So ever since we have made public that we are attempting IVF/PGD again, I have had a bunch of people tell me "Congratulations!" Now I know they mean well, and their kindness is very appreciated, but I must admit I kind of chuckle inside every time I hear that. Telling me "Congratulations" at this point in the process feels very much like telling someone who is entering a talent competition "Congratulations!" before they have even competed! I suppose you could be congratulating them on their courage to even enter the competition, but still, it isn't quite what one would expect to be wished at the very beginning.
So the next time you find out someone is going on an IVF journey, try saying, "Good Luck," "Bonne Chance," "Buena Suerte," or "Best Wishes." Then hopefully at the end of the process there will plenty of reason to offer your warmest "Congratulations." :)
Friday, January 21, 2011
Thursday, January 13, 2011
And So It Begins...(Sort Of)
Today was sort of a strange day for me. It is one thing to talk to Dr. Heiner on the phone about starting this process all over again, but quite another to actually do something about it. On one hand it was fun being a patient again in a place that has given me such profound joy. But on the other, I am just not sure how I feel about all of this. I am mostly just "going through the motions" because we agreed we would. (Read: I am doing this because my hubby really wants me to. It's not that I don't, it's just that right now I can't say I do, either...)
So since we were already coming down to Utah for family stuff, we went to Reproductive Care Center to do pre-IVF tests. First we both got our blood drawn for an infectious disease screen. No biggie, I don't mind having my blood drawn. (Good thing, too, because in March I get jabbed every other day for weeks!) Then the nurse handed us cups for a urine sample. Oops! The first thing I did when I got to RCC was run to the bathroom, because I really needed to pee. I sort of laughed and told her I'd try. I did, and I handed her the cup with the tiniest sample in it. I was feeling sort of sheepish until Rich came back with an empty cup! He couldn't pee! He had to drink a Sprite and wait awhile before trying again. It was just funny.
The next thing we did was a saline sonogram. That is where they insert a catheter into my uterus, use a balloon-thing to open it up a little bit, then fill it with a saline solution so they can examine the uterine cavity via ultrasound. It makes you cramp a little bit when they do the balloon part, but really it wasn't as bad as I was expecting. (I remember it hurting worse last time....maybe I was just more nervous the first time around.) I was totally expecting everything to be normal, but Dr. Heiner found some fluid in my uterus. At first he thought it was a polyp (which would not be good--that would delay our cycle and require surgery), but once he really got looking he decided it was just fluid. He said that it just happens sometimes....just some type of uterine congestion. Still -- "uterine congestion" doesn't sound very good, does it?! He said we had plenty of time for it to clear up on its own -- it only would be a problem if by egg retrieval day it hadn't gone away. So I am not going to worry about that right now, and hope that it just clears itself up. He also found 10 antral-follicles on my right ovary and 4 or 5 on my left. Those are the "pre-follicles" which give an indication of how many eggs are possible. It's not an accurate predictor as that number can change all the time, but with my previous two cycles that number proved to be right on.
