Caroline’s loss date yesterday

Yesterday was the 5th anniversary of the day we found out Caroline had died and I was given Cytotec for reasons that were never really explained to me. They also didn’t tell me how much it was going to hurt and that there would be contractions randomly over the next two weeks. It didn’t make for a good Christmas.

It’s hard to believe it’s already been 5 years. A very, very difficult and interminably long 5 years that have gone by in a flash.

I’m almost 27 weeks pregnant with a baby that we might get to actually keep. Everything is going well so far, but I don’t know if I’ll ever stop worrying that it will suddenly stop being okay. We call him Sticks, which I suggested because in my favorite movie, Willow, Madmartigan calls the baby Sticks and The Dad accepted it because we hope the baby sticks.

Otherwise, I’m doing really well with the emotions of pregnancy after loss. I feel very connected to this kiddo. I love the way he dances when there’s music, and he seems to especially like Journey’s “Girl Can’t Help It”, and Billy Joel’s “We Didn’t Start the Fire”. I love how much he kicks when The Dad is talking. He has a silly thing where it seems like he’s trying to get out by pushing about an inch and a half below and to the left of my belly button. I tell him that’s not how to get out, but that I won’t tell him where the exit is because it’s too early.

Surprising no one, I’m finding that having a living child doesn’t make the grief go away. It does do a lot for the deep aching emptiness of having lost all of my children, and the intense longing for physical motherhood, though.

I have a couple painful complications going on, but neither is actually a risk for the baby, so I don’t mind so much. A different muscle in my abdominal wall started having issues as soon as the second trimester started, that can’t really be treated because that’s not safe for the baby. I’ve been doing physical therapy, which mostly made it worse, but since I got a support belt, it’s been better. A little over 2 weeks ago, I started having diastasis symphysis pubis. It’s when the relaxin hormone that’s supposed to loosen ligaments, so the pelvic bones can make space for the baby to come out, is too high and the bones become misaligned and hurt when you move. My physical therapist put it back together pretty well, and now I have a different support belt to hold the bones in place. I have to wear it pretty much all of the time until a month after the birth, and then just during the day for 5 more months. It’s not too bad though. I’ve said for at least 4 years that I’d give multiple limbs for a baby and this way it isn’t permanent.


Preparing to try again

I spent most of my post-IUI two-week-wait on vacation. The distraction was incredibly helpful. I relaxed, ate pineapple (not core, my experience of that stuff is like chewing bitter, sour wood pulp, I won’t do it) and drank lots of milk. Unfortunately, the bleeding started on day 10 after the IUI.

I am less distraught and hopeless and despairing than I have been on previous months of failure to conceive. DBT Distress Tolerance skills have been massively useful.

A 24 day cycle means that the next ovulation is pretty certain to occur before the weekend theatre-watching trip in two weeks. It had to be rescheduled for mid-July to accommodate my brother-in-law’s wedding Labor Day weekend, when the trip was originally scheduled. The wedding date was confirmed about a week ago. (I’m really excited for them, they are so good together, and just adore each other. He’s close to 7 years younger than The Dad, and watching how much he has changed the last 8 years that I’ve been in this family has been interesting. He has grown up tremendously since he was the best man in our wedding 6 years ago.)

If a July IUI fails too, and the cycle is average length or shorter, we can fit in an August IUI before the European vacation. All this vacation! I am so incredibly lucky that we can do all of this. I wouldn’t have any vacation left if I hadn’t been fired. They only gave me 5 days a year, and those were only going to start after I’d been there 13 months. That was another piece of stress I didn’t need.

I ordered two vials of donor sperm this time because shipping is insanely expensive, and there’s still an 85% chance that this cycle’s IUI won’t work, so I’m being prepared. If it turns out I’m over-prepared and we need to save a vial for trying for a second kid, storing the vial that long won’t actually cost much more than shipping it by itself would have. Possibly I should just get 8 vials, and be really prepared, but at $825 apiece, I just can’t. It’s not like they’re returnable. Maybe I’ll need 8, maybe I’ll need 3. There is just no way to know and I hate that.

