weighed down and out of breath just walking around my house. My head is always pounding.

Everything is so much work. It all feels harder than it should. I remember this feeling starting at around age 21. Where even just starting a load of laundry yielded this impending sense of doom. The bending over to switch the clothes to the dryer left me totally out of breath. And I was doing a Zumba class several times a week, it wasn't about being out of shape. The class started at 6am, so I was always trying to go to bed early (to get up and exercise to have energy through the day.)  It never worked. After the class, I felt like I had to crash on the couch the rest of the day (even though Jack was a baby then so that was impossible.) It was within the year that I was diagnosed with Hashimotos. And maybe that's all this is. Probably adding to the reason my back and joints hurt all the time. Kevin constantly reminds me I need to do physical therapy. He's right.

Thyroid hormones control how the body uses energy, so they affect like every organ in your body. Without enough thyroid hormones, the body’s functions slow down. It's been a pattern after loss for me to have my thyroid crash hard, since it gets “happier” during pregnancy. But it takes months for it to even out- which is just merciless. I hate to think about how often Jack is late to school. Always by like 5-10 minutes. Between our long drive, some of his issues, plus my exhaustion- it’s the perfect storm.

A few days ago, I had the kind of migraine from the hormone crash that had me rolling around and begging God for death. I took turns between trying to catch my breath from sobbing, and trying not to vomit into the trash can. Those kinds of migraines always seem to come on the hardest at like 11pm. By that point, even if I did get someone to sit with the kids (so Kevin could drive me to the Instacare for the magic IV Benadryl and toradol shot) I would never wake up in the morning to take care of them or get Jack to school. I feel all this despair wash over me during episodes like that. I try to pray, and just end up saying, “Help, I physically can't do it.” And my kids deserve better. They deserve a present and happy, healthy Mom. I so desperately want to be that for them.

Despite my extreme exhaustion during the day, I’m still struggling to sleep. The insomnia doesn't make sense to me. Really? This is the only time I can’t sleep is at night? But I'm too tired to do any work in the middle of the night either. Unless I’m literally working at the hospital overnight. Then I push through.  I usually get my best sleep during the early hours of the morning after the help of some medication. This makes me an exhausted zombie and not-present mom when it's time to get ready for school. Jack almost always makes his own breakfast. Once I finally fall asleep in the early morning hours, I could sleep into really late in the day. But that doesn't really work on a mom schedule.

I'm just wading through each day with difficulty and accomplishing (maybe) the bare minimum. And I swear if someone tries to sell me some MLM stuff to restore my energy, imma hafta cut a fool. It's not the same. Grief is exhausting. Also, I am still actually postpartum. People don't think about that, but my body is going through that adjustment of no longer being pregnant. My dear mother may have put it best "your poor womb must just feel like it’s been through a cheese grater by this point." That actually made me laugh. But yes, 9 pregnancies that have all varied in length takes a toll on your body- I think.

People may say, "You should see a doctor."  But I already know. I have Hashimotos, diagnosed depression and anxiety, and I have chronic migraines. I just had a miscarriage. I have every reason to be exhausted all the time. I have meds I can try and use for all of it if I wanted. But how do you function in spite of it? PS- meds are sedating.  Every day feels like I'm getting up at 230am for something, and I just stay in that blurry-eyed fuzzy state.  Constantly.  And at the end (or should I say beginning) of the day... I still have a job to do. To take kids to school, and grocery shop, to feed and care for a toddler, and a second grader with high needs. I still have a job that employs me at all strange hours. Most days, I'm in tears when Kevin gets home at around 7pm and I HATE that.  For me, but mostly for him.  It's like he never sees the best of me.  Half the time I don't cook, half the time my house is destroyed and I'm still just surviving. More than half the time. I'm. So. Tired.

I know I have textbook symptoms of depression. Some days I feel like a shell of a person. Then randomly I get so angry. I will get better again, it’s going to take some time.  I've done it before.

Maybe if I had some energy, I could deep clean the house and that would make me feel some peace, or a little bit in control. On second thought, forget deep clean, maybe I could just clean something.  Anything.  I wish that I was tired from keeping my house clean and my kids occupied with healthy things all day. But I’m tired from doing the bare minimum, from surviving. There’s so much guilt that accompanies that.

I've had bursts of energy at times in my life. I've lost a decent amount of weight in the past. I've had years where my house was kept really organized. But right now, I have no drive for life.

Maybe if I had energy, I could keep my body in shape and have some confidence.  How will I ever find it in myself to start exercising regularly? Getting up earlier is out of the question (and yes I tried it before, for years). Some people recommend off-the-wall diets (I'm sorry do you know how much energy THAT takes?) I need physical exercise for my heart’s sake (literally.)

