Not Your Average Miscarriage

The last few days have been pretty rough.

By last Thursday I STILL hadn’t had a miscarriage. Back on March 6 I was told I would start a period within 3-5 days…but then when that didn’t happen one of my nurses told me that it was possible for it to take 2-3 weeks. But by about day 9 I was still having some cramps and off and on again pain on the lower right side and my breasts still hurt. With an HCG level of only 171 on March 6 I thought for sure it would have come by then. I decided to take matters into my own hands and asked if I could come in for a blood test.

On Friday morning I went in around 9am, got my blood drawn and then went to the gym. I waited and waited til about 2pm for the call from the nurse. FINALLY I got the dreaded words…”your hcg has gone up to 1406 and we are worried about an ectopic pregnancy”. An ectopic pregnancy is one where the embryo is growing outside of the uterus so it could be in a fallopian tube or an ovary and with that since tissue is growing and those structures are so small something could rupture and the woman can have internal bleeding and will need surgery.

At that point since it was Friday afternoon I was being told that I couldn’t come in til Monday or Tuesday, which I thought was ridiculous with something like this. I’ve had ultrasounds and blood draws on the weekend before; sure, they can’t do everything with the weekend crew but it seemed like with something so serious they should get me in. But then my Dr. called me a little after 3pm and said she wanted to see me or get me into the hospital across the way that afternoon. Then she called and said just to come in to her office and they would do an ultrasound before she left and if they saw anything horrible they would then send me to the hospital. Meanwhile, I’m calling my husband with every update and we are both freaking out a bit.

I got to the Dr. office a little after 4 where my husband was waiting for me. Immediately they pulled me into an examination room and we did an ultrasound. They looked all over for what felt like 10-15 minutes and couldn’t find any sign of the embryo. Then I did blood work to check estrogen/progesterone/etc. Those levels all came back normal. We went home not really feeling all that confident about what was coming next or what to do and decided to get out o the house for the night since there was really nothing we could do at this point. One other thing I should say at this point is my husband had to leave on Sunday morning for a work trip to WA D.C. and the Dr. told him it was okay to leave as long as I had people staying with me and some support.

My next appointment was on Sunday at 8:30am. On the weekends at my fertility clinic there is a woman who apparently is amazing with the ultrasound wand. She looked around for 5-10 minutes and didn’t find the embryo itself but did find a small pseudo sac about the size of 5 weeks, which is about when my hcg levels dropped. Because your body thinks its pregnant this one layer sac can form but if it’s ectopic there can still be other tissue forming somewhere else—Still no sign of this other tissue though. We did my blood work and then I went home and went out for coffee with friends. Meanwhile my husband left for the airport. The decision from my Dr. was she would call me with my results in a little while: if the numbers went down we would follow the numbers back to 0 and it should discard itself; if the numbers went up we would do a D&C or I would take a medication to get rid of the pregnancy. The phone call came while I was at coffee: The numbers went up from 1406 to 2200. …When my Dr. called and said these words it almost felt like I was out of body and watching myself on the street corner taking this call and just listening to my options. Option 1: Have a D&C—take out the sac in the uterus and hope that nothing else is growing. Then come back the day after the procedure and have blood work taken. If the numbers go up we know it is ectopic and will still have to take medication; if the numbers go down then we continue blood work every 2-3 days until the numbers are down to 0. Option 2: Take methotrexate which is a pretty toxic drug and used for chemo. It would kill any other tissue that is forming but also takes 2-3 months to get out of your system, hence, it would take longer to be able to try again with our remaining embryo.

