Allergic to food

I'll start off today with some really GREAT news -- I'm an auntie again! My brother and his wife welcomed a beautiful baby girl on Friday, September 21, and her name is Isla. We are thrilled to have another gorgeous niece - we now have two nephews and two nieces! I can't wait to get to Arizona and love on that little bundle. Also, my dear friend N and her husband welcomed a baby girl on Saturday morning. I got to go see her on Sunday and she is just perfect -- a tiny little thing and so cuddly. Her name is Lyla, named after my friend's grandmother. Yes, the two babies are Isla and Lyla!

Yesterday we received the final test results that we were waiting for, from the set that Dr. Braverman ordered when we were there at the beginning of the month. It was a mix of really good news and not so good news. Here's how it shakes out:

1. I do NOT have PCOS. Dr. Braverman's exact words were, "no evidence of PCOS." So that is a big relief, not to have to worry about all of the complications (wonky cycles, sub-par eggs, etc.) that would come with that. Yay!
2. My ANA was lower, only 1:80 this time instead of 1:640 like last time. Dr. Braverman said that ANA fluctuates over time so the lower finding doesn't mean too much, and we're treating the ANA anyway with the Lovenox. But better that it's down than up!
3. I have a LOT of food allergies/intolerances. Even Dr. B was surprised at how many. I am allergic/have an intolerance to: Wheat, barley, rye, oats, rice, and all dairy products that come from cows' milk. Eating them will cause inflammation that can interfere with the implantation process and lead to early miscarriage. So I have to give up all foods that contain any of those, which is basically most everything I eat -- from now until the end of the first trimester once I get pregnant. This will be especially difficult given that I am already a vegetarian, though now I am thinking that I may have to start eating meat again (at least temporarily). I did a gluten-free diet for two months back in May/June/July, and it wasn't so bad -- I was able to replace a lot of the gluten-containing products that I usually eat with some gluten-free versions. The problem, though, is that most of the things I was eating as substitutes then won't work now, because they typically use oat or rice flour in place of wheat flour, and oats and rice are now off the list. So that is a big bummer. I have been gluten free/dairy free since last Thursday, and just took the rest away yesterday. I am already missing yogurt and oatmeal desperately. Doing OK without bread, but I am sure there will be times when that's a struggle as well. There just isn't much I can eat and I find myself really HUNGRY a lot of the time. Gotta figure out some new, easy recipes that I can make for lunches at work, snacks, etc. Even breakfast is a challenge, since oatmal or yogurt with cereal were my staples.
4. J's sperm DNA fragmentation test came back in the borderline range, meaning than a slightly higher than normal proportion of his sperm have damaged DNA. This can lead to problems both with getting pregnant and staying pregnant. We are still able to try to conceive this cycle, but they are treating him "aggressively" with antiobiotics, a lot of antioxidants, and several lifestyle changes (e.g., no more artificial sweeteners, no laptop on his lap, no sitting with his legs crossed). I think giving up protein powder/shakes will be the toughest one for him!

The last two days have been a whirlwind of phone calls to doctors, pharmacies, infusion centers, and insurance companies to try to get everything straightened out in time for my ovulation this cycle. I've pretty much got it all straightened out; Lovenox injections start on Friday and my intralipid infusion will take place next week, probably on Monday. I am surviving my 11 pills a day and looking forward to the end of the next two weeks, when we'll find out if this cycle is successful or not. Keep your fingers crossed for us!

Last set of tests complete; invisible milestone

I'm back at home after a busy five days away for the AAMFT conference in Charlotte, NC. My hubby's face waiting for me at the airport was by far the best thing I saw all weekend.

