Lucky Friday the 13th

We left Thursday night around Lucy and Clara's bedtime for our trip to Long Island for my first ultrasound appointment. We had booked a hotel room that was about 5 minutes from Dr. Braverman's office so that we could drive down the night before and be close in the morning. The drive went pretty well despite hitting some snowy roads for about an hour in Pennslvania. My mom came along to help with the girls and to be able to watch them at the hotel during my appointment. 

We arrived at about 11:45 pm and W checked in while I waited in the car with my mom and the girls. We pulled around close to the room and waited while W unloaded the car (we didn't bring much because it was just overnight). He set up the pack and plays and then came down to get us. Lucy had first opened her eyes when W checked in. I asked my mom not to talk to her but she didn't really listen and was still making eye contact with her and smiling. 

We got up into the room and tried putting both girls right into the pack and plays. They both immediately started crying. So, we pulled them into our bed and laid down with them. Clara went back to sleep pretty quickly and was easily put back into her pack and play. Lucy, on the other hand, didn't go back to sleep until close to 4 am. We tried giving her Tylenol because I knew she was cutting a big molar, but that didn't seem to help. We tried putting her back into the pack and play multiple times and she would just cry. You can't really let your kid cry in a hotel room.   

The hotel had a free breakfast so we went down in the morning. There we met a couple that said they were pregnant with twin girls. When they asked us if we had any other children we said no and then asked them the same question. They said they had three others...triplet boys! Can you imagine?!

I was so nervous I barely ate. We put the girls down and left around 9:20 for my 9:45 appointment. When I checked in they gave me a cup for a urine sample. I tried my best but was only able to give them a super small amount of urine. There wasn't anyone in the waiting room and they called us back fairly quickly. The nurse was one I remembered from last time. She took my blood pressure and it was surprisingly good despite how nervous I felt. She left the room and we waited for Dr. B. 

He came in after a few minutes. He again said that if he didn't say anything right away it didn't mean anything, he just wanted to get a good look first.  

We saw a beautiful little baby that measured 6w6d and on par with when I thought I ovulated. My due date is 10/3/15. We heard an amazing heartbeat at 141 beats per minute. I asked Dr. B to check which ovary I ovulated from and he joked it was so I could tell my child when they someday ask. Sure enough, it was the one without a tube. When I said that he said the tubes actually lie overlapping on each other. I guess I didn't realize how close in proximity they were. 

He checked the doppler blood flow and it was pretty uncomfortable. He made more jokes as he seems to do and said the blood flow to my uterus was slightly constricted but that the blood flow from my uterus to the baby was great. He didn't think there was any need to change any of the medications at this time. He asked about the immune panel and I said it was pending. I asked about Neupogen and told him it was denied by my insurance. He said once the insurance company denies it there's no point in appealing it. I asked about donated meds and he said he would check if there were any. He then asked,"See you again next week?" I then reminded him that we lived almost 5 hours away, so he said he wanted me to get another ultrasound next week locally. He said he'd like to see me again around 10 weeks and we said we'd be able to make that work. 

I then asked him if he allowed children in the office. He said he didn't have any problems with it but knew the infertility patients sometimes complained about it. He liked to see it as what could be for those patients and said it would be great if we brought the girls in for some pictures. 

When I went to check out the nurse said my urine sample was going to be enough and that I didn't need to try again. I asked her about Neupogen and she said she'd check. It took her a little while but she came back with 4 vials! I was so happy and grateful as they are each $360 OOP and one of them lasts about 3 1/2 days. 

Since the appointment was so quick I texted my mom to see if the girls were sleeping. We didn't hear back from her so we went to a plaza nearby the office we've been to before. We went into a few stores and grabbed me a coffee before heading back to the room. 

The girls woke up when we got back and we packed everything up. We headed back to Dr. B's office for them to see the girls. There was another child and another couple waiting in the room. The other child was around the same age and we were talking some with the mom. I could tell the other couple wasn't pleased to see all the kids in the office. After a bit Dr. B came out and we got some pics of the four of us with him and then passed the girls off. They immediately started crying (as I suspected they would) and we got some funny pics. Dr. B was a good sport to smile while holding two crying babies. He told them, "Last time I saw you two you were just circles." I guess they didn't think he was too funny. 

From there we headed into Manhattan. My mom fed the girls snacks as we drove. We parked in a garage about 7 blocks from a restaurant and Children's museum I had scoped out. We walked to the restaurant and had an amazing lunch of dosas. The girls ate them and also loved trying something new. We were both impressed when Clara was gladly eating chicken curry. 

