burnt toast life

  • home
  • about
  • the story of burnt toast
  • the timeline
  • contact

Apr 09

I’ll never forget you

Apr 09

Blogs seem like a logical place to celebrate anniversaries, both happy and sad. Today I have a sad one.

April 8th, 2013 was hands down the worst day of my life so far (and hopefully forever, because if it gets much worse than that…ugh). That’s not to take away from the sadness of July 8th, 2013, which was also particularly awful. But the thing about April 8th was that it threw me off guard. In no way was I mentally prepared to hear the news that I heard. At first, it was impossible to believe. It really was like I floated up out of my body and was watching it happen to someone else. My twins were there, and they were alive. They were growing and their little hearts were beating. And then they just…weren’t.

I remember everything about that day. The annoying bus ride, the part where I saw them on the screen before I knew anything was wrong yet. The way my heart dropped into my stomach when the tech broke the news. The dread of calling Eric. The dread of telling everyone. The long bus ride back home.

It’s a tough spot to be in, because right now everything about this pregnancy is going well. So I’m happy/sad today. When I think of my twins, tears spring to my eyes in an instant. Perhaps now it’s easier to say things like, “I’ll see them again one day,” or “At least they never suffered; never felt pain of any kind.” It’s easier to say that all now because time has gone by, and because I’m looking forward to the imminent arrival of their sister. But that doesn’t mean I’ve forgotten about them. I wish I could have had them all. I wish they could know each other.

Today I’m thinking about and praying for anyone who has ever lost a child. Miscarriage, stillbirth, SIDs, everything. Truly, from the depths of my heart, I believe we will get to meet our lost little babies one day. Until then…

everysecond

Posted by amanda 11 Comments
Filed Under: miscarriage Tagged: miscarriage, remembering

Jul 17

remembering memories

Jul 17

I have a terrible memory. It’s a part of my identity and I get teased about it pretty much every time my whole family gets together. My mom jokes that rather than wasting money on vacations, summer camps and trips she should have just raised me in a cardboard box because I’d never know the difference.

Some things I remember. For example, I remember the Christmas I was nine. Every Christmas all of my mom’s brothers and sisters and my grandmother come and stay over at our house for a huge dinner and gift exchange. My parents don’t typically give each other gifts (usually my mom just buys herself what she really wants and says to my Dad, “Look at this gorgeous bracelet you bought me!”), but that year my mom had a special one for my dad. She gave him a pair of white baby booties in a little box with a bullet taped to it. I didn’t get the reference at the time (you know what? I still don’t really get it) but everyone congratulating them clued me in to what was going on. I can still see her perfectly, sandwiched in between people on the couch and wearing an oversized green sweatshirt. She had a content little smile on her face. Even at the time I was excited and thought it was such a fun way to announce a pregnancy. I pictured doing something similar in the future (because yes, I was a crazy nine-year-old who thought about shit like that).

Unfortunately, that turned out to be her first miscarriage. She was 13 weeks when she lost the baby. I remember that day, too – I remember she had to go through labor in her bedroom with just my dad helping her. I remember being downstairs in the living room humming to myself because it was so traumatic to hear. I remember being scared and sad and feeling like my heart was breaking for her, and for my whole family.

Funerals are very expensive and money was tight in those days, but she was far enough along that we had something to bury. So on a cold winter’s day my parents loaded us kids into the car and made us bring our sleds so it looked like an innocent day of recreation. We went to the local cemetery with our sled decoys and a big shovel and buried my little lost sibling under a tree. I remember feeling freaked out because we were breaking the rules and I was (and still am) such a rules follower. I still drive by that spot all the time and say a little remembrance prayer every time that I do.

I’ve said it before and I’ll say it again: I never thought I would survive a miscarriage. Now that I’ve survived not just one, but two, I am convinced that I could never survive a late term miscarriage (P.S. universe: that is an observation, not a challenge). I can’t even imagine going through labor and delivery knowing that my baby was already gone. Passing tissue is bad enough. I simply cannot fathom more than that. To all you women who have survived it, I am in awe of your strength.

I’ve also been thinking a lot about how I keep stressing out over calming down. I think part of the problem is that anxiety is more than just a lifestyle choice; it’s also part of what makes me who I am. I’m not a calm, mellow, live-and-let-live kind of person. Fundamentally, I am highly emotional and dramatic. I’ve always been this way. I crave extreme emotions and yes, even drama. I thrive on stress and equate it with excitement. Sure, I could do yoga and try to be Zen. But would I still feel like myself? Would I still be Amanda? I’ve been who I am for so long that I’m scared of changing. Of course I would change, and medicate and be peaceful if it meant a successful pregnancy. But it’s still not guaranteed. And sacrificing who I am in the process, is that really even worth it? Do I have to change to stay pregnant?

Sorry for all the sad stuff again. I just have so much going through my mind and I’m trying to process it. I was texting my mom earlier just to confirm the details on everything since my memory is so fickle and she admitted that she buried the details on all this for a long time, so I actually remembered more than she did. It was pretty shocking since we are an extremely non-repressive family. It made me feel bad for bringing it up at all. But then she told me that over time, pain fades. It seems impossible, but I guess it must be true. I’m looking forward to the day when this is all a sad, faraway memory of a long time ago.

Today is my parent’s 30th wedding anniversary. They have been through SO much, but they still ended up together, and happy, and with all the kids they wanted. I can only hope to be that happy and content with the way life worked out one day.

Posted by amanda 28 Comments
Filed Under: miscarriage Tagged: memories, miscarriage

Jul 15

camping and miscarriage are not mutually enjoyable

Jul 15

Fair warning: this post gets a little gross.

