Friday, May 29, 2009

I've been thinking I should post something substantial for my 100th post. Then we lost "our" Internet at home and I lost contact with my blog world. I am at my mom's on my sisters laptop where I can't access my deeper, cheesier blogging self, but I thought I should get it over with, steal a picture from Alex's blog from San Diego of Katie and I and do a quick update. I'm sure the whole Internet has been waiting for it, rapt.

Today we are going to LDS Family Adoption Orientation. I keep thinking it will get us excited for the adoption process, but then I thought that about the IVF orientation, and that was very, very discouraging. So we shall see.

We have also decided to go through with the second $2000 test, just to have all our cards on the table before committing to the yellow brick road. Have you ever watched The Wizard of Oz and noticed at the beginning the red and white roads that start out swirled together with the yellow brick road? I have always wondered where those went to. Guess we'll never know.

We got an email from our doc saying that at this point with our current testing done, our chances of getting a pregnancy out of IVF is higher than 40% but not as high as 50%. Quite a drop from his last prediction. However with how good I am at making eggs, becoming pregnant, and holding a pregnancy, even one with serious issues, then our chances could still likely be higher than that. We figure we will go through this test, any testing he wants to do on me, and see how we feel. My sister starts her IVF cycle in the next couple of weeks, so watching her experience could very well affect our decision. She may turn into a beast and have a poor outcome, and that would just destroy it, for me, anyway.

In other annoyances, I canceled my gym membership on Tuesday, because when I showed up they had a notice posted saying they were going to start charging $2 a visit for the kids club. I had already bought the premium membership for the included babysitting years ago, so it peeved me a bit, especially since I already was paying $42 a month, (A LOT) and don't use the pool, the hot tub, the sauna, the classes, or most of the equipment. So I asked how much it would be to add Zar to our account--$30 a month. Seems a little ridiculous when we could both join at Golds for $40 a month. I don't want to pay $72 a month for us plus at least $10 a month in Ella-sitting. So I canceled it, and they didn't fight me at all. I thought they'd offer me some sweet deal, but no. So long, 24 hour fitness. They were wonderful to Charlotte, and I always said I'd pay any price for a gym that would treat her well. I am grateful for that, for sure.

Then I came home and pulled out our fantastic Jeep Jogging Stroller to inspect it, thinking it would be my new mode of exercise. The tires need air, so I shoved off to the side of the garage, and ran over it the next morning.

I called a couple bike shops but no one seems too keen on fixing it--the frame seems a bit bent and I snapped a bar I have been calling "the rear axel" but Ramon at work seemed surprised it had an axel, so perhaps I am using the wrong term. Anyway, the thing is a goner. And it still looks so great, from a certain angle. ARG.

Anyway, so now I'm addicted to KSL classifieds. I found a likely looking jogger for $50 in park city, but the dude just called to say someone was coming over to look at it, and I was welcome to come fight for it. No thanks. I told him to call me if the guy turns it down, but it would have to be pretty crappy for the guy to pass up a nice jogger for $50.
I'm on an up slope on the grief rollercoaster. Charlotte has felt near and the memories have been sweet. Hopefully this is a long climb, and the hill on the other side won't be too steep. Like at Disneyland on Pirates of the Carribean, when you climb that last hill, thinking you are going to get sopping wet in a moment, but it just drops you gently back at the start. You forgot you fell DOWN at the beginning, and needed to go back up. Funny how so much of Disneyland is below ground. Disneyland is on my mind pretty much hourly.

Anyway....that's where I stand. Happy 100th post. Hope it was memorable.

Saturday, May 23, 2009

Happy Birthday Alex!
Fantastic story: Last night we went to see Star Trek which was very surprisingly fabulous. Or maybe I just haven't been to a movie since November. Anyway, I got Raisinettes, and proceeded to suck all the chocolate off them and spit the remaining raisins back into the box. Which I've never done before but didn't want any fruit spoiling my candy. Anyway, after the show Alex saw me shake the box, heard the spitty raisins, and then watched me set it down, and it being his birthday, he felt it appropriate to grab the box and dump it into his mouth.
Oh man, it was hilarious.
Good times.

Thursday, May 21, 2009

What would you do in our situation? I really do want to know. These are all potential options, although we have more or less ruled some of them out.

Option 1: Just keep trying to have a child naturally and hope and pray everything turns out okay.

Option 2: Try naturally, go through prenatal testing at 9 weeks and do a D&E if there is a problem.

Option 3: Start the adoption process ASAP. This will cost between $7000 and $20000.

Option 4: Do IVF with PGD--this costs about $15000 to $18000. Our chances for getting a normal embryo are about 78% and if we are so lucky our chances of having it implant resulting in pregnancy will be about 80%.

Option 5: Look into other options, namely using donor sperm. This will cost about $500 and will not require IVF. Whole other can of emotional worms with this one.