We chose to do option #1 yesterday. My husband was out of town so I had my step mother-in-law take me in. When she picked me up I was a little emotional but I was doing okay. She got me to the office at 9am; the surgery was at 10am. I listened to my options again, I signed consent forms, had my vitals taken, and then got into the gown and funny blue hat and footies they make you wear in surgery. I walked into the surgery room and got on the table, put my feet in the stirrups. They took some blood work from my hand and put the catheter in there…my Dr. came and held my other hand while that was being done. Then they put the sedation mask on my face and I fell asleep. Sedation is a wonderful thing—one second you are being told they will take good care of you and you are talking about some random thing and the next thing you know you are waking up in a recovery room. I felt like 2 hours had gone by…nope, only 20 minutes!  They brought me apple juice and animal crackers post surgery since I hadn’t eaten anything that morning. I just remember feeling a bit woozy and had a bit of cramping but nothing major. The nurse took me to the bathroom while I still had an IV and then my step mom-in-law came in and visited with me for a bit and finally I was ready to get dressed and go home. Once home I got in my PJs, MIL went to the store and got me a few groceries and brought me tulips (my favorite) and made me lunch. I was really lucky to have her yesterday. Then she left around 1pm and I basically sat on the couch the rest of the day. I had a friend stay the night and watched movies, ordered pizza and made yummy cookies and now this morning I am about to go see if the hcg levels go up or down. I should know more this afternoon.

-H

UPDATE: Levels are down to 767 so this is a good sign and I don’t have to do the toxic meds. I go back Friday for a follow up with our doctor that we already had scheduled and then next Tuesday for another blood test to make sure levels are going down still. Phew! It looks like even egg donor eggs aren’t always perfect.

A Little More Hopeful

Today I got up around 8:45am and my phone rang about 20 minutes later. When my Dr. office calls it says “UNKNOWN” so I always know its them. I answered it expecting to be talking to the nurse but it was Dr. Lamb, who has been my infertility physician since last June. She was calling to check up on me and make sure I had good support through all this and just make sure I’m doing okay. She had no real words of wisdom for why any of this happened and she is sad for us and was very hopeful when our numbers were so good the first blood test last week. There’s no way to know why this happened, it just did and now we move on and try again. She said it is okay for us to take a month off and feel things out but there is a chance that we could just roll right into another cycle right away. Once my period starts I will go in and we will do a blood test and ultrasound and see where my hCG levels are and if there is any scar tissue from this miscarriage. If everything looks okay I think we will probably just start follistim again and roll with the punches! If not we will probably have to wait til June because we have a trip to Europe coming up early May (to celebrate our two year wedding anniversary coming up!) and I would most likely need to be around for tests, etc. at that time. Part of me wants to continue on with this right away and part of me wants to wait because wouldn’t it be nice to be able to eat brie and drink wine in Paris? It could also be a nice celebration if we get preggo though. I guess I’m game either way.

I also called Premera today because our healthcare starts over April 1 and there is a new plan that we can choose to participate in. I found out they offer 15k lifetime in infertility benefits which is great because our current plan offers 10k lifetime and we have almost used that up with all the months of trying to get my lining thick. There will be more out of pocket costs with this new plan but its so wonderful that we can start over with coverage, plus now we seem to know how to thicken my lining so it shouldn’t (knock on wood) take so long next time.

We’ve started having discussions on what to do next if this next transfer doesn’t work but really I think we should be continuing with positive thoughts that the next one WILL work and when the time comes, if we decide to have more children, when we decide to have more, then we will figure out what to do then. I think we are a little discouraged about using the same clinic but there are ups and downs everywhere you go and I really like the care I’ve been getting so we’ll just have to see what happens. To be continued…

-H

A Long Overdue Update

I have not updated in a LONG time. Partly I think because I have been so involved in trying to get pregnant, and partly because I have been feeling guilty and a little ashamed that we even have to go through what we go through.

To sum up the past few months….intimidating, sad, long, hard, hopeful, all time consuming, draining – mentally and physically. Since November it took us another 3 months to get my lining to thicken up. In December we did the same protocol as November but without the lupron shots. Apparently my ovaries were supposed to still be “quiet”, not producing my own eggs at that time. We started off with estrace (estrogen pills) again but they caused some fluid in my uterus (same as in November) almost immediately. I was also still doing Vivelle patches. 2-4 every day. Then I got the pleasure of injecting myself with estradiol in my hip/butt area every 3 days. I just called this practice for the progesterone injections that come with IVF/FET (frozen embryo transfer). Turned out my lining still didn’t get thick enough by the time it was supposed to be, in fact it was thinner at just 6.5mm in December.