We went camping this weekend. We have a cute little pop up camper (no tents and sleeping on the ground with these crazy dogs in tow) and we lucked out enough to get a site steps away from a fully functional bathroom complete with flush toilets and showers. When we go camping, it’s not exactly “roughing it.”

Since we had this trip planned, I didn’t have any intention of taking my miscarriage inducing pill until Monday. But clearly my body had other ideas.

Friday night around 9 I was in the worst mood I’ve ever been in. Not sure if this is related, but it seemed worth noting. I didn’t want anyone to talk to me, touch me, look at me, acknowledge me or even reference me in any way. I was a total bitch on wheels. It was so bad that I ended up just going to bed for fear of starting a colossal fight over nothing at all.

I woke up sometime in the middle of the night and knew without question that I was dying. I’ve had cramps before – it’s part of my monthly misery – but this literally felt like someone had some giant industrial vice and was violently cranking my insides. I’ve never felt pain like that. If someone had walked into the camper offering a full hysterectomy to make the pain go away, I’m pretty sure I would have accepted in a heartbeat.

I stumbled out of the bed, legs shaking, tears rolling down my cheeks and found my emergency supply of ibuprofen in my bag. Eric had finished the last of my soda (curses!) so I had to feel around in the dark, blind without glasses or contacts, until I could find a water to take the pills. The only good part was that the pain seemed to subside in minutes (well, I did take 4). I fell back to sleep.

I awoke again at 4:30 to that familiar feeling of blood loss. I wish there was some way to explain the knowledge that you’re about to bleed a clot because its definitely different than a period… It’s kind of like how when your tampon is full and you just kind of “know it” through a weird feeling? A woman’s sixth sense, if you will? It’s like that. I knew that I needed to get myself up to the restroom, and quickly.

Passing clots is really gross, I’m not going to elaborate more than that. It’s also not awesome when you’re in the woods camping, in a bathroom that is not your own, with toilets that have no water pressure whatsoever that take 5 times to flush properly. It was depressing. It’s what I imagined Monday to be like, only on Monday I would be in the comfort of my own home. I’m sure I still need to take the pill to make sure everything is out of me, but seriously… how much is there? I missed out on seeing it all last time since I had the D&C. I suppose there are positives and negatives to both courses of action. I hope no one reading this ever has to experience it, and if you do, I’m sorry. Make sure you have your Tylenol-codeine prescription filled before you think you’ll need it. That was my mistake for all this.

We go on this camping trip every year along with Eric’s parents and the rest of his family. I remember a few years ago when his mom casually referenced that she could be babysitting one of our kids the following year (at that point she knew we were struggling, she was just being upbeat and hopeful). Last year on this trip I had no prospects in sight, other than the luck of a miracle or someone randomly giving me $20K for IVF. This year I’ve been pregnant twice. I made it further then I ever thought I would even though I still didn’t bring anyone to babysit. It’s still possible to have a baby of our own to take camping next year. Far-fetched, perhaps, but possible.

A few posts back I mentioned someone close to my inner circle who is pregnant. That person is Eric’s sister, and she was camping, too. It’s hard. It’s hard to feel like you’re bleeding to death while knowing that a few hundred feet away there’s a normal person enjoying a normal person pregnancy. It’s hard to hear the laughter and adorable voices of the small children at the next campsite over. It’s hard to eat whatever I want because it just doesn’t matter anymore. I hate it, and I hate feeling bitter over baby bumps. I’m supposed to be happy, too. I’m supposed to have a damn bump. It I was still pregnant with the twins I’d be huge by now. I just… I just feel bitter and also angry at myself for being bitter.

I did manage to find some pain pills and they helped me relax significantly. I usually don’t take serious medication, but I have to admit… it was pretty nice to feel calm. The next morning I was even angry at myself for feeling anxious again, thinking somehow a new mindset would take over. I need to relax myself, my immune system, my crazy overactive brain and my imagination. I just need to figure out how to do that in a natural way.

I realize now that I’m rambling. I’m working from home tomorrow and probably Tuesday since I have to take that lovely pill. I wish this could just be over so I can start all over again.

my three boys love camping

my three boys love camping

Posted by amanda 21 Comments
Filed Under: miscarriage Tagged: bitter, camping, miscarriage

Jul 12

and now it’s really over

Jul 12

I can’t lie to you guys. This is a safe place, so I’m going to do what I always do and speak freely. Here’s the truth: I did hang onto a shred of hope for my ultrasound today. It’s stupid, I know it’s stupid. But I just couldn’t help it. For one thing, they made me keep taking the medication, which indicated that they could know something that I didn’t. For another, Eric kept his hope alive, too (mostly for the same reason). I’ll never forget on Tuesday morning hearing him say from the hallway, “…and then they’ll say, it’s a MEEEERACLE!” I laughed. But I also hoped. It’s so hard to not hope.

But alas, my child did not become the next Lazarus. The New Hope ultrasound machine was not broken on Monday. All of my PIO shots this week have been a total waste of time, pain and money. It’s so damn depressing to really let go. Oh, and I finally stopped bleeding after 9 days. I guess now I can look forward to bleeding again sometime soon. (Like, Monday-ish).