I really think I would feel better about myself if I lost some weight. Kevin is gone 12 hours a day and I usually work if he's off work. And Aidia won't go to gym child care. I need to find something that works. Also, I’m sad and tired.

Even so, I'm going to try to start doing some workouts at home because I'm kind of disgusted with myself.

In my experience, exercise does not lift me or give me energy. Runner's high?  Who made that up?  It sucks up every last molecule of my reserve. Kevin says it will take 6 full weeks to feel changes, and usually by 4 weeks the exhaustion has broken me.  I still have some work to put in.  Somehow.

We took a weekend trip to visit my Mom, and I was really frustrated that Kevin didn’t take a half-day off like I had asked him (weeks in advance) for our drive up. I kept pushing him and demanding answers. He finally told me that he didn’t take it off, because he had decided to save all his PTO for when the baby was born. Obviously by the time we went on the trip, it was too late to change the decision. Little things like that sting so much. He was being thoughtful and trying to protect me. We really thought our baby was going to be healthy.

I feel like people judge you a little bit more for trying again and again when recurrent loss is an issue. Perhaps more than failed fertility treatment attempts or things like that. People look at you like.... Why don't you just give up?

I understand- I get that it's different. There's a life involved. But the end goal of a live birth and a child to raise is the same. And unless you've lived through recurrent pregnancy loss, you don't really get to have an opinion about when people choose to give up. Because everyone I know who has lived through it, is extremely supportive and careful of each other.  I know it's possible, I've carried two full-term healthy babies.  That's probably the most frustrating part about it.  It's like Russian Roulette. 

In my journey to have children I have met dozens of amazing people, through my blog and support groups. When I was pregnant with Aidia, I met 4 people who were also pregnant with their rainbows. We leaned heavily on each other during our pregnancies and talked daily, and we've never stopped. Between the 5 of us we have had 23 losses. We also have a total of 11 living biological children, an adopted child, and a foster child. I don't know a group of braver Mamas. And women in general.  I'm thankful for some of my best friends (who I've never even met!) And that we support each other from all over the country. They sent me the most meaningful care package. <3  These days the little things mean EVERYTHING.

There are so many things  that are extraordinary and exceptional about my kids. It's been such a privilege to give them life, and bring them into the world. I believe I have one more waiting to come, and grow up with us. I just hope we only have one more surgery that stands in our way- before a healthy, normal pregnancy.  In the meantime, we continue to miss Vincent.

.

"see you soon, Little Conqueror"

I'm Not Okay

I’m not okay. But it’s not because I’ve been forgotten. It’s not because no one has brought us meals, or that no one has offered to watch my kids. It’s not because my loved ones wouldn’t literally move mountains if that would somehow offer even the slightest relief. It’s because- what can you do? What can anyone do? My baby is gone; I’m not 7 weeks pregnant, I’m negative one week. Again. That fact alone makes me very much, not okay.

I’ve been warmly looked after by friends, family, and neighbors. I received dinners, flowers, small gifts, even some babysitting. Jack’s teacher even sent me the book “Tear Soup” to read, and for a moment I felt like she was MY second grade teacher, and I was ready to listen to what she wanted to teach me.

I hope people understand how their acts of kindness lift my spirits, when the loss has already happened, and the problem itself cannot be fixed; all anyone can do is try to lessen the blow. And it does. I am reminded of the goodness and empathy of humankind. I know that there are those mourning with me. Usually when tragedy strikes, it’s really no one’s fault. Showing kindness to each other goes such a long way.  If there was really something that could be done, I wouldn't hold back; I would ask.

If I had limitless money I'm sure I would go on a vacation, or dye my hair, or buy a bunch of things for my house. Anything to distract myself. To break the monotony of life. But sometimes you just have to keep forging on in the terrible, painful routine of normal life.

When you are in labor to give birth, every contraction and even the searing pain of pushing, brings you closer to your baby. You find a deep strength to endure. When you miscarry, every contraction-like pain takes you further from your baby and closer to being empty inside again. Even though the baby is already dead, you want to resist it, you don't want it to happen, but you have no choice in the matter. The pains persist.

I feel like all my excitement about life has been sucked out of me. I miss my baby being with me. I numbly gathered the few maternity pants I had used and packed them back up. I watched Kevin haul them to the garage to hide them again.

Being happy feels so fake and so disgusting. How could I possibly be happy? Come on in and stay a while depression, I honestly couldn't care less about most of my life right now.

It's not like we got “greedy” about wanting one more. Our kids are incredible, and if you've ever been a baby-hungry mom, you just know there's a little person following you around saying "I want to be part of your family." And by the way, being a parent is pretty much the least greedy thing you can do in this life- I can’t think of a more selfless and thankless job.