The last test we needed to do was Rich's Kruger test. This basically measures the count, motility and morphology of a sperm sample from him. Initially I went with him to The Room, but we quickly decided it would just be easier without me. (Don't ask...when you take 100% of the intimacy out of certain actions, they just become very, very awkward. That's all I am going to say about this. ;) ) So while I was waiting for him, I noticed a man in his office that looked familiar to me. I stuck my head in and said, "Aren't you the anesthesiaologist?" "No, I am the laboratory director, but you look familiar as well -- have you been here before?" After we established that he had been the one to handle our eggs & embryos, etc., the last time, I was able to ask him something I have been wondering about. "So tell me something, how do you guys select which sperm to use for ICSI? Because that person is basically determining the gender of my potential children." He got a big smile on his face, pulled out a pad of paper preceeded to draw me pictures and explain stuff to me. Then he turned to his computer and pulled up a PowerPoint presention that went though the entire IVF/ICSI process, complete with actual ultrasound video footage of the egg retrieval, ICSI and transfer processes. It was fascinating!! (For those who have no idea what ICSI is, it is where they select a single sperm and inject it into a single egg. Some couples require this procedure if the male has low sperm count, bad morphology, etc. For us, it is because if more than one sperm touches the egg, we will have cross-contamination of the DNA samples for the PGD testing...) And just in case anyone besides me is curious, they really do put all the sperm in one end of a media strip and select the best-looking ones that reach the middle line first. So it literally is the "fastest swimmers" that get selected! I don't know why, but for some reason knowing that just makes me chuckle... Dr. Reggio spent a good 20 minutes showing/explaining stuff to us. (My hubby had joined me after a few minutes.) And when we finally thanked him and said goodbye, I was left with two main impressions: 1) gratitude that a person who is so very key in our cycle being successful is so very passionate about what he is doing! I mean, he could have just waved me out of his office or given me a very brief, undetailed answer to my question. But instead, he got very excited and took the time to really show us everything! 2) just that satisfied "ah-hah" feeling I get when I truly understand something in-depth that I previously only sort-of understood before.
And then we were done, and we left. Now I am just waiting for my next period to start, when I will start taking birth-control pills again. Then sometime in early March I will start Lupron injections. So today's visit was a "beginning--sort of." :)
So since we were already coming down to Utah for family stuff, we went to Reproductive Care Center to do pre-IVF tests. First we both got our blood drawn for an infectious disease screen. No biggie, I don't mind having my blood drawn. (Good thing, too, because in March I get jabbed every other day for weeks!) Then the nurse handed us cups for a urine sample. Oops! The first thing I did when I got to RCC was run to the bathroom, because I really needed to pee. I sort of laughed and told her I'd try. I did, and I handed her the cup with the tiniest sample in it. I was feeling sort of sheepish until Rich came back with an empty cup! He couldn't pee! He had to drink a Sprite and wait awhile before trying again. It was just funny.
The next thing we did was a saline sonogram. That is where they insert a catheter into my uterus, use a balloon-thing to open it up a little bit, then fill it with a saline solution so they can examine the uterine cavity via ultrasound. It makes you cramp a little bit when they do the balloon part, but really it wasn't as bad as I was expecting. (I remember it hurting worse last time....maybe I was just more nervous the first time around.) I was totally expecting everything to be normal, but Dr. Heiner found some fluid in my uterus. At first he thought it was a polyp (which would not be good--that would delay our cycle and require surgery), but once he really got looking he decided it was just fluid. He said that it just happens sometimes....just some type of uterine congestion. Still -- "uterine congestion" doesn't sound very good, does it?! He said we had plenty of time for it to clear up on its own -- it only would be a problem if by egg retrieval day it hadn't gone away. So I am not going to worry about that right now, and hope that it just clears itself up. He also found 10 antral-follicles on my right ovary and 4 or 5 on my left. Those are the "pre-follicles" which give an indication of how many eggs are possible. It's not an accurate predictor as that number can change all the time, but with my previous two cycles that number proved to be right on.
