Thursday, November 6, 2014

High Risk Doctor

Once I was transferred from my RE to the OB, I started following a normal pregnancy appointment routine with the exception that I would also have to see an MFM for the duration of my pregnancy. An MFM is a maternal fetal medicine physician - or someone used to dealing with higher risk pregnancies. Because I was pregnant with multiples and because I was quickly approaching what the obstetretics deem "advanced maternal age," it was determined an MFM should help follow the pregnancy.

In my pregnancy with Zachary, I had gone to an MFM for a couple of visits because I wanted to get the NT scan. The physician that I saw is one of the only high risk pregnancy physicians in our area (and I live in a pretty large metropolitan area!) and so many of my co-workers had also gone to him for high risk pregnancies. He was deemed Dr. Amnio by these co-workers because of his fondness for putting significant pressure on patients to have an amniocentesis. All of the co-workers that had gone to him for the duration of his pregnancy had been asked multiple times to have an amniocentesis. I figured that I was walking in fully aware of this and that he wouldn't pressure me for anything.

We went through the NT scan with little issues, both babies were measuring perfectly and we were scheduled to come back in a month.

The time for the next appointment came and we had another ultrasound. The thing about high risk pregnancies is you get a TON of ultrasounds. I get to see the babies at least once a month. It's kind of cool. Again, the babies were measuring completely normal and on track, but this time, Dr. Amnio saw a problem. I had been expecting this conversation but still felt instant anger at him.

"Baby B has what appear to be enlarged brain ventricles." What did that mean? Normal ventrical range fell under 10mm. Baby B had ventricles currently measuring 9.5mm. Sooooo...he's still at the high end of normal? Yes but I think we should get this very expensive and not covered by insurance blood test. And if that comes back with an issue, we'll want to look at fetal MRI or amniocentesis. There it was.

After some arguments with the doctor (in the middle of his waiting room no less), it was determined that I would do the quad screen initially because that was covered by insurance. While it had a higher false positive rate than the other blood test, at least we could start with the least expensive option and go forward if we needed it.

I gave the blood and we sat on pins and needles for a week while we waited for the results. When the results came in (negative for all three major trisomies and negative for neural tube defects), I decided I would not step foot in this physician's office again. I knew there was another MFM that I could be referred to and at my next OB appointment, I asked to be referred. Within a week I had my appointment at the new physician scheduled and was moving on.

Monday, November 3, 2014

The Way Infertility Feels

It was only after we "beat" infertility that I began to reflect on just how much infertility steals from you. It is often not viewed as a "real" medical issue. I recently watched a story on the news about how a couple has been trying to get pregnant for years, has spent over $100K on fertility treatments (including using donor eggs to increase the success rate) and was now crowd funding $15K for adoption. The comments on the article's Facebook listing were downright mean. "Why not just adopt at the beginning?" "Why use  fertility treatment? You should just pray more and rely on God's timing." "Just relax."

What I realized when we were going through fertility treatment was that nobody could measure how badly we wanted a child except us. And that the vast majority of fertility problems were caused by legitimate medical reasons. And that insurance companies (with the exceptions of some states that require fertility coverage) do not care about those issues unless you have good insurance. And that OB/Gyn physicians typically know very little about getting you pregnant. They are VERY good at keeping you pregnant, monitoring typical gynecological health issues, and delivering babies, but their expertise does not touch getting pregnant when nature doesn't take it's course. That's why there is a specialized field just for Reproductive Endocrinologists.

I didn't realize how beat down I was until the first trip to the doctor. Calling and scheduling the appointment was very scary. Going was even worse. After our consult with our amazing doctor, he ordered about a thousand vials of blood to be taken. The nurse put her hand on my shoulder and said, "Don't worry honey, when we get you pregnant, we'll transfer all these results to your OB so you should hopefully have less bloodwork to do." My eyes teared up. She said when they get me pregnant.

It was hard to do the treatments month after month and still have no results. I had huge hopes once we finally got through all the testing and started actually doing the treatments. I hoped that it would only take one cycle of treatments and everything would be okay. When I saw the negative pregnancy test that month, it hurt. Badly. It is a hopeless feeling. And I felt like a failure. I felt like less than a woman. It's supposed to be easy. You're supposed to be able to get pregnant and carry a baby. And I was broken. I cried so many times to my husband about my broken body and remember him holding me and telling me I wasn't broken.