Move on to January when we did a natural cycle. We decided my body doesn’t like being manipulated by the drugs—fake estrogen just wasn’t doing it for me. Go figure. I had mentioned to my doc that I read that follistim works for some women on the balanced translocation group forum I’m on so by day 4 or 5 of my cycle I started these injections. The follistim medication is interesting because it is expensive….my rounds with my insurance company is a whole other topic I could write about…, it has to be refridgerated, and it looks like you are sticking yourself with a big ink pen in the stomach, everyday. It really is amazing what we do to our bodies to try to get pregnant. Well, by day 12 of my cycle nothing…absolutely NOTHING …. was happening. My estrogen levels didn’t even perk up a little bit from blood draws that were taken day 9 to day 12. Canceled cycle, over and done. When this happens they put me on provera (another type of progesterone) to get a period. I think by this point this was the 3rd time I had to take this for 7 days. Aunt Flow came 2 days after I stopped provera.

Fast forward to February. Another natural cycle. We had a trip planned to Atlanta as a surprise for my brother-in-law at the end of the month and I was very worried that with the timing they gave me we might have to cancel. Not a huge deal in the grand scheme of things, but it would have been a little disappointing. Well, turns out I started the follistim on day 2 of my cycle, which started conveniently on day 1 for keeping track of things. I took follistim religiously for 10 days and guess what!..IT WORKED! I had blood draws on day 6—my lining was already almost 5mm, day 9—7mm, day 10—7.8mm (THICK ENOUGH), day 11—still thick enough and then I got to take my HCG trigger shot at 3pm that day. We were finally where we needed to be to get the FET on the road! I though this is it! Finally we’ve gotten over the hurdles and we can get pregnant. On February 17, we were able to transfer.

That week went great before the transfer. It’s funny to me how I got so used to going to the dr. that it’s weird when I don’t have to go. One week you go four times and the next you just wait for the end of the week with no checkups in between. So friday, the 17th came. By then I was doing progesterone injections everyday in the butt/hip area, which you continue til week 10 of a pregnancy after transfer. Let me tell you, they aren’t pleasant. I had to drink 1.5 liters of water before the transfer, take 2 valium at 1pm, got picked up by my husband at 1:30pm, check in at 2pm and the procedure was done at 2:30. We got a picture of our embryo that was taken 1 hour before transfer. It is a crazy think to see what we all look like at just 5 days old…just a big blob of cells, really, that could form in to a beautiful baby. The transfer went like clockwork…they showed us what they were going to do and we could see the embryo on the screen starting to hatch even before it was transferred, which is supposed to be a good sign. They put up the catheter, which looks like a long spaghetti noodle, position it in the uterus and inside goes the frosty, ready to attach in a few days and burrow in to momma. I laid there after the transfer for 15 minutes and then I was free to get up and finally use the restroom. My hubby took me to my acupuncture appointment I had scheduled after and I fell asleep and relaxed. Then went home and sat on the couch for two days, ready to get pregnant.

With the timing of the transfer we were able to go on our trip to Atlanta and had great time, surprised my husbands brother and stayed 5 days. I was peeing on sticks later in the week we were there and I was getting 2 lines! I also had sore boobs, a bit of nausea (only once), and was getting tired in the afternoons. I was pretty sure I was getting preggo but I didn’t want to get my hopes up or tell anyone til we came home and took the blood test at the dr. So Weds, 2/29 I went in and got a great beta of 227! We got preggo!

But before you get excited out there, I had another blood test on Friday, March 2 and my numbers only went up to 254. Not good because usually hCG numbers double in 48-72 hours. It was a long weekend and I tested again yesterday, 3/6. My numbers went down to 171 so the embryo stopped developing.:( I’m going to miscarry.

I’m angry that it didn’t work. I’m sad. I feel guilty that I may have done something wrong in the two weeks post transfer. I’m worried that maybe my body, with the 3 way translocation, is rejecting pregnancies. But sometimes it just happens. Embryos don’t always form into beautiful babies. We knew there was always a chance of this happening but after having to go through so many hurdles the past 4-5 months this had to work. IT HAD TO.  It didn’t. And I’m bummed. So bummed. The amount of time, effort, thought, money, energy, medications, we’ve put into this is just exhausting, draining, disheartening. I feel guilty, like maybe I’m a bad person who doesn’t deserve a baby. Did I hurt the baby by traveling or hitting a few tennis balls in GA? Did I eat something wrong? I assure you, I relaxed, I slept, I ate well. I’ve done everything up to this point that I should have and yet it didn’t work out. And now all we can do is try again with our one remaining embryo.