We decided (me, my mom, my OB/GYN) not to do another D&C. I’m not as far along, and it’s not twins. I just want my body to heal, and for this task at least, I trust my body to do the right thing. Last time one of the reasons I opted for the D&C was that it sped up the process, but since we’re taking a break anyway, I figured this would be a natural way to pace myself. I got a script for some drug to induce the miscarriage, which is pretty cool. I didn’t know they had those. I thought I just had to wait and wait. But really I can time it and it should only take a few hours. Something else that made me feel a little better was that the embryo is gone already. No more sac; no more visible fetal pole. So I don’t have that super creepy feeling of knowing it’s still… you know… in there. All that’s left is tissue and stuff.

As if this evening wasn’t traumatic enough, I went directly from that soul-crushing ultrasound to the viewing for Eric’s friend. He was 31 years old. It’s just so damn unfair sometimes. I truly wish there was some way to make sense of all this tragedy or to see some kind of reason for it, but I just can’t. You know what? There is no reason. Life just sucks today. Oh, and I happened to overhear a conversation between two young-ish moms as we were walking in. I heard one of them say, “It’s just so different now that we have kids, you know? It makes it so much more real.” Oh, thanks, honey. Thanks for insinuating that my childlessness makes me less capable of feeling sorrow over death. That was EXACTLY what I needed today.

To add another layer of depression to this whole shitty situation, I looked into Reproductive Immunology and Dr. Braverman. I gave them a call, only to find that the consult is $900, not covered by insurance. That’s just the consult. The whole point of doing this clinical trial was that we could not afford to do infertility treatments out of pocket, remember? It would be one thing if it was just $900; I could probably come up with that. But that does not include any of the blood work and testing, it’s just a basic appointment to go over history and have an ultrasound. I would gain nothing from just doing that. I know many of you suggested Kwak-Kim (and I thank you as always for your advice), but I’d be willing to bet she’s not covered either. All of these doctors bill as infertility and Pennsylvania does not mandate infertility coverage, so it’s extremely rare to have it. I’m fucked.

Dr. L insisted that Braverman would be covered. I didn’t believe her, but it was still a nice slap in the face when my theory was confirmed. I’ve been finding blogs of people who have gone to Kwak-Kim and they have been gracious enough to write out the protocol she suggests. It sounds like a lot of PIO, Prednisone, baby aspirin, Lovenox and supplements. So… I’m already halfway there. Is it ridiculous to think I can just guess what she would say without actually seeing her? The only other option I can think of is to see a regular old immunologist around here (which would probably be covered) and see if he/she could order the tests or prescribe the same things. Maybe I would get lucky and find someone who has a modicum of interest or experience in immunology as it relates to miscarriage. I’m clutching at straws, I know. I just need to figure out a way to get some answers on my insurance’s dime rather than on my own.

My mom and I had our post-ultrasound pow-wow and talked about what’s next. She insisted that it’s more than just diet… it’s stress. I need to let go of stress and relax for once in my life. I think part of what makes it so hard is that the process itself is so stressful, which is why taking a break can only help me. I need to get right with my emotions and control-freak tendencies. I need to calm the hell down. I’ve committed myself to starting yoga and at the very least trying acupuncture. I stopped at Barnes & Noble on my way to the appointment to pick up a book called “Preventing Miscarriage.” Let me tell you how fun it was when I couldn’t find it and had to ask at the information desk, loud enough for a gum-snapping college student to overhear. Whatever. I picked it up and started flipping through. There was an entire chapter explaining the trauma of miscarriage, a particularly long section on having an incompetent cervix (so not my problem at all) and a brief section on Environmental Factors. They cautioned against using cocaine and methamphetamines, mentioned the dangers of air pollution and advocated a healthy diet. Seriously? If I was snorting lines of coke every night, I would NOT be questioning my miscarriage. Needless to say, I didn’t buy the book.

My mom has been going through old calendars trying to figure out the name of the doctor who she saw back in ’99. At our pow-wow, I mentioned that I was interested in the book “Is Your Body Baby Friendly?” by Dr. Alan Beer. Her eyes lit up at the name. “That’s it! That’s who I went to see!” she said. I remember how much she said she liked him and how nice he was, plus it turns out he was a mentor to Dr. Kwak-Kim (my mom even talked to her briefly, way back then). It seems like some kind of sign. Dr. Beer has since passed away, but at least I can read his book and hopefully it will have better advice in in than “don’t snort coke.” It’s definitely more in the budget than a $900 meeting just to gaze into Braverman’s baby blues.

Well, after a day chock-full of depressing ultrasounds and viewings for friends who were taken from this Earth way too soon, I’m off to bed. We’re heading into the woods this weekend for a family camping trip. And you know what? I can drink alcohol. And you know what else? I plan to.

Posted by amanda 11 Comments
Filed Under: IVF, miscarriage Tagged: insurance, miscarriage, reproductive immunology, RPL, ultrasound

Jul 09

the day after yesterday

Jul 09

I had a weird dream last night. I went to an appointment to meet Dr. Brave.rman (the supposed repeat pregnancy loss deity) and for whatever reason I was wearing yoga pants and a plain ribbed tank top with no bra. The nurse checking me in chastised my choice of wardrobe, saying, “Didn’t you read the explicit instructions that said to ‘dress in casual layers’ for your appointment? The doctor will never accept you as a patient when you’re dressed like that.” So while waiting for him to come into the room, I found some random rack of sample sweaters and frantically tried to cut off the tags and rip off the size stickers (also, bizarrely, to cut it down from long sleeved to 3/4 sleeved) before he came in the room. I did it just in the nick of time. He walked in, accepted my casually layered outfit and proceeded to schedule an appointment. I had brought three black leather-bound books with me thinking that they were my appointment book, but each time I opened one to write down the appointment time, it turned out to really be a Bible. Weird, right?

