Cart, Horse.

This is putting the cart way before the horse, since I don't know if I'll have working tubes or a clear uterus, but if I do, I want to cycle again when my next period starts, probably in another 15 - 20 days. I've been trying to figure out why I want to get going again so badly, and I realized it's a mix of things. I've tried to explain below.

Spoilers

I am someone who always reads the end of a book first. I always look up the spoilers for TV shows I'm watching on Netflix. Why? Because otherwise I get so utterly stressed out about what will happen to the characters that I don't enjoy the book/show. If I find out the ending first, my stress level drops, even if I know it won't be a happy ending. Once I know how things will end, be it happy, sad, or otherwise, I'm able to relax and enjoy the book/show. Yes, I know how stupid this is when we're talking fiction. That doesn't change my experience.

That applies here, too. There aren't going to be any spoilers for how our TTC story ends, so that's not an option. But each extra month I'm not cycling is day that I could have been closer to finding out the ending and relieving the stress. We've said we'll do 3 medicated cycles. After that, we'll consider IVF. Either way, my intent, for my own sanity, is to be done by the end of the year. Either we'll be pregnant, or I'll put an IUD back in and call it done. If we can get there sooner, that's less ongoing stress on me.

Action

My reaction to deep stress is always to become more action oriented. The more stress I'm under, the more likely you are to find detailed to-do lists, a clean house, and an organized life. It's like I know there are things I can't control (e.g., getting pregnant), so I offset that by things I can control (cleaning, housework, finances). Sitting around and doing nothing when I'm stressed makes it worse. So if my tubes are working, I'm ready to stop sitting and take action. I still can't control getting pregnant, but I'll feel vastly better that I'm doing something, rather than nothing.

Anniversaries/Milestones

In the next few months, we have several tough dates coming up. The girls' due date will be in early April. Mothers Day is in May. If I play the wildly over optimistic card, the dates are likely to work out such that a successful March cycle would put our first ultrasound within a day or two of Alexis and Zoe's due date. I know the chances are infinitesimally small, but I would love to know my girls are watching over their siblings on such an important date if we were to get pregnant. Also, the girls' first ultrasound was on the due date from my first loss. I was expecting another MMC, so seeing those two heartbeats felt like the best news in years. I still think the girls' sibling was up there watching over them. It would seem right, in a circular way, to have my next u/s on their due date.

Life

I'm making conscious choices in my daily life for the purpose of getting pregnant. No alcohol. Almost no processed foods, no added sugars. I'm taking 19 pills a day (Ubiquinol x3, L-Agrinine x2, PNV, Pycnogenol, Acai, DHA x2, etc.). I'm utterly sick of the side effects from the PNV. The supplement cost runs over $100/month. It's 100% worth it if it helps avoid another miscarriage or stillbirth, but I want to be done with this as soon as possible. Another month delay means another month of living life prioritizing reducing changes of miscarriage over normal life.

Biking

I enjoy biking. I can not wait for spring to get on my bike and ride. When I ride, it's for hours. But that's not the best idea if I'm trying to get pregnant. If we try March, April, May, then I'll still have June - September to enjoy riding my bike with no concerns about the impact of endurance sports on TTC. Every month we delay is one less month of nice riding weather I can get.

So, I'm ready. I'm ready to try again. Now I hope and pray that my body will allow that.

Tiny Bubbles

I am cramping and bleeding!!!

You might wonder why that statement merits multiple exclamation points, but it's simple: I'm getting a period. That means that surgery seems to have made things better. With the Asherman's, my last pre-surgery period bordered on non-existent. That's because the scar tissue prevented an endometrial lining from forming. No lining = light period. No lining also equals nowhere for an embryo to implant. So evidence that my lining is restored is a big, happy deal.

This leads us to the next hurdle: tubal patency. In light of the infection I had in November, my cadre of medical professionals and I are all concerned about the condition of my tubes. If they're blocked, then I'm faced with the choice of IVF or the end of the road.

So it's time to test my tubes. But herein lies yet another problem: my last HSG went catastrophically wrong. It showed only one open tube and almost no uterus. Further, within hours afterward, I was swollen and in so much abdominal pain that I couldn't stand upright. My RE and I both suspect that the image was invalid because my body reacted badly to the HSG/contrast. All of this means that another HSG is off the table.

