Heal already!

Went to Dr earlier in the week. Have more scarring (?!) after all the efforts to prevent, but he thought he was able to break it up (which did NOT feel good) but now I wait 4-5 weeks and go in to do the same thing. 

It was so nice to not go in for any tests or poking or prodding for a while and I just can't help but feel like we're still in the 1 step forward and 3 steps back mode. I'm pretty sure that things with my lining were fine when we first started going to see him about a year ago, so not sure if it's been just the cumulative effects or procedures he has done that have had such a negative effect.

Oh well. Wait and see some more, trying to keep busy in the meantime!

Better

Thank you to everyone who has reached out to me since my last post. The support is really invaluable.

The past couple of weeks has been a really nice break from doctors, taking lots of meds, and feeling so focused on getting more results in a few days or a few weeks. I'm not going to say that things are 100% great, but they are better. Maybe it's just my hormones getting back into a "normal" balance, but I am feeling better than I have in a while.

We still don't really know what's going to happen or exactly what we're going to choose to do next, but for the meantime we've got a lot of activities with family and friends set up for the fall to look forward to.

Where to go from here?

I feel more uncertain about our journey to try and have a baby now than I have in a long time, at least the past year. In my last surgery the Dr found one possible adhesion and cut it, but more importantly said that my uterine lining is just inflamed and very patchy looking, which is not optimal, and it needs some time to heal from all the procedures over the past two years.

I've been thinking a lot about how it's been two years this month since my first miscarriage. It's so hard to believe and has gotten me pretty down, I think mainly because it doesn't feel like we're much closer to having a baby.We're not really decided on where we go from here. We know we're going to take at least 2 months without any treatments to hopefully get my lining to heal up. But we're also out of my insurance coverage for IVF. Meaning that anything we do going forward with the specialist that is related to infertility is ALL out of pocket.So- IF my lining starts looking better do we try and do a transfer? Do we look for a surrogate for our embryos? Do we just try on our own so that we can go to my regular Dr, but run a higher risk of more miscarriages and therefore more procedures? Do we start the adoption process? I don't know any more. It just feels like almost every option is committing a lot of money and/or time, with no guarantee of success. 

If anyone has advice on what they think we should do I would love to hear it!

last procedure?

Hysteroscopy tomorrow. Let's hope this is my last surgery/ procedure for a LONG time. Dr is checking for scarring/ adhesions/ low level infection, and although he thinks there is only a small chance of finding any of those I am almost hoping that he finds something so that we can fix it!

Not sure what the game plan will be after that or how long we will wait to try the whole estrogen/ transfer protocol again.

In the meantime we are getting somewhat more serious with adoption research, at the very least to feel like we are doing something. I will admit that I am pretty frustrated at this point that it's been about a year since we started seeing the specialist and although I know having 2 embryos on ice is a good thing and progress, in some ways it feels like we haven't really gotten any closer to having a good sense of what is going on or any closer to actually having a baby through all of the tests, appointments, and treatment this year.

July Update

So, we may have jumped the gun in thinking our decision would be about whether to transfer 1 or 2 embryos, as we are now waiting to see if we will be able to transfer any. My uterine lining didn't cooperate with thickening up with estrogen pills, estrogen patches, viagra suppositories, blood thinners, and acupuncture, so we're taking a step back to try and figure out what's going on.

The plan is currently to wait a few weeks then do a hysteroscopy to make sure I don't have any scarring that's affecting things or any low-level infection. Dr said that he thinks it's unlikely that I have either but still worth ruling them out. Then we see if taking a few months to re-set my estrogen and other levels makes a difference. The thing that makes me worry is that looking back over my chart with Dr last week I have pretty consistently had thin uterine lining during cycles in the fall and in both IVFs....the guidelines say you need lining above 8 mm to have a good shot at sustaining a pregnancy and I have pretty consistently been at only 5-6.

So we're trying to decide where we go from here, it will be at least several months before we would think about doing a transfer again (and that's if my lining cooperates) and then its about 50/50 that I would get or keep a pregnancy. So time to start really looking into adoption and decide if we want to pursue that route. Wish I had better news but that doesn't seem to be how this goes for us!

Lucky number.....

Two. That's what we've got- 2 embryos that came back as genetically "normal". It's good news overall since having 0 would have been really disappointing and having 1 would have been very nerve-racking. And while it's a good step in our progress it's also in some ways a reminder that we have a lot more steps to go to get to having a baby.