One more dream and then I promise I’m done. On Friday night I dreamed that I met my baby. I was in the hospital and had just given birth, and I distinctly saw her little face. I remember in my dream crying and being so happy and so, so grateful. In short, it was the perfect moment. At the time I took it as a good omen for the ultrasound on Monday. Now… I hope it’s just a good omen for the future in general, and for me giving birth myself.

Enough about dreams, though. How am I doing? I’m… resigned. It’s just so different this time. In a way it’s a little easier because I was more prepared, whereas last time I was completely blindsided. In a way, it’s also harder. I’ve now become part of a very, very small percentage of the population who suffers from repeat pregnancy loss (RPL). I am the 5%! I’ve never been less excited to be so “special.” After my first miscarriage, many women opened up about their losses and I realized how common it really is. It made me feel sort of all right about it. But two? That’s a whole other ball game. I know it happens, but it’s so much less common. Even though I’m not, I can’t help but feel very alone and terribly flawed.

In a short space of time, I’ve also had to adjust my view of myself. Ever since two years ago when we were first diagnosed, we’ve known that our problem was severe MFI. We were looking at low volume, low count, low morphology, low motility… it seemed so obvious. Everything with me checked out perfectly. I became absolutely convinced that if I could somehow just get my eggs fertilized that the rest would be a cakewalk. That’s why IVF felt like such a dream come true. That’s why my first BFP was so exciting and I wasn’t really scared. That’s why I was knocked on my ass when I lost the twins. I was supposed to be the perfect one (reproductively speaking, of course). We overcame our problem only to find a bigger problem lurking in the shadows. It just makes me feel so broken.

Besides all of that sad stuff, I’m also feeling very grateful today. I’m grateful for my husband. He and I rarely see eye to eye on things (our conflicts are part of what keeps life interesting), but for each and every part of this he’s somehow managed to say what I’m thinking before I can say it. The first time he said, “Let’s try again!” This time he said, “We need to take a break.” Even though I felt the same, it was so comforting that he was the one to say it. It was such a relief to not have to argue about how to proceed.

I’m grateful for the girls at work. My sort-of boss (my actual boss is in the UK…it’s a long story) insisted that I take off yesterday and today, no penalties. My friends at work sent me comforting texts, and my counterpart picked up my slack without comment or complaint. It’s such a relief to not have to worry about work right now. I took the day today to regroup and get my bearings. I really needed that, and I’m so glad I can be honest with work rather than have to make up silly excuses.

I’m grateful for my dear friend Jana who sent me a beautiful bouquet. If you ever want to take a break from reading about infertility and catch up with an uber-cool yet down-to-earth girl living the dream in the big city, check out Brooklyn According to Jana. And in case you needed proof that she’s an excellent writer, here’s the card she sent:

As long as we persist in our our pursuit of our deepest destiny, we will continue to grow. We cannot choose the day or time when we will fully bloom. It happens on its own. Thinking of you.

flowers

Finally, I’m grateful for all of you. I didn’t respond to my comments yesterday as I normally try to, but I will say that each and every one of you made me feel a little bit better. Thank you for caring about me so much. If there’s one thing I can count on, it’s this blog and the willingness of my followers (gee, I sound like a cult leader) to say the right things right when I need them. You may regret requesting that I keep writing though, because I feel like the floodgates are opening, content-wise. I guess it takes a tragedy to really get my writer juices flowing (I think happy people are boring anyway).

Posted by amanda 7 Comments
Filed Under: IVF, miscarriage Tagged: grateful, miscarriage, RPL

Jul 08

I don’t even fucking know what to say

Jul 08

You have to assume by the use of the word “fucking” in the title that the ultrasound today did not go well. Your assumptions would be correct.

Baby Toast had no detectable heartbeat today, at 7 weeks 1 day. I knew it. I knew it when I woke up this morning. I prayed and pleaded the whole way there. I tried to distract myself. I tried to keep hope alive. But then I got there. They called me back to the room. I was lying on the table waiting for the exam to start and I just started crying; from nerves, from stress, from the knowledge that nothing was going to be OK. I had the same ultrasound tech as the last horrible ultrasound. I knew it when she left the room to go get the doctor, ostensibly to “check out that chorionic hematoma,” but come on. I had already mentioned the slow heartbeat concern. If anything was there, she would have told me. Today is, coincidentally, exactly three months since that fateful day when I was told that my twins had no heartbeat. Today their sister (?) joined them, wherever they are.

You may wonder how I’m coherent enough to write any of this. The truth is, writing is my catharsis. Writing this is the only thing keeping me sane in this moment. Writing, and the immediate flood of phone calls offering support, tears and understanding. To be honest, I’d rather blog about this than call everyone. I don’t have the energy to keep saying the same thing over and over. I’m sorry if I didn’t call or text you personally. I just can’t right now.

It’s so fucking unfair. It is. I wish I had the words to express the unfairness. There is nothing I’ve ever wanted more in my entire life and it just keeps getting ripped away from me. What’s worse is that I’m totally powerless to stop it. I feel so disconnected from my own body. I try so hard to be a welcoming place for these little babies but something deep inside of me keeps catastrophically failing. I can’t stop it, and I don’t know what it is. I feel like I’m living with some kind of monster, but on the inside.

Dr. L came in and talked about next steps. It was like deja vu all over again. This time she made it clear that she wants me to wait to try again, and in the meantime referred me to an NYC doctor specializing in repeat pregnancy loss and immunology, which sounds like it’s right up my alley. I’m grateful that there is a specialist in this field and that no one thinks I’m crazy. The kicker is that with Eric starting his new job, we will be sans insurance for the entire month of August. But you know what… it’s different this time. I’m not so eager to get pregnant again right away. I need a break from this drama. I need to let my heart recover.