My OB mentioned a product called FemVue. FemVue's website, in addition to having a bunch of dumb looking women on it (actually, they look like smart women who have been told to look stupid for photos), will tell you that it uses bubbles and ultrasound to test tubal patency. There was one problem, though: my OB has never used it. She suggested I contact my RE to get her thoughts on testing my tubes. If my RE didn't have ideas, my awesome OB would learn how to use FemVue, and we'd proceed down that path.

So I talked to my RE's office. I had to make another appointment to talk to my RE, which sucks given my lack of insurance coverage, but falls under the heading of 'it is what it is'. The awesome news was that she's not only familiar with FemVue, but did research on it back in med school. I will be in very good hands with her. The less awesome news? Per my RE, her research findings were that women reported FemVue to be more painful than traditional HSG.

The end result is that I go in next Friday to see if bubbles can shed light on the status of my tubes. One more week and we'll know if there's a path forward or not. I'm scared. I'm not sure how much more bad news I can handle, but better to know than not, right?

It Wasn't Mylar

Surgery took place as planned back on the 18th. Being back at the hospital was indeed hard. I might have cried a bit in the waiting room. I might have cried again post-op.

Surgery itself went well. During the follow-up appointment, my OB told me, and pathology confirmed, I had scar tissue and embedded retained placenta in my uterus. I suppose it's no surprise with what happened.

My OB cleaned everything out. Due to the nature of the scarring (Asherman's), she left behind a balloon catheter for a week. It looked like this:

It was the most miserable thing I've dealt with in this entire journey. In my mind, I'd assumed that everything would stay inside me. I know that sometimes IUDs are used for Asherman's patients, and I've had an IUD that only had a tiny string in my vagina. I just assumed this would be similar.

Nope. Wrong on all counts. First off, that tubing is just slightly smaller than a quarter of an inch. Not at all like the string on an IUD. Having a string the width of a thread coming out of your cervix is a very different experience than having a .25" tube coming out.

Second, the tubing was long. Long enough to go through my cervix, and vagina, and hang a good few inches outside my body. From a practical perspective, that meant that anytime I moved, stood up, sat down, or rolled over, the tubing got pulled on a bit. Tubing that was going through my cervix and into my uterus. Imagine what that might feel like. On second thought, don't. It sucked, no one should deal with that.

Third, there was a hard plastic connector on the end of the tubing. It allows the balloon to be filled with saline. That's great. Except from a practical perspective. From that perspective, no matter which way the tubing points, that hard plastic connector is going to be jabbing you in a sensitive spot of your anatomy.

Finally, surgery made my digestive system unhappy. Consider the logistics of trying to keep a dangling tube and connector out of the way as you deal with what you have to deal with when your digestive system is unhappy. This is especially fun in my case, since I know the bacterial infection that took my girls and led me to this point in my life was largely comprised of bacteria found in the digestive tract. And here was a fucking superhighway going right into my ute.

It sucked. But it's out, and it's over, and now we move on to the next hurdle: figuring out if the surgery worked and if  my tubes are clear. More on that to come.

Full Circle

My journey to parenthood started December of 2015. That was when I got the first positive test. That was when I experienced the first rush of utter elation that I was pregnant and DH and I were going to be parents. January 15, 2016 was the end of the elation. I was 10 weeks, and there was no heartbeat on the ultrasound. I was scheduled for a d&c the following work day, January 18.

Two chemical pregnancies later, I had a saline sonogram done. It found scarring, caused by the d&c. I went through an operative hysteroscopy to remove the scar tissue, and then went on to conceive the girls with the help of a great RE.

After losing the girls, and knowing my history of scarring, I went in for a saline sonogram in late December. I wanted to be sure my uterus was clear to try again in March of '17. Alas, this SIS made the last saline sono look like the "good" version. This time around, there are adhesions all over. I suppose it's to be expected, in light of the infection and the fact that it took two rounds of emergency surgery to stop the bleeding after delivering Zoe. I've gotten an official diagnosis of Asherman's.

Thus, I've been scheduled for another operative hysteroscopy. On January 18. It has to happen then, because of the timing of my cycle and the fact that my OB only operates on Wednesdays. I won't lie, I'm hurting at the thought of being back in the same hospital on the same day one year later, with only heartbreak to show for the intervening year. I've come full circle, and yet instead of progress or joy, there's only pain and loss. I'm terrified at the thought of waking up in the same post op facility that I last woke up in the night I lost the girls. Those are memories I don't want to re-live.