Quick update on happenings since last week: J and I have now completed all of the additional tests that Dr. Braverman ordered when we saw him on the 4th. Lucky for me (not really!), the specific day I had to have my blood drawn ended up falling on Saturday while I was in Charlotte, so my buddy L and I spent an afternoon trying to get that all figured out. With the help of an angel named Penny, we got it done. Now we're just waiting to hear back from Dr. Braverman after he has all of the results in hand, which hopefully will be the first part of this week. I'm feeling a little bit frustrated because my two doctors haven't connected with each other yet, and that needs to happen before we can move forward. With luck, we'll be able to fit all the pieces of the puzzle together this week, start treatments ASAP, and be back in the game this month. More realistically, it probably won't be until next month.

Those of you who know me well know that my brain has a special affinity for dates and numbers. Usually it's a fun party trick, but lately it's more of a torture device -- I can't not be aware of what should be happening on certain dates, especially as I get closer and closer to what would have been Ziggy's due date. Today, if our first pregnancy had continued, I would officially be "full term." It's hard not to think about what life would be like if I could go home and see a baby's room ready for a new arrival, or feel the sweet company of a tiny passenger with me all day long. I'd give anything to be huge and uncomfortable right now if it meant that I'd soon have our baby in my arms. When that first pregnancy ended, part of how I consoled myself was by thinking that by the time October 8th rolled around, I'd be solidly immersed in a healthy pregnancy, and that would make the passing of that date much easier. Obviously at this point that's not going to happen, and it's tougher than I thought it would be to be looking toward October and not any closer to being a mom than I was in March.

The backstory

Since I've jumped onto this whole blog idea ~8 months into our trying-to-have-a-baby adventure, I thought it might be a good idea to give a little bit of the background of what has happened to this point. I know many of my family and friends already know most of this, but here it is again anyway.

Pregnancy #1

We originally planned to start trying to conceive in April of 2012. We chose this date because it was just past the one-year mark after our wedding in March of 2011, and we didn't want to get pregnant in March because we preferred not to have a December baby (no offense to all of my amazing December-baby loved ones; there's just so much going on that time of year!). When January of 2012 rolled around, we decided to just give it a shot and see what happened in January and February. Lo and behold, we got pregnant that very first cycle, and saw our first positive pregnancy test on January 28th. The pregnancy was confirmed by my doctor, and at the beginning everything looked really good. My hCG numbers started off strong. We were over-the-moon excited, picturing ourselves with a cuddly little October baby, whom we started to refer to as "Ziggy."

Because I have a wonderful and very comprehensive doctor who is always willing to double check things if it will make me feel better, we were repeating hCG numbers weekly until the first ultrasound date. Well, the numbers didn't stay strong for long. They quickly went off-track, not doubling in the 24-72 hours that they're supposed to in early pregnancy. They were still increasing throughout February, but at a very slow rate.

On February 22nd, we went for our first sonogram. We would have had a sonogram at that point regardless of the circumstances, to confirm viability and to date the pregnancy. We were hopeful that we would get a pleasant surprise and see a healthy developing fetus, but instead we saw a 6-ish week pregnancy but no heartbeat. The radiologist told us that the prognosis was "guarded," that there should be a heartbeat by that point but sometimes they just show up late. We were told to come back in a week to check again. On February 29th, we were indeed back -- and this time the fetus was smaller, definitely had no heartbeat, and had a couple other signs of "embryonic demise." He conclusively told us that the baby had stopped developing and that we could expect a miscarriage. This medical phenomenon is referred to as a "missed miscarriage," because the woman discovers that the pregnancy has ended before any bleeding has occurred. Ziggy left us on March 2nd, 2012.