Here’s the really messed up part. OK, so I got the dire news, left the office in tears and made some calls. Then I went down to the subway platform to go catch the bus. I was standing there waiting for my train, trying to ignore the hordes of pregnant women surrounding me (at LEAST five) when I got a call from New Hope. Non-English speaking nurse says, “Everything looks good, keep taking medication, repeat ultrasound in one week.” I’m not gonna lie, I yelled at her. I was like, “Everything is not fine, I just had an ultrasound where they told me my baby is dead. I do not need to continue taking medication or have another devastating ultrasound.” (Ever been on a subway platform? It’s rather loud. So I was essentially yelling at the top of my lungs that my baby had no heartbeat. Fun times.) We argued back and forth for a while and finally she agreed to go double check with Dr. L. Well, apparently I AM supposed to keep taking my medication and repeat the ultrasound, preferably in a week or even as early as Thursday. This works out well because my “viability ultrasound” with the OB/GYN was already scheduled for that day. But what the fuck? Are they messing with me? When Dr. L was in the room with me, she made it very clear that this ride was over. So why ten minutes later are you telling me to keep hope alive, even a tiny bit? Are you suggesting she’s the ultimate drama queen, to the point of stopping her own heart and then having it restart? That’s not even possible. I don’t understand why they would suggest something like that. I want to grieve now, not hold onto false hope for four more days. It’s like mental torture.

I’m not hopeful. When a heartbeat is apparent and normal at 6 weeks 1 day, slow and concerning at 6 weeks 5 days and gone at 7 weeks 1 day, it seems like a pretty cut and dried case, right? But last time after the bad ultrasound they had me stop medication. This time I’m supposed to keep taking it. I’m so confused. Their ultrasound machine appeared to be functioning. If the heartbeat was there, wouldn’t they have seen it?

I don’t get it. I know, despite not always being a perfect angel, that I do not deserve this. No one does. Right now the only word I can think is defeated. I feel like I keep trying, I keep trying so hard, and I keep getting defeated. Exhausted isn’t even the word. I’m weary. I’m defeated. I want to close my eyes for a very, very long time and somehow just wake up happy and pregnant.

In the space of an hour I had three generous offers for surrogates. These women who are close to me are willing, and even eager, to give me this most precious gift. It brings me to tears that they would even offer something like that. As far as going through with it… I don’t know. It’s such a big decision. Is it selfish of me that I still desperately want to be pregnant? That I want to grow and nurture this child with my own body? That I want to feel her kick and move, that I want all the morning sickness in the world, that I want to excitedly text my husband that I’m in labor rather than text him on his first day of a new job to say his child has no heartbeat? Should I give up on that dream now? We only have four embryos left. I know that I am so, so lucky to have any left at all, but I can’t help but feel like the number keeps dwindling. When do I give up and let someone else do it? When do I give up on this dream of growing my baby for myself? (There are like 400 questions in this post, it should go without saying that 99% of them are rhetorical).

Sorry this is all over the place. I thought I was more coherent than I actually am. You can all cancel your appointments with my psychic. I need to call her though, because I have just one more very important question: What the fuck happened to February?

Posted by amanda 25 Comments
Filed Under: miscarriage, the big things Tagged: defeated, miscarriage

May 23

commencing countdown, engines on

May 23

Anyone going through infertility knows that waiting is a huge part of the process. We’re always waiting for something – appointments, AF, ovulation day… you get the picture. I’m not sure if the constant waiting leads to inevitable impatience or if I’m just an impatient person stuck in a long process. All I know is that I despise all the waiting (as I’ve mentioned a hundred times before. Sorry.)

Tomorrow marks 6 weeks since the D&C. It’s been a lifetime and it’s gone by in the blink of an eye. By that I mean it feels like the tragedy is still fresh, but it also feels like eternity waiting to move on to next steps. Infertility makes you feel empty; hollow; barren. Miscarriage, as I’m sure some of you may know, defies explanation. It is the exponential version of all those words. It is more extreme than language can express.

After my miscarriage, I just wanted to be pregnant again. People cautioned against rushing things and mentally replacing the babies I had lost with a new pregnancy. It’s a tough thing. It’s tough to know when you’re “done” mourning since I don’t think you’re ever really over it. Every day just gets a little easier.

The good news is that my wait is officially over. I went for my Day 3 baseline testing yesterday. Dr. Z, who has the most abrupt bedside manner I have ever encountered in the medical field, burst into my ultrasound without knocking and barked out instructions in broken English, “You come back in 2 weeks, yes? Two weeks today. That Wednesday. We do natural cycle transfer.” He never even looked at me (which was OK, because my legs were up in stirrups at that point), just furrowed his brow and stared at my chart before rushing out again. The tech was even chuckling to herself at how he handled it. I mean, it was funny, and also a relief. I didn’t have to wait for the phone call confirming my levels were normal or abnormal. I didn’t have to sit down and justify myself to anyone, or plead my case to do the transfer this month.

I’m not sure why I assumed I would have to explain myself, but I spent the past few days preparing myself to do it. I pictured the New Hope people sitting me down and demanding to know why this happened and what I was going to do to prevent it from happening again. Turns out they’re just as eager to get me pregnant again as I am to be pregnant again. Is it because of the trial? Is it because they want as many live births to report as they can get? Probably. But that’s OK by me. I don’t need them to care about me and my life on a personal level; I’ll take a brusque bedside manner and good success rates any day.