I know it was hard on him too. Especially because his numbers came back so amazing. Nothing was wrong with him, nothing. And I know he wished he could take the pain away from me. I remember him telling me that he was hoping against hope that when the tests came back it was him. Something would be wrong with him. Because I'm too hard on myself and I'm too perfection driven. He knew I would tear myself apart if it was something wrong with me.

It's even harder with secondary infertility because people understand you seeking treatment even less. And it's harder to realize you need help. I didn't need help the first time. It took longer than I thought but we did it on our own. It was bizarre to me that we would need help with something we had already done. And society at large along with the infertility community both look down on you. The comments are the same - "at least you already have one" "how selfish, just love the one you have" "you don't want to lose all your money in fertility treatments when you have another one to care for."

Even after getting pregnant, it was hard to actually accept that it happened. I kept the positive pregnancy test but I only ever took one. I thought I would take a million just to keep proving to myself that I was actually pregnant, but the truth was that I was terrified that I would take a test and it would be negative and I would have to start all over again. I just worried every time a symptom diminished or disappeared. I worried about waiting until 7 weeks to search for a heartbeat. I analyzed everything my body was doing to "prove" to myself that I was pregnant. I sought out the advice of my friend who had suggested fertility treatments in the first place and her response was "I would expect no less from someone with a previous loss and infertility in her history. It's normal and I understand." She and my husband kept me sane until the ultrasound where we saw the heartbeats.

Wednesday, October 22, 2014

Ramifications of Twins

Later that night, after the ultrasound was done, after the discussions of costs at daycare were done, after Zachary was picked up, fed, bathed and sent to bed, Mike and I sat in semi-shock. It was weird to think that I was pregnant after so long trying. It was hard to fathom that I had two babies growing inside me.

We fell asleep and at 2 a.m. I woke up, terrified. I realized we were having two babies. Two babies at one time. What would we do???? How could we afford this? What would this do to Zachary? A sudden bout of nausea overcame me and I ended up in the bathroom throwing up every little thing I had for dinner. Mike joined me in the bathroom and asked me if I was beginning morning sickness. I replied, through tears, "No, we're having twins!!!!!!"

For weeks after, I became sullen and angry as I tried my very hardest not to resent my pregnancy. I felt like we had ruined our chances at having a normal life. Things began to change so fast. Mike is lucky enough to work for a company with multiple shifts and especially lucky to work with a company that respects him and was willing to change his shift so that we would have no daycare costs. I work during the day and he works at night. It is not very fun for us as a married couple, but we'll be saving nearly $3,000 each month in daycare. I was worried about how this would affect Zachary. He is our everything. I know that us having a newborn in the house would reduce the amount of attention he gets, but can you imagine having two newborns? I was worried about everything and I was taking it out on my family.

One day Mike pulled me aside and asked me what was wrong. I couldn't tell him. I felt like the worst person alive. I was questioning whether we made the wrong decision because my decision to pursue fertility treatments was causing such huge changes in our family. He kept at me until I let it all out. I was upset, I was regretting becoming pregnant, I was worried I was going to hate the children I was busy growing. And I was terrified that I was an awful human being for having these feelings. Mike let me know that he had been through all of those feelings himself. That he still had them sometimes. But that we were headed this direction now and the only thing we can do is face it together as a family and know that we are strong enough as a family to handle any and all challenges thrown at us. It was a strange foreshadow to what would come next.

The Ultrasound

It seemed to take forever to get from the Beta test to the first ultrasound. Having been seen by the doctor on almost a weekly basis for the past six months, I started to go through withdrawal. Plus, having a history of miscarriage and infertility, that time was spent sitting on pins and needles waiting for definitive answers.

The day finally came that we had our dating/heartbeat verification ultrasound. Mike and I drove to the office we'd been so familiar with for so long and saw the doctor who had never lost hope in us. As we walked into the ultrasound room, I remember Mike joking with the doctor, "Just don't tell us it's twins and we'll be fine." The doctor responded, "I really doubt it's twins, you only had one good follicle this time!" We started the ultrasound, holding hands, waiting to see the tiny precious flicker indicating a strong heartbeat. The doctor cleared his throat. "How do you feel about twins?" There, on the screen, sat two tiny jellybeans. Two tiny heartbeats. Two tiny humans growing.

Mike's exact words were "Are you fucking kidding me?" and he dropped my hand. He turned ash white and the nurse later told us she was fairly certain he was about to pass out. I started crying. Not because I was upset (certainly I was surprised!) but because there were heartbeats. We had what looked to be a viable pregnancy.

