The Letter

I finished and emailed the letter to my family about what Hubby and I have been going through.  It is super long, so you can choose to read it, or not.  The choice is yours.  It entails our entire TTC journey, which started well before I started this blog.  I know I didn't HAVE to share all this with my family.  The fact is, though, that I love my family, and they love me.  Because I had shared with the Aunts and Uncles that we were undergoing fertility treatments and because they care about me, they were wondering where we were at in our journey.  They were respectful of our privacy and never asked.  It was time for me to tell them.  I didn't include EVERYTHING, as this letter was long enough as it is.  I also didn't share with them that we have two little embryos waiting to be defrosted.  They might not even survive the thaw, so I figured that information could come later.  I have shortened/altered the names in the letter.  I don't call my husband Hubby in real life or my sister Sis.  So anyway, here's the letter.

Dear Family,

I figure it’s time that I finally share my story of infertility with all of you. Hubby and I have been married for 15 years, and for the past 13+ years we have been trying to have a baby. At first, we just ditched the birth control. When nothing happened we pursued finding out why. I found out I had a cyst on my ovary and a slight case of endometriosis. I had a surgery to have the cyst removed and on we went with trying. We spent a few YEARS of me taking my temperature, documenting it, and having timed sex. We later found out that Hubby’s swimmers were not very good quality and we were told that “it is not IMPOSSIBLE for you to get pregnant, but it is highly UNLIKELY.” We continued taking supplements and things that were supposed to help increase fertility. Beyond the first two years of our marriage, we have never done anything to prevent pregnancy. We could not afford to do any fancy treatments like IUI (artificial insemination) or IVF (in-vitro). We prayed. A lot.

We went on with our lives and continued to try since it was not IMPOSSIBLE, and we prayed a lot more. I have been blessed to have such a good relationship with my sister, that her and S invited me to be a part of both Steven and Nathanial’s pregnancies and births. They invited me to go to all of their appointments and I was incredibly blessed to be there when both boys were born. Sis and S knew that this might be my ONLY opportunity to witness the miracle of a birth and gave me that chance. Besides the fact that I am her sister and she wanted me there. They also needed a photographer! Haha!

Last year, October 18th, I turned 37 years old. Three days later I witnessed Nathanial being born. That was a really hard day for me. It was hard for me to witness the happiness between Sis and S with the new addition to their family. It was hard for me to hold this new baby and realize that I would most likely never get the chance to hold my own.

That was a turning point for me. Hubby and I talked, and we came to the conclusion that we did not want to end up in our late 40’s/50’s and grow old without doing EVERYTHING we possibly could to have a baby. We didn’t want to look back and say “I wish we…” We were finally in a place that we could afford to take that next step. One that we really, really, really wish that we had taken sooner.

So for the past 15 months, we have spent a butt load of money and taken on a tremendous amount of debt to finance just trying to have a baby. Literally, we could have purchased a small house for what we have spent, because unfortunately, our insurance covers NO aspect of infertility treatment. Did you know some states mandate insurance coverage? Not the state of Oregon. Nope.

In November 2011, we had our first consultation with our Reproductive Dr. at OHSU. I also had 2 cancer scares at the end of that year. I had an annual exam just to make sure I was in the all clear for this process, and my regular Dr. thought I had a problem with my cervix and had me go get it checked out because he was concerned. This was the first cancer scare. Turned out my cervix just sits a little funny. No big deal except for the worry I had for a few days. Then came my first ultrasound at OHSU. I have a large mass on my right ovary that needed to get checked out. Off to a different doctor at OHSU because now the concern was I had ovarian cancer. Nope. At least not yet. I was free to pursue fertility treatments, but with continued monitoring of that mass.

We first did an IUI, because that is the cheapest route to try to get pregnant, but it was also unlikely to work. In fact, as I was on the table with my feet in the stirrups, prepared for insemination, the Dr. said “this probably isn’t going to work, but…it only takes one so we will see.” It didn’t work. No surprise.
As we were about to undergo our first IVF treatment, I shared with all the Aunts and Uncles what we were doing. I asked everyone to keep it quite, because it’s very hard to have everyone ask how it’s going. Are you pregnant? Did it work? I didn’t want that, so we told very few people. I mean, most NORMAL people don’t announce every time they have sex, I didn’t want to announce when our sperm and egg met in a petri dish. It’s not that I am shy about this process, or embarrassed. I am more than happy to answer any questions you have. I will talk about it. I just didn’t want to talk about it while we were going through the whole process. It’s emotional enough as it is.