It has been suggested to me that we have a boy and a girl, and just don't need to put ourselves through any more. Well guess what, people said that same thing to me when we were several losses in and only had Jack. But Kevin and I KNEW Aidia was meant to come. We had her named at least 4 years before she was born. She is the most INCREDIBLE person. I will never regret the hell I went through to bring her to me. It makes me physically ill to imagine giving up after 6 losses and never having my Aidia. Kevin and I know we are meant to have 3 children. Then they can tie my tubes for all I care because it would kill me to do this any longer.

My OB wanted me to come in and do another blood test at 48 hours past my first draw to see if the levels were rising or falling. I told them, respectfully, I know it's falling because I'm passing clots, and it's too emotionally difficult to come in every two days to watch it drop lower and lower. I told them I've had 6 natural complete losses with no need for a D&C, and would come in at the week mark to make sure I've made it back to zero. I think they were a bit taken aback that I basically refused to do what they said, but I know my body. I have done this so many times.  Also, walking into an OB office honestly is hell right now, seeing all those beautiful third trimester bellies, kicking around with life. I thought I was pretty clear about it, but they called me multiple times in the same day and told me to come in. I was less kind about it during the third call. There was no way I was paying bills just to watch my baby leave me. I knew the warning signs to look for complications. Eventually they agreed.

Today was that week mark. When I went to get my blood draw, there were like no parking spots except for “reserved for expectant mothers.” So that bites. I had to drive past them and try not to cry. I had to take my kids with me into the lab, and Jack asked if the blood draw was for Vincent. Poor Jack. He’s been brave about this whole thing but I know it’s affected him. He had his first ever asthma attack at school where we had to take his inhaler to him (and he's had asthma since he was 3), and he wet the bed once this week. He also screamed some horrible things at us, that I know he couldn’t have meant.

By the way, the hCG dropped again but isn't zero (or technically less than 5) yet, so I have to repeat again in a week. I’m hopeful I won’t need any surgery and will be able to pass everything naturally, as my body has not let me down in that sense yet.

I keep looking at all the people around me. Thinking about the billions of people in this world. And I just think, how? How did the pregnancy that produced you work out? How did millions of tiny things that have to go EXACTLY right, all work out for you? How does this system keep failing me? I look at my own children and wonder, despite me telling them, if they have any clue how miraculous they are.

I don't know how I can be expected to ever leave my house again. In Utah. Where every third woman my age is pregnant. These are the ideal childbearing years. It takes the air out of my lungs and the floor from under my feet to see full pregnant bellies. My belly was growing just a few days ago, but nothing can fix it now, because my baby died, and nothing can be done about it now. I miss him. If I run into someone and they want to ask me how I'm doing I just want to "nope" and hurry the other way. I'm so not ready to deal.

The suffering is just too great, even more so because I feel that this story is becoming "old hat" to people. But my loss previous to Vincent was 4 years ago, and was a totally different little soul. The wound is fresh and real, and I feel like everything is tainted. What can I look forward to in my life when my heart feels so impossibly incomplete?

I'm so thankful Aidia still lets me rock her to sleep. I can hold her close and ponder on the gift she is, just as her name means. Her life, and Jack's life, they remind me that God must love me in spite of this impossible misfortune and grief.

When I was 10 weeks along with Jack, I was told by doctors they were “surprised” I didn't lose him. I nearly lost Aidia several times when I ended up in the hospital bleeding. I feel like there's one more babe strong enough to make it through the risk, I just hope it doesn't kill me first. Studies show women with infertility (or secondary infertility like me) have the same stress levels as those going through cancer. I've never doubted that.

Right now I feel this consuming need to know why. Not spiritually exactly. Physically. When Kevin's surgery was done in 2015, the Reproductive Urologist said it had a 98-99% chance of NOT recurring. Of course, I'm used to being in the 1%. But we feel like lighting has struck twice, and perhaps varicoceles are damaging his DNA and he needs surgery again. That we can't afford. Unfortunately, he has started complaining of pain again at the old surgical site.

Or, an even worse thought; what if his DNA fragmentation index is still fantastic and we are back to square one?

Blocking all the facebook ads and emails that target me as a pregnant mom is like a full time job at the moment. I feel so weird right now. Like part of me wants to finish all the nesting I wanted to do for my house- to help me feel better and like I have control over something. But at the same time, I just keep lying in my bed crying. Things that I would normally do to make myself feel better, like binge a show or get a massage, comfort food...none of it would work because I can't let myself feel relaxed or feel better. It's too soon. Sometimes I'm too sad to sleep. It feels wrong to rest.

One of my biggest pet peeves is people showing relief when I say I was 6 weeks along. I know it’s different than a stillbirth, I get that. But sometimes I just respond, “does it matter?” Do people realize that at 6 weeks the baby not only has a heart, but a developing spine, and a brain and most organs starting? Arm buds and a nose and eyes are starting to form. Growth has to start right away. Do they think everything just magically appears later on? I can't say I blame them for that reaction, but it hurts. My baby probably didn’t develop properly, and was probably not healthy. But the weight of the loss is unchanged.