Pregnancy #2

After the first pregnancy, my doctor told us we needed to wait a cycle before we tried again, to give my body some time to recover. We ended up waiting two months (March and April) because I had a dentist appointment in early May and didn't want to be pregnant for that. We fully expected that the next pregnancy was going to be "the one" because having one miscarriage is pretty common. We were thrilled to see another positive pregnancy test on June 26th. Again, I skipped off to the doctor's office for a blood test, and because of what happened the first time, she wanted to repeat the hCG test just a couple days later to make sure everything was on track. The second blood was drawn on Friday, June 29th, and I should have gotten the results the following Monday, July 2nd. However, June 29th was the day of the huge "derecho" storm we had here in DC, which knocked out power to thousands of customers in the DC area for up to a week -- unfortunately including my doctor's office. So by the time her power came back on and her office re-opened after the Independence Day holiday, it was July 5th before I got my results. At that point I already knew that we were having another miscarriage, and that was over before the weekend ended. Though pregnancy #2 was definitely easier to deal with physically (since I wasn't as far along), it was also more difficult emotionally. I never imagined that it would happen again. I felt as though I had done my time in miscarriage-land and now I was on to the baby path. It was a huge crash to go from the elation of feeling truly and blissfully pregnant to learning that we were back on the other side of the starting line.

On the upside, my doctor said that because that pregnancy "never got off the ground," (it was actually what they refer to as a chemical pregnancy, where it doesn't develop enough for anything to be seen on a sonogram), we could try again right away. She was also willing to order some basic tests to try to get some insight about what was happening. Through that, we found out that I am positive for a compound heterozygous MTHFR mutation, as well as that the ANA was elevated. My OB referred us to a maternal-fetal medicine specialist for the MTHFR, and a rheumatologist for the ANA. The MFM wasn't much help, but did order some additional blood clotting tests and a karyotyping test that allowed us to rule out some other potential problems (you'll be happy to know that J is a "normal human male" and I am a "normal human female," at least chromosomally speaking). The rheumatologist basically said that the only autoimmune issue related to pregnancy loss is lupus, so she would test for lupus, but unless I had that, she couldn't really help us. Obviously, I don't have lupus, so that was a bit of a dead end (though some of the tests she ordered were helpful to Dr. Braverman and saved us some time).

Pregnancy #3

At this point I had a feeling that something out of the ordinary was going on. My mom and grandma both had miscarriages before their first successful pregnancies, but they never had another one -- so this didn't seem "normal" to me. Though we didn't expect it, we got our third positive pregnancy test on July 31st. It was confirmed by a blood test on August 1st, but again, the numbers were shaky so we tested again. The hCG was rising slowly, but it soon became clear that that pregnancy wouldn't continue either. By the time that happened, I honestly felt a little bit numb. I hadn't even let myself get excited about that pregnancy. Of course, we were sad, but we also felt like the third loss was our ticket to getting more help. In dealing with doctors, they generally see one early pregnancy loss as "normal," and two as a fluke. It isn't until you get to three that they will agree that something is going on and agree to investigate further. We are thankful that we have, to this point, been able to get pregnant relatively easily, and that we got to where we are in a matter of 8 months rather than a year and a half or two years. And we are hopeful that we can continue to get pregnant easily once Dr. Braverman fixes the issues that are inhibiting me from staying pregnant.

We are on hold right now in trying to get pregnant again, waiting for Dr. Braverman's tests to come back and for the medication dosing to start. We're hoping we'll get the green light by my October cycle.

First Visit with Dr. Braverman

So, yesterday was our big consultation with Dr. Braverman, the Reproductive Immunologist (RI) in Manhattan. I found his information online after we learned that our third pregnancy was not going to continue. He is one of only a handful of RIs in the country, a type of doctor who has expertise in both immune and reproductive issues -- and one of few doctors who can look at what has happened to us and know what to do about it. We have been looking forward to this appointment for about four weeks, which was the quickest they could get us in when I first called and consulted with him on the phone (he is a popular guy!).