So here’s how the process works and what we have been through:

IVF #1 (February 2012): 

On day 3 of my cycle, I had to start birth control pills (weird, right?). The pill is to suppress all the egg follicles because they all need to stay small. You can’t have one or more jump ahead and start growing (ovulation). I took the pill for about 14 days, and then I started the stimulation drugs. The drugs cost about $6000. That’s the meds alone, not counting all the doctor appointments and the actual procedure costs. I was on the maximum dosage of hormones. This included one injection in the morning and 3 injections in the evening for about 2 weeks. I gave myself these shots, which all go in the stomach.

Most of you know that I have a strong aversion to needles. Well, I have had to get over that with the number of injections I’ve given myself and the amount of blood draws I have had done. Sometimes it took me awhile to build up the nerve to stab myself in the gut. However, sometimes I just had to get the damn thing over with because I had to give it to myself in the closet at work between my client appointments which were back to back. Some of the medicines burned going in, some weren’t that bad. Almost every night I would need to lay with a cold wash cloth over my stomach because I would break out in a rash or hives due to a reaction to the medicine. My stomach was black and blue with bruises. I did not have crazy ups and downs or cry a lot because of the hormones, although Hubby would maybe tell you a different story. I did cry several times just because I had to give myself the shots and they HURT.

Hubby only watched me do the injections one night. He didn’t care to again because it wasn’t easy. I HAD to do them myself, because I’m a control freak. One night, I was at Grandma and Grandpa’s house and they, in addition to my mom and Aunt D got to watch me give myself the injections. They were curious, and it was kind of nice to share at least a part of what I was going through.

During this two weeks, I was driving up to Portland to OHSU every 3 days to begin with, and then every single day the second week to monitor the follicle growth and make sure they were all growing at the same rate. This was also so they could adjust the dosage of my meds if needed as we went through the process.

The egg retrieval is considered a surgery. I had an IV and anestegia. I was not put completely asleep, but I was pretty unaware of what was going on. They use a long catheter with a needle on the end of it, which they put in and use to suck out the eggs. Even after being on the maximum dose of hormones, I was only able to produce 5 eggs. Hubby gave his sample that morning. The embryologists then introduced the sperm to the egg in a petri dish – one sperm to one egg. I pretty much spent the rest of the day sleeping, except for the 2.5 hours that I watched Hubby coach my softball team for me. Only 3 of the eggs fertilized and became embryos. All 3 embryos were then transferred (put inside me) 3 days later. Two weeks after that, on a Friday, I went in for a beta hcg test. I was not thinking I was pregnant, because I started bleeding that morning. However, I got a call that afternoon from the nurse congratulating me because I was pregnant! The following Monday, I went in for my second beta test, again not really believing the news. I was right. That afternoon, while I was at softball practice, I took the call that informed me that I had a chemical pregnancy.

IVF #2 (May 2012):
 
We started the same process over again. Another $6000 on meds alone. Only this time, my ovaries did not respond. I only got one mature follicle, so the IVF was cancelled and turned into an IUI in the hopes that we could at least take advantage of the one good egg, even though the chances were so, so slim. No pregnancy.

I have what is called diminished ovarian reserve. Basically, that means that I have hardly any egg supply left and will have early menopause. Also, the mass on the right ovary doesn’t leave much room for eggs to grow. Now we had to figure out what we wanted to do next. The package that we financed, was for 3 IVF’s. However, we only did one. Also, the medicine costs were not included in the financing, so each time we tried, it was another $6000 out of pocket. If it wasn’t going to work, it really seemed like a waste of money to keep trying.

Also note, that all of this took place at the time when Grandpa was really sick. Our 2nd IVF failure was only a few short weeks before he passed away. This was an extremely tough time for me.

