Friday, August 31, 2018

Summer 2018

One of the most popular questions people ask around back-to-school season is "what did you do over the summer?" I feel like honesty in this case is TMI. I had a lot of procedures and spent most of my time in doctor's offices? I cried a lot? I worried about the future? It was too hot and gross to be outside?

It wasn't the most relaxing or fun-filled summer. We did accomplish a lot though, such as crossing off several items recommended by the RPL specialist. Whether or not that means we're closer to our goal, who's to say. It was an investment in our future so I don't regret spending it this way.

May
- Varicocele repair surgery
- Visit to RPL Specialist in NY

June
- Glucose/insulin testing
- Toxins bloodwork
- Hysteroscopy and CD138 stain

July
- Quest to figure out cause of headaches, including visits to: ENT, physical therapist, eye doctor, PCP, and endocrinologist
- Start medication for blood pressure

August
- IVF 8
- Pathology results for CD138 and start of antibiotic treatment
- Post-op appointment for varicocele repair

Maybe next year we can do a relaxing beach vacation or fun travel trip. For now, this is the honest answer to what we did over the summer.

In store for the fall season, in no particular order:
  • Retest CD138
  • Natural cycle ERA
  • FET or IVF, depending if any embryos available
  • Retest glucose/insulin
  • Follow up blood pressure

Thursday, August 30, 2018

IVF 8: Embryo update day 7

Two additional embryos were biopsied yesterday making it four total frozen. Two were in poor condition and had stopped growing so they were discarded. There was one that had reached close to blast so they gave it an additional day to grow. I didn't get the usual early morning phone call so assumed it didn't make it. By 11 I still hadn't heard so I called and left a voicemail. News was as expected - didn't make it. 

In total we have four embryos frozen and the cells are on the way for genetic testing. Obviously at this point there's really no way to know and no point in speculating. In IVF 2 we sent six embryos to get tested and 0/6 were transferrable and all discarded. Over a year later we sent another six embryos from IVF 4 to get tested and three came back healthy. We'll have the final tally of how many are transferrable, if any, once we get results. Hopefully it won't take longer than a week, but it may due to the holiday weekend.

Taking it day by day to keep the anxiety down, sometimes minute by minute when the stress gets overwhelming. The time will pass, I know. We just have to get through another wait.

In the meantime I'm trying to avoid social media and the adorable gut-wrenching milestone first-day-of-school family pictures. A fellow anti-social friend asked if there was an app that changed back-to-school pictures with videos of dancing cats. If only.

Tuesday, August 28, 2018

IVF 8: Embryo update day 5

Two embryos made it to blast and were biopsied today. That seemed like good news to me, especially considering that in our prior seven cycles we've never had anything biopsied before day 6. 

They're still watching five embryos. Three are in compression stage which is right before blast, plus two others in various stages of development. They're giving all five an additional day to grow.

We got the news first thing in the morning so I appreciated that they didn't keep us on pins and needles all day. As the day wore on and things got more stressful at work I got annoyed and upset. At one point I felt like I had a severe hormonal dip because all I wanted to do was cry.

This is a stressful ride. I'm trying not to hold bitter feelings toward people who didn't check in during the roughest patch. For example I found myself being upset at coworkers in whom I've confided in the past and knew surgery was happening but didn't check in day of surgery or the rest of the weekend. Only when I came in on Monday did they ask about it. Yes they were on vacation but they're so addicted to their phones that they responded to email the whole time away from the office. It's not that hard to send a text. It sucks to go through something that feels huge to me but means little to someone I thought I was close to the point of forgetting.

I think I'm also sensitive about this because it's not like the list of people I confide in is so long. I've distanced myself from friends and relatives and really anyone else whose presence added to the hurt over the years. I've unfriended or unfollowed people on social media if their posts were too much. I've declined invitations to lifecycle events that didn't seem like would be a good idea for me to attend. I may have done too good a job keeping the distance because now it feels isolating and lonely. A while back I though it would be a great idea to befriend people in similar situation. The plan worked until those people got pregnant and moved on.

Maybe I'm hormonal. Maybe I'm just expecting too much of the people I've kept around. Maybe I'm sensitive about it and this is just normal relationships. Maybe I've become a sucky friend over the years and just don't realize it.

Monday, August 27, 2018

IVF 8: Embryo update day 4 and recovery

Yesterday I got another call from the clinic with an update. There was actually no news which was good news: they were all still being watched. The call woke me up on Sunday morning - not that it was so early but we had stayed up late watching Parks and Rec on Netflix - so I didn't catch the information when she mentioned the grade of each embryo. It didn't bother me to miss it because I knew the only thing that matters is the number that makes it to blast. I don't think we get another call until tomorrow.

