8/28/2008

I am a Mom Wannabe

A Mom Wannabe

By Alison Kathleen Whitney

I want to be a Mom. But I can't. Instead, I am a Mom Wannabe.

I want to procreate. I want to conceive a child, naturally, with my husband, in the privacy of our home, in the spirit of love and passion, in the way God intended. But I can't.

I want to discover that my period is several days late. I want to buy a pregnancy test and pee on a stick. I want to see a + sign. I want to cry tears of joy for the news we'd discovered. But I can't. Instead, I cry tears of pain at random, for no reason and with no warning.

I want to experience morning sickness. I want my hormones to go haywire. I want the "pregnant glow". I want to have my husband talk to my belly. But I can't. Instead, I try not to look pregnant. I don't buy clearance clothes for next year, "just in case". I try to keep my emotions from going haywire. I dream that my husband talks to my belly.

I want to take prenatal vitamins. I want to eat for two. I want to schedule my first doctor's visit. I want to sit in the waiting room with other pregnant women and know that I am one of them. But I can't. Instead, I wonder if those pregnant women ever had problems conceiving. I think how cute they look as they waddle with their big bellies. I smile at babies that are not mine. I ache from loving someone I've never met.

I want to hear the doctor say "You're Pregnant. Your progress is right on schedule." But I can't. I want to surprise my parents with a new grandchild. I want to tell my friends and family our good news. I want my life to change overnight. I want to read "What to Expect When You're Expecting". But I can't. Instead, I have no news to tell. I realize my life hasn't changed in years. I read "When Empty Arms become a Heavy Burden".

I want to monitor the progress. I want to see ultrasounds. I want to hear the heartbeat. I want to watch our baby grow. I want to feel the kicks, but I can't. I want to decorate the nursery. I want to childproof our home. I want to shop for adorable, soft, tiny outfits. I want to shop at Gymboree. I want to save money for the baby's future. Instead, I imagine a crib in an empty room down the hall. I avoid baby stores in the mall. We spend our money on doctor's appointments, tests and
high-tech procedures. We spend our money on a dream. We are left with an empty bank account. We are left with empty arms.

I want to share the experience with my pregnant friends. I want to compare symptoms. I want to be the guest of honor at a baby shower. But I can't. Instead, I watch my friends get pregnant quickly. I watch their bellies grow, attend their showers, see their pictures and try to be a good friend. I watch their lives change and our friendships change in front of my eyes.

I want my belly to drop. I want my water to break. I want contractions. I want an epidural. I want my husband by my side and my family in the waiting room. I want the pushing. I want the pain. I want to hear the cry. But I can't. Instead, I feel a different pain. I hear my own cry. Yes, I even hear the cry of my husband which hurts more than I had ever imagined.

I want to hold our baby in my arms, with tears of joy streaming down our faces. I want to experience the miracle of birth, thinking "We did it", but knowing that God did it. But I can't. Instead, I hold my husband in my arms with tears of sorrow streaming down our faces and wondering what God's plan is for us and why we have to go through this.

I want to pray that one extra special blessing be added to my life. And I do. I pray my 1000th unanswered prayer to God and hope this time He answers. I pray for the miracle of life that only God can give. I pray that someday soon He will give it to us.

I want to be a mom, but I can't.

8/27/2008

The sting of infertility

I've received many heartfelt messages, and have been told many times that they wish there was something they could do for me. Most even told me that they just don't really understand what I'm going through, so they don't know what to say. And that's ok. But how can I describe the feeling of isolation and being "different" to people who cannot possibly know what that feels like? Infertility is one of the biggest challenges that life has thrown our way. It is hard to see beyond the immediate pain of infertility. Everywhere I turn, I'm faced with that fact. I would say about 99% of my friends and family have at least one child and/or are currently pregnant. How can I find a way to be happy for others without always focusing back on myself?

