Wednesday, December 11, 2013

It costs what?!

I have been a busy lady over here working down my “to do” list for getting going on IVF. I have spent a lot of time getting set up with the genetics lab. I received the AWESOME news today that our probe does NOT need any updates, and is ready to go when we are. I was concerned about the timing of this leg of it, and am relieved that we just get to move on. Though, I will admit that a small part of me is bummed that in three years there are no new updates on detecting MCADD via pre-implantation genetic diagnosis. But, as I type this, it also means that Aaron was tested in the best possible way which is great, so whatever. We are moving on. Chris and I just signed a mountain of paperwork and contracts for them, and holy moly, I just wrote my first big check for this whole adventure. Wow, prices have gone up to have this science at our fingertips since we last did it. We have to do it though, so what can we do but just write the check, and try not to think about it too much? Onward, right?

Speaking of contracts, Chris and I have been working hard, trying to get all the paperwork behind us with the IVF clinic as well. To do IVF, it is like buying a house or a car with all of the contracts you have to sign. It is a huge deal, as you can imagine, and it is hard to read because they run you through everything that can go wrong. And, I do mean EVERYTHING! I tried to save Chris the stress and anxiety of reading all that. He doesn’t really have the blood pressure for it with our grief issues, so he camped out in front of a soccer game while I read and occasionally leaned over and said “sign here.” We got through it.

All of our stuff with the IVF clinic is moving along. (TMI warning…) They were waiting to see how long it would take me to get a period after I got off birth control to signal that my reproductive system was back in business. Turns out it only took me a couple of days and there it was! Amazing how fast that works. I remember when I have gotten off birth control to have the boys it took just about no time at all for that stuff to leave my system. Anyways, they are now controlling my cycles with birth control pills. Seems counter-productive, right? But they have a trick to it, in terms of which ones I take, and for how long. Crazy science! But everything from here on out will be measured to a “T.” XYZ test has to happen on such-and-such day in my cycle. XYZ drug is given on such-and-such day in my cycle, and so on.

I do my last round of tests (I think) on Friday, and I will get my calendar for when the IVF cycle will happen at that appointment. Drugs will be ordered soon after that I imagine (another big check written then as well. Yikes!) And then I will sit and wait for the day that I need to start taking everything. I am continuing on with acupuncture, doing all the groundwork that is necessary there. She will likely begin her full treatment with me next week. That is a crazy process in and of itself, and I will tell you about it as I go through it!

I am getting really excited. I went through some old pictures of Aaron tonight. I miss the baby stuff. Don’t get me wrong, he is so fun as he is now with all he can do, and tell me as a toddler (I say this as he is as he is currently yelling at me because he is STILL awake at 10pm and wants something. Sigh!) BUT, it has been a while since I had the snuggly baby stuff, and I do miss it. I am excited to get to do that again. Working hard to get there!

Wednesday, December 4, 2013

Ouch! And other updates...

We are making progress. Our two big goals in the immediate future are:

1. Do our best to speed up any updates needed to our genetic probe that will test our embryos for MCADD.

We use an amazing genetics lab in Detroit to test our embryos. The lab is headed up by THE guy who invented this whole amazing part of medical science. He is also really awesome to talk to and is so passionate about what he does.

So, how does this whole thing work? In the lab, sperm and egg will meet. Cells will divide, and when they are just the right size (used to be eight cells big more or less) an embryologist at our IVF clinic will lance it open and suck out a single cell. The embryo is fused back together and frozen for us to implant down the road. The cell that was removed is shipped to the lab in Detroit for a full genetic profile, where they will look for MCADD, among other things. We will know which embryos are sick versus healthy up front, and can make decisions from there.

The tests they build are unique to every family (and, they are also called "probes"). They don't destroy any of the probes that they build. They keep them in case you want more children down the road, and also to help keep genetic research moving forward.

I called and confirmed that they do still have our probe, but since it has been three years since we last used it, it has to go through a review process to see if any updates to it need to be made. Genetics is a fast moving science, and they know more about MCADD today than they did three years ago. The review process can take 6-8 weeks, which sucks because we will need to get going soon, but can't if the probe isn't ready for us.

Our awesome IVF clinic has given them the official orders to get going on it, and I talked them into doing a more expedited review. Fingers crossed that comes through for us in time. I will check in with them again next week.

2. Get off birth control and start pre-screening tests. (TMI warning...)

Chris got his blood work out of the way when we had our first IVF visit last week. Mine is harder because I have to get off birth control and get my cycle back on track first before I can do most of that.

I have been on an IUD since I had Aaron, and had to have it removed today. Turns out that it had moved from where it was supposed to be and the doctor had to kind of dig it out of me. I did my darndest to keep calm and relaxed and it helped. I got through it relatively pain free, though I have been cramping like crazy tonight, and feeling generally uncomfortable. It was such a reminder of how much IVF hurts and what I have ahead of me. There is lots more of this kind of pain coming. No one tells you that: IVF hurts. It is a tough thing to put your body through.