We spent the summer debating what to do next. Like I said, it seemed pretty pointless to use my eggs, so we talked about using an egg donor. I am very blessed to have a sister that would do anything for me. She had already told me months ahead that she would be a surrogate if needed. However, there wasn’t anything wrong with my uterus, indicating that I couldn’t carry a pregnancy. I just happen to have bad eggs. Using Sis as an egg donor would be a lot less invasive to her body than if she were to carry a baby for us.

We debated for the next 2 months whether we wanted to use Sis as a known egg donor, or use an anonymous egg donor. There were lots of concerns either way, but it finally boiled down to the fact that if we used Sis, the baby would at least be a PART of me and have a chance to LOOK like me. It was the closest we were going to get to having a little Amber and Hubby. We would always know our child's genetic history and it would at least share some of the same DNA with me.


We spent a lot of time talking about every aspect and making sure we (S, Sis, Hubby, and I) would be okay with whatever outcome came about. It was required that Hubby and I meet with an infertility counselor, and it was also required of S and Sis. She also had to pass a psych evaluation, which she did.  Wahoo!  She had to have a lot of blood tests and an ultrasound to make sure she would be a viable egg donor, and she was. I also had to go through a mock cycle of estrogen hormone pills to make sure when the time came, we used the right dosage so I would have a nice thick lining for the embryos to implant in.

Then, I had to start birth control pills to suppress my eggs so they wouldn’t grow and I stayed on the bcp’s until Sis started her cycle. We had to match our cycles so that when she was ready to give her eggs, my body would be ready to receive the embryos.

She had to do the same 2 weeks of bcp’s for egg suppression, and through the same injections I had previously done, giving them to herself twice/day for 2 weeks so that she would grow as many follicles as
possible. While she was doing this, I was giving myself Lupron injections, which basically put my body in a state of menopause so I didn’t ovulate. I had the side effects of menopause and everything!  I was also taking estrogen pills to build my uterine lining up in preparation for pregnancy.

Then, two days before her egg retrieval, I had to start Progesterone in Oil (PIO) injections in the butt/hip with a big ASS needle. Literally, it is an ASS needle. And it is big. Here is a picture:

The little needle is the one that is used for all the stomach injections. The big Ass needle is the one that had to be stabbed into my butt every night for 3 months!!!!!!

I would get the medicine ready each night by drawing the PIO up into the syringe, and Hubby gave me the shot each night. This caused my hips to be sore and difficult to lay on at night because of the bruising due to  repeated injections Every. Single. Night. Did I mention this was for 3 months? Yeah. At the Family Christmas, we had to sneak off to the bathroom to do the injection. In January when we went to Arizona, we had to find a family bathroom at the airport to do the injection.  It’s been….interesting.

So once again, egg met sperm in a petri dish and 3 days later was the embryo transfer. Another 2 week wait, and we found out we were pregnant!  This was just before Christmas.

It was very difficult for us to keep quiet about this, as we were so excited, but scared out of our minds. It was all I could do to bite my tongue the night that C and J announced they were expecting and due in August. We were also due in August!!! But we had not even had our ultrasound yet, so we didn’t know how viable our pregnancy was going to be. We were keeping things to ourselves until we felt comfortable that this baby was going to stick around. The only ones that knew were Sis and S because she kind of played a major role.

That was a difficult night for me in a lot of different ways. I wanted so badly to say “oh by the way, there will be another August baby as well.” But then we would be stealing C and J’s thunder from their announcement. I felt a little deflated because the excitement of our own pregnancy announcement would be shared. Selfish, I know, but it has been SO long in the coming. I was happy for them, don’t get me wrong, I really was. But I’d be lying if I didn’t say I was a little jealous. And then I was afraid, because what would happen if one of us lost the baby while the other one would be born in August. Oh my God. How awful that would be. And then C and J did miscarry and I felt so bad. I hurt so much for them.

So we went to our first ultrasound on December 31st, excited and scared. We saw the fetus, but did not get to see the heartbeat. We were at 6 weeks, 3 days, but the baby was measuring 5 days behind. The doctor was not worried because the embryo might have just implanted late. No big deal. Come back in a week. She might not have been worried, but we were.