I'm just hurting. I'm hurting because I miss my girls. I'm hurting because everything for the last year has been so damn hard. I'm hurting because I don't know if this will work, if we'll even be able to try again, or if our road will end here. I'm hurting because I know if it does work, and I do get pregnant again, I'll never be able to simply enjoy it - I'll worry until the moment I'm holding a living, breathing baby in my arms. I'll say it again, I'm hurting because I miss my girls.

Now I just hold out the hope that this surgery will work and the scarring will stay at bay long enough for us to conceive again. I hold out the hope that my ovaries can pull off one more pregnancy. I hold out the hope that this time, my uterus can keep my babies safe. None of this may come to pass, but I'll pray that January of 2018 sees my DH and I somewhere better than here.

Epinephrine vs. CVS Caremark

For the last ten days, I have been trying to get medications for my next round of treatment from my god-awfully incompetent prescription insurance and their specialty and mail order pharmacies. Let me tell you, in the five months since I last dealt with CVS Caremark, they haven’t improved. Here are some highlights:

My doctor faxed the prescription. Two of the medications need prior authorization, the other two don’t. Thus, two come from CVS Caremark’s specialty pharmacy while the other two come from their mail order pharmacy. The two pharmacies do not talk to each other. Separate on-line systems with separate patient log-in information. Separate call centers. Neither pharmacy has any idea what the other one is doing or knows. Thus, I have to place twice the calls when nothing at all happens with both sets of meds.

Call 1 – CVS Specialty. They confirm that they have the order and even have the prior authorization info from my doctor, but are waiting on insurance information.

Call 2 – CVS Specialty. They inform me that my insurance has denied the claim. This is odd, because I should have just enough coverage left for this order, and then I’ll be out. I ask for more details. The call center agent tells me that my Aetna PPO has denied the claim. I tell him I have never had an Aetna PPO, I have CVS Caremark insurance. He tells me that the claim was submitted to Jennifer Haines’ Aetna PPO plan. I have already told him my name, it is not Jennifer Haines. I reconfirm this with him. Despite this, he proceeds to read off Jennifer’s plan number to me. Awesome. I reiterate, for at least the 5th time, that it isn’t my information. He gets the correct info entered (in theory) and says they’ll submit to my insurance next.

Call 3 – CVS Mail Order. They have my prescriptions, but need information from my doctor. No, wait, they already have the information from my doctor. The prescriptions should ship soon.

Call 4 – CVS Specialty. They inform me that insurance has approved the claim, but I can not yet order the medications because, “they’re not in the system yet.” What the fuck does that mean? The call center rep can’t explain.

Call 5 – CVS Mail Order. Still not in the system. Should be in the system in the next day or two and will ship then. Sorry for the delay, don’t know why it’s happening.

Call 6 – CVS Specialty. Still not in the system. Try calling again tomorrow.

Call 7 – CVS Mail Order. Not in the system. Wait, yes, they are in the system. But, unsure if pharmacy has enough in stock to meet the order. What in the fuck? This is a mail order pharmacy and these are common drugs. Also, I communicate that I’m concerned about the prometrium, because it’s a gel capsule and our temperatures are supposed to hit -22F. I’m worried it will freeze in transit and be destroyed. They transfer me to a pharmacy tech, who can’t tell me anything, but transfers me to a pharmacist. He agrees that it will probably be an issue, but “we can’t do anything about it.” I can either pay for expedited shipping or wait for the meds to arrive and file a claim if they’re ruined. There’s customer service for you.

Call 8 – CVS Specialty. In the system! Ordered! Shipped! Shipped without telling me, and by the way, adult signature is required, so now I have to make last minute arrangements to work from home so I can get the package.

While in the hospital, I lost enough blood that no one could find my blood pressure or pulse on either arm. When the doctor arrived, he gave me epinephrine, which stabilized me so that I could be taken to surgery. Sometime later, when I could talk again, I told my husband that he should have just leaned over and said “CVS Caremark” to me. Hearing their name is enough to get my blood pressure up without any medication at all!

And So It Begins

I headed back to the RE’s office last week. While I have no intention of trying again until March or April, I’ve missed so much time from work that I wanted to get the appointment in before I returned to the office and would have to leave early to take it.

I’ve said it before and will say it again: I have the utmost respect for my RE, her knowledge, and her skill in this field. I feel confident that my treatment plan reflects the most up-to-date science, and that my input is consistently considered. I would highly recommend her to anyone else.

