Thursday, July 23, 2015

All or nothing.

It's thundering, and the skies have finally opened up. We're getting a good, strong, soaking rain, a restful and refreshing summer storm. The garden needs it. Mak and I have just got back from the pool. She's in dry clothes and napping and the house is quiet. I sit here, listening to the rain, thinking...

I have written three blogs over the last few days trying to put into words all that has been rattling in my brain. Here's another shot.

On Tuesday, Jake and I went back to REACH in Charlotte. This was the referral from my OBGYN following miscarriage number 5 back in March, the surprise one. My OB practice - as in all the doctors there - are stumped. After five, they have shook their heads in despair.
Dr. Miller, without any further ideas, said to go back to REACH. She mentioned surrogacy and said she simply didn't know. We had visited REACH back in 2012 when we thought are primary struggle was infertility after Clomid didn't work. I was told I had low progesterone and mild PCOS, was given injectables (OI) that ultimately didn't work. This back when the first miscarriage was just a "fluke"or so we all thought.

This visit was to see what hasn't been done, if anything, and what her advice was speaking from the knowledge of a RE. In other words, have we tried everything that's possible to prevent a pregnancy loss? There is some quote about doing the same things again and again and expecting a different result being crazy. Why should we keep putting ourselves through it if we know it will end? Anyways, based on this consultation we would decide to keep trying or prevent any more pregnancies surgically. Either tubal ligation or vasectomy. And the "no more" answer would be okay. We've really found a lot of peace with that possibility. If no biological children are in our future and God wants to close that door, well, we are along for the ride. Our happiness, our love, our success, and our marriage is NOT defined by, dictated by, or dependent upon biological children, or any children, for that matter. And we are both so done with miscarriages. More on that.

Dr. Teaff gave us a lot of office time walking through my history. To summarize the visit, she felt that we had not yet exhausted all efforts. In fact, she explained that there have been a lot of things untreated in most of my pregnancies, with number four (the one we thought stuck) being the one we came closest to the best plan of treatment. So let's explain my issues. I have a lot of things working in tandem:

1. I do have PCOS. Polycystic ovary syndrome means I have small cysts on my ovaries. I actually saw them in the ultrasound. It is responsible for my hormonal imbalances. I have low progesterone. This needs to be treated with not only progesterone support (we've done that) but with metformin and Ovasitol.
2. I am anovulatory as a result - this means my hormones don't always have enough oomph to make me ovulate, at least on each cycle. Clearly it does happen on its own occasionally,  as 4 of my pregnancies have been natural. So this means I need Letrazole and probably Ovidrel injections to make me ovulate when we want me to.
3. I have the symptoms of APS. Notice I didn't say diagnosis. To get a diagnosis you have to test positive on two separate times for antiphospholipid antibodies - ‘lupus anticoagulant’ and ‘anticardiolipin’ antibodies. The two positives must be 6-12 weeks apart. I haven't had the positive tests on the right times, but I have had positives. To treat this, you take low-dose aspirin and either heparin/warfarin or lovenox injections. Basically, it is an autoimmune disorder that causes small blood clotting. I have not been able to get a doctor to prescribe this! She said at this point it was wise to treat it as something is clearly at play, even if we don't have all the signs. It may be too late if we wait for a legit diagnosis.  I nearly cried when she said I needed to be on lovenox, because it's something I have advocated for since forever ago!
4. Since APS is autoimmune, I will take a steroid, prednisone. This will also help if I have uterine NK cells (natural killer). There may be more immune suppressors, like intravenous immunoglobulin (IVIG) infusions.
5. I definitely will continue the extra folic acid for my MTHFR mutation. This causes me not to absorb folate from food, meaning I need big doses.
6. Lastly, she called Wednesday and said I have to adjust my thyroid. While it is still in the normal range, it's less than ideal for conception. My TSH was 5.7, but she wants it optimal. So I am taking synthroid.
And then, of course there's bloodwork. Some of mine needed a little upgrading. So the vampires attacked and I got my life drained out of me. Some additional tests. Most are repeats, but two new ones are for killer cells and for AMH (anti-mullerian hormone).