The last test we needed to do was Rich's Kruger test. This basically measures the count, motility and morphology of a sperm sample from him. Initially I went with him to The Room, but we quickly decided it would just be easier without me. (Don't ask...when you take 100% of the intimacy out of certain actions, they just become very, very awkward. That's all I am going to say about this. ;) ) So while I was waiting for him, I noticed a man in his office that looked familiar to me. I stuck my head in and said, "Aren't you the anesthesiaologist?" "No, I am the laboratory director, but you look familiar as well -- have you been here before?" After we established that he had been the one to handle our eggs & embryos, etc., the last time, I was able to ask him something I have been wondering about. "So tell me something, how do you guys select which sperm to use for ICSI? Because that person is basically determining the gender of my potential children." He got a big smile on his face, pulled out a pad of paper preceeded to draw me pictures and explain stuff to me. Then he turned to his computer and pulled up a PowerPoint presention that went though the entire IVF/ICSI process, complete with actual ultrasound video footage of the egg retrieval, ICSI and transfer processes. It was fascinating!! (For those who have no idea what ICSI is, it is where they select a single sperm and inject it into a single egg. Some couples require this procedure if the male has low sperm count, bad morphology, etc. For us, it is because if more than one sperm touches the egg, we will have cross-contamination of the DNA samples for the PGD testing...) And just in case anyone besides me is curious, they really do put all the sperm in one end of a media strip and select the best-looking ones that reach the middle line first. So it literally is the "fastest swimmers" that get selected! I don't know why, but for some reason knowing that just makes me chuckle... Dr. Reggio spent a good 20 minutes showing/explaining stuff to us. (My hubby had joined me after a few minutes.) And when we finally thanked him and said goodbye, I was left with two main impressions: 1) gratitude that a person who is so very key in our cycle being successful is so very passionate about what he is doing! I mean, he could have just waved me out of his office or given me a very brief, undetailed answer to my question. But instead, he got very excited and took the time to really show us everything! 2) just that satisfied "ah-hah" feeling I get when I truly understand something in-depth that I previously only sort-of understood before.
And then we were done, and we left. Now I am just waiting for my next period to start, when I will start taking birth-control pills again. Then sometime in early March I will start Lupron injections. So today's visit was a "beginning--sort of." :)
Monday, January 10, 2011
My Path to InVitroland - Pt. 2
Basically I started by going to Google and just typing in "Cystic Fibrosis and PGD." Then I just read a whole bunch of stuff. And when I was done, I had decided a few basic things: 1) Cystic Fibrosis was something I really, really did not want to put a sweet, innocent child through, so 2) if I wanted to have another child, it was going to have to be through an IVF/PGD cycle, and 3) PGD was still considered "experimental" and wouldn't be touched by an insurance company even IF (and that, my friends, is sadly a very BIG "IF") I was able to get insurance to cover any part of an IVF cycle. So next I Googled "Insurance covering IVF" and came across an interesting web page that listed some companies that "may offer infertillity benefits including IVF." (That link can be found on the right-hand side of my blog.) And to my surprise, Deloitte Tax was listed as covering infertility, including IVF, up to a $25,000 lifetime maximum. Well, conveniently I am married to a CPA. So although the process was more complicated than I am making it sound, because of the infertility benefits my hubby changed jobs to become a staff accountant for Deloitte Tax.
The next step was to find an IVF center. I came across Reproductive Care Center and liked what I found. (I also liked that Dr. Heiner served as an LDS missionary in Paris, France. Not that this fact has anything to do with his qualifications, I am just enough of a francophile to let this information give me warm fuzzies about him!) So my hubby and I went and met him and discussed our situation. He understood our desire to take steps to have another child that wouldn't be affected by CF, and seemed genuinely interested in helping us make that happen. And a huge bonus -- RCC was listed as a "network provider" for our Deloitte health insurance plan, so they did work with them to pay for the IVF treatment! We discussed our timeline with Dr. Heiner, and left with an IVF cycle calendar that outlined everything we needed to do.
We next needed to find a place that did the actual PGD testing. From my research I found out there are two main places in the US that do this: Reproductive Genetics Institute (RGI), and Genesis Genetics. I don't remember why now, but at the time something about RGI made me gravitate towards them. (Unfortuately, even though we had insurance coverage for IVF, they still wouldn't touch the PGD costs because of the "experimental" status. So that was a solid $5,200 we had to come up with no matter what.) RGI was wonderful to work with and even though we were technically starting our cycle sooner than they require to develop the necessary genetic test, they pushed it through for us. We sent them blood samples from my hubby and me, and cheek swabs from Delia. From that they created our personal CF genetic tests, and we were ready to go.