We don't know yet whether we'll transfer both at once or one at a time to give us the best chance of success. Right now we're focused on getting my body ready for a transfer in a week or two.

We'll see what happens next.....

Lucky number 9?

9 has always been my family's "lucky" number. All 4 of us have 9 in our birthday, with my brother and I both having birthdays on the 9th (of different months). So I'm hoping that it's a good sign that we ended up with 9 embryo biopsies to send for genetic testing. As my Dr said, he's cautiously optimistic at this point.....it is a good number to start with, but we are all aware that it will be very possible for us to get back 1,2, or 0 that turn out to be genetically normal. The Dr actually showed me a sample test report when we were talking about whether to do IVF from a couple that had a similar history to us and sent in 9 embryos for testing, getting 1 back as normal.

But, all we can do now is wait and see. It is 2 weeks to get the test results back and not much to do in the meantime. The embryos are all re-frozen and waiting, and I'll start the process sometime in the next week of medicine to get me prepared to (hopefully) do a transfer. I'm not sure exactly what the protocol is at this point but I know it involves taking supplemental estrogen and then at some point taking progesterone shots to "trick" my body into thinking it's pregnant to prep for an embryo.

It's certainly nice to know that we have had at least one step start to go right, but funny enough it's almost served as more of a reminder to us about all of the rest of the thousands of things that will have to go right to end up with a baby. But, one step at a time.

Hoping for a good one

I had my retrieval the other day, and thankfully am feeling much better (so far at least) than after the first one. They retrieved 29 eggs of which 20 fertilized. So now we wait for a few days to see how many grow normally to be able to biopsy and send for genetic screening before they get frozen.

If things go well and we have one (or more) that come out normal we would look to do a transfer in 4-5 weeks; if not we'll be back on the road of looking at other options, probably through either donor eggs or donor embryos.

Let's hope that out of 20 we got at least ONE good one.....

And again.....

Today is day 5 of shots for our second round of IVF. We decided to try one more round and see if we can get lower quantity but better quality eggs this time, so I am on about half the dose of all of the stimulating drugs compared to last time. If this doesn't work out, we'll most likely look into the different options of donor eggs, donor embryos, or adoption.

Certainly not where we were hoping to be at this point- it seems funny now that we deliberated so much over the first round of IVF and then pretty quickly jumped into the second round but I guess it's one of those things that once you convince yourself it's the right path you are all in.

Anyways, fingers crossed that this time goes better both for me and my eggs!

Well this sucks.

For anyone who was hoping for a good news post, this will not be it. As much as I would have really loved to have something positive to share we haven't had much of that over the past week.

Since my egg retrieval last Sunday I have pretty much been a cloud of pain and nausea meds since I developed moderate/ severe OHSS (ovarian hyper stimulation syndrome) that was kind of scary and overall just very unpleasant to deal with. You can google it if you want, but in a nutshell OHSS is where after egg retrieval/ ovulation your hormones go kind of haywire and your body decides to retain fluid, causing the very fun side effects of pain, nausea, dehydration, and abdominal swelling. I felt ok Sunday and Monday after retrieval and then Tuesday into Wednesday started feeling worse and worse- I usually am not a nauseous person but when one anti-nausea med was not enough and I had to go on another and then that still wasn't enough I was not a happy patient. Plus my abdomen from Tuesday on looked like someone had stuck a balloon in my stomach and inflated it, making absolutely everything uncomfortable including walking and sleeping.

I wound up so miserable that I went in to see the Dr on Wednesday afternoon and then went in to get fluid drained on Thursday. 3 liters, from my abdomen. Kind of gross even to me. Thankfully, I didn't end up with the "worst" stage of OHSS which would have been either hopitalization for dehydration or the insertion of a drain into my side for a week or two to allow fluid to continuously drain. I definitely felt better after the procedure, but then still had the swelling/ pain/ nausea trifecta for several more days since draining the fluid provides a temporary solution but it does come back. Today (Monday) is the first day I am feeling sort of perkier, and by that I mean it's 10 am and I'm just starting to contemplate whether I can get by without some nausea medicine. Supposedly I'll feel mostly better by the end of the week.

Then on Saturday, to add insult to injury we got news about our embryos. Out of the 30 that we had at the beginning of the week only 3 had made it to Saturday, and 1 was graded "fair" and 2 "poor". So, this sucks. We spent a while talking to the Dr and the thinking is that something is happening with the DNA that is causing it to mismatch and therefore not have viable embyros. 