Today was my first appointment with a fertility acupuncturist. We talked about all of my health history for over an hour and a half, and then did a needle treatment. I go again next Monday for a similar appointment, but with more analysis from her. I have hope that it will help.

The IUI should be sometime between Saturday and next Thursday. So I should know by July 30th. In between will be the anniversary of Anastasia’s due date. The anniversary of Josh’s loss date was last Friday, and I have some things to say about that, but in another post.

The next thing to try

Tomorrow we meet with a counselor, actually a PhD psychologist, to learn all about the emotional aspects of building our family with donor sperm.

My therapist, who specializes in baby loss, infertility and parenthood after, reminded me last summer during the IVF to consider donor sperm as a possible back-up, so I wasn’t pinning all my hopes on the IVF. I didn’t want to do it, I did pin all of my hopes on the IVF working, and I was devastated when it didn’t. The massive amount of pain from the extra blood that had hemorrhaged into my abdomen didn’t help.

I have been trying to come to terms with this idea since then. I didn’t want to give up on having a child that was genetically related to my husband (The Dad). There is so much about him that I admire and treasure and hope he passes on to our kids, and I wasn’t willing to let that go. I would have been much more able to give up on passing on my DNA to our kids. That’s mostly because of what my mom has always called “defective brain genes”, the hereditary Persistent Depressive Disorder I get from her.

The Dad was much more willing to move towards donated sperm. He is very logical and patient. He knows that he will be the dad, he knows how incredibly influential environment is for people, and he knows that experiencing, and especially watching me experience a fifth miscarriage would be extremely painful for him.

Last fall we met with my therapist’s clinic partner to talk about being ok with it. She had her children through egg donation and help us through a lot of the conversation. But I still wasn’t convinced. It just seemed like giving up on full genetic siblings for the children we had lost, which seemed like a betrayal.

What finally did it for me was something an OBGYN said to me. I only saw her because I needed urgent appointments and couldn’t get one with my regular one. I had some crazy pelvic pain, (which is being successfully treated as related to the crazy upper left quadrant abdominal pain I’d been having) and some strange bleeding from cycle day 23 to 28 last cycle (which appears to have been weird and undiagnosable, but nothing to worry about).

So I saw this doctor, and she said, “You’re 33 and you want to have 2 kids, it’s time to start trying something different.” I told her my issue with it, and she said it didn’t have to be the end of the line for trying to conceive with The Dad’s sperm. If we had one with a donor, and tried again naturally after, a loss would probably be less traumatic. It would no longer be all of my children. I wouldn’t be a generally-unacknowledged mother. I know I wouldn’t have as hard of a time pulling myself out from under when the most important person in the world needed me.

Technically one of my brothers is a half-brother and one is originally a half-brother, but adopted as a full brother, and they’re my brothers. I never mention the half-brother part, except on those rare instances that I’m explaining why I just mentioned my brother’s dad. There’s no reason it should be any different for my children.

We have already decided that this will not be a secret. If we do successfully have a child this way, we want him or her to know their history without shame. There are medical reasons he or she should know about it. Finding out later in life is often traumatic, and we don’t want that.

Our children are ours, they are loved, and we want them to know that.

P.S. This OBGYN, who I’m 90% sure I’m switching to, said something else that has made a difference. I said I wasn’t sure my antidepressants were doing enough because I was still so sad. She said that I had been going through a lot of stuff that just sucked, and it was reasonable to be sad about that. I liked that. Not the fact that it’s true, but the validation.

Thoughts from Mother’s Day, and I’m making progress

I wrote this on Mother’s Day, and thought I posted it, but it didn’t post:

It is a day to honor mothers. Most years, I only notice honoring of women who have given birth to children who are still here. This year, maybe because I was vocal on facebook about my motherhood status, I have seen more acknowledgement of mothers whose motherhood doesn’t look like the regular, expected kind. It feels validating, and that’s nice.

I was anticipating a very difficult day, since my only children are gone. Therefore, it was a difficult week. I cried and moped quite a bit.

I also had hoped to find out this week that I was pregnant, but once again, I found the opposite. It hasn’t been that many months this go-round, but it being the sixth time trying to get pregnant, with no births and four deaths, every month of failure, of delay, is another reminder of what I do not have. Of what I don’t know if I will ever have. My child; to hold, to raise, to see grow, who will call me mom.