Recovery has been going pretty well, all considering. There was an episode where I was incredibly uncomfortable due to the constipation but eventually that worked out too. There were probably a few factors that led to the easier recovery: less eggs retrieved, I knew what to expect and prepared in advance, started drinking electrolyte water in a few days before retrieval. Or it was a different clinic and their methods are just different. There's no way to know for sure. Regardless, the physical aspect has been pretty manageable. I used the heat pad for the first two days. No Tylenol or other pain meds needed at all.

After the retrieval we both started our dose of antibiotics in prep for the retest of the CD138. Over the weekend we discovered that not only do I not tolerate doxy, but my husband doesn't tolerate it either! Half an hour after taking his first dose, he was feeling awful. At first he thought his stomach was upset because it was empty so he ate something. That was a bad idea because shortly after it ended up being projectile vomited, redecorating our living room with some even making it into the toilet. So now we have matching z-paks, clearly labeled with our names.

I'm back at work today. I've been feeling better every day since the procedure, but I think that's because I've been home in my PJs and mainly chilling in bed. Today is the first day I'm up and dressed and expected to be alert as a functioning adult and it's really hard. I have a headache and I'm slightly nauseous. If I make it to the end of the day, great. If I feel like I need to go home, I will. I planned enough ahead at work that even though it's a really busy time of year for us I'm on schedule and won't fall behind if I need to take another day to recover. I'm lucky I still have 2 use-or-lose sick days that expire at the end of the month so I have no problem using them.

Friday, August 24, 2018

IVF 8: Embryo update day 1

I let the call from the clinic go to voicemail this morning because I was scared to hear what they were going to tell me. Then immediately checked voicemail because I had to know. Obvs.

Of the thirteen eggs that were retrieved, seven fertilized. I wasn't immediately disappointed by that number but as the news sunk in I got more upset and worried and then spent a few hours crying.

We've already gone through worst case scenario -- three times!! -- so I already know what to expect and already know we've been ok after. IVF cycles 2, 3, and 7 were all a bust with zero healthy embryos to transfer even after retrieving a combined 56 eggs from those cycles. It just shows that it doesn't matter how many eggs are retrieved or fertilize or make it to biopsy - the end result is the only one that matters. I was still upset. For sure the hormones have something to do with it.

Pain levels are being managed entirely with taking it easy. I ordered in food for the weekend. So far no pain medication at all necessary - not the prescription stuff or anything OTC. As long as I take it easy I feel fine. It is a world of difference from previous retrievals.

Thursday, August 23, 2018

IVF 8: Egg retrieval

We woke up at an absurd hour to get in at the time they told us: 6:00 AM. We waited nearly an hour in the waiting room before they took me back. I'd like to think that there was a reason for asking us to get there so early, like maybe they can't set up the OR until the patient arrives or something.

Because we arrived so early they wanted my husband to produce at the lab instead of at home. That was one of a few differences in the the new clinic vs the old clinic. The other difference was that we were the only retrieval scheduled for the day. They don't batch their patients like the last clinic so it's based on people's natural cycles - when you're ready, you're ready.

At my scheduled time they wheeled my bed toward the OR. At the doorway they had me walk over to the bed and started setting me up. They put on an oxygen mask and I was out within three breaths. I came out of anesthesia back in the prep room about 40 min later (they let me wear my watch). The pain was not that bad and I wondered how much pain killers they gave me.

Shortly after the nurse came in to tell me how many eggs they got and I realized why I'm not as bloated. They got 13 eggs. In the past they've gotten nearly 30. To say I was disappointed is an understatement. I couldn't stop sobbing. So much so that they went to get the doctor to come explain things to me. I wasn't confused, just so sad. I felt like there's so much attrition to our numbers that starting out with thirteen was basically telling me our cycle is doomed.

They tried to make me feel better telling me that I was on a low dosage to get quality over quantity, and that the embryologist had already looked at the eggs and determined that they were "great," whatever that means. I tried to reel in the tears -- at least when I cry at home no one bothers me. I didn't want them to waste time trying to make me feel better, nothing they said was going to help. It wasn't just the disappointment of the fewer number of eggs; it was the whole summer and everything we've gone through, plus all the hormones just making me feel like a complete mess.