Not the best weekend in our household to say the least. But for the time being I'll be recovering and figuring out options going forward.

Easter Eggs

We started our IVF cycle on 3/22, anticipating a 4/2 egg retreival. Things went fairly smoothly during the stim process, although if you ask my husband I probably wasn't too pleasant to be around for a while. We ended up scheduling my retrieval for Friday 4/3, but of course with me things do no go quite according to plan. My Dr wanted to do a Lupron trigger since I had produced a lot of eggs, to try to bring my hormone levels down a little faster. In reading about it, I could see that there are rare cases where the Lupron trigger doesn't work and asked the nurse about it. Was told that they would get bloodwork done the day after to check levels and make sure the trigger worked. Well. Went in Friday for the retrieval, and before even going in had sort of a disaster as they couldn't get an IV on me, ended up being stuck about 8 times for the IV and Jacob ended up being the one to get it. This is all as Dr is pacing outside the door saying that we really have to get started and can't be late. No pressure.

So then I get in the room, he starts getting eggs and realizes that I have not triggered. What??!! I really couldn't believe that they had messed this up, and not caught it with the blood work. Apparently my progesterone level was elevated, but given the number of eggs I had it should have been much higher to mean that I triggered.

Back home on Friday, with black and blue arms from all the sticks. Ended up doing another trigger on Friday night, this time HCG, and scheduled the second retrieval for Sunday morning. Went in to hospital to Jacob's colleague on Saturday afternoon to get an IV put in to try and prevent another disaster like Friday morning. So, I spend an uncomfortable night Saturday trying to sleep with and IV in my arm, but got up Sunday and went in and things went much smoother.

Overall results: they retrieved 44 eggs, fertilized 37, and as of today (Day 1) have 30 embryos. This is good so far.....we will see how they are doing on Thursday and then decide how many to send for genetic testing. Now fingers crossed that a decent amount have good genes.....

Here we go.....

On Monday I got the all-clear to start my IVF cycle. I am.....terrified. I had been feeling very apprehensive about things for the past few weeks, and kept trying to figure out why I felt that way. Then I realized that I was just scared, for several reasons. First, I feel like it's a big investment, of both money and time and everything physically that goes into it. Second, in a way I feel like it's our "last shot" in a way, because we have been holding IVF out as sort of our last resort for interventions that can lead to us having our own, biological child. Now, I know that's an over simplification of things because there is certainly a chance that we will end up having another kid naturally in the future. But it's still scary. Because after this, our options become things like surrogates and adoption- and while those are fine options, it would certainly be a mental adjustment from having our own kid.

So, we'll see what happens. I had been on the fence about whether IVF was really the right thing for us to do when I went to the Dr on Monday, but he walked me through an example of a couple he's worked with that similar to us had had several miscarriages, tested normally on genetics themselves, but then when they did IVF ended up with one normally genetic embryo out of nine. That convinced me that IVF is the right path for us, because 1/9 or 1/10 is not great odds to face on our own. So I have my fingers crossed that we end up with more than that, because I would be so nervous about 1) getting pregnant and 2) staying pregnant if that were the case for us. 

Let the shots begin!

Second Opinion??

I have to write a little more about this because it has kind of blown my mind. I wrote in the last post about how Jacob and I had gone to get a second opinion, but the more I have thought about it it's amazing to me how different two opinions can be, with doctors who are both extremely confident about what they do.

When we went through everything 2 weeks ago we had the one surgeon who was completely convinced that I needed a hysteroscopy to clean up from my last D&C, and then my "old" doctor who advised me that he thought the risks involved in having surgery made it a bad decision. In the end, I didn't have surgery, did some other things with my original doctor minimally invasively, and things worked out. That's not to say that things may not have worked out if I had had the surgery; but just scary to think that I could have risked complications at worst or at best had the expense and physical invasiveness of going through another surgery that I didn't really need.

It makes me a little crazy to think that I need to question a lot of what is said but that's hard! And I try to remind myself that if I were dealing with a "serious" health issue things would be different, and I'm fortunate that I'm not, but still adds to the stress and sometimes frustration of the whole thing.

Rollercoaster

Dear friends,

I know it has been a while since my last post. Partly because I didn't have much to report, up until a few days ago.....