We spent about an hour and 15 minutes with Dr. Braverman and he went through all of the blood tests that he had ordered ahead of time, which was great because our time was very productive (as opposed to his having ordered the tests yesterday and having to now wait for a bunch of results to come back). As he suspected, the ANA (Anti-Nuclear Antibodies) is an issue, but there are some others, too. Here is how it all breaks down:

1. ANA: My body produces these antibodies when they shouldn't, and they act by attacking the developing trophoblast cells when I get pregnant and the embryo implants into the uterine lining. Normal ANA titers are 1:40 or lower, and my most recent ANA titer was 1:640 (they double every level, so 1:640 is 4 dilutions higher than 1:40). Luckily, the treatment for this is relatively straightforward -- I'll be on Lovenox injections starting in the next couple of weeks and continuing probably through the first trimester of a viable pregnancy. Lovenox is a blood thinner, but it also acts by binding to the ANA and basically escorting it out of my body. J will have to give me a nice little shot in the bootie, which I don't think he is much looking forward to -- but I think it will be manageable.
2. HLA matches: HLA is a protein on the outside of all cells in the human body. It operates by a lock and key mechanism to help the immune system identify cells that are part of the self vs. from an invader. One of the ways that nature has ensured that the human species stays diverse is to resist allowing pregnancies when maternal and paternal HLA are too similar. There is nothing wrong with my HLA or with J's HLA, but it does look like our HLA are a little bit too similar. There are different ways of counting "matches," and the universally-accepted cutoff for HLA being a problem is at 5 matches. The way most doctors would count, we have 4 matches -- but Dr. Braverman counts a little differently and he sees 7 matches for us. It's still unclear whether this is actually causing a problem, and another test that can indicate HLA-matching issues came back looking very good, suggesting that maybe the HLA stuff wasn't a problem, at least with pregnancy #3 (my blood was drawn during the pregnancy). The treatment for HLA-matching issues is a very expensive injectable drug called Neupogen, which often isn't covered by insurance -- so we are going to hold off on treating this one and only do it if I have another loss. Dr. Braverman is confident that this is a smart course of action given all of the other factors at play.
3. Natural Killer (NK) cells: NK cells are immune cells that everyone has in their bodies and all women have in their uterine lining. Mine are a little more active then they are supposed to be (hey, I've always been something of an overachiever), but the numbers are borderline. NK cells that are "too active" disrupt the implantation process. Because it's fairly straightforward and to be conservative, we are going to treat this -- and the treatment is a blood transfusion, which will take place likely within the next few weeks. I will probably need to have several more transfusions during the first trimester once I get pregnant. The transfusion is a washed blood product that comes from a blend of blood from approximately 1,000 people. Dr. Braverman said that a nurse will come to our house to administer the transfusion, though I have heard from others who get this done in hospitals or other medical centers. Each transfusion takes about 6 hours.
4. Uterine Blood Flow: Dr. Braverman did a vaginal sonogram to check the blood flow to my uterus and take a look at my ovaries. With my uterus, it looks like the blood flow coming IN to the uterus is good, but the blood flow going back OUT (what happens between heartbeats when the blood vessels relax) is not quite what it should be. This is treated by taking Vitamin E, which acts as a vasodilator.
5. Finally, Dr. Braverman's tour of my ovaries revealed something called a "string of pearls" appearance, meaning that small, painless cysts may be present on the outside of my ovaries. This can be a sign of insulin resistance and polycystic ovarian syndrome, but more tests are needed to confirm this. I'll be having some more blood tests in the next week or so to get more insight on this. I'm not sure what the treatment is for this, we didn't really get into it with Dr. Braverman since it's not clear yet whether this is really an issue. However, when I talked to my regular OB about all of this, she said that the standard treatment is to be on Metformin (which is consistent with what I have read). 

So, where do we go from here? Well, more blood tests for me, a semen analysis for J (to check for DNA fragmentation, which will rule out genetic abnormalities in the embryo as the cause of the miscarriages), and a day 3 ovarian reserve test to make sure that I am still producing healthy eggs.

We are feeling optimistic, if not a little bit overwhelmed at the number of issues we're dealing with. Dr. Braverman feels pretty confident that he can help us, and he has a really great track record with getting women with repeated pregnancy loss to get and stay pregnant. We sincerely appreciate all of your support and promise to keep you posted.