Today I woke up angry and cried as my husband held me and then had to go to work. Since then I’ve chatted online with a few friends and called my mom (who is not the most comforting person in the world). But I’m feeling a bit better. I do think I will cry a little more before I start to get over this but the grieving has begun. I will start a new cycle in a few days and have a follow up with my dr. next week and see what is next, if there’s something we do differently next time and go from there. They say I have have to go through two cycles before we can start anew so we will probably not transfer again til at least June. Which I think is fine…it will give my body some time to get back to normal, take a vacation that we have planned and refresh. I don’t know what’s next but I hope this path we’re on straightens out soon.

-H

Updates and Frosties

Well, it’s been a while but since I last posted a lot has happened. Since 11/4 I have been doing my shot of lupron in the stomach every day, have been putting 4 progesterone patches on my stomach every other day and have had a few ultra sounds. Two weeks ago at my ultrasound my Dr. discovered that my uterine lining was not as thick as she would like so I was put on Estrace (estrogen). Then a week or so later I had another ultrasound only to discover that my lining was still not as thick as it should be for transferring embryos. The lining needs to be about 7.5mm or larger but mine was only 6.5-7mm. Almost there but not quite right. This was horrible news because the transfer was supposed to be TODAY and the egg donor was ready for egg retrieval last week and can’t just sit around and wait for my body to be ready.

So on Thanksgiving our egg donor had the egg retrieval and my hubby went in for his collection. The egg donor gave us 32 eggs!! Seems like a lot, and it is, but out of all of those only 10 were mature. Day 3 we got a report that all 10 had made it to that stage, which was positive news. Today was Day 5, the day that they freeze any that are now blastocysts and have made it to the stage where they should be transferred into the uterus to implant. Because my body is not ready quite yet we have to freeze what we can and wait for me to get ready either by next week if my lining looks good this Thursday or we scrap this cycle and start all over after a period and hope for an early January transfer. So we got good news today that we have 3 frozen embryos for sure and 3 more embryos are sitting in culture tonight and we find out tomorrow if they will make it to freeze. We have 3-6 good blastocysts to transfer—we can now call these our frosties. I’m really hoping that at least one more makes it tomorrow so we can have 2 to transfer on our first try and if we still want more kids we could have two more to transfer the next time.

Since I found out that my uterus is not cooperating I did a bunch of research on what makes the uterine lining grow. I’ve started taking chaste tree berry, chinese herbs (prescribed by my acupunturist), red raspberry leaf and baby aspirin. My acupuncturist also stepped up her game yesterday with castor oil on my stomach and a heat lamp and some stims put on my stomach and under my ankles. I hope all of these things help and by Thursday morning when I go in for the next ultrasound we find that my lining has thickened up and we can transfer next week!

H

Week 2 of Shots

We are well on our way towards IVF with our egg donor. Today was the 11th shot I’ve given myself in the abdomen and now I get to add progesterone patches to the mix.Yesterday I went to see Dr. Lamb for an ultrasound to make sure my ovaries are “quiet”, plus I had some bloodwork done to make sure my estrogen levels are low. Everything is going according to plan so I put on two patches yesterday afternoon and switch them out for two more tomorrow. They are kind of like putting clear stickers on my tummy and they are very sticky on one side but feel like plastic on the other. I’ve been told they may leave a sticky residue on me and I should use some sort of sugar scrub to get it off (sounds like an excuse to go shopping for something).

My doctor also told me that she is very excited about the egg donor we picked. She said she is the sweetest person in the world and she has been good at getting other couples preggo. I’m keeping my fingers and toes crossed that that is the case for us too. She starts her meds next Friday and only about three more weeks til my DH goes in to give his “collection”. It really is going to come up quick!