I am not going to discuss the whole IVF process here, because that is what this whole blog will be about. So I will just summarize it like this: our first cycle didn't go so well. I was naively optimistic because my hubby and I weren't infertile, just genetically flawed. (ha! ha!) I quickly learned that being "naturally fertile" didn't necessarily help. On the morning of our scheduled embryo transfer, Dr. Heiner called me and asked, "Have you had a virus lately?" Let me tell you, that is not the question you want your fertility doctor to ask you on the morning of your scheduled embryo transfer day!! He then went on to inform me that though the embryos hadn't exactly died, none of them had grown at all since day 3. They had all just stagnated, which is NOT good. Basically after everything we'd done, we had nothing to transfer. (And just to prove how naively optimistic I was being, we DID have him transfer two embryos anyway...just because I wanted to have the chance for a miracle to occur. It didn't, and I wasn't suprised, but at least I know in my heart I gave it a chance.)
The next step was to find an IVF center. I came across Reproductive Care Center and liked what I found. (I also liked that Dr. Heiner served as an LDS missionary in Paris, France. Not that this fact has anything to do with his qualifications, I am just enough of a francophile to let this information give me warm fuzzies about him!) So my hubby and I went and met him and discussed our situation. He understood our desire to take steps to have another child that wouldn't be affected by CF, and seemed genuinely interested in helping us make that happen. And a huge bonus -- RCC was listed as a "network provider" for our Deloitte health insurance plan, so they did work with them to pay for the IVF treatment! We discussed our timeline with Dr. Heiner, and left with an IVF cycle calendar that outlined everything we needed to do.
We next needed to find a place that did the actual PGD testing. From my research I found out there are two main places in the US that do this: Reproductive Genetics Institute (RGI), and Genesis Genetics. I don't remember why now, but at the time something about RGI made me gravitate towards them. (Unfortuately, even though we had insurance coverage for IVF, they still wouldn't touch the PGD costs because of the "experimental" status. So that was a solid $5,200 we had to come up with no matter what.) RGI was wonderful to work with and even though we were technically starting our cycle sooner than they require to develop the necessary genetic test, they pushed it through for us. We sent them blood samples from my hubby and me, and cheek swabs from Delia. From that they created our personal CF genetic tests, and we were ready to go.
I am not going to discuss the whole IVF process here, because that is what this whole blog will be about. So I will just summarize it like this: our first cycle didn't go so well. I was naively optimistic because my hubby and I weren't infertile, just genetically flawed. (ha! ha!) I quickly learned that being "naturally fertile" didn't necessarily help. On the morning of our scheduled embryo transfer, Dr. Heiner called me and asked, "Have you had a virus lately?" Let me tell you, that is not the question you want your fertility doctor to ask you on the morning of your scheduled embryo transfer day!! He then went on to inform me that though the embryos hadn't exactly died, none of them had grown at all since day 3. They had all just stagnated, which is NOT good. Basically after everything we'd done, we had nothing to transfer. (And just to prove how naively optimistic I was being, we DID have him transfer two embryos anyway...just because I wanted to have the chance for a miracle to occur. It didn't, and I wasn't suprised, but at least I know in my heart I gave it a chance.)
I took a few months off for my body to rest, and then we tried again. (We figured we had enough insurance coverage for two cycles, even though that meant coming up with another $5,000 for the PGD portion.) This time we had much better luck, and here is a picture of the two embryos we transferred. The one on the left is an advanced morula, and the one on the right is a hatching blastocyst. We have no idea which one actually "took," but I have always thought that it was the one that was already hatching because it knew how much its mommy needed and wanted it... (At any rate, this is my baby's first picture--as a five-day-old embryo. Pretty neat, huh?)
Long story short, I did get pregnant and after some scary first-trimester bleeding, went on to have another beautiful daughter, Sophie. (Who is also a CF carrier...we didn't have any embryos to transfer that were totally CF-free.) And after she was born, I went ahead and had a tubal ligation to prevent any accidental pregnancies.