Meanwhile, my therapy is going really well. I’m learning to be mindful in everyday life. To pay attention to my emotions, where they come from and what they are urging me to do. To decide to act in ways that are more effective. I’m learning a lot of different ways to tolerate distress without hiding myself in the basement zoning out in front of the TV, or eating way too much, or both. The ways are mainly distracting myself until it gets better.

Most importantly, the skill I’ve learned from my Dialectical Behavior Therapy is what’s called Radical Acceptance. I had read a little about it pretty soon after I started DBT, and I was certain it was never going to happen. I mean, just accept that all my babies were dead and pretend it’s fine? NO.

It’s way more nuanced than that. It is complete acceptance, but not saying it’s ok, or that I like it. It is the acknowledgement that the things that have happened are my reality, and they cannot be changed. My being angry and bitter that my children are gone was never going to bring them back. There is no way to get them back. My anger only served to cause me suffering. So, it started to seem like maybe it wasn’t the best thing to keep in my head.

I feel so much lighter. The world is not as dark and terrible as it was. A lot of things still suck, but a lot of things are good, and it’s ok to enjoy them. It’s not a betrayal of my children. I will always believe that the last five years would have been happier if I had gotten to keep them with me, even one of them, but nothing can ever change what has happened and what is, I can only change how long I let it keep me from living a life worth living.

Friday, and now I have the flu

Tuesday I drove down to Rochester for my injection. They decided that since the last one didn’t last as long as hoped, they would do this one with less steroid and more “needling”. Basically, more poking at the painful muscle, in order to convince it to stop whining. It has been screaming since then. the acts of sitting up and laying down have been awful unless I used just the muscles in my arms. I did go back to the Lidocaine patches today and that helped a bit.

Yesterday was the last of my bronchitis, but the start of a really achey flu. I slept on and off ’til noon, then I took a two hour nap this afternoon. It’s completely ridiculous. The Dad has it too.

Also, just for fun, my pap smear in January came back abnormal, and positive for HPV. It’s a recurrence from when I had it in 2004. I had my colposcopy to check for precancerous cells on Wednesday morning. My regular OB doesn’t do them, so it was a doc in the practice I hadn’t met yet. She asked a bunch of questions about my health and life and it was so sad she had to hug me. It was surprisingly not weird hugging a stranger while not wearing pants. Well, I mean, she was about to stick stuff in my vagina, so how much more personal could it get? The results came in today and everything is fine!

Our Minnesota Sacred Harp singing group is having its all-day singing tomorrow, and we’re not going because we feel like shit.

And still, I’m way happier than I was a year ago. There is hope that I will be ok, there is hope that I will someday have a living child, and I feel so much stronger and able to get through. My new-found strength is mainly due to a program I’m in that I’ll write about in my next post.

Further update

After the attempt at an IVF cycle failed miserably and painfully and I had a breakdown, I was given most of August off of work to recover. I did another partial hospitalization program, at a different hospital from the one I did in 2011. A much better hospital.

It was really good to have the structure of getting up every morning with somewhere I needed to be without the stress and responsibility of work. As therapy, though, it was more of a stop-gap than actual treatment. It was 6 hours a day, but with an hour for lunch, and an hour of guided meditation, during which I always fell asleep. Support and validation and a little education on distress tolerance were helpful components. I also visited my regular therapist twice a week from August through October.

By the end of September, the pain from the hematoma (what happens when you hemorrhage internally, and the blood sits in there in the way pushing on stuff) finally left.

At the beginning of November my strange abdominal pain and nausea came back. I immediately called Mayo in Rochester for an appointment with their GI department. But, I missed more work days, and despite getting the required doctor’s note, I got fired for absenteeism. I was really disappointed and upset, but, I realized that without the job I could focus on figuring out what was wrong and getting treated. Plus, I wasn’t going to be eligible for paid vacation, and even then, only 1 week a year, until I had been working there 13 months. Also, even though I was doing the same job as one of my co-workers, who had not finished his Master’s degree, which I have, he was full time and a scientist and I was a part time technician. I didn’t have a very good deal.