I managed to hold back my tears to get recovery instructions, get dressed, and be discharged. When we got home I spent some energy alternating between crying fits and yelling at my husband. After eating something I passed out for like 4 hours and woke up a different person. I'm a lot calmer. Logic seems to make sense again. I know a lot of people would be thrilled with thirteen eggs; I shouldn't let our past failures bring me down before anything even happens. At this point it's too soon to know and it really can go either way.

Other than my parents no one has checked in. I've mentioned that we're in the middle of a cycle to friends and other family members, and a lot knew that today is surgery day. Nearly everyone I know is traveling or at the beach or on vacation, getting a few last minutes of summer before school starts. It feels like everyone is kinda sick of hearing about ivf that maybe it's easier to ignore and forget about it.

Pain is at a 3 out of ten. So far I haven't taken any meds - I have ibuprofen and some of the good prescription stuff but just don't feel like I need it yet. I have eaten a ton of junk food though. No regrets.

Wednesday, August 22, 2018

IVF 8: trigger and CD138

Yesterday I went in for this cycle's final monitoring. Those lab techs are the best I've seen - one stick every time for bloodwork. Results came back and we triggered last night. Egg retrieval is scheduled for tomorrow first thing in the morning so I took off Thurs and Fri from work.

During my hysteroscopy in June they took a biopsy for a test that the RPL specialist recommended called the CD138 stain. The hysteroscopy was one way of checking for inflammation (and possible other issues) and this stain was another test for something similar, looking for micro inflammation not as easily visible and oftentimes overlooked. It took a while to get the results back and then send them out again for more testing - a total of 7 weeks for the process. 

My doctor called me yesterday with the results: turns out the test came back positive for micro inflammation, aka chronic endometritis. This is a known factor to hinder normal implantation of an embryo and its subsequent development. When I got the news I kind of just took it, asked the doctor my initial questions, and listened to the next steps. As the afternoon wore on and the more I thought about and researched it, I was overwhelmed by emotions:
  • Hope: this is finally it - the reason for all the loss
  • Skepticism: some articles say that past history of abortion causes CE, so maybe it's not the original cause of the issues but rather a side effect of all our treatment
  • Sadness: why wasn't this thought of sooner. it's such a simple fix, why did we go through all that we did if this is answer
  • Fear: what if treatment doesn't fix the issue. what if we fix this issue and still lose the pregnancy. what if we fix the issue and it comes back before the transfer.
According to this article, "pregnancy outcomes after treatment for CE in women with RPL are encouraging." The treatment is a dose of antibiotics. I just want to cry.

So what does this mean now? After the retrieval both my husband and I take a round of antibiotics. Then we wait for my period and retest this CD138 stain next cycle. We'll wait for the results before scheduling the ERA/transfer because obviously we want to ensure that the lining has been cleared up before attempting a transfer.

We were originally going to take September off for the Jewish holidays, but now I'll plan to do this biopsy during my September cycle. It wasn't feasible to do a natural ERA cycle with all the yamim tovim, but a scheduled biopsy is plannable and there's no reason to wait, especially if results take a while to come back.

I've stalled on my diet. Not because I'm eating differently but I think I'm retaining fluid from my expanding ovaries. Is that a thing? I also lost a lot last week so I think may just be a natural plateau. In prep for the retrieval I started drinking smart water yesterday so that it's already in my system. I'm also looking at nearby gyms and will consider joining if I can make it work with my schedule. The weather has been too unpredictable to be outside and as much as I want to make it work, I'm just not working out enough at home. I got my cleaning crew in yesterday and caught up with laundry to make sure I'm not tempted to overdo it after retrieval.

I really hope this is it. I don't know how many eggs will be retrieved. I don't know how many will fertilize and make it to blast and through the other side of genetic testing. Of our previous seven cycles, three cycles results in no embryos to transfer. Going into our eight egg retrieval, I know the next weeks are going to be a roller coaster of emotions. I can only hope we get a few good embryos to finally start our family.

Monday, August 20, 2018

IVF 8: CD13

I was in yesterday for monitoring; back again this morning. I think I've figured out the system: since the bloodwork lab is on a different floor than the rest of the clinic where ultrasounds are done, and each has their own sign-in sheet and wait time, it has to be properly managed for maximum efficiency.

Since ultrasounds take longer between people, it's key to check in and get on that list first. Then you count how many people are ahead of you and multiply it by 5 minutes each. Even though it takes longer than that per person, there are multiple monitoring rooms so it averages out. If there are more than 3 people ahead, it's worth it to go down and to try to get bloodwork done in the meantime. When it's not crowded, bloodwork takes about 5 minutes total. If it is crowded, the wait can be up to 3 minutes per person in the waiting room, because there are multiple people drawing blood. The most I've seen was a full room with 20 people. It's a crapshoot and you never know what will be until you get there.