We then walked around the corner to the Children's Museum of Manhattan. This museum was a bit pricey as we had to also pay for the girls (most museums around here don't charge for children their age). It was so worth it though! The girls had such a great time. They were both walking all over the place and loved all the slides everywhere. Every time we moved on from one thing to the next they were sad. It was 5 floors that were all so much fun! There was a lot for kids their age and they had a ton of fun playing and watching the other kids. We stayed for a few hours and then headed out from there. It being their nap time we expected them to sleep for quite a while. 

Lucy had other plans. The ride home wasn't fun with her even with the DVD players we bought. They helped some, but she was teething and exhausted, so didn't want to be in her carseat. I ended up in the backseat with them for most of the ride home. We stopped at a rest area for dinner (soup dumplings that we had picked up in the city before heading out) but unfortunately there weren't any tables there apart from the ones outdoors and buried under a least a foot of snow. We improvised and made it work on a bench and then let the girls walk around and tire themselves out. 

For the rest of the trip Lucy mostly slept but would wake up crying about every 15-20 minutes. It wasn't a fun 3 remaining hours to say the least. With traffic and stops our ride home took 7 hours. Luckily both girls went down in their cribs and slept the rest of the night once we got home. 

I'm feeling so much better about things having seen and heard that little heartbeat. It's so amazing to think there's another little baby growing inside me. Next week I'll probably end up at the local fertility clinic for my ultrasound unless I'm able to get in at my ob's office. I'm hoping things continue to go well and stay uneventful. 

Updates

The past few weeks have been a whirlwind. Due to having shared my blog with friends and family, I've been hesitant to share what's been going on. But, I've decided I need to get this off my chest. 

I had my follow up appointment with my ob/gyn on January 7th. They did an ultrasound and there was a large cyst on my left ovary (the ovary without a tube). Having had a positive ovulation test the week prior I assumed it was a corpus luteum cyst from ovulation. The ultrasound technician said it was hard to tell what kind of cyst she was looking at, but if I thought I had ovulated it was possible it was a corpus luteum cyst. I talked with my dr after the ultrasound. I was meeting with him because my cycle the prior month had been 62 days and I felt like a hormonal nightmare. He said he didn't feel like I needed to do anything specific, but he was happy to offer progesterone to help regulate my cycles. I told him that I had started taking Pregnitude (a myo-inositol and folic acid supplement) I had leftover from my IVF cycle with Lucy and Clara and felt like it was really helping with my moods and to shorten my cycles. 

I left the appointment feeling positive. I was feeling like my moods were better, my cycles were shortening, and I was tuned in enough to my body to have an idea of what was going on. Based on my ovulation test and ultrasound it seemed I ovulated the week prior on CD 16. That was way better than the prior month. Maybe the myo-inositol was helping. 

The next day I started to feel like taking another ovulation test was worth taking. Having been clued into my body and how I was feeling, I thought I was showing signs of ovulation. Within a minute of taking the test I had a super dark and obvious positive test. Compared to the week prior, it was a much more convincingly positive test. At one point I debated calling my drs office to find out the size of the cyst on the ultrasound. It made me wonder whether it was actually a follicle rather than a post ovulatory cyst. I never did call. 

At that point I started to feel frustrated and like I had no idea what was going on. Just the day before I had my appointment and left feeling so positive. I was frustrated my cycle was going to be longer, and who knew how many times I'd get positive ovulation tests that month. I had read that using ovulation tests with PCOS can yield inaccurate results. Was this going to happen every week? Were my cycles going to continue to be 50-60 days?

11 days later after my second round of positive ovulation tests (on January 20th) I wrote this post: 

Yesterday morning after putting the girls down I started to get myself ready since we had a play date scheduled with some friends. On a whim I took a cheapy pregnancy test. Prior to hopping in the shower I peeked at it and swore I saw a shadow of a second line.

While in the shower I talked myself down. There was no way. I knew I ovulated from the ovary without a tube. 

When I got out I took another look. There was definitely a shadow of a second line. So, like any sane person would do, I used two more tests. Both also showed a super faint second line. It was at that point that I started shaking and didn't stop for at least an hour. 

The first thing I did was to email Dr. Braverman. He said to get an HCG test done ASAP so I called my ob. They were happy to call a script in to my local hospital. 