So fast forward another couple of years. Sophie is an adorable and healthy two-year-old (and Delia a healthy and cute five-year-old) and I am feeling pretty good about life. But my hubby wants another baby soooo much. It's not that I am anti the idea of another baby, it's just that I am not in the least bit baby hungry at all. And somedays I feel like I have one hand for Delia and one hand for Sophie...how would I manage more? But then I watch how darling my two girls are playing together; and I especially watch Sophie as she cuddles her dolly and says, "baby...sweet baby..." and a very tiny piece of me thinks that another baby would be fun. But at this point, that piece is verrrrrry tiny.
So what do you do when your hubby wants another baby and you don't, (not really)? In our case, I guess we try. Since it very literally takes Divine Intervention for the whole IVF/PGD process to work for us anyway, and I do believe that children are a gift from God, I guess I figure we'll try it and see what God's will is for us. Either He will see fit to send us another precious spirit to love and raise as our child, or He won't and we can close this door and know that our little family is complete with our two precious girls.
So with that mentality we contacted Dr. Heiner at RCC again. Of course he said he would be happy to help us try for another baby. My CPA hubby really would like to keep all the expenses related to the cycle and maternity costs in the same medical year, so we will be part of the March cycle batch. That means that if all goes well, the baby would be due on Dec. 21st.
At this point, I am really approaching this whole thing as an adventure, and will take it day by day to see how it goes. But this time I want to blog about it. The last time around I don't think I could have....I was too emotionally involved. But I want to record everything this time around. I am writing this blog for me, but also for anyone who wants to know exactly what is involved in an "IVF / PGD cycle." I think one of the hardest parts the first time is just the unknown. I wish I could have found a blog like this and been more prepared for what I was getting into. So if you happen to be reading this blog and have any questions I don't address, please don't hesitate to make a comment with your question!
My Path to InVitroland - Pt. 1
As a kid I thought I knew how it worked; you grew up, you got married and you simply decided how many kids you wanted to have and when you would have them....easy peasy! And that plan worked pretty good for awhile. I grew up, I got married, and after being married for around four years, my hubby and I decided to have a baby. I stopped taking my birth control pills, and four days later -- voila! I got pregnant! (I know exactly when it was, too, because at the time my hubby was working out of town and only came home on Wednesdays... :) )
My perfect little life plan was working just fine until some routine pregnancy blood work revealed that I was a carrier for the Cystic Fibrosis (CF) gene mutation F508. (Which, if I correctly understand what my genetic counselor told me, of the known 36 mutations, the F508 causes the worst form of this disease.) I was totally suprised to receive that phone call from a genetic counselor. Cystic Fibrosis? What in the world was that? My genetic counselor was very quick to tell me not to worry, it would only be a concern if my husband were also a carrier, because fortunately the CF mutation is a recessive gene. So we quickly got him in for a blood test. Well -- as fate would have it, my hubby is also a carrier of the same F508 mutation (also the worst one...hooray! If you are going to read this blog, I hope you can infer the sarcasm...). So what did that mean for the baby I was already carrying? That meant that he/she had a 25% chance of being completely unaffected, 50% chance of being a carrier (but healthy, like us) and 25% of being born with a disease that would most likely kill him/her before he\she reached the age of 7. And every child we conceived would face the same odds. I put that in bold, because that is how that news felt: a big, bold truth that was crushing my perfect life plan.