This morning I got there at 7:15 am and signed in upstairs. There were 8 people ahead of me so I went down for bloodwork. There was only one person ahead of me there. I was back upstairs with only one person ahead of me. Total time from leaving the parking lot to back to my car: 38 min. Score! That's a lot better than last Monday when it was 1 hr 45 min.

My dosage is a lot more conservative than in previous cycles but I'm still responding well. Some follicles measured in the 18s this morning. There were some 15s and 16s so I bet they'll stim another day to give them a chance to grow. There were also some smaller ones in the 9s and 11s. It was about 20 all together but I don't think the smaller ones count if they don't mature and fertilize.

I have enough meds to stim tonight. If they decide to go longer I'll have to reorder meds. As it looks right now, I think they'll stim tomorrow with a retrieval Thursday. Waiting for bloodwork results to confirm.

Friday, August 17, 2018

IVF 8: CD10

Back today for more monitoring. I overslept this morning. I couldn't get out of bed when my alarm rang and then dozed off, resulting in a half hour delay to the start of my morning. Worked out fine because when I got in, there were only three people ahead of me instead of the usual 10+ and even though I got in at 8, I still got seen at 8:20 like I have the past two times getting there an hour earlier.

Bloodwork and ultrasound were fine. Follicles are now measuring in the 12s. They told me to make sure to have enough meds to get me through the weekend. Retrieval might be Wednesday or Thursday.

My blood pressure is much better. The headaches are slowly receding. I feel the intensity lessen every day. On Thursday I called my PCP, who is back from vacation, to ask if I need to come in for the headaches. She said that it takes time for the medication to address that symptom, even if the bp readings have stabilized. I could take something for it, like Tylenol, but wanted to make sure it wasn't something more. I'm glad that was a quick phone call instead of another appointment. I don't even care if I sound like a crazy person calling the doctor for every little thing. I'm paying for insurance premiums, this is what it's there for.

I'm 14 lbs down from the start of the summer. Still a while to get to my goal. I hope to lose another six before I get the glucose/insulin testing done again for the specialist. It's an arbitrary number but it would make for a nice round figure lost during the summer. I know the retrieval will throw a monkey wrench in this plan because I tend to crave comfort food after surgery and my will power is shot, plus the bloating and fluid retention don't help. I'll have to meal prep healthy food in advance so we don't rely on takeout.

I had to run to the specialty pharmacy for the third time this cycle to restock meds. I was trying to only take as much as I needed without going over because they're so effing expensive. But it's running me ragged. There's no delivery option and it's a 20 min drive in each direction. I know it's not a lot in theory but it's proven to be a challenge. Even more of a challenge: finding a quarter to pay the meter to park near the pharmacy. Who carries quarters anymore? It's likely that it only seems like a big deal because I've been so tired and dealing with a non-stop headache going on for a month now which sap all the energy from me.

I've been having bad dreams the past few days. Most of the time it's around 5 am and when I'm up, I'm up. It's not helping the fatigue. I think it's a symptom of all the meds. Or maybe I need to cool it with the murder mysteries on Netflix.

During my month-long quest to figure out the cause of my headache I asked my endocrinologist if I could come in to get my TSH checked to see if the dose needs to be tweaked. I went in over two weeks ago and bloodwork isn't back yet. I think they lost it. I don't love the location and I'm not wowed by the doctor - she didn't come recommended, just picked her out of an insurance list. Not sure who I'd go to instead, and now that TSH is basically under control with only 6 month follow ups, is there really a reason to switch.

Monday, August 13, 2018

IVF 8: CD6

Back today for more bloodwork and ultrasound. They found a few 8s and 6s on the left; a few on the right too small to count. They're a lot more conservative with the meds in this clinic, even knowing that I was on bc pills which are known to suppress the ovaries.

Speaking of bc pills, I've had adventures with my blood pressure. I've been monitoring it for a few weeks now, ever since the headaches started. It was slightly high but nothing crazy, like 130s over 80s. I know that bc can cause elevated blood pressure in some people who are sensitive to estrogen. I had that a few years back. But over the weekend, my pressure spiked to 150s over 100s. Then it just stayed there. It also came with a headache which really concerned me. I spent Sunday in bed, trying not to aggravate it lest it become a full-blown migraine. I took tylenol at some point which made it bearable. All day I kept taking my bp and even after lying down for a while it was still high. I have an appointment with my PCP to follow up about blood pressure but I wasn't sure I should wait that long. Eventually it freaked me out enough to go to urgent care.