We are heading to Portland OR this weekend for a little fun (although my DH may have to work some). I have to bring my lupron and patches and syringes with me so need to figure out a way to keep the lupron cold for the trip. I called the hotel and we do have a fridge in the room so that’s good. I hope it is a relaxing trip.

Happy Weekend,
H

Here We Go…

Well, today I started my first round of shots. This all didn’t seem real until about last Friday when I got the box of medications, syringes, sharps box, etc. from Walgreens delivered to my door. And today I took the box to my clinic’s office and met with our nurse, Resa. We sat in a little office room at a desk and poured everything out and went through what everything is. The big needles will be saved along with a vile of progesterone for the end of November, which my husband will have to give me every morning (up to the 10th week if we get preggo). So for now I am giving myself a small shot of lupron in the tummy each day. I got to do it right in front of the nurse and it really didn’t hurt at all—the size of these needles are very small. I continue to do this until next Thursday and go in then for my first ultrasound and blood work and get to halve the dose that day. After I get my results back later that day I start progesterone patches on my tummy or lower back and have to replace them every other day, plus add one up to four over time.

Everything doesn’t seem so bad so far. We will see how it goes. I’ve got my 5th acupuncture appointment tomorrow and lunch with a friend who has gone through a lot of this already and is now pregnant. I’m excited to hear how her pregnancy is going and see if she has any tips for me.

-H

We Have Dates!

It’s been a while since I’ve posted on here but since we decided on an egg donor we now have official dates of when we will have embryos transferred! Right now it is looking like either November 30th or December 1st!

Right now it still doesn’t seem real but I start my shots in just 15 days from today. I have a calendar our nurse sent us which tells me what type of medication to do each day. I start on October 25th with a shot of Lupron in my stomach, which I will have to go into the doctor’s office to learn how to give myself. I also continue my birth control pills at this time for 5 days. I continue the Lupron shots and then on November 3rd I have to go in for an ultrasound and blood work. I guess if everything looks good at that time I start to halve the amount of Lupron each day and then start Progesterone Patches that are replaced every other day, and sometimes you add one…so I start out with two but by the time I’m finished with them I do 4 patches every other day. I head back to the doctor Nov. 17th for another ultrasound and blood work. Then I continue with Lupron and the 4 progesterone patches every other day until the donor is ready for retrieval. And then comes the nasty progesterone shots I’ve heard about which my hubby will have to give to me. 5 days after the egg donor goes in for retrieval and my husband give his sample we get one or two embryos transferred. It’s very exciting and I so hope it works.

I’ve also started acupuncture over the past few weeks for fertility. So many of my friends have done this in the past and who knows if it really helps in the long run but I have to believe it can’t hurt so I’m doing it. I’ve been going in once a week and tomorrow is my 3rd appointment. I also decided not to do the mayan abdominal massage for now. It is expensive and I talked to my acupuncturist and she didn’t really see any reason for me to do it since I haven’t had adhesions or endometriosis.

Sometimes I still can’t believe this is all happening and we have to endure so much to have a family but I’m sure it will all be worth it one day.  I’ve asked my parents to get tested for the chromosomal translocation that I have. They’ve both agreed to do it but just may take some time. My mom doesn’t have a doctor she goes to regularly so she just needs to find a place she likes and get an appointment. My dad is doing some blood work for his diabetes this month anyways so hopefully he can get tested at the same time. There’s no real medical reason for them to get tested other than it might complete part of my puzzle — I think it would answer if I became this way because one of them carried these genetics or it just happened (which they call de novo). I would just like to know either way.

-H

One or Two Embryos?

We still have a while to go before we will be transferring embryos, but I’m sure the time will go fast. It turns out the woman we chose as our match is currently in a cycle with another couple. So we have to wait til her period starts and then another 6 weeks after that. It sounds like we will be transferring embryos around the 2nd or 3rd week of November. Meanwhile I am taking BC pills and will not be taking the non-active pills so I can be ready to go at any time— I have to be on active pills at least 15 days before we can start the Progesterone Patches and Lupron shots which get my body ready to carry this baby (or babies).