We go back the following week and we see and hear the heartbeat! But it is only at 108 and it should be in the 120’s. It did grow a full week in the week that had passed, so that was good. Come back in another week to make sure the growth is consistant and to check on the heartbeat. Another week of worry.

3rd ultrasound – Hubby couldn’t get the time off work this time, so I went by myself. Everything looked great!  It had actually grown 8 days worth in the last 7 days, so the growth was on target. The embryo just implanted late. The heartbeat was 153 and beautiful! My RE told me that she felt comfortable at that point to graduate me to my regular ob/gyn. I said that was a little scary so she offered one more ultrasound. Great!   I would LOVE another opportunity to see my baby because I knew I was being spoiled with these once/week appointments so early in pregnancy.

I went back a week and a half later for my just for fun appointment to see the baby. Hubby again couldn’t take the time off work. We had to pay for all of this somehow!! It was at this time that we discovered that there was no heartbeat. Our baby was dead.

I cried sobbed when I left, but then had to suck it up because of course, I had a softball open batting cage that I had to be at. I had Dad’s there waiting for me to work on the field. Then, I had to wait for Hubby to get home from work so I could tell him. There was no way I was going to give him that news over the phone.

That was on a Wednesday. The following Monday I had a D & C so they could remove and clear everything out. That was two weeks ago. We chose to have chromosomal testing done to determine the cause of the miscarry. Turns out, our baby had Trisomy 18 which is an extra 18th chromosome. The abnormal chromosome came from the egg.

As sad as I am to say it, ultimately I am glad that nature took it’s course the way it did. Of the Trisomy 18 babies that make it to birth, 50% of them are stillborn. Of those that survive birth, there is a less than 10% chance that they make it to their 1st birthday. We would have had a very sick baby. Most all Trisomy 18 babies have heart defects, kidney problems, and can’t eat on their own, in addition to a number of other health complications. They said because of Sis’s age being only 32, and the fact that she has had 3 healthy babies already, it was about a 1% chance of this happening. Knowing that Sis and S were planning to have another baby, I asked if this was something that they needed to be concerned about for future pregnancies. There is no greater than a 1% chance of it happening again. We just happened to get the bad egg. It seems really unfair that we got to be the statistic. But nobody ever said life was fair.

Here’s the real kicker: last weekend, Sis let me know that she is pregnant. She is due in September, one month after my baby would have been born. Which means that she donated her eggs one month,
and got pregnant the very next month herself! It wasn’t a surprise since it was the plan for them to get pregnant soon. We just didn’t think it was going to be quite THAT soon. Sis and S weren’t expecting it to happen so quickly either.

This has been almost as emotionally hard on Sis as it has been on us. She found out she was pregnant the day after our awesome 3rd ultrasound appointment when we had such good growth and a strong heartbeat. She chose not to say anything right away because she wanted to give Hubby and I time to give our own pregnancy announcement and enjoy the experience first. Then we had a miscarriage and she absolutely did not want to tell us then. There is no blame though. It’s just our luck. It’s not fair that Hubby and I can’t have kids, but that is just the way it is. It’s also not fair that some of the joy has been sucked away from Sis and S in a time that they should be able to celebrate and be happy about this last baby they have always planned on having.

However, we are all moving on. I will attend many of the pregnancy appointments along the way and I will be there to witness another birth of a niece or nephew. It will hurt and it will be bittersweet, but I wouldn’t have it any other way. I am blessed with a sister that I KNOW will do anything for me, and I am blessed that her and S let me be such a big part of their kids lives. While I am sad for myself and Hubby, I am happy for S and Sis.

Just like I will be happy for each of you and any future baby announcements that you make. I will probably cry a little bit inside, but only for myself and what I will never have. I will be happy for you and I hold no resentments. All I ask is that you let Hubby and I love on your babies when we can. We have a lot of love to give, and will take any baby snuggle time we can get.

Thank you for your love and support. I love my family (all of you!) so much!!

Amber 

Of course, after sending this out, I thought of other things I should have said.  I typed and deleted things multiple times, especially the part when talking about my cousin's miscarriage.  I tried to be sensitive toward them, but still express how I felt when they announced their pregnancy.

I'm just glad to finally have all of this out in the open.