I was fairly angry at Mike for the way he reacted. All I wanted was to complete our family and he was upset at the very time that we were finding out that we were on the road to doing that. After the ultrasound, they brought us into an office so they could give us the paperwork to complete the transfer from their care back to my regular obstetrician. I yelled at Mike about his inappropriate reactions until the nurse walked in. He kept apologizing but insisting that he was thinking about things like daycare costs and having to buy a bigger vehicle.

The nurse brought in all our paperwork, gave me tips on how to handle pregnancy and we got two teddy bears that showed the world we were leaving the practice successfully. Those bears will be given to the twins when they're born.

Friday, October 10, 2014

Injectables

After finding nothing wrong during surgery, I was pretty depressed about our chances. We met with our doctor again and went over everything we had been through thus far.

One great thing about our doctor was that he was an incredibly nice guy. He is passionate about his chosen field and is very sensitive to the emotions that infertility generates. I cried more than once in his office and always felt very comfortable asking any questions that came up. I have recommended him frequently.

He suggested we move on to add an injectable medication to my cocktail of drugs. We would follow the same schedule we had been - cycle day 3 ultrasound to verify no cysts, days 3-7 Femera taken between 6-8 p.m. each night, day 10 ultrasound to measure follicles, and, if everything went well, trigger shot that evening. The difference is I would add Follestim, an injection containing FSH every other day on days 3, 5, 7, and 9. Another shot to give myself. Yay.

We started with the new month and things seemed to be progressing nicely. On day 10 I went in for my ultrasound and they didn't find a single follicle that was mature enough that they felt comfortable having me take the trigger shot. I was devastated. I was sure our journey was going to lead to IVF and I was still uncertain if we would ever be ready for that path. They were fairly confident, given a little more time and a little more medication, I had one follicle that would develop, so they suggested I take another shot of Follestim the next night and trigger two nights later.

This was the cycle I conceived. I was positive that I wouldn't, but the doctor said to take a pregnancy test fourteen days after I triggered. I did. Two pink lines. I woke up Mike. I didn't believe it. Two pink lines. We were going to have a baby!

I called my doctor when they opened and they had me come in for a beta test (that measures the pregnancy hormone HSG). My initial numbers were well within a normal range for a "normal" pregnancy but that's not really what matters. They want you to come back within 48-72 hours to make sure that your beta doubles. That's the true sign of a strong pregnancy. The numbers doubled. They declared me officially pregnant and told me, barring any issues, to come back at week 7 of my pregnancy for a dating ultrasound and to verify the baby had a heartbeat.

Somehow, my most depressing cycle ever had produced the most fabulous results.

Thursday, October 9, 2014

Surgery

After three unsuccessful months of trying with medication and trigger shots, we sat back down with our doctor. He told us he thought my potential endometriosis was playing a larger part than we initially thought and we had reached another crossroads.We could either move forward with surgery to hopefully take care of the endometriosis the doctor suspected I had or we could move forward with IVF.

IVF scared both of us. I know two couples who conceived via IVF and both told me it took them a very long time to be ready. The costs of IVF are overwhelming - you're typically looking at either one cycle at around $12,000 or you can purchase (at the office I was at) a "guaranteed" set of cycles at $20,000. That got you four cycles of IVF and if you weren't pregnant at the end, they would refund you the cost of the procedures. They do not refund the costs of the medications and those are typically what are so overwhelming. Plus, IVF is very taxing to your body. We decided we would try the surgery.

It took about a month and a half to schedule the surgery - We based the surgery around my cycle and then had to postpone it another month because of a previously scheduled trip to visit my family.

The day of the surgery we were at the hospital bright and early. I was called back into pre-op. They got me in my gown and booties and then let Mike come back. I was poked, prodded, spoken to by several different hospital staff members and finally the anesthesiologist came. He smiled, held up a needle and said "Bar's open." He injected the happy juice into my IV and the world became a soft and hazy place. Everyone laughed and called me a cheap date and then I was kissing Mike see you later (they don't say goodbye in pre-op) and I remember being pushed to the operating room. The only thought I remember was thinking they should clean their hallway - it was filled with extra hospital beds.

The very first thing I remember after surgery was being pushed in my bed towards recovery. I heard someone say "Nope, didn't find a single thing, clean as a whistle." I knew somehow that they hadn't found any endometriosis. I started crying and the nurse asked me "Honey why are you crying?" I couldn't answer yet, but inside my heart was breaking. I was so sure there would be a REASON why we were having such difficulty getting pregnant and if I didn't have endometriosis, it meant I had unexplained infertility. Which meant...a game plan just got harder.