So we’re good to go for round two. I’m happy that I don’t have to wait. I did get the call eventually and my levels are in range. My HCG is still 8 (down from 33 two weeks ago) but they did not seem to care about that. It’s low enough that we can move forward. I didn’t have to defend myself, I didn’t have to beg and plead and no one barred the doors or changed the number. It’s just like riding a bike, people… it’s just like riding a bike.

Posted by amanda 20 Comments
Filed Under: IVF, miscarriage Tagged: CD3, IVF, miscarriage, round 2, waiting

Apr 13

a day to say goodbye

Apr 13

Today was the D&C. Sad day. But you know what… not quite as sad as I thought it would be. I’ve seen a few creepy pictures meant to represent miscarriage with women who have holes where their stomachs should be crying large tears. I kind of thought that was how I would feel – hollow; empty; vacant. Like a part of me was missing. Truth be told, I don’t know if it was the power of suggestion or something tangible, but I had already felt the “presence” of them leave earlier this week. I don’t have any cravings anymore. I don’t have any sense of them being there. As a good friend eloquently said, they were both already at peace.

Part of what made this easier was how early it happened. Yes, 8 weeks is relatively late, but it’s not 20 weeks. I wasn’t really showing. My symptoms were minimal; I hadn’t yet felt any movement. These babies were definitely real and this definitely was a loss, but it could have been so, so much worse. This could have been late term. I could still be bearing the physical representation of the twins. At least my scars are mostly emotional and are hidden deep down inside of me.

Can I just point out how different this surgery was from anything I’ve done at New Hope? The preparation, the procedure, the aftercare… the whole thing took seven hours. SEVEN HOURS. For the egg retrieval they wheeled me in, someone popped in an IV and I was out like a light. But today at the hospital they made me remove all my jewelry, sign about 100 forms, verify my name, birth date and procedure every 15 minutes (yes, please keep reminding me why I’m there), and even take out my contacts. The nurse checking me in was mildly sympathetic and we chatted briefly about IVF and the clinical trial. She even shared that she had two misses (one ectopic and one that didn’t take due to fibroids) and never ended up having children. Then I had to remove my wedding rings and she ran them out to my mother-in-law, who was out in the waiting room. Unbeknownst to me, she said to Cindy (referring to me), “You know, she’s making a bigger deal out of this than it really is,” which made Cindy cry and be upset for the remaining six hours. I wish I had gotten the bitch’s name so I could complain. Seriously? I wasn’t crying (yet) and decidedly was NOT making a big deal about it to her. I was impressed with my composure. What a stupid thing to say.

I had to wait in the pre-op room for quite some time because they were running behind. The woman next to me was getting a hysterectomy and all I could think was, “Dear God, don’t let them wheel me into her OR accidentally.” My doctor came by and did one final ultrasound, which made me feel so much better. I totally forgot to ask if they would. During my wait I heard a song that I’ve associated with infertility and pregnancy (I have a whole lyrics analysis post drawn up that I haven’t gotten around to posting yet) and that’s the first time of the day I started crying. A nurse rushed over to ask if I was OK. The whole thing just felt very dreamlike and hazy because they had made me take out my contacts, so everything was so blurry. I couldn’t see anyone’s faces, all I could focus on was the fluorescent light cover depicting clouds and a blue sky.

Three hours later they finally wheeled me in, and as usual I was awake one moment and being wheeled to recovery the next. Have I mentioned how much I love anesthesia? I have no adverse reactions and it just makes me feel so… safe and comfortable. I knew I would just go to sleep and wake up when it was over. I actually looked forward to the burn of the fluid going into my veins. Sick, I know. But really, best invention ever.

I woke up with some serious cramps and demanded pain medication, stat. Some guy in recovery was screaming and raving, which did not help me come gently out of my haziness. I got back to post-op, had to wait to pee a certain amount, had some graham crackers and finally got sent home at 5 pm. It’s all over now.

As hesitant as I was, I would 100% recommend this procedure to any poor soul who has to go through this. It truly does give a sense of closure. If I had waited to miscarry naturally, it could have taken weeks or months. I can’t imagine walking around with that impending sense of doom and I really can’t imagine what it would have been like when it finally did happen.

Now I’m just trying to recoup, regroup and get on with my life. We will be blessed again. We will get through this because we are strong and we have the love and support of all our friends and family. We will have our precious babies, and we will see the ones we lost again someday.

Posted by amanda 5 Comments
Filed Under: miscarriage Tagged: D&C, loss, miscarriage, moving on

Apr 10

we’re stronger than we can even imagine

Apr 10

If you’ve ever watched Homeland, you know that Claire Danes goes off her meds and starts spouting conspiracy theories that are wild, crazy and color coded but that ultimately turn out to be accurate. I feel a little bit like that after yesterday’s post. Everyone who entertained my theory and gave me positive reinforcement, thanks. I know it probably sounds bizarre and sort of came out of left field. I still totally think that I’m right, but I also feel a little sheepish at how adamant I was that I’d “solved my problem” in one day. As usual, I need to calm down, be patient, and let things happen when they happen. I called my doctor and ordered the allergy tests. We’ll see what the results say.

I want to say thank you. Thank you for your kind words and virtual hugs and genuine concern. I always have the hardest time coming up with things to say when someone is going through something terrible, so when people take the time to put together a thoughtful sentiment, it just means a lot. I feel very blessed to know so many people (in real life and in the blogoshpere) who care so very much. Look at what my sister left for me yesterday:
gift basket
It’s kind of hard to see, but it contains chocolate, my favorite candy EVER (Hot Tamales), a trashy read (US Weekly), a cute decorative plaque, a candle and a card. She also got me daisies, which is my favorite flower. She is the sweetest.

