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.

So Many Thanks

I feel like there are so many things I need to say about what’s happened in the last few weeks and months, but I’m not sure I have the words to say any of them. Let me start with a few things that are top of mind, and that’s thanks to our amazing families and to the incredible staff at Fairview Southdale hospital.

My mom came out to visit around 16 weeks and did an amazing job getting the nurseries ready for the girls. I was still feeling pretty awful, but mom took care of the painting and the yard. Had things ended the way they should, our girls would have had beautiful rooms thanks to my mom’s help.

When Zoe’s water broke at 17 weeks, my MIL flew out and was there by 9 that night. My dad  and step mom were there by 6 the next morning. I would not have made it through the last two weeks without their help and love. They took care of everything for me when I was stuck on bedrest and half out of my mind with pain. They also stayed with us when I went into labor. My Dad and MIL drove DH and I to the hospital when I was sure Alexis’ water had broken, and they stayed all night in the hallway and waiting room until Alexis was born, and then continued to stay until close to midnight that day after Zoe was born and I was out of surgery and conscious again. They kept us fed and clean and kept us company when being alone would have been too hard. I will never have the words to thank then enough.

I also need to recognize the amazing staff at Fairview Southdale hospital in Edina. From the first night there when Zoe’s water broke through labor, two rounds of surgery, and a multi-day stay, every single nurse and doctor we interacted with was compassionate, attentive and understanding. When my OB was called away to deal with another emergency as I delivered Zoe and started hemorrhaging, the anesthesiologist (who has the exact same name as my dad) stepped in with no hesitation and in all likelihood saved my life. I will be forever grateful to the team there for their care and compassion.

There are quite a few more thank yous needed for friends and colleagues who kept us in their prayers, but I’ll save that for another day. For now, I am so grateful for the wonderful people who did everything possible to make the worst possible situation as ok as possible. 

Zoe Grace and Alexis Marie

I am someone’s mommy.

At 12 weeks, we had the CVS done that showed we were pregnant with two healthy girls. I spent the next five weeks in a state of joy, despite the horrible morning sickness and constantly feeling terrible. We shared with family and friends and we waited excitedly for March when we’d get to meet our girls.

Their names were Zoe Grace and Alexis Marie.

At 17 weeks exactly, Zoe’s water broke. The three of us held on together for one more week on home bedrest, in the worst agony of my life due to other complications. At 18 weeks, Alexis’s water broke as well and I went into labor.

Alexis Marie was born a few minutes before 8 am on November 7. DH and I got to hold her and tell her how much we loved her. Those minutes will always be some of the most important of my life. She was so beautiful and perfect and tiny.

When I had not delivered Zoe nearly 8 hours later, I was moved from Pitocin to cytotec. I started having convulsions, and was not entirely conscious when Zoe was born around 5 pm. I know DH held her up to me so I could say goodbye, but I have no memory of that. He tells me she was perfect, too. I believe him.

I started hemorrhaging after delivery and was taken to the OR for two rounds of emergency surgery. I lost about half of my blood volume, but the doctors were able to stabilize me and save my uterus.

Zoe Grace was 8 inches long and 6 ounces. Alexis Marie was 8 inches and 5.5 ounces. I love them both more than I thought possible and miss them more than I can say.

I don’t know what the future holds, but I do know that these were my girls, I am their mommy, and I will always love them.