It's a strange place to be in, wanting the doctor to find something wrong with you and being heartbroken when there is nothing wrong.

While I was in recovery, my doctor talked to Mike in the waiting room. Turns out, my gut feeling was right. They hadn't found anything. No endometriosis at all. The doctor talked about reasons he felt that I might be having difficulty obtaining pregnancy but we knew now with 100% certainty that it wasn't because of endometriosis.

After I woke up some more, I was moved to another step down unit. Here I had to eat, drink, and use the bathroom. Once I was able to do all those things, I could go home. Mike was allowed to be with me in this unit and I was eager to get out of the hospital so I completed my steps as soon as I could and then we were home. I had the surgery on a Thursday morning and by Monday morning I was back at work. We scheduled another meeting with our doctor and got ready for the next step in our plan.

Wednesday, October 8, 2014

The First Month

Infertility treatment is exhausting. It is invasive and time consuming and just all around consuming. It's hard to think about anything else when you're constantly being monitored and you see your nurses more than your own family.

Most REs (reproductive endocrinologists) start with as little treatment as possible. When we were given the diagnosis of possible endometriosis, we had two ways we could proceed. I could have a laparoscopic surgery to verify diagnosis (it is impossible to officially diagnose endometriosis without surgery) and hopefully clear up any spots that were causing issues with a laser treatment; or we could move forward with medication for a few months and hope to avoid surgery. We decided to try medication first as it was far less invasive and our doctor agreed with the path we chose.

You start every new cycle with an ultrasound. On cycle day 3, you go in for an ultrasound. They monitor to make sure that you don't have any ovarian cysts, because ovarian cysts will respond very positively to the medication and can grow out of control. If no cysts are found and your uterine lining appears to be shedding appropriately, you get the go ahead to move forward with medication.

My RE put me on Femara (generic name Letrozole), which is actually marketed to be a medication for use in post-menopausal breast cancer patients. The medication actually decreases the amount of Estrogen in your body. At first, we were confused. Why would we want to decrease estrogen? The reason is that your body basically goes into overdrive trying to replenish the lessened amount of estrogen and you develop stronger and bigger eggs. I took the medication every night between 6-8 p.m. from cycle days 3-7.

On cycle day 10 (yes, you get a calendar every month that helps you decipher these days), you go in for another ultrasound and bloodwork. They measure your follicles and estrodial. They're hoping to see at least one follicle at 16 mm or higher. If you have too many follicles, your cycle can be cancelled so you don't end up as Octomom. If you don't have any follicles that meet that size you either postpone for a few days and come back for more monitoring or cancel the cycle and start over next month. It's very hard to describe just how exciting it is for an ultrasound tech to tell you they see an appropriately sized follicle. And it's just as hard for an ultrasound tech to tell you...hmmmm... looks like only a few small ones so far.

Once your blood work comes back from the lab, your nurse calls you that afternoon and tells you if you can take your trigger shot yet. The trigger shot is HCG, yes, the pregnancy hormone. This triggers ovulation within 36 hours in the vast majority of women. You can't take a pregnancy test at this point because it WILL be positive. I was on a few infertility internet forums and lots of women "test out their trigger" to see the positive from the trigger shot fade and hopefully see two lines come back for a positive pregnancy test, but I never did. I didn't want to see two lines on a pregnancy test unless it meant there was really a new life being created.

Giving yourself a shot is a strange experience. The needles are tiny and you don't have to put them too deep, but it's still weird to do it yourself. The first month I gave myself a trigger shot, I was terrified. Mike asked me if I wanted him to do it and I told him that I had a feeling I'd have to learn (I was fairly confident it wouldn't happen the first month). It took me nearly fifteen minutes of preparing but I finally did it.

After the trigger shot, there are two ways that the RE usually goes. Either timed intercourse or intra-uterine insemination. Luckily, my RE didn't think we needed the IUI and so we were given orders (per the nurse) to "have relations" for each of the next three nights. It made me giggle every single month.

Seven days after your trigger shot, you're back in the office for bloodwork. They are now looking for your progesterone level. That indicates ovulation and your body's preparation to take on a pregnancy. Because this had been an issue for me in previous pregnancies, they were watching these numbers closely. The first month was the only month that my progesterone was cause for concern - it indicated ovulation but was a little low for their liking so I then went on progesterone supplements.

Fourteen days after your trigger shot, you take a pregnancy test. If it's negative, you wait for your period to start and you start the process all over. My first month was a negative so we moved on to month two. And three.