While we wait for November to roll around we have a couple of things to figure out…well, really one big thing to figure out. Do we transfer 1 or 2 embryos? My doctor seems to think that we should only do 1 because I am on the petite side and not sure how I would handle having two kiddos in my belly. My understanding is if we transfer two that there is a 70% chance of having twins. Our Egg Donor Coordinator actually said we might as well name them! But, I am kind of in the mindset that if we transfer two and get twins than maybe we’ll be done creating our family. I do know it would be a hard couple of years with a lot of diapers, crying, feeding and no sleep, but it could be worth it since I’m not getting any younger.

Other things I’m starting to think about is starting acupuncture for fertility and possibly doing Mayan Abdominal Massage. I have a friend who went to Ruby Moon Wellness for the Ab Massage and then got pregnant so maybe it works? I’m going to talk to the masseuse about it tomorrow. I do start acupuncture with Susan Darling in Seattle next Thursday. I also found this article on Livestrong.com which tells me basically to watch my weight, eat right, don’t drink caffeine or alcohol, and stay hydrated; basically things you should do anyways. I’ve also heard before embryo transfer that I should start exercising less vigorously but for now it’s okay to exercise normally.

I’m looking forward to the end of September/early October when we find out more information on our timing. The rest of this year is going to get a bit crazy, but in a good way (I hope!)

-H

Matched!!

Today I am so happy to say that we have been matched with an Egg Donor!! Yesterday we met with our Egg Donor Coordinator and she gave us 5 fresh egg donor profiles and 5 frozen egg donor profiles to take home and mull over. Profiles list everything from weight, height, skin tone, age, hair and eye color to what they like to do and what their parents and siblings are like. In general, its kind of like looking at profiles on a dating web site or looking at cars online, only not seeing a photo. We are pretty much looking for a connection to this person along with somehow “matching” some of my characteristics.

When we left we decided to have lunch and pretty much went over the profiles on the spot. By the time I went home and he back to work we had one person we liked. Then we decided to go over them one more time last night and decided we really had 3 fresh egg and 1 frozen egg people we liked.

Funny how things work out…you would think we would have ended up going with the person who was first on our original list but unfortunately she is moving away sometime this fall and probably won’t be available. So we ended up with two others on our fresh list but one spoke to me more than the other so she is who we have chosen. I wrote back the coordinator—and the good news is our person is in! Timing will all depend on all the medications we take to sync up our cycles but it sounds like things will be rolling right along in October or November. I’m so excited for the next steps even though I know it will probably be painful and uncomfortable at times (I have lots of shots to take). It’s just so nice to know at this point that our dream of having children is back on the table.

-H

Unique

Back in June I had a bunch of blood tests to find out why I was miscarrying. Everything came back normal except for the Blood Chromosome Analysis, which is how I found out I have this Balanced Translocation. Over the past few days I joined a group online called Unique. I wrote a staff member there with my name, address, email, etc. and explained that I have a three-way translocation. Beverly got back to me by the next morning and had added me to the group and asked for more details on how I found out about this and what my exact karyotype is. I got out all my paperwork last night and wrote her back with it and all the testing they did to get this. This is my karyotype with all the breakpoints:

46, XX, der(1) t(1;21;3) (q12;q11.2;q12), der(3) rea(3) (?p26) t(1;21;3), der(21)t (1;21;3)

It really just looks like a bunch of gobbledygook to me so I spent last night on Unique’s website trying to figure this all out. At the bottom of this page is a list of information describing what some of this means. I tried to decipher it but it’s still another language to me and I really don’t get it all.

I also asked my parents over email last night if they would get tested because my paperwork recommended that I have my first tier family members get checked. We’ll see if they go for it and since my brother was adopted 5 years earlier than I was born they are the only people I can ask. It could be a lot of money for them to get tested and I’m not sure if their insurance would cover it, but it would be great to get more answers and see if they passed this on to me or if it just happened when I was created. I’m also interested to see if it could have been my dad because he had lymphoma 6 years ago and sometimes translocations can cause that.

When I got up this morning I had a new email from Beverly saying that she thinks my karyotype is “Unique”. She is going to do some research and get back to me soon. It’s pretty crazy to think of all the people in the world and I may be the only one with this particular genetic makeup.

-H