Sometimes I get pissed off at how strong I am. I know that sounds strange, but it’s true. I got home on Monday, curled up on the couch with my dogs and my husband, ordered the greasiest, nastiest fried food I could think of and watched a few hours of recorded television. Anyone watch Shameless? Love that show. All was fine until one of the characters went for a 12 week ultrasound and I just hear Eric muttering, “Oh shit, that’s not good.” I survived watching it. People have babies and are pregnant right now, I know that. I forgot to mention on Monday that in the half a block walk between the doctors office and the subway entrance (literally… half a block) I saw two very pregnant women. One was rubbing her belly. It was gorgeous and sunny and people were outside being pregnant. Ugh, universe, you suck sometimes.

So back to being strong. By that first evening I was already feeling this steely resolve take over, but in a way it sucks. There’s a huge part of me that just wants to break the hell down and totally fall apart. I mean, really just lose it and wail, tear out my hair and be irrational. I want to physically be unable to get out of bed and face the world. Hell, I deserve that. But I can’t. Maybe it’s the control thing… maybe it’s just me. Trust me, I cried all day Monday and sporadically yesterday and today. My face is puffy and my head is pounding. I’m grieving. But it’s like right underneath that grief is this quiet inner strength that won’t let me lose my mind. It’s some part of me saying, “It will be OK. You will get through this and you will be stronger and you will have a baby one day.” So yeah… I wasn’t built for wallowing. I want to wallow so bad and I can’t do it.

Most people said things like, “I’m so sorry for your loss… please let me know if there’s anything I can do… my thoughts are with you.” All of these things were absolutely comforting and appropriate. But one person – the same coworker I mentioned yesterday who was recently diagnosed with breast cancer and underwent a double mastectomy – replied to my sad email announcement with a quick, “Are you continuing with the clinical trial? Do they keep trying until you are successful?”

At first I was taken aback but then I had to laugh. It’s just like someone who has recently gone through a tragedy of their own to be future minded and results oriented. Rather than sitting around moping, she expected me to have some answers. Rather than listening to ballads and drowning my sorrow in ice cream, she expected me to be in planning mode. I have to say I’m much closer to the latter than the former. I’m simultaneously crying and gearing up for round two. I’m both depressed and hopeful. I can’t sit here acting like things will never get better because I know that they will. (And the answers to her questions are yes and yes. The clinical trial keeps trying to get you pregnant for a period of 6 months or until you run out of embryos, whichever comes first. So they will be doing another transfer free of charge).

A few posts back I said I would be unable to suffer a miscarriage. That I would just not be able to deal with it (I would link back to it but I can’t even read my own old posts right now. It’s weird). Guess what? I’m dealing. I’m doing pretty well, all things considered. I’m amazing myself with my ability to breathe, regroup and even think about what the future will hold. Look, I got pregnant. It’s possible. It’s pretty fricking scary knowing that it can all end so abruptly, but it’s also uplifting to know that it can happen. I’m no longer terrified of pee sticks (now I’m terrified of ultrasound wands). I’m further than I was before even though I have far to go. And so many of these women who have had miscarriages have gone on to have healthy pregnancies. It can totally happen.

It’s kind of like a morbid infertility rite of passage. How many of us has this happened to? I thought I was immune. I thought I was somehow going to beat the system and overcome the odds and just sail right along to happy pregnancy land. But that’s not what happened and I’m amazed at how many women – both fertile and infertile – have comforted me by saying, “I went through this too. I know exactly how you feel.” This is just another club I never wanted to be part of and never imagined I would be part of. I hate this club and I wish it was disbanded, never to recruit another member again.

Now I’m going to get a little religious because, well, I’m religious. I believe that these babies are in heaven right now. So when I found out our babies would not be joining us here on Earth, I just kept picturing them up in heaven with many of our grandparents, my lost siblings and my Uncle Jim, all just hanging out. I may have even whispered up at the sky, “Take care of them until I get there.” These thoughts are enormously comforting, no matter what you believe. A lot of times this life is shitty and hard and they got to skip that whole part and just go right to chilling with Jesus and my deceased relatives every day. It makes me feel so much better. And this one thing I found on Pinterest makes me cry more than anything else, but cry in a comforted, validated way:
sadness (1)

Posted by amanda 7 Comments
Filed Under: miscarriage Tagged: miscarriage, moving on, strength

Apr 10

a hypothesis and a plan

Apr 10

I’m going to let you in on a little secret: I pre-write a lot of my posts. Yesterday I was so fired up I wrote two posts – one for immediate release and one for today. I’ve been doing this for a while now. Sometimes it works and sometimes it just doesn’t. Like tonight. Last night I spent two hours drafting and rewriting this (hopefully) eloquent post about strength and had every intention of posting it today, but now instead I have other things to say. Tragedy is a great catalyst for posting.

Today… well, a lot of today was all right and then parts of it were a train wreck. Let’s see… I had to wait until 3:30 for my follow up appointment at the OB/GYN. As expected, there were still no heartbeats. This pregnancy is officially over (yes, of course there was still the tiniest glimmer of hope that the doppler yesterday was broken. That’s why it’s positively inhumane that they made me wait until 3:30).