Option 6: Thank God we have one healthy happy baby and one wonderful daughter in heaven and leave it at that.

I hate to bring money into this. I really do, it seems so inappropriate and shallow, but it's a fact of life unfortunately. At the same time, I keep thinking of the money spent on a new car, or a down payment on a house or graduate school, and getting our family here seems so much more important than any of those, so shouldn't money be no object?

We are currently debating whether to run IVF test number 2, the $2000 one. If Zar is going to want to do IVF regardless of the results of that one, I don't see why we should bother doing the test. I've put that question to the doctor and am waiting to hear back.

Today is the 3 month anniversary since losing Charlotte. I went to the gym early today and gave a thank you card with a picture of Charlotte to the Gym Kid's Club lady who cried yesterday when I had to tell her Charlotte was not at preschool. I cannot believe I haven't been to the gym since then. To be fair they wouldn't let Ella stay in the kid's club until she was 6 months old, so what could I do?
I am doing well today. I've gotten some exercise, I ate a salad last night with lettuce from my own darling little garden, I'm going later today to pick out a font for Charlotte's headstone, and it's a beautiful day. I'm in family planning limbo, but that's okay. We'll figure it out.
Still, opinions please.

Tuesday, May 19, 2009

Yes, we went to California. Again. It will be the last of our attempts to escape life. In the weeks immediately following Charlotte's death, we felt like it was the most important thing, to be together, to get out of town, to focus on having fun as a family. So we planned a trip to San Diego, and then were invited to Disneyland, and planned on that too. It was ill advised, due to our financial situation, but in the end it's just money, right? Money we should have been saving to pay for adoption or IVF or a down payment on a house or something. And now it's gone, and it's over, and we are home again with pictures and good memories and a stuffed Okapi from the San Diego Zoo. And I'm glad we went. It was wonderful.

But what a bummer to be home again! Today at work I was asked to go to a procedure at Primary Children's. I would've been fine to do it two months ago, even a few weeks ago, but now I'm not ready. I pictured going down to the blood bank which is right across from the PICU where Charlotte died in my arms, and I teared up. It was the first time I've cried at work since we lost her. I said I couldn't do it. I said I just wasn't ready and I was sorry, and I made my co-worker go do it even though she had other things to do and she had to stay late. I feel terrible about it, but I knew I just wasn't capable of keeping it together and providing competent quality care. I've been to Primary's a few times since Charlotte died, but somehow it's different when you are there as a care-giver and not a visitor. I'm not sure how, but it is.

Grief is not a linear process. It comes in waves. It comes at night and is dimmed by morning. It comes when I see a picture of her I haven't seen in awhile, when I write her name in the sand and watch the water take her away before I can get a picture, when I look at the price lists and success rates for IVF and feel hopeless and afraid. Grief comes and goes, but lately, mostly it just stays.

Monday, May 18, 2009

Oh hi! We just flew in from California and are going to bed. We are glad to be we aren't. Just wanted to check in!

Wednesday, May 13, 2009

See you later! I'm going to San Diego with my buddy Caroline! It's my first vacation! We're going to go to the Zoo, to Sea World, The Wild Animal Park and whatever else we want to do. We will be back on Monday. Wish us luck, two infants on a plane may be a little...stressful.

Tuesday, May 12, 2009

Hope is the thing with feathers
That perches in the soul,
And sings the tune without the words,
and never stops at all.

Emily Dickinson

For Mother's Day this year Jennifer, who I do not know, sent me the Angel of Hope, this beautiful journal and a card with a butterfly on it. I only know that Jennifer also is going through difficulties to get her family here. I wanted to thank her so much--and tell her I have faith good things are in store for her too.
I know I am so blessed. I have two daughters, even if one of them isn't here physically anymore. And yet I Hope that there is at least one more in store for us. I Hope I can get through this life living worthy of Charlotte, and I Hope that with time I won't have moments of anguish every single day. I Hope good things are to come. I know the purpose of life sometimes is just to get through it, and sometimes Hope is all I have for the day. I'll look to my little angel to remember there are others who have gone before to light up the way.

When I drove up to my mom's to pick up Ella today, I saw her stroller in her driveway, the same stroller I pushed Charlotte around in for two years. She went to her first day of preschool in that stroller, because I was hugely pregnant and couldn't lift her wheelchair in and out of the car by myself. Oh, and they had assigned her to a school bus without a wheelchair lift.
It was instant and totally irrational, but I felt my heart leap and I thought "Charlotte's here!" and in the next instant I felt my heart break all over again. I pulled myself together within moments but it was like another little death. It's hard, these forgettings and rememberings. And it's too much to think too far ahead. To think of myself as a grandmother, still thinking of Charlotte and wishing my other children remembered her too. And to imagine losing my parents and being just a little bit jealous, to think that they will see Charlotte again before me. But then, you would think I would have learned to not predict the future. I Hope one day I feel that same leap in my chest and the next moment I see my Charlotte smiling and I hold her close again.