Our next step was to do amniocentesis, so we would know whether or not our baby would have this disease or not. (Many people sadly, do this so they can abort an affected fetus. For us, abortion was NEVER an option, we just wanted to know what we would be facing so we could prepare.) During the agonizing FOUR WEEKS (!!) it took them to get the results back to us, I did a ton of research to learn all I could about Cystic Fibrosis. It was then that I came across some information about a revolutionary breakthrough called Preimplantation Genetic Diagnosis, or PGD. I read that people were using PGD in conjunction with InVitro Fertilization (IVF) to conceive children that would not be affected by single-gene defects, such as CF. About that time we received news that our unborn daughter (a girl for sure...I was given a copy of her karotype clearly showing XX chromosomes!!) was also a carrier for the F508 CF mutation, but would be healthly just like us. With that happy news, I tucked all my CF/PGD information away in a file and focused on preparing to become a new mommy!
Fast forward a few years....our daughter, Delia, was a happy and healthly two-year-old, and I was starting to really want another child. I now knew that our family would never be large, but I NEVER wanted Delia to be an only child. But now that I was painfully aware of our carrier status for the F508 CF mutation and had knowledge of what having that awful disease would mean for a future child, there was no way this mommy was going to throw caution to the wind, hope for the best and just get pregnant. (In fact, I carried my birth control pills with me in my knapsack, and set my cell phone alarm to tell me to take one so I would take it at exactly the same time each day. And if for some reason I was even ten minutes late taking it, my hubby knew not to even think about having sex, because I was terrified of an accidental pregnancy.) So out came my IVF/PGD file, and I started doing what I do best -- internet research.
My perfect little life plan was working just fine until some routine pregnancy blood work revealed that I was a carrier for the Cystic Fibrosis (CF) gene mutation F508. (Which, if I correctly understand what my genetic counselor told me, of the known 36 mutations, the F508 causes the worst form of this disease.) I was totally suprised to receive that phone call from a genetic counselor. Cystic Fibrosis? What in the world was that? My genetic counselor was very quick to tell me not to worry, it would only be a concern if my husband were also a carrier, because fortunately the CF mutation is a recessive gene. So we quickly got him in for a blood test. Well -- as fate would have it, my hubby is also a carrier of the same F508 mutation (also the worst one...hooray! If you are going to read this blog, I hope you can infer the sarcasm...). So what did that mean for the baby I was already carrying? That meant that he/she had a 25% chance of being completely unaffected, 50% chance of being a carrier (but healthy, like us) and 25% of being born with a disease that would most likely kill him/her before he\she reached the age of 7. And every child we conceived would face the same odds. I put that in bold, because that is how that news felt: a big, bold truth that was crushing my perfect life plan.
Our next step was to do amniocentesis, so we would know whether or not our baby would have this disease or not. (Many people sadly, do this so they can abort an affected fetus. For us, abortion was NEVER an option, we just wanted to know what we would be facing so we could prepare.) During the agonizing FOUR WEEKS (!!) it took them to get the results back to us, I did a ton of research to learn all I could about Cystic Fibrosis. It was then that I came across some information about a revolutionary breakthrough called Preimplantation Genetic Diagnosis, or PGD. I read that people were using PGD in conjunction with InVitro Fertilization (IVF) to conceive children that would not be affected by single-gene defects, such as CF. About that time we received news that our unborn daughter (a girl for sure...I was given a copy of her karotype clearly showing XX chromosomes!!) was also a carrier for the F508 CF mutation, but would be healthly just like us. With that happy news, I tucked all my CF/PGD information away in a file and focused on preparing to become a new mommy!
Fast forward a few years....our daughter, Delia, was a happy and healthly two-year-old, and I was starting to really want another child. I now knew that our family would never be large, but I NEVER wanted Delia to be an only child. But now that I was painfully aware of our carrier status for the F508 CF mutation and had knowledge of what having that awful disease would mean for a future child, there was no way this mommy was going to throw caution to the wind, hope for the best and just get pregnant. (In fact, I carried my birth control pills with me in my knapsack, and set my cell phone alarm to tell me to take one so I would take it at exactly the same time each day. And if for some reason I was even ten minutes late taking it, my hubby knew not to even think about having sex, because I was terrified of an accidental pregnancy.) So out came my IVF/PGD file, and I started doing what I do best -- internet research.
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