At Mayo, the gastroenterologist was incredibly thorough, and figured it out within half an hour. This pain and nausea that I had been dealing with on and off for 6 and a half years was not serious and deadly and chronic. It’s called abdominal wall pain, and is very common, but rarely diagnosed. The theory is that most doctors don’t think about it when there’s a possibility of life threatening illnesses. After you rule out all the possible organ failures, someone should think of it, I think. The treatment is a steroid and pain killer injection into the worst part of the pain. I finally got that done November 21st, and within 24 hours, my life was changed. The pain, nausea, exhaustion, anxiety, and even a lot of the depression, so much suckage just stopped.

I had three fabulous pain free weeks. And then I missed two doses of Effexor because Target didn’t fill my prescription the first two times I asked. The night sweats started Sunday night, after the first missed dose. By two hours after the time I should have taken the Monday dose, I was so dizzy that moving my head made the world go black. I got these funny electric shock feelings every once in a while, just little jolts, especially in my hands. There was no possibility of eating. Target finally got my prescription filled so that I was only three hours late on the dose Tuesday morning. The shocks finally stopped Wednesday afternoon. I could eat again Wednesday night, but I was nauseous and a little dizzy for the first few hours of the day for another month. DO NOT miss your Effexor!

About six weeks after the miracle injection, the pain started coming back. The shot shouldn’t be more often than every 12 weeks, so my next one is tomorrow. I’ve been using Lidocaine patches to get me through, and they help a lot.

Wednesday I hope I’ll be done with this bronchitis, and the abdominal wall pain will be gone again, and I will feel great!

I’m back!

Tomorrow it will be a year since we lost Greg. It’s been more than four and a half years since we started on this journey to parenthood. We still have no living children.

In June I had two weeks of abdominal pains, and decided that the answer was to go down to the Mayo Clinic in Rochester, MN, where they have the country’s best GI department. I made an appointment for mid-July, but the pain stopped by the end of June, so I cancelled and moved forward with the IVF plan we had made.

My last post was our IVF egg maturation and retrieval schedule. I started Lupron on time, my first shot I forgot the pinch and fast jab instructions and bruised really badly. I can still see it. I was completely exhausted and pretty pissy for all three weeks of injections. After an insane number of transvaginal ultrasounds, (seriously, one day I had to have 2, because the first nurse couldn’t find my left ovary) I had my egg retrieval on July 24th. We got 8 eggs, 7 mature.

About 7 that night, the pain had gotten so bad that anytime I moved I had to scream and cry and hyperventilate a little. My husband took me in to the ER. Hooray! Another transvaginal ultrasound! At least this one I had IV dilaudid first. They found that my right ovary had been hemorrhaging, and was 8 x 10 cm (normal is 2 x 3.5 cm). They put in a large bore IV in case I needed a transfusion, but it took two tries. I stayed overnight and they checked my hemoglobin every three hours. Normal is between 12 and 15 g/100mL. My usual level is 14.5. It bottomed out at 9.3. I was sent home when it started going back up, meaning that the bleeding had stopped. Actually they wanted to discharge me when the falling numbers slowed, but I refused to leave until it went up.

We had gone to the hospital connected to my RE’s office so they could call him and get his input. He didn’t even return the calls and pages until Friday morning. He actually did show up for a few seconds. He emphasized that I had had a little bleeding and it was causing a little pain. I made an appointment to go to the office Saturday morning to have some more blood checks. It took the lab tech there four tries to get blood, bringing my count of needle pokes for Thursday-Saturday to 14.

Four eggs fertilized. On day five, scheduled biopsy day, one had stopped growing and the other three hadn’t grown fast enough. On day 6, the last chance for biopsy, none of the embryos had enough cells to be eligible for biopsy.

The whole thing had failed before we even got any answers.

There was no hope anymore. It was all over.

So, it was another ER trip, this time for suicidal ideation. I couldn’t bear another stint inpatient, so I agreed to partial hospitalization, a three week, six hour a day, five day a week, intense therapy program. It helped.

That’s enough update for now.