Two posts ago, I wrote about the tattoo I ALMOST got, but that it didn’t feel quite right. After we lost Vincent, it felt right to change the design to be more simple. Forget-me-nots. Those sweet, tiny flowers summarize everything I feel for those lost sweet, tiny babies. So with that confidence, and I’m sure just a little dash of nervous breakdown, my best friend took me to get my tattoo.

Now normally, in the church world, tattoos are “frowned upon” I would say, because it is marking the body God gave you. I’m not saying I disagree in all cases. But I prayed and I felt like this process was important to me. Healing and cathartic. Maybe there’s a "good, better, best" type way of dealing with grief- but in my case, I don’t regret that I chose to do something permanent.

My 7 babies don’t have grave sites. They don’t have trees. They don’t have anything physical, and I wanted that- a physical memorial. When I decided to get the tattoo, a scripture came to my mind. 

Isaiah 49:16-17

15 Can a woman forget her sucking child, that she should not have compassion on the son of her womb? yea, they may forget, yet will I not forget thee.

16 Behold, I have graven thee upon the palms of my hands; thy walls are continually before me.

Now I don’t want to sound sacreligious, or blasphemous at all. Certainly I don’t want to compare myself to Christ. But I think of that image, how the nail prints remained in His hands after His resurrection, to show His love for us. To identify Himself.  He engraved us on the palms of His hands. A mother’s love is the only love I will know in this life that is closest to how Christ loves us. I wanted to also engrave that love on my body.

I had another baby box show up this week, with onesies and binkies and bibs. It was from one of those free gifts from a company. My sister-in-law happened to send a bath bomb and some chocolate that showed up at the same time. Again, lessening the blow. I appreciate everyone trying to comfort me. I also worry about Kevin. The father is so often overlooked in these situations.

I don’t talk about it online very often to respect Jack’s privacy, but he has some pretty high priority needs, and one of those needs includes counseling. He has been going since he was 5 years old. Between that and his inpatient hospital stay last year, making sure his needs are taken care of has created a huge financial burden for us. We met with our Bishop yesterday, and he is going to look into church resources to help pay for counseling for Jack AND me. I don’t know what the outcome will be yet, but just the idea provides some relief. I don’t feel ready to do counseling again yet, but it’s mostly at Kevin’s request. Since he’s the one who has to try and defuse my panic attacks, I’m sure I owe him that much.

My bishop and Kevin gave me a blessing of comfort, and to have a clear mind to know when to reach out when I'm slipping into darkness. My Bishop blessed me to be aware of triggers that would cause pain and fear and panic. He told me Christ has felt my pain and will take my burden from me if I ask him to.

I have to lean on that. It’s my only choice. What am I supposed to do with my kids when I don't even want to get out of bed? Even when Kevin is home, I hear Aidia downstairs crying for Mama. But I’m trapped in my own brain, screaming and sobbing, “THIS WAS NOT SUPPOSED TO HAPPEN. WE FIXED THE PROBLEM.” I can't do it. I can't fake it. Not even for my kids. My baby is gone.

How dare time keep moving? I'm not ready. How dare there be bills to be paid and errands to be run and lunches to make? I can barely breathe. How am I supposed to go to the hospital for blood draws with my kids? How on Earth can I even wake up in the morning? How can I get out of bed? How can I eat well or get some exercise?  How will I ever go back to work?  How can I miss any work at all and lack the paycheck?

Kevin says to fake it for the kids for their sake, so they can be happy and okay. He’s not wrong. But I literally, physically can't. I can feel the adult diaper I'm wearing to try and help with the postpartum blood. I can't think straight. How could I? I'm too busy scribbling out the appointments we had set up for the baby on my calendar, and trying not to die from a broken heart. 7 times. How much can one heart take.

I was happy, (insert any explicit word here,) we were really happy. We had our Rainbow who was more of a miracle than we are able to explain, and we were over the moon and joyful. We were ready for our last one. I would never have put myself through this again. This was not supposed to happen. Not only did the surgeon say there was a 98-99% chance of it not happening again...we called before we tried to conceive and was told retesting wasn't even necessary.

And now the road unfurls before me...and it looks really long and really painful again and I'm just pissed. Jack is always so lonely for a playmate. Aidia is too young to REALLY play with him. He turns 8 this fall. I was thrilled that Aidia could have a sibling 3 years apart from her. But that was me being stupidly optimistic. As if we ever AREN'T in the 1%. I mean honestly, how many times have I heard that. What a rarity we are.

I know these posts are a little raw.  Maybe even hard to read.  But I see no other way to be an advocate for those with Recurrent Pregnancy Loss, other than, to tell it like it is.