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!

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