In a nutshell, she thinks we haven't been treating all of these components as strongly as we need to, and all at the same time. I was kind of blown away. Furthermore, and this was a biggie... she doesn't think we can do all this our own and suggested and IUI or Artificial Insemination. Timed, planned, monitored. I just can't get pregnant on my own and then try to play catch up. In order for the medication and treatment plans to be the very best possible, we have to step-by-step monitor it. Like weekly or more often. So even though it's not necessarily infertility as in "I can't get pregnant" - it's that if I am going to sustain it- I need to be hand-held the entire way from conception forward.

The genetic testing we had done on pregnancy #4 was normal, we already knew... but she gave us new details. It was a boy. A BOY. I knew it. I have a son. A SON! :) The cool thing is that because of him, the genetic screening was more conclusive of no genetic abnormalities. It would have been more a guessing game if it had been a girl, as the "products of conception" can easily be confused with the mother's genetic material. But with it being a boy, it was no question it was the baby. And he was healthy. It was so, so hard, yet strangely comforting to hear this.

I am currently on day 8 of this cycle, taking all my meds, and doing a "dry" run that won't include the IUI and injections until the thyroid gets down. I go back in a week for a check up with the ultrasound and in a month to check the thyroid.

Insurance will cover three cycles of IUI. Three and then it's over.
And we're okay with that.
I don't know if we could handle more even if we could afford more.

I am nervous. I am scared. I am excited. For the first time in a very long time, I am hopeful.
I am really, really scared that I am too hopeful.  Yesterday, I caught myself daydreaming. I haven't done that in so long. I actually let myself imagine a nursery, a shower, a belly... it was so emotionally overwhelming. I couldn't believe my own thoughts. I had to admonish myself fast.

One of odd results of multiple miscarriages is how quickly an easy you let down your guard on your personal life. It's so funny how my menstrual cycle has become a topic of conversation. My reproductive system woes have become anyone's business. I could seriously care less which doctor or ob-gyn examines me. I have weekly dates with that transvaginal ultrasound wand. Ha! Whatever. Like, I have no shame anymore. Miscarriages can rob you of that. It's not even my personality to be that way. I have some friends who still only see female doctors, and I know women who only let that one particular one do their "exams." I might have been that way too.  I have one dear friend who basically needs a valium for a pap. Haha, I can't imagine anymore. Examining my uterus is as nonchalant to me as taking my temperature or checking my pulse. I was just sharing this with my husband yesterday. It becomes an "it is what it is" thing. I can't let it be an issue, especially now as we embark on this journey. People ask what's wrong, what we're going through, where we are - and I am so grateful that there are people who care to ask - and how do you begin to explain this tangled web of medication, procedures, and such without delving into it? It's just another way these miscarriages have changed me, shaped me, scarred me.

Even more so, what if this doesn't work, can I sustain more loss? The doctor said to me - "I don't see how you haven't thrown yourself off a bridge"... I said "uh yeah, don't I know it..." or something like that because she spoke so scary-close to the truth. I have fought depression for about three years. And sometimes, I have had dark, dark, dark days. The sight of a pregnant person would reduce me to nausea and tears. Sometimes it still does. Okay, it almost always still does.... And the idea of this not working and not getting pregnant at all doesn't scare me (or even the idea of never conceiving and carrying and totally calling it quits) nearly as bad as the idea of it working then failing yet again. To hear a heartbeat and then silence? To lie on another operating table, waiting on them to take another dead child away... again? That, to me, is where my most trepidation can be found. Those kind of what ifs. I would rather walk away now knowing I will never give birth than to face it again. But, at the same time, I can't walk away without knowing we tried everything we could.

I am a whirlwind of feelings, and managing the many bottles of medications and appointments (plus grad school and the impending back to school season) are giving me a place to focus my thoughts rather on the what ifs in this new journey.

Pray for us on this new path. I have no idea what awaits.

No comments: