Friday, July 30, 2010

We Buried Our Daughter Yesterday

I took off from work yesterday but not to enjoy the beautiful summer weather or to take the kids someplace fun or even just to spend a lazy day reading a book. No, I took the day off so that I could bury our daughter.

The husband and I, along with my parents and the parents of maybe six other lost babies, met in a room at the cemetery. It was the same room we went to when we buried Trey in December. The days couldn't have been more different. December was cold and gray with a bitterly harsh wind blowing. Yesterday the sky was blue and sunny and a warm, an almost oppressively hot wind blew. The priest was the same and the talk he gave was the same and the drive to the gravesite was the same. You'd think having been through this once before and knowing what to expect would have made things easier but it was just the opposite. Back in December I can remember being so sad but I remember also having a sense that surely this was a one time thing. It wasn't even on my radar that I may end up back in the same place a mere seven months later burying another child. And I mean literally the SAME place.

This time I couldn't even bring myself to stand by the gravesite. Therese's grave is in the row behind Trey's grave and they are lined up almost perfectly on top of one another. So, the priest and other families who stood around the site were actually standing on the grave of our dead son. It was all too much for me to take so I hung back and kept my distance.

On our drive back home I told the husband that I had high hopes for our next baby and I do have a good feeling, as though surely this can't happen yet again..........

Monday, July 26, 2010

The Good Old Days

It's hard to believe that there was a time before the internet. A time in which your doctor would make a diagnosis, explain the treatment to you and you would proceed with very little or perhaps even no questioning. There was no Dr. Google beckoning to you at 2:00 a.m. to just search "natural killer cells and IVIG" just one more time. Oh, to have those good old days back.

Having easy access to information is both a godsend and a curse. Without such access many women would not even know that they can be tested for natural killer cell activity. However, with such access, women like me feel as though they are ever more responsible for their own medical care despite having no medical degree. That is a burden I don't enjoy.

My findings thus far are frustrating to say the least. Following what my RE told me, I have confirmed that natural killer cell activity should be no higher than 12 and a level of 18 or higher is a huge indicator of miscarriage. My level is 18. However, then I read an article which said that testing the activity in the blood doesn't mean anything since what you really need to know is how active the uterine natural killer cells are. Next, I read a book which suggested taking a liquid chlorophyll supplement in order to help move natural killer cells out of the blood and into the tissues. BUT, if what we're actually concerned about isn't how many are in my blood but how many are in my uterine tissue then wouldn't that be just the opposite of what I want?

Another mystery to me is what stance to take on auto-immune issues. One theory is that if your immune system begins to attack things it shouldn't (i.e. a baby) then the answer is to suppress the immune system. This is what IVIG, intralipids and steroids are designed to do. However, there is a competing theory that the immune system just needs to be reset somehow. Naprotechnology doctors are using low doses of a drug called naltrexone, in part, to help boost the immune system in an attempt to make conceiving easier and to prevent miscarriages. So, which should I choose, suppressing or boosting? I suppose I could try both, although in doing so, if I choose to try the wrong approach first it may cost me another baby.

Sometimes ignorance really would be bliss.

Wednesday, July 21, 2010

And Some Bad News........

The immune testing results came in quicker than expected but the results were pretty much what I expected - my level of natural killer cells is elevated. Now, ask me what that means and all I can say is that some doctors theorize that my own immune system is attacking my babies and destroying the placenta. As the placenta is destroyed the baby perishes. Sounds pretty grim.

Notice that I said "some doctors", that's because there are an equal number of doctors who don't think elevated natural killer cells have any correlation to miscarriages. Sometimes I wonder what would happen if I called five different doctors and asked what day of the week it was. I'll bet that I couldn't get them all to agree on that today is Wednesday.

The treatment for elevated NK cells is steroids and a series of IV infusions with either gamma globulin or intralipids (aka fat). The RE I am currently seeing using the more expensive gamma globulin. I would prefer to do the less expensive intralipids. The response I received was sure, you can go ahead with the intralipids but you'll need to find a doctor to prescribe it. Because just what you need when you're dealing with the stress of infertility, repeated miscarriages and treatment cycles is to have to coordinate multiple doctors and mulitple treatments all on your own. Why don't I just decide what IVF protocol to use as well?

So, putting aside IVF for a moment I thought I would call the clinic where our one little frozen embryo is and ask about doing a frozen transfer along with intralipids. I figured if they gave me an enthusiastic response I would take that as a sign that the FET is the way to go. Unfortunately, I got pretty much the same response. I need to find someone to prescribe it and coordinate that myself. Great, just great.

I feel stuck. I feel sad. I feel frustrated.

Monday, July 19, 2010

Finally Some Good News

I was dreading Friday. Friday was the day that the pregnant lady I work with was going to making the big announcement of the sex of her baby which is due mere weeks before our little Therese would have been born. Aside from just finding pregnancy talk in general difficult to deal with, I knew that my reaction to her announcing she was having a little girl would not be pretty.

I spent Friday morning getting my hair colored so I thankfully missed all the ohhing and ahhing at the office. By the time I arrived the talk had settled down and I managed to not even find out about the sex until this morning. Thank goodness she is having another boy. Finally some good news with regards to me keeping my sanity through January and another due date.

In other good news, I am happy to report that this morning I weigh three and a half pounds less than I did this same time last Monday despite having really not eaten very well over the weekend. Being at home is far too tempting for me. I do better not overeating when I'm at work. And, yes, I realize that most of that is probably water weight but you know what? I'll take it!

Tuesday, July 13, 2010

Bad Timing Good Food

Why is it that things seem to happen but always at the wrong time? As the nurse was filling 15 vials with my blood so that I can be tested for any number of immune disorders that may be killing my babies, she mentioned that it would take around two and half weeks for the results to come back. Naturally, we don't want to start trying again until we know the results of the tests. So, although I've been waiting anxiously for my cycles to come back today was probably the worst day for it to actually happen. If today is cycle day 1, that means that we won't have the results back until I'm either just ready to ovulate or have already ovulated. I suppose if we get them back just in the nick of time, and assuming they come back normal, we could try on our own but doing an IUI is basically out of the running this cycle. The thought of sitting out a cycle is killing me inside but the thought of getting pregnant only to lose another baby is killing me even more.

On to good food!

My menu for today:

The muffin at breakfast was very moist and quite tasty. The yogurt was a tad tart for my taste but good nonetheless. I pitched the banana as I am a banana snob and prefer them still with a hint of green.

Pizza on a diet! Granted, it didn't have as much cheese as I would like but the peppers on top were a nice addition and this was pretty filling.

Instead of holding onto both of my snacks for the evening I forced myself to eat the buffalo chicken strip mid-afternoon. It was spicy and the pearl onions were awesome.

Dinner was stir fry, although stir fry with shredded carrots instead of rice. I love asparagus and roasted tomatoes so that helped spice up the chicken for me. One thing I tend to get really tired of on diets is how much chicken you seem to be expected to eat. When making future meal selections I'm going to try and make sure I'm not picking chicken for two meals/snacks in a day.

Yesterday I had a real dessert but today the dessert choices just didn't appeal to me so my dessert turned out to be a cheese and spinach stuffed sweet potato. Now, I've never really liked sweet potato but this was excellent!

I've enjoyed the two days of food so far so much that I extended my plan into next week. Hopefully the good food keeps up and the weight starts coming off.

Monday, July 12, 2010

A Fresh Start

What's a girl to do when she's no longer pregnant? Diet :-(

One of the things I love about being pregnant is that I am free from the daily thoughts about how I'm too heavy, how I need to eat less, how I need to lose weight, etc. I also seem to just feel a whole lost less hungry when I'm pregnant. I can only eat about half what I'd normally eat and have zero interest in snacking or eating when I'm not hungry, which is not normally the case. Add to that all the weight I lose from the morning sickness and it's like the perfect state of being for me. Being back to the place where I need to consider dieting is just one more layer that is the crappiness of the miscarriages.