This last week has been a bit of a whirlwind for us with doctor-related activity. Last Thursday we went to see another specialist for a second opinion and also to see if their office seemed to provide a more positive environment. We ended up meeting with the Dr for about 2 hours, reviewing treatment options and talking about future treatment. There wasn't too much brand new news, which I guess is a good thing, other than that he did an ultrasound and found what he thought was tissue retained from my last D&C. And suggested....more surgery. That hit me kind of hard, because it was pretty unexpected. And I just hate the idea of doing more surgery that results in more surgery and so on. Feels like an endless loop sometimes.

Needless to say, the next 3 days were a flurry of phone calls between new doc and old doc to figure out what we were going to do. I ended up with surgery scheduled for today (Wednesday) and then ended up cancelling it yesterday after old doc called me on Monday and we talked for quite a while about risks of surgery (scarring, etc) and what our other options were. All complicated by the fact that I was out of town Monday- Tuesday and Jacob and I are leaving the country Friday for vacation. No big deal :)

Here's where we are now: 

- trying to use misoprostol to see if any retained tissue will come out, and also going to get another HCG level to see if it is still coming down (last one was 230, high for 5 weeks post D&C)

- regardless of what happens, we will start the stim process for IVF once we are back from vacation. Even if the misoprostol doesn't work, we will have time to sort that side of things out separate from doing egg retreival. We are basically just really antsy to get the show on the road at this point.

- worst case, I end up still having to have a hysteroscopy in March. (hopefully not, but we'll see)

Whew. In the meantime we are trying to schedule time to visit family and friends, go to weddings this spring and summer, and everything else.....good problems to have for sure, but it gives me a good deal of anxiety to know we have all of these plans and somewhere along the way I will be a crazy hormonal mess for a few weeks. 

That's all for now-

On hold

You know when you're stuck on hold with customer service, for something that you really want to get done, and it's so frustrating that you're stuck waiting?

That's what I feel like the past 2 years have been like. And I know, and acknowledge, that I am a fairly impatient person. My husband reminds me on an almost daily basis, but I just like to see progress, or change, or movement towards something being done.

We were talking last night about my frustration over where we are with things, and I know he tries to be understanding but that it is just not the same for him. For me, I feel like so much of the past 2 years and even looking forward now has been affected by the same train of thoughts, for example when thinking about planning a trip or attending a friends wedding- will i be pregnant? will i be on medicine that will affect what i look like/ can drink/ how i feel? will i have to fit an event in around doctor's appointments? And then more generally, as we talk about our jobs and lives, it's more of thinking, if i change things (i.e. jobs) what would my benefits be like? (i am fortunate that they are very good right now) what kind of maternity leave would i have? (assuming we get to that point) what kind of vacation would i have?

And I feel like it is all just a moving target that is always changing, and with no end in sight. I know that all I can do is to go one step at a time, and make decisions based on the best information I have. But I wish I just knew (or felt like I really had any good idea) of what our timeline would be for getting pregnant, having kids, and all the rest. But, no crystal ball. Just hoping that it will all work out sooner or later.

#4

I know I haven't written in a while- there was a while where I didn't know what to write, but things have sort of settled out. In early December I thought that I wasn't pregnant, and Jacob and I were kind of upset that we had done 2 months of treatment without anything working. And I know, 2 months isn't very long, but whenever we tried getting pregnant on our own previously it was fairly quick.

So, after thinking I wasn't pregnant I started feeling funny and so about a week later took a test and guess what? Pregnant. So. We were excited about it, but at the same time I had a pretty high anxiety level about it. We went in just before new years and got an ultrasound with a heartbeat (yay!) but then went back a week and a half later a no heartbeat. So really, the same thing all over again.

I could tell the Dr was really upset for us; he knows how tough it is to go through a miscarriage, even more so when it is our 4th in under 2 years. Surprisingly, although I was certainly upset by how things turned out I think I really did not ever get close to assuming that things would work out. After having problems 3 times before, it's hard for me to wrap my mind around the idea that things would go ok.

Anyways, we are on to the next plan- maximal intervention here- none of us are messing around anymore! Dr things that what we've been seeing is the result of a clotting disorder that we haven't fully diagnosed; I think since we've seen heartbeats in 3 that have then suddenly stopped it points to something happening to arrest the heartbeat. So we're going to do full IVF with genetic screening of the embryos, and then I'll go on a low dose of heparin to try and help with the clotting. And of course, still on the thyroid meds and other vitamins.

We've got a few weeks to wait for healing before we can start all of this, but assuming things go fairly smoothly I hope to be pregnant via IVF by my birthday in early April.

Wish us luck! (and wish my husband luck for dealing with hormonal me!)