My doctor – and my mother, who I am beyond grateful attended – both talked me into the D&C. For one, it’s guaranteed – I won’t have to wait days or months for my body to do it’s thing. For another, the bleeding will be moderate, not catastrophic. And probably the most compelling reason is that we can send the tissue out for testing and make sure everything was genetically normal.

After the appointment, my mother said, “I sure could use a drink, how about you?” We went around the corner to the TGIFriday’s and got some apps and cocktails. We formed a plan. We talked. You know what I learned? I’ve been incredibly misinformed about her miscarriages. Please disregard everything I’ve ever said about diet pills linked to loss in my family. It was the diet pills – or rather, the high caffeine content in them – that kept her from getting pregnant at all. Her seven miscarriages all came from… ready for this one…immune system issues. At least, that’s what she thinks. My mother has moderate to severe food allergies that were all exacerbated during pregnancy. Not only did she lose most of them at 8 weeks, but she also heard a heartbeat before each seemingly inexplicable loss. She went to specialists and no one could figure it out. The difference in her case is that she had three healthy pregnancies before this started, which she admitted makes it a bit easier to deal with. For some reason her body just started attacking the growing embryos based on the foods she was eating. She carried my sister Allie to term after she restricted her diet and stopped eating the food that was giving her trouble.

So does any of this sound familiar? Um, yeah, just a little. Remember that one of my first symptoms was this ridiculous reaction to high fructose corn syrup. I thought it was cute, but never in a million years did I think it would lead to this. I kept on eating it because the reactions got less intense, especially to solid food form, and because it was Easter and there was lots of candy around. I could sit here and blame myself for not heeding warnings all day long. But who does this happen to? Who? Who loses a pregnancy from freaking food allergies?

I’ve been doing some research and there are numerous links between gluten and miscarriage, but none that I can find about corn syrup. Again, I guess I’m just weird. And of course this is all a theory… until I get the results of the testing. If it comes back normal, which it always did for my mother, then I just think I might be on to something here. It feels so much better to have this theory than it does to just say, “What the hell, this shouldn’t have happened.” I trust genetics. I also believe that the food we eat has massive implications on our health that we cannot fully comprehend. I’m not some high and mighty farm-to-table only nutjob. I’m just a girl who has a strong suspicion that food allergies caused her body to attack healthy embryos. And you know what I can control? My diet.

My plan for now is to eat like shit for a week, drink like a sailor when I feel like it and then go to Cayman and do the same, but tenfold. When I get back I’m going all Paleo. I figure this will take care of corn, dairy, gluten, preservatives and whatever else may be lurking in there. I’m going to request a full allergy panel from my doctor this week but no matter what the results say, I think Paleo is the safest course of action. I would (obviously) do anything to help my chances of not having this happen again. Calming down my immune system seems like a safe bet. And if I somehow manage to drop a few pounds in the process? Well, that’s just an added bonus.

This is nothing at all like the post I planned for tonight. I’m all off in allergy-ville when I wanted to talk about how resilient I was feeling. Maybe I’ll post that one tomorrow.

So my friends and I had planned to meet at happy hour tonight and I’ll be damned if I was going to cancel. My appointment ran a little long since I was bombarding the doctor with questions, and then we went for the apps and by the time we were done it was 5:15. I was supposed to meet up with them 20 minutes away at 5:30. Seeing that I was wearing yoga pants and a plain tee, I convinced my mom to switch outfits with me in the bathroom, pulled my hair into a top knot and left straight from there to go to happy hour. In the course of my travels I somehow dropped my phone under my seat to some unreachable realm, got on the highway going the wrong direction, tried to call my friend using voice command only to get the automated voice to say “POUND! STAR STAR!” and got caught in the turn only lane during rush hour. I am ashamed to admit that I did yell, “Let me in asshole, there are dead babies inside of me!” but thankfully the windows were up. I made it to happy hour – makeup-free, greasy, sweating and wearing my mother’s dress – 15 minutes late. I should note that there is an Old Navy right next to the bar and my original plan was to drink water, then go over and hunt for clearance maternity wear. Instead I used that $20 to buy vodka as I tried to ignore the pregnant person in attendance. It felt weird to drink.

I’ll leave you all with something my mom said. It was actually quite familiar. I have a coworker who is in her 30s and who was just diagnosed with breast cancer. She got the testing and eventual treatment because her mother passed away from it, otherwise she would have had no reason to do the tests. She says that her mother died to save her life. It’s terribly sad, but it does make sense. Today my mom said, “Maybe I suffered all those misses just so I could figure out what’s wrong and tell you.” Again – tragic, but maybe true. She never knew why it kept happening, but she had a good guess. Now today, with the same thing happening to me it seems like it was meant to happen this way. I have a possible cause and solution. Right now, there’s really not more I can ask for.

Posted by amanda 6 Comments
Filed Under: IVF, miscarriage Tagged: food allergies, loss, miscarriage

  • 1
  • 2
  • Next Page »

hello, my name is deeda


sister, daughter, wife, and mama to 5 sweet children on earth, 4 in heaven. self-conscious writer. voracious reader. sarcasm enthusiast. dependable Taurus. lover of broken things. reluctant adult. FOMO sufferer. drinker of coffee. burner of toast.

get post updates by email

Instagram

…

tweet with toast

My Tweets

Categories

  • all the lists (9)
  • dog things (10)
  • IVF (75)
  • milestones (34)
  • miscarriage (27)
  • miscellany (108)
  • monthly updates (51)
  • parenting mishaps (34)
  • pregnancy (67)
  • the big things (44)
  • the little things (66)
  • Whole30 (4)

search the site

Archives

Theme by 17th Avenue · Powered by WordPress & Genesis