I've completely given up on trying to find the "right" diet and given up on burdening myself with coming up with a meal plan, deciding on menus, grocery shopping and cooking. How is that possible? It's called the Fresh Diet. Each night someone comes to my home and delivers a nice little cooler full of food for me to eat the next day:

Today's meals were actually all quite good. I had ricotta filled crepes with strawberries for breakfast, a philly cheese steak wrap for lunch, garlic toast crisps for a snack, raspberry chicken with whole wheat pasta and spinach for dinner and chocolate-chip, cappuccino cheesecake for dessert.

Tomorrow's food looks pretty good as well (pizza for lunch!) so I'm excited to taste it all. Well, excited for everything except the banana which is spotted and I'm type who likes her bananas rather on the green side of things.

Sunday, July 11, 2010

Healthy Female

After four weeks of waiting and wondering I finally got an answer, it just wasn't the answer I had wanted. The pathology report came back saying that I was carrying a healthy little girl. No chromosomal abnormalities at all. None. Which also means no reason why she died.

I really need there to be a reason why she died, and why Trey died. Searching for that reason is leading me to be tested for immune issues such as anti-thyroid antibodies and elevated levels of natural killer cells. I'm scared that the tests will back showing problems and that we may never have another child and at the same time I'm scared that the tests will come back normal and I'll be left with still zero explanation as to why my babies keep dying.

We have named our little girl Therese Barton. I want the next baby I name to be a live, healthy, cooing baby that I am holding in my arms.

Wednesday, July 7, 2010

Washed Away By the Tide

A woman who I don't even know made this for me:

I look at it and it makes me happy and sad all at the same time. Happy that we had him, even if it was for way too short a time, happy that someone understands the deep, unbiding love I have for my little boy, and sad that his name was washed off the beach just moments later by the waves the same way his little life was taken away much too soon.

Thursday, July 1, 2010

Don't Judge a Book by it's Cover

People have stopped asking me how I'm doing (those who did in the first place). Even more so, people are finding it appropriate to hold long conversations regarding pregnancy around me. Is that because they are clueless or because they feel I am "over" my losses or some other reason I can't even begin to fathom?

I suppose that if I just saw myself the way others do I too might think that I've made my peace with things and am moving forward but haven't we always been told not to judge a book by it's cover? Sure, I show up for work everyday, I'm on time, I get my work done, I even stand around with coworkers and gab about the latest episode of Top Chef, but that doesn't mean I don't cry in the shower in the mornings or cry my entire drive home from work.

I believe people have stopped asking how I'm doing because it's easier to just assume everything is a-okay. If they ask they risk finding out that the truth, which is that I'm a huge mess and every day is a struggle.

A small step in moving forward has been made though. Given that I am in limbo until my cycle returns, I have made an appointment with yet another RE to discuss our options. The Madison RE told us that mini-ivf was not for us and our plan, prior to this last natural pregnancy, was to do an IUI using femara. I'm still up for that plan but figured a second, third, fourth opinion can't hurt. I am going to what I fondly refer to as the "cheap ivf doc" to find out if what they call mild-stimulation IVF would work for us. Now, this isn't the original cheap IVF doc, who unfortunately passed away this spring, but it is someone who worked with him and is temporarily managing his clinic. The receptionist said that they are basically working on a month to month basis and so any treatments I wanted to do would need to be started immediately and completed by mid-August. Well, clearly that is not going to happen. When I explained my situation she was very sympathetic and said that a consult couldn't hurt and if the doctor agrees to continue to cover the clinic that it would be good if I were an established patient. So here's to hoping we get good news on Tuesday - that a mild-stimulation may just work for us and that the doc will stick around long enough for me to cycle there.