The first reading they got was 175/92. If I wasn't already at urgent care that would have set me in a panic. They retook it again a few min later and it was back to the 150s I'd been getting all day. I'm not in denial but I think the first cuff they used was for kids. In any case, the doctor there wasn't as concerned about my 150s but he took blood and urine to make sure kidneys aren't malfunctioning. He said that if it spikes to 180s or above to go to the emergency room, not even urgent care because they wouldn't be able to deal with that.

This morning I called my PCP and asked for a sooner appointment even though I know my doc is away on vacation. I didn't want to leave this untreated, especially because of the headaches but also because it's freaking me out. When I came in the doc there also wasn't alarmed at the 150s but looking back at my history and seeing the repeated elevated levels, he recommended starting medication to help lower it. He said to keep my appointment with my own doctor for next week but in the meantime he gave me a prescription that needs to be taken every 12 hours. Hooray, another pill.

I was very resistant to going on bp meds as a preventive measure. It felt like a personal goal to try to control it with diet and exercise. But at this point my ego is shoved aside as panic mode sets in and I'm freaked out enough that I'll take whatever medicine they tell me to get things back in order. I don't want to fear the veins in my head are going to pop, or that every twinge out of place is an impending heart attack. I have enough stress with the cycle that I don't need those fears lurking behind high bp. All that aside, I need to make sure this is under control before even considering a transfer.

I confirmed with my RE that there's no adverse reaction to adding bp medicine to the mix. And I confirmed with the PCP office that whatever medication he gives me is safe for pregnancy so that I don't have to deal with switching it and finding a new dose once we're ready for a transfer.

Other than a blip over the weekend I've been doing well on my diet. I don't know if that's a contributing factor to the elevated bp, but even now 48 hours later I doubt that food is still in my system yet my bp was still high. I'm down 12 lbs from the start of the summer. I cut out most sugar/flour at the suggestion of the specialist to try to get insulin under their preferred numbers; and now I've cut out most salt and sodium as well. My daily food consists of a lot of colors and while it's not fabulous, I'm not hungry and I'm not bored.

I'm concerned about retesting my glucose and insulin in the fall and being told that everything I did wasn't enough and that I'll have to add metformin to the mix. I will if I have to, but I was really hoping I wouldn't have to. Another ego thing, plus I hate taking all this medication.

At monitoring this morning there were a lot of couples. I don't remember seeing so many at the last clinic. I'm still working on a post comparing the two. Every time I list the crap the old clinic did I get angry and put the list away for another time. I don't actively trash-talk them but if someone asks about my experience, like on the fb support group, I'll share my thoughts in private.

Thursday, August 9, 2018

IVF 8: CD2 - Baseline

I went in for bloodwork and ultrasound this morning. All told it took an hour and 45 min. I know there's a better way, I just need to learn the system. When I have time, I plan to write a list of all the differences I've found so far between the old clinic and new clinic.

There were a lot of stories from this morning but I don't have patience to write them out. It had to do with the resident doctors, the fact that the labwork is on the first floor of the building and ultrasound is on the third, and just in general things being run differently. Also it was weird and uncomfortable to have an ultrasound on my heaviest bleed day.

One story I will mention: as I left the ultrasound room rushing to make sure to get to bloodwork before the morning cutoff time, I saw my doctor who greeted me warmly and mentioned offhandedly, "Hey, did you know your records indicate you're not immune to Rubella?" I had this issue before and had to get the MMR vaccine in 2015. I told my doctor I can resend the immunization report. She said in the meantime she'll add the rubella to my bloodwork to verify whether or not I'm actually immune. Spoiler alert: report is back and I am.

Bloodwork results came back and I got a call around 11:30 - good to start. I started shots this evening and we're off!

Wednesday, August 8, 2018

IVF 8 eve

We're on the cusp of our 8th IVF cycle.

It hit me like a ton of bricks last night and now I'm terrified of another failure. The thought that we did all that we did to get to this point, and made all those changes in hopes for a better outcome, only to be dealt the same story is terrifying. It's terrifying even more because I don't know where we'd go or what we'd do from there. I hope we don't have to find out.

I dread the physical pain my body is about to go through but it's not nearly as bad as the emotional roller coaster during a cycle. Both of those together are a fraction of the anxiety and pain of a failed cycle or another loss. The alternative is to stop trying and I'm not ready for that.

We checked off everything on the list, I have the meds, I took the class, and called in my CD1, so.... here we go again.

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