The girls woke up and we went to our play date. It was nice to have a bit of a distraction from my racing mind. From her house I dropped the girls at home with my mom and went to the dentist. Luckily the dentist didn't take long and I was able to head over for blood work after without having to tell my mom. 

On the way home I stopped at he pharmacy to pick up my metformin and purchased some FRER pregnancy tests. I came home and took one only to see 2 lines again. 

I didn't want to tell W over the phone or text so I waited until he got home. As he was feeding the girls their afternoon snack I set up my camera and took a video while I handed him the tests. His face was absolute shock and confusion at first that quickly turned into happiness and excitement. 

I had to laugh that these were the shirts I picked out for Clara and Lucy that morning. 

Two days later I wrote this:

As I said, the first person I contacted when I discovered on Monday I was pregnant was Dr. B. He advised me to get a beta ASAP and I did that afternoon.

I called my ob's office to get the results on Tuesday. My HCG was 21 and my progesterone was 14. I had taken another FRER test that morning and the line was darker than the previous afternoon. With the positive result, my ob's office wanted me to repeat the test on Wednesday. 

I emailed Dr. B Tuesday afternoon with the results and he advised I call the office and register with their pregnancy management. I called that afternoon and talked with the receptionist. Despite telling me she'd email me the packet of info, she didn't that afternoon.

I didn't sleep well all night and finally emailed Dr. B early Wednesday morning saying I'd called but hadn't gotten the information. He replied quickly and I heard from the office shortly after. They sent me the packet of info I needed to fill out and fax or email back ASAP. 

After our Music Together class this morning (Wednesday) I headed for another blood test. From there I went somewhere to fax the paperwork. 

I got my protocol Wednesday afternoon and medications are being ordered. I will be on Lovenox, baby aspirin, neupogen, metformin, and calcium. 

I'm feeling so anxious and scared. I said it's impossible to embrace this pregnancy without getting excited and I'm too scared something will go wrong to get excited. 

Things moved quickly to get medications ordered. My second beta was 73. This was a doubling time of 25 hours. I found out my insurance needed to pre-approve the neupogen so we paid for the first vial OOP at $360 so I could get started ASAP.

A few days later I called the insurance company to find out an update on the medication. I was told it was denied because I didn't have any of the specified conditions listed for the medication. They told me I could appeal if I wanted. 

We've been forced to pay for this medication OOP. One vial lasts about three and a half days. To say I'm stressed about the price is an understatement. I'm not sure whether it's worth it to appeal to the insurance company as I've been through the process before without success. This expense is really unexpected for us.  

Things have been stressful. I've been so scared and anxious. I've had three early miscarriages. I need certain medications to sustain a pregnancy and I wasn't on them initially. We want to get excited about this amazing news, but we still are having a hard time. 

Starting the neupogen meant stopping breastfeeding. I wasn't planning to stop as suddenly, but was in the process of gradually weaning the girls. I wanted it to be more on their terms, but I stopped because it wasn't safe to continue. That's been another tough thing I've been dealing with emotionally. 

We've also found out that two sets of good friends will be moving in the next few months. 

I guess you could say we were trying to get pregnant... sort of.  We really didn't think it would happen, but said we'd be thrilled if it did. I knew my cycles were long and things weren't looking too good for it happening without assistance. We had talked about going back to Dr. B in the fall around the time the girls turned two.  

I finally scheduled an ultrasound with Dr. B for next Monday, February 9th. Based on my timing, I will be 6w3d. I was so scared to schedule anything. I'm still terrified to go all that way and receive anything but positive news. 

I've been in the early stages of pregnancy unsuccessfully more times than successfully. Twice I felt so positive and optimistic between my positive betas and ultrasounds only to get devastating news at an ultrasound appointment. I can't let myself feel that disappointment again. 

That's the hard part about all of this. I so badly wanted to be able to experience pregnancy like a normal fertile person. I'm quickly realizing that will never be the case. Someone who hasn't experienced loss can't understand the fear of it happening again. Immediately I also had to start injecting myself with medications three times a day. 

So, if you know me IRL and I haven't shared this news with you it's likely because I'm just not ready. It's nothing personal, it's just something I'm not really sharing with many people at this time. I'm hoping things will continue to progress, but I'm glad to have written it all down. I'm feeling ready to reclaim my blog as my space to voice it all. 

    

Relying on Vitamin C and Neupogen

All week I've been getting headaches from the Lupron. This morning I woke up with a stuffed up nose and sore throat. I thought getting through a work day with a headache was rough. Today I realized it's much better than trying to work with a headache and sore throat. 