They are members of a club that I may not ever be able to join. They would talk for hours about their pregnancies, sharing morning sickness stories and talking about which obstetrician was best. This would launch them into stories of their first pregnancies and deliveries. I spent long blocks of time saying nothing because I had nothing to contribute to these conversations. Each time one of the babies kicked or moved for the first time, I was reminded that I may never get to experience that. Life had denied me a basic experience shared by almost every other woman on the planet.

I feel like I don't fit in anywhere. I'm in my mid-30's, and most of the people we know became parents in their mid-20's. My husband's childhood friends have children ranging in ages from 11 to 21. My friends are either single and not even thinking about children or married and have young children or are currently pregnant. This means that I am in a different stage of life than most of the people I knew, which made me feel like the "odd man out." Jerry and I were talking about this a few days ago, and it's hard to imaging that we could've had a 13 or 14 year old had infertility not been a word in our vocabulary.

Some of our friends are childless by choice. It must be nice to have a choice in childbearing. I've heard people refer to these couples as DINKs (Dual Income, No Kids). I did not want to be a DINK (although we're just single income now, so would that make us a SINK?). I've read about how DINKs were choosing not to have children; instead they lead very lavish lifestyles involving travel and acquiring nice things. That did not describe us at all.

So we felt like we did not fit in anywhere. One set of friends talked about their children all the time, and the other set talked about their travels. We knew nobody who was in our situation, and this makes us feel very lonely. We eventually stopped attending functions such as baby showers and the like. I do admit that I attended a baby shower earlier this year; however, I debated back and forth on whether or not I was going to attend - not because I have anything against her (on the contrary, I think the world of her) but because I was afraid that I might lose my composure and bawl my eyes out. Jerry and I were sad but really enjoyed shopping for my friend's baby shower. We were sad because the stuff we were getting were not for our baby but for another family's. And the joy came from looking at all the baby items and thinking that maybe one day people will be attending OUR baby shower.

The last few weeks, I've been having trouble sleeping and trouble with controlling my grief. After years and years of BFN after BFN after BFN, it doesn't get any easier. This last BFN was extremely hard - I felt more hurt and sadness than I ever thought possible. I am at wit's end on how I am going to get through this. With each new grief, we relive the past grief as well. I remember the fear I had when we were first diagnosed as infertile. I just assumed that we were a fertile couple, so I had no reason to fear infertility. But when the doctor diagnosed us as male factor infertility, I was in denial. I mean, I was only 25 and Jerry was 29. This had to be a mistake, I thought. But reality set in right after our first official BFN back in 1999. What a rude awakening that was. No one ever warned us that we'd ever feel the paralyzing sting of infertility. After 9 years I still feel the sting as if it was just yesterday. It wasn't until July 2006 that we started letting family and a select group of friends know.

Sometimes, all I need to feel "normal" again is to hear someone else say they're going through the same thing. It's not that I wish infertility on anyone. On the contrary, it's just that I need someone, particularly someone who really understands, to tell me that it's normal to feel this way...That it's normal to feel anger, to feel sad, to feel extremely bitter...all at the same time. I hardly recognize myself anymore. Infertility has forever changed me. Infertility took my identity and gave me a new one.

Anyway...I've joined a couple of infertility boards and tried to be active there. It's comforting to talk with women who've been there and done that and are still battling infertility. Yes, it's a battle, and what an uphill battle it is. Even though I've never met these women, I feel a strong connection with them. And that helps with the loneliness I feel.

8/19/2008

Genetics 101

Last Friday, our geneticist from CCRM called. Apparently, our case is the talk of the clinic. Our geneticist had a meeting with the other CCRM geneticist, the molecular biologist, and the doctor to discuss our very unique situation.

At our first meeting with the genetic counselor back in April, because of the Robertsonian Translocation, she told us that the best chance is doing Pre-implantion Genetic Screening (PGS). There are three types of PGS. The first type of PGS is what's called Fluorescent In-Situ Hybridization (FISH). It tests only 9 pairs of chromosomes. The biopsy is done when the embryo is 3 days old, and it takes one day to get the results so a fresh embryo transfer is possible. The second type of PGS is what's called Comparative Genomic Hybridization (CGH). CGH tests all 23 pairs of chromosomes. The biopsy is done when the embryo is 5 days old. It takes 6 weeks to get the results, so the embryos would have to be frozen and then go back and do a FET cycle. The third type of PGS is called Microarray. Its technology is parallel to CGH and would have to do a FET cycle.

Back in April, the genetic counselor said that our option (because of the type of translocation) of PGS is to do the FISH testing (tests only 9 pairs of chromosomes). CGH wasn't even an option for us, even though it tests all 23 pairs of chromosomes, the technology wasn't that advanced yet to detect translocations.

So fast forward to last Friday when she called us. She said that we can now do CGH testing on the embryos whereas back in April our only option is to do FISH. She said that CGH can now test for translocations. That means that all 23 pairs of chromosomes, instead of just 9 pairs that we did back in July, can now be tested! Wow! She said that when Jerry's chromosomes are pairing up with my chromosomes and because Jerry has the translocation of the 13 and 15 chromosomes, the 13/15 pairing can sometimes disrupt the pairing in other chromosomes (even they're normal to begin with). So even though we know that there's a problem with 13/15, the resulting embryo might have more chromosome issues due to the balanced translocation pairing. Anyway, CGH technology has only been around for about one year now, and the success rate has been 80%. With the FISH testing, the success rate has been 50%.

The biopsy would be done on 5 day old embryos. There is a 1% risk of damage to the embryo. The CGH genetic test (as well as FISH) is about 90% accurate.

So if we choose to do the CGH testing on the embryos, it will test all of the embryo's chromosomes, not just the 9 pairs that were tested back in our July cycle. That might be one explanation that we weren't successful last July.

CCRM is one of the clinics that participates with a finance program called 'shared risk.' If we enroll in the 'shared risk' plan, we would pay a little bit more for IVF but that would only be a one time fee (about $10,000 more). But it would cover 3IVF cycles and 3 FET cycles. And by the end of that and we don't have a take home baby, we would be refunded 70% of the money. We would also get the 70% refund if at anytime we choose to stop doing IVFs or FETs. Sounds too good to be true, right? Well, here comes the kicker. We are only eligible for the 'shared risk' plan if we're not doing CGH. In other words, if we choose to do FISH we could sign up for the 'shared risk'. But if we choose to do CGH, we couldn't sign up for 'shared risk'. If not participating in the 'shared risk' plan, then we would have to pay for each IVF cycle.

Now comes the big decision. Do we go ahead and do CGH (with a 80% success rate) or stick with FISH (with a 50% success rate)? If we do CGH, it's all out-of-pocket for each cycle. If we do FISH, we could sign up for 'shared risk' and not worry about having to pay for subsequent cycles. What do we do?

8/14/2008

FAQs

So it was 17 days ago that we received our official BFN. (Sometimes, it seems like only yesterday.) I've had lots of friends and family ask how we're holding up and what we plan on doing next. So I've decided to post some of the questions, and I'll answer them here.

1.
Q: How are you feeling?
A: Sad, angry, bitter, jealous, disappointed, mourning, lost, lonely, hopeless, despair, scared, depressed, and numb ALL AT THE SAME TIME! Yep, that about sums it up.

2.
Q: How is Jerry?
A: I'm sure he's feeling all those feelings, too. And he's blaming himself.

3.
Q: Are you going to do another IVF cycle?
A: I don't know what we're going to do next. I still can't compose myself enough to even think straight. However, I know that we still have 3 frozen embryos..which we infertiles call 'totsicles' or 'snowbabies'... (well, 2 really because 1 embryo's genetics is questionable). One of the normal embryos has completely hatched, and the embryologist doesn't give it much chance of survival. Think about it - that little embryo has been through a lot already: one biopsy for genetic testing, frozen, transferred from Pensacola to Denver in a nitrogen transport container, thawed, biopsied again for repeat genetic testing, and frozen again and then will be thawed again. The doctor said that the best course of action is to do another full IVF cycle with genetic testing and then freezing all the normal embryos. Then let my body get rid of the hormones and then get gently hormoned up again for a FET cycle. So the option is there for us to do another IVF cycle plus transferring the frozen embryos.

4.
Q: If I were you, I'd just go back for the two frozen embryos and not do another IVF cycle.
A: Yeah, thank you for your advice but you're not me and you already have kids.

5.
Q: What will the doctor do differently should you want to do another IVF cycle?
A: The doctor told me that he'd keep me on the same protocol, as I responded really well. So that means, taking BCP for 21 days. Then take daily Follistim shots in the morning and take daily Menopur shots in the evening. Go to the clinic every morning to have an internal ultrasound and blood work done. When my follicles get to the correct size, I would then start taking daily Cetrotide shots in the afternoon in addition to the Follistim and Menopur shots. So that's 3 shots a day. Oh and all the while, take the Dexamethasone pills before bed every night. And when my follicles have "ripened" I go in for egg retrieval surgery. The day of egg retrieval, I start the Medrol pills once a day, antibiotics twice a day, and Prometrium vaginal suppositories three times a day, Estrace pill once a day, wear 4 Vivelle patches and change them out every other day, baby aspirin once a day, and continue taking the meds until the pregnancy test.

6.
Q: I've read or seen a show of someone who had 5 or 6 babies. Maybe you could try that?
A: I know you're trying to help, but our situation is unique. Ours is a not only male factor (idiopathic oogliosperma) but it's also complicated by a genetic issue. And that woman you read about probably did Clomid (or did injectibles) and didn't have to do IVF. Usually if a woman has that many babies, she probably did meds and/or insemination (IUI). And as a quick note, stories like that don't make me feel better. It just makes me feel more jealous.

7.
Q: Everything was "perfect" with this IVF cycle and it didn't work. Have you thought about adopting? Or why don't you just adopt?
A: If I had a penny for when everytime someone mentions adoption to me, I'd be a gazillionaire...Adoption is not a cure for infertility. I repeat. Adoption is not a cure for infertility. I still produce quality eggs. I have a normal uterus. My hormones are normal. And Jerry still has sperm. As long there is IVF and PGS (pre-implantation screening), there is still that. So my answer is no, adoption is not even on our radar.

There have been a couple people who've suggested adoption to us, more than once. While I know they mean well, it really hurts. Like I said before, adoption is not a cure for infertility. Adoption will not make my pain go away. Adoption is not a replacement for what we can't do naturally. As I still have all my female parts and several doctors report that they're still working properly, I just can't give up trying. My doctor doesn't think that we're a lost cause, and he still has high hopes for us to have our own biological child. And it hurts that you've already given up on us for that. Besides, I will always want/need to experience being pregnant - including morning sickness, stretch marks, cravings, baby's kicking, everything...and even childbirth (as crazy as that may sound).

I have nothing against adoption. I'm just saying that it's not for us.

[And speaking of adoption, it drives me bonkers to hear people say something about adopted children. For instance, I've heard several people ask someone if their child was natural or adopted. Last I checked, all children are natural whether biological or by adoption. Anyway...]

8.
Q:Is there anything I can do? I just don't know what to say.
A: It's ok. There is probably nothing you could say to make it sting any less. But I appreciate you.

There were many more comments, especially about God; but I will leave those off the blog. Maybe I'll include them in another blog, but right now my emotionals are still raw.

8/07/2008

My reality

This morning, I had to drive my sister to the airport. She's visiting a couple of her friends in NYC. Besides seeing her friends, she's been wanting to go to the Little Mermaid Broadway show.

After dropping my sister off at the airport, I spent the rest of the day with my mom. She had a few errands to run, so I went with her. My mom's fridge quit on her last night. She's only had that fridge for about a year and a half. It's a GE by the way. I guess they don't make them like they used to. After what seemed like hours and hours, she finally found one that she liked. It's a LG French door fridge. It's basically a side-by-side on the top and the freezer drawer on the bottom. She bought it at Best Buy so that Jerry could get Reward points.

While shopping around town today, I've noticed a lot of pregnant women. Seriously, is everyone pregnant but me? It's like everywhere I turned, there were women with their big pregnant bellies. I was so jealous!! I couldn't help but stare at their bellies, wondering if they realize just how blessed they are. I saw a pregnant lady come in the store pushing a stroller. I couldn't take my eyes off her belly. I bet she was there to get something for the nursery. While my mind was wondering and making up stories of why she's there, I was brought back to reality...my reality of our childless existence.

Then I thought of one of the bedrooms in our house. The front room to be exact. It had always been reserved as the nursery room. We've been in our house for 12 years now, and that room is still empty. We've decorated the rest of our house - but that room is kept immaculate so that one day it could be the nursery. Every time I go in that room, my heart just aches. I can only stay there for a few minutes before I start crying.

Yep, that's my reality.

8/06/2008

Life goes on...

I've been meaning to blog for several days now, but never got the drive to actually write down what's been going on. But after talking with my very dear friend today (bless her heart, she cried on the phone all upset about our BFN), I decided to let everyone know what's going on. It may take me a couple of posts to catch ya'll up, but here goes...

The day after the BFN, we received a call from the embryologist. He seemed shocked that we weren't pregnant. He went over the embryo quality with Jerry (I wasn't in the talking mood, as I was afraid that I would start crying again) over the phone. He said that the two embryos that were transferred were two of the higest qualities that they grade. One embryo was grade 5AA, and the other was grade 4AA. The number in front is the grade of the embryo's shell. The 5AA embryo was half-way hatched, meaning that the embryo had already begun to come out of the shell. The 4AA embryo hasn't come out of the shell yet. Assisted hatching was done to poke a hole through the shell so a biopsy (for genetic testing) could be done. The embryologist even told us that he put embryo glue (made of hyaluronan) to promote embryo implantation. The embryo naturally secretes hyaluronan, but he said that with IVF patients studies have shown that adding embryo glue increases the chance of implantation.

The doctor called a couple of days after the BFN. He sounded really sad for us. He apologized that he didn't get us pregnant, and he said that he couldn't really offer us an explanation as to why the BFN. He said that he and his staff looked over my chart and everything seemed "perfect" - my endometrium, my hormones, even the embryos were excellent... everything was optimal. He told me that the success rate is lower when using Lupron as the trigger instead of the hCG. He knew that I developed severe OHSS with my 1st IVF in Pensacola, and he didn't want to have the possiblility of that happening again. So he suggested doing another IVF, using the same protocol (Antagon cycle with the Lupron trigger). And then do PGS (pre-implantation genetic screening) and freeze all the normals. Then let my body have a normal cycle and do a medicated FET (frozen embryo transfer) cycle. The FET requires taking BCP (birth control pills), Lupron shots, Estrace pills, Vivelle patches, Prometrium vaginal suppositories, and Medrol pills. Believe it or not, going through a FET is much easier on the body than doing a whole IVF cycle. Anyway... the doctor said that the FET might be better for us, as it involves less hormones. He also said that the success rates of PGS'ed vitrified embryos is about 75%.

The doctor said that we could start this September, with my September period. So right now, we're deciding on whether or not we want to pursue another IVF cycle or go ahead with the FET of the two frozen embryos we already have. We have mixed emotions. On one hand, even though it was devastating about the BFN, I still have a glimmer of hope that CCRM can get us pregnant. (I have no regrets whatsoever about going to CCRM. I just wished that I had gone to them first, instead of going to our local fertility clinic.) On the other hand, I don't know if I can take another BFN. Unless you've been through it, it's hard to describe all the emotions that come with cycling alone much less getting the BFN news.