I have less confidence in some of the information that comes from the (otherwise wonderful) nursing staff. Case in point: DH and I both had communicable disease screening done last June/July. The nurse I’m communicating with told me that we’ll both need to be retested.

Now, I had several blood transfusions due to hemorrhage after delivering the girls, so I don’t mind being retested, although it’s been far less than a year and I’ll have to pay out of pocket. But I couldn’t understand why DH would need more testing. We don’t have  MFI, so we get to try to get pregnant the quasi-old fashioned way: drugs, ultrasounds, and sex. DH will be going nowhere near the RE’s office, and will therefore pose a risk to no one but me. Thus, I asked why he needed to be tested.

The nurse informed me that it’s an FDA requirement, because “he might expose you [me] to something.”

At first, I was righteously indignant at the FDA. In the first place, they have no business in my sex life. In the second place, do they really think that the only way I’ll be “exposed” is if I have treatment? They are protecting me from exactly nothing. Finally, why in the bloody hell should the government force me to pay for testing just because I need injections and ultrasounds to get/stay pregnant?

But after being indignant for a while, I went searching for the actual government regulation. Because I’m a) curious, and b) stuck at home in pain with nothing better to do. You know what I found? 21 CFR 1271.90 (2), which is the regulation that requires testing for “human cells, tissues, and cellular and tissue-based products” (aka sperm/egg/gamete donations) specifically exempts “Reproductive cells or tissue donated by a sexually intimate partner of the recipient for reproductive use”. In other words, DH should not need to be tested. (Should anyone be aware of other relevant regulations, please let me know. In all my searching this was the only thing I could find.)

Thus, the bullshittery of frustration, bad information, incompetence (wait until my next post about good ‘ol CVS Caremark), and frustration has begun again. Happy f-ing New Year.

Bear With Me

It’s now been a month since we said goodbye. I have lingering complications that have left me in more pain than I could have imagined. If they don’t resolve on their own, I’ll be facing surgery at the start of January. I’ve been told that surgical recovery is two weeks of true agony when heavy narcotics are needed, then six weeks of pain. This terrifies me because I left the hospital on 800 mg of ibuprofen every 6 hours, 650 mg of Tylenol every 4 hours, and 2 Ox.ycodone every 3 hours, and that did NOTHING for the pain I was in. I can imagine how much worse it will be after surgery, and I know that the drugs just don’t help. Overall, more difficult choices ahead.

That all reflects the physical part of healing. The emotional part is another matter. I have my good moments and my bad moments. I don’t think the postpartum hormones help, or the fact that I’m still in too much pain to return to my “normal” life, so I’m left with little to do. I hope the physical healing can help to be a catalyst for the mental healing. In the interim, I hope you’ll indulge a few things I want to share.

I only took one “bump” picture my entire pregnancy, because I was so sick the whole time I didn’t feel like it. Although the girls are gone, I feel like I need to share this. Why? Because it’s one of the last good memories I have with them. Because I hate that there are times it feels like they weren’t real, and by sharing this photo, I can disprove that feeling. Because, out of everything that happened that I might have controlled, I get the most upset that I never got to see or hold Zoe, and this photo reminds me that I got to hold her for 18 weeks and a day. Maybe just because it’s a talisman to me, that proves that DH and I can make beautiful, healthy babies, so that gives me hope that one day we’ll get to be great parents to babies we can take home and raise.

The other picture I want to share is of the girls’ bears. I mentioned how amazing the Fairview Southdale nurses and doctors were. Also amazing are two other parents, who also lost a child at Southdale. They started a program to give small teddy bears to other parents delivering babies who will never come home. This is a lousy picture, taken via my cell phone a few hours before we left the hospital. But these bears are so precious to me. Seeing them snuggle each other gives me hope that my girls are out there somewhere, taking care of each other.  In the first days home, DH would bring them to me, and we’d just hold each other and the bears on the sofa and talk to our girls. I have conversations with the bears most days. Today we went to the picture window and I showed them the six deer who were grazing in our yard. Am I crazy? Well, of course, we’ve known that for years! But does it help to think that maybe our girls are up there somewhere, listening as I talk to their bears? Yes, it does. To the parents who started this program: I am so, so sorry that you went through a loss, but so, so grateful to you for what you’ve done with it.