I started Neupogen today which helps boost white blood cells. I'm hoping those white blood cells can kick this cold's ass. Come on Neupogen!

I also started Lovenox and baby aspirin this morning. I've been bruising really bad on my right side so might have to just stick to the left side of my stomach. I also start Delestrogen tonight. 

Unfortunately, my insurance didn't cover the Delestrogen. When I called the insurance to find out why they cover Estradiol but not Delestrogen they gave me a very strange reply. They told me it's something that is typically administered by the doctor in their office and then the doctor bills the insurance. It's not something that is covered if just dispensed. I don't get it. On the plus side, my insurance covered the Neupogen and I only paid 50 bucks. You win some you lose some. 

I just hope I can start feeling better soon. I don't plan to do much this weekend except lay low and try to feel better. We are having dinner at my in-law's tomorrow and hopefully will go to yoga on Sunday. 

The side effects have been rough this time around. It's so strange how each cycle the meds affect me differently. I've taken Lupron and had no issues and taken it other cycles and gotten daily headaches. 

Happy Friday!! I hope everyone has a good weekend. 

Hoping it Helps

The biopsy today wasn't fun at all. I had one done previously but it was so long ago I must have blocked it from my memory. The NP at my office did the biopsy and although it was over quickly, it was rough.

I actually broke out in a full sweat during/immediately after. I stayed reclined for about 5-10 minutes and then felt better. I had a bunch of cramping for quite a while after. W brought me home flowers which was super sweet. 

I'm not sure it's something I would do again but hopefully it won't be necessary. I have a really good feeling about this cycle. 

The local pharmacist knows me well and I asked today about the Neupogen. She wrote a script to see if my insurance would cover it and it was approved for only 50 bucks. We will see when the actual script goes through, but that would be amazing. 

I looked more closely at my calendar and saw they had me on Crinone and two different antibiotics at some point prior to the transfer. I emailed the nurse today and we changed it to PIO and she told me one of the antibiotics will be done as a vaginal suppository. That's definitely different. Has anyone ever heard if that? The drug is called clindamycin. 

My next appointment is Thursday for blood work and a sono. Otherwise, just making it through another work week. I'm going to yoga for fertility with a friend tomorrow and then we are going to dinner after. I take my last birth control pill tonight! 

Throwing in the Kitchen Sink

Today has been extra long. Maybe it's because we woke up early and accomplished a lot by noon, and maybe it's the extra hour. I'm not thrilled about how early in got dark out, but hey, that comes with this time of year. 

Multiple times this weekend I looked outside to see snow flurries/sleet. Nothing stuck to the ground but a few rooftops and cars were covered with a dusting of snow this morning. It's starting to feel less like fall and more like winter. There are a few trees that still have pretty leaves on them, but most trees are now barren. 

Yesterday we hung out mostly.  I did some quilting, and W worked on some random stuff around the house with my FIL.  We then went to the movies to see Flight and it was really good. From there we hit up the in-law's for some free and delicious dinner. 

This morning we woke up early to go to yoga. I finally convinced W to join me for a class. The class was challenging but also amazing and I felt so great after. The place we went also has a hot tub, sauna, and steam shower that we both used after. It was a pretty fabulous way to spend a Sunday morning. 

I hate to admit it, but it was the kind of weekend that made me glad we don't have any kids yet. We did exactly what we wanted and that's something I don't take for granted. 

Tomorrow I have an appointment to do an endometrial biopsy. I've had one done before so know what to expect, but I also don't expect it to be enjoyable. I'm willing to throw the kitchen sink in on this cycle, so whatever helps I'm willing to try. 

I started Lupron on Thursday and have been having slight headaches. It's nothing terrible, but just pesky and present. My first shot last week I started bleeding a bunch and have a bruise to show for it. I guess I was a little rusty. I take my last birth control pill tomorrow and have another appointment this Thursday. After that we will start Lovenox, Neupogen, and Estrogen. I found out the Estrogen will be an IM shot but it's only every few days. I also called to get a price on the Neupogen and it wasn't nearly as bad as I had expected.  

I'm really looking forward to Thankgiving with my family. We are going to my sister's house and I will get to see her pregnant belly for the first time in months. I can't wait to rub it (making her uncomfortable doing so) for good luck!

New and Confusing Information

Yesterday was my follow-up with Dr. Br.averman. Of course the office was running behind so we waited for over an hour past our appointment before they called. 