I won't name names, but we have had some push back from some folks in our life lately about our decision to do IVF, and today was such a good reminder of why we do this. For a little while in the process of trying to get my stupid IUD out this morning, she couldn't find it and thought it might of fallen out. I was paralyzed with fear, thinking "what if I am already pregnant and it has MCADD?!" Panic. Does that word even cover it? For many of the amazing parents that I know of kids with these illnesses, they get into a groove and they just do it. But, I have seen the worst that the illness can do to a child, and I don't think I can survive going through it again. It was and is agony. I am sick for Noah every day, and Chris and I go through this whole crazy way of having children so that we never have to live this again. It is worth all the trouble, cost, invasiveness and toll it takes on my body. It. Is. Worth. It. Lord knows anything can happen to us in life, but I will not see another of my children have this disease. Those moments in the clinic this morning of worrying like crazy reaffirmed that decision for me.

After my fun with the IUD removal at the IVF clinic, I went straight to my acupuncturist. She has some tricks to get my body back on track again, and I will see her twice a week for the next couple of weeks at least, as I get back into my groove. Then, I can follow up with the IVF clinic to complete my pre-screening tests and get a more official calendar set for when everything will happen.

Excited! And eager to get moving on everything!

Getting Started

First of all, readers, be forewarned that to read along with an IVF journey is really an exercise in TMI (too much information.) Much of this is wayyyy more than you would probably ever want to know about me. Feel free to skip around to get the 20,000 foot level with fewer details if you would prefer!

Our first meeting with the fertility clinic went well. It was pretty easy, considering that we already know what we are in for, having done it once before already. It was fun to see familiar faces and exciting to think about getting started. What I envisioned is that this would be a quick consult to let them know what we want to do, and to get going on pre-screening tests and paperwork. Of course, there is a lot more to consider than just that! I am getting back into the swing of it though!

Some big things to deal with:
  1. I have to get off of birth control, and wait for my regular menstrual cycle to kick back in again. I have no idea how long this will take. We just have to wait and see. Once I have a regular cycle, then I can complete my pre-testing, that estimates my viability to do IVF and also gives them the data they need to figure out how much of the meds I will need. We will also know specific dates of when we will be doing the full IVF cycle once I am regulated as well. This is frustrating, because we have a calendar in our heads of when we want everything to happen, but it is up to when by body decides to cooperate! I see an acupuncturist when I do IVF and this is where I really need to rely on her. She has her own tricks for making my body chemistry cooperate. I have already doubled up on appointments with her next week. Fingers crossed I can get back into a normal groove.
  2. The genetics part of this is 100% our reason for being there. That has to be spot on. The genetics lab we used still has our testing probe that they built when we wanted to get pregnant with Aaron. I thought that would save us some time, but the world of genetics is such a fast-moving area of medicine. It has been three years since we last used our probe, and things have changed since then. Therefore, they will review all of our stuff and see if any tweaks need to be made. This will take 6-8 weeks. WHAT?! I was floored when I heard this. That is a really long freaking time. I am kind of frustrated about that, and will do whatever I can to speed it up. Prayers on that one.
Our preferred timing? I have to travel for work in March and April – both a pretty big deal trips that can’t be moved or cancelled. Therefore, I want to be done with IVF in February. I hope it takes on the first try. I am 35 years old, and that changes some things. At that point, you are “maternally geriatric” or getting to be kind of old to be a new mom, and you don’t produce as many eggs. It was strange to hear our doctor hover on whether or not to talk to me about pre-menopause. Really?! I am not THAT old am I?! Jeez… All the more reason to get going on this whole thing!

To be done in February means that I will do the egg retrieval stuff in January. Then, they will let my body recover from all of the hormones and such for a few weeks, and then implant an embryo in February. When we had Aaron, they implanted right away, but now the best practice method shows that if you give mom’s body a chance to recover from the IVF madness for a while first before implantation happens, then a pregnancy on the first go-around is more likely (though, of course, there is no guarantee by any means). We are for doing whatever will work best, and keep our new kiddo safe, so we are ok with this. The embryos will be frozen while I heal, and that is supposedly ok.

Holy moly, we are on our way!!

Tuesday, November 26, 2013

Here we go again!

Dear Baby,

I am sitting here at my computer on the eve of my first IVF appointment. There will be a lot to do between now and when we do the full cycle of treatment. Lots of tests, lots of prep work, but hopefully in the next few months this will happen. It is weird to put it out there, because this has just been a thought, a wish and a prayer between your dad and me, and a few select others close to us. But we are moving forward. I want a record of this. I want you to know how loved you are, and how much we wanted you and were willing to fight for you since before you were born. I kept a record for your brothers, and you deserve all of the same love that we have had the privilege of giving them.

I never envisioned that I would be a mom of three children. That felt overwhelming once upon a time. But, sweetheart, you are coming to a non-traditional family where one of us is here in spirit. Your life will be spent with your dad and me and only one of your brothers in this physical world. But, you can count on your oldest brother always being there to look after you in his own way. It is a tough burden we carry, and I hope you are prepared to carry it with us. Your brother Aaron does it beautifully, and we will teach you the tricks of the trade. We have a lot of love to give, and we are so excited to have you fall into step with the rest of us.

You are the missing piece of our family. There is a certain air amongst us that something is unfinished. We aren’t complete. We need you. Before we can move on to any next step, you are the key, and we thank you in advance for coming and filling that spot. It belongs to you. I can’t wait to meet you and see how you make your own mark on our family. I am excited to see who you turn out to be – your aspirations and dreams, and learning how I can help you achieve those things. I have been waiting for you. Let’s get started, shall we?