When I pick up Ella, I don't instinctively look for a oxygen tank to sling across my back. But I used to. I used to feel my heart skip a beat when I glanced up and didn't see tubing across her face. I haven't thought to myself lately how easy it would be to feed Ella through a surgically implanted tube. Last Thursday I didn't once ask myself when the Praxair man would arrive. How quickly I un-adapt. Now, almost three months since last holding Charlotte, I have already forgotten our routines. I think this is why the grieving gets harder. I am left with less to do, less to worry about, and I feel those absences almost as acutely as Charlotte's. Up until two weeks ago I still would stop and listen now and then thinking I had heard an alarm from her bedroom. But it is quiet.

That's when the grief wraps itself around my throat. At night, when all is quiet.
Tonight I will listen for the tune without the words and pray it never stops. I will cling to Hope.

Wednesday, May 06, 2009

Well we have some IVF news. Sort of.
Zar got a call today telling him that 8% of the swim team have chromosomal issues. Only Eight Percent? That's pretty much a miracle! Or not. Turns out the test they ran was checking for OTHER chromosomal issues not related to the balanced translocation. So 8% of the swim team have other issues, in his body's attempt to fix the balanced translocation and ripping off chunks of chromosomes from previously normal ones. So not much help there. The doctor said we need to have another test done to find out what percentage carry the unbalanced chromosomes, which is what we thought we were already doing. They will then add the two numbers together to get our total percent of lousy swim team members. So BEST case scenario, which is also pretty much impossible, is that 50% of the swim team have unbalanced translocations, plus the 8% with the other chromosome issues, making the total 58% abnormal. Not great. And also not likely.
Here's my issue. To me it seems you would do the translocation testing first. If that came back at 80% or so, would we pay the $800 to find out what percentage had other issues? I doubt it. No one mentioned that there were TWO expensive tests to do to find out. And why couldn't we have done them simultaneously? If we decide to do the other test, this puts us out another 6 weeks or so.
Here's what I suspect. The clinic screwed up. They ordered the wrong test which is why they acted so squirrelly when we called for days on end for results. Oh, they are in dictation, or Oh, they are locked in someones desk, or the one that makes the least sense "They aren't...where we thought they'd be." Or rather what you thought they'd be? Yeah, more likely.
I think they screwed up. Or at the very least, misled us. The nurse assured us that the doctor wants us to have all the information before we make a decision, which is great. But all the information would include how many tests need to be run, yes?
They say tomorrow we will get a call letting us know the pricing on test number 2, the one that really matters. Thanks a lot.
My impression: not going well. If I can't trust the clinic to order the right tests, can I trust them to manipulate embryos, test them, put them back, and get me a healthy baby? Not really.
I looked into another top notch clinic in Colorado but the initial phone consult is $250. Sigh. How bad do I want another pregnancy? Not much. How badly do I want Ella to have a sibling or two to grow up with? Very. I wanna take my brood to Disneyland and force the girls to wear crowns and $65 princess dresses and the boys to wear pirate hats and carry plastic swords. Is that so much to ask?

The LDS Family Adoption Orientation is on the 27th. My guess is you will find us there.

Oh and here's another random Disneyland photo. And oh my goodness, compare Zar's gooney face to Ella's gooney face in the sidebar picture. Honeslty. The goons I live with.

Tuesday, May 05, 2009

Here's me having some sort of spiritual experience on Space Mountain on Saturday. Back row.

I thought for sure I would have news by now. I don't. They told Zar today that the results weren't "where we thought they were" and that it can "take up to a month." Which was last Monday. Oh well, limbo isn't so bad. I'm not entirely sure I'd be comfortable going through with IVF with this clinic at this point. They appear to not know how to look up their own lab results. Hmmm.
I read C.S. Lewis's book, "A Grief Observed" last week. It is a quick read, all in one sitting, written as a journal in the weeks after his wife passed away from cancer.
It was recommended by a man my mother met, who mentioned that there is an assumption among religious people that if you really have faith you shouldn't need to go through the grief process because you "know" you will see your loved one again.
Believe me, I have no idea how you would go through life, especially the death of a child, without faith. How terrifying. What tremendous, crushing emptiness that must be.

Lewis, in his book, compares faith to a strong rope. It is one thing to have have confidence in that rope, to know it is strong and good when you are using it to secure a box. It is a different thing when you are asked to dangle over a cliff with only that rope to support you. Do you really trust your faith now? This is what losing a child is like.

Yes, thank goodness I can say that I still trust my little rope. I'm suspended over a canyon, the very Valley of Death, but I'm dangling. I'm not falling. Or maybe I'm flying through the dark on a rollercoaster. Sometimes all you can do is keep hanging on.