At first Dr. B said everything was essentially normal. But I could hear him flipping through pages and pages of paperwork. Then he got to the HLA (Human Leukocyte Antigen) matching portion of the testing.

Here is information I found on HLA matching from Dr. B's website in order to explain it and be more clear:

"A fundamental part of HLA function is the presence of MHC molecules on all cells in the body. While there must be great similarity between these HLA genes with the donor and recipient during a transplant, this does not hold true when considering an embryo. There are reasons an embryo must have significant differences than the mother in order for a pregnancy to be successful and not result in miscarriage. Evolution has resulted in significant variation in the shape and sizes of MHC molecules (It is the MHC molecules that pick up virus and bacteria and present it to the immune system for eradication). The variation of the MCH molecules prevents a virus or bacteria from mutating and then evading the immune system in every person they infect, preventing an entire population form getting wiped out during an outbreak. Nature has a reason therefore to try and reject an embryo in couples with similar HLA genes as this would eliminate the ability to diversify.

Other HLA molecules on the embryo's surface, however, play an important role in beginning the process of immune tolerance. One theory is that a difference between the HLA genes of the mother and the embryo is important as it draws the immune system to the site of implantation due to the detection of something foreign. From here, the embryo begins to interact with the maternal immune system to turn off its attacking aspects and use it to its own advantage. Advantages include mild inflammation that can assist with implantation as well as the production of antibodies to protect the fetus."

 So, apparently W and I have a lot of matches. He said anything over 5 was considered significant. We have 6 that we know of for now. The test wasn't complete and the DQ Alpha portion of it was missing. This means there are another possible 2 matches that we will find out about once we complete the testing.

The HLA system is located on chromosome 6. As Dr. B said, this is the chromosome that "polices the immune system". If things are too similar, then the immune system attacks the embryo. He thought this was a possible reason for the way things have turned out in the past.

He also said that I had a PAI 1 4G gene mutation which is consistent with PCOS. I also have 1 copy of Factor V and 1 copy of MTHFR. All of these create a cumulative effect relating to blood clotting. He said this can be easily remedied with the use of Lovenox.

As far as the HLA matching goes, I guess his plan of action is to use Neupogen. This is a drug that is administered as a shot like anything else in a IVF cycle. The way that it works is it puts the immune system to rest in order to shield the embryo from the immune system. It's a drug commonly used during chemotherapy and is experimental for use in IVF cycles. Dr. B said he's had a lot of success using it for this type of problem. 

He said we don't need IVF and that IUI's would be an option. For now we will do IVF since we already have a cycle paid for. In the future, we could have him manage the immune portion and do IUI's. They are covered by my insurance so it's definitely something to consider if need be. It's that whole missing a tube thing that deters me. 

We talked about this upcoming IVF cycle. At first I could tell he didn't want to manage it due to the logistics. He was trying to back out of it but I put more pressure on him and he said he would keep to his word. I know its complicated and difficult, but I can't keep doing the same exact thing that my clinic has me doing. It's not working!

We talked about a the protocol again and meds. We will start on Gonal-F at a higher dose and then step it down shortly after. The reason to do this is that the higher dose recruits more eggs to begin with and then once they start growing they don't need as high of a dose. We may or may not add LH depending on my levels and his preference was Menopur over Luveris. After a few days we will add in Ganirelix and will trigger with Lupron. The plan for now is to freeze all embryos. It is likely my estrogen will get super high again and it's not a favorable environment for embryos. Also, the hormone management is extremely difficult with a Lupron trigger and I guess it would be easier to wait. I'm not thrilled about this option, but it's OK. I'm happy to try something different. 

So the plan for now is I need to get doctor's orders to my current office to get a sono before coming off birth control pills. I'm waiting for them to send this over so I can schedule my appointment. Then I will get a scan. As long as everything looks good I will stop bcp's and we will start this cycle. I should get a protocol written out from Dr. B and get assigned to a nurse soon.

So the biggest question is, how am I feeling about all of this information? I'm SO HAPPY I trusted my gut and pursued another opinion. I'm glad I found Dr. B and that we went through with all of the immune testing. I definitely had my doubts about whether it would all be worth it. I now 100% believe it was! Just doing what CNY told me "keep trying, it's a numbers game" was not going to work for me. There is something bigger going on. 

I'm kinda sad to find out to the hubs and I are apparently just too compatible. At least we know that if we ever need an organ transplant we don't need to go far. I'm hopeful for changes and armed with a whole bunch of new knowledge, ready to move forward and get this show on the road!