32 Weeks!

Another milestone down! At this point of the pregnancy, she will do extremely well if she were to be born from now til here on out! Very relieving to have made it this far! I am getting bigger by the day it seems, and more and more tired. All normal pregnancy stuff. But everything still seems to be moving along as they should. I have been feeling a lot of pelvic pressure and get a lot of braxton hicks, which is always somewhat unsettling. But from what I read, all normal things.

 I am officially going off prednisone today and hydroxychloroquine. I have dwindled down to 2mg of prednisone over the past week and I feel I am ready to completely be off of it now. The hydroxy stays in your system for like 50 days after going off and I would like it to be out of my system by the time she is here so there are no issues with it being in my breastmilk. Even though they say that it doesn't cause harm - still would like to be off of it. Less drugs, the better. Still a little apprehensive coming off of them since I have been used to being on them for so long, but I am also excited to NOT be on steroids anymore!! I just hope I keep thriving without them. But at this point - I am comfortable enough to do without.

  We are starting to receive gifts from the registry and we are going to be officially setting up the nursery this weekend. Crazy to even think about! I keep having to pinch myself that this is all really happening! These 8 weeks are going to fly, but will still be the longest 8 weeks of my life all at once. I am anxious to meet her. She is so active in there, kicks away and even has the hiccups on occasion.

   Here is the latest 32 week bump pic! I think I might topple over if I get any bigger! haha!

                                                                       32 Weeks

So that's about it! Til next time! xo
                                                                   

17 Weeks

Hello there! Yesterday was our 16 week ultrasound and everything went fantastic! She is measuring 16 weeks 6 days yesterday so that would make today 17 weeks!! Crazy!! We had an early morning appt. which I like because waiting around all day for an important ultrasound is nerve wracking in itself. So I'm happy to fight the morning rush hour to have the appt first thing. Our ultrasound tech was super nice and jolly. She made me feel comfortable as she was walking us through what we were seeing. Everything looked perfect and she's growing right on schedule. Her spine is fully closed so no worries for Spinal Bifida. And her lips and palate are perfectly formed so no worries for cleft lip! Woohoo!

   She was bouncing all over and we think she even had the hiccups! It was really sweet to watch and the tech snapped and snapped so many pictures for us!! I walked about holding practically a book of pictures! She even attempted a 3D pic even though she said they just always look weird at this stage because they are still so young. Ava had her hand to her face like "no more pictures!!" haha! They also did a transvaginal ultrasound to take a closer look at my cervix which they said looked "beautiful". I think I might have blushed! haha jk.

  Anyway, here are a few pics of my little girl:

 

I adore this little one so much already. So our next ultrasound will be the 20 week one in about a month. Technically it will be a 21 week ultrasound by the time I get there. But that's the one where they do all of the nitty gritty observation. I am nervous of course, but everything seems to be going pretty well so far so I am optimistic for the next. 

A few things we did discuss that were important were staying on the prednisone and going off the progesterone shots. Two important things that I credit mostly getting me this far. To think of going off those scare the crap out of me. It's like I am trusting my body to do it's job, when we all know very well my body can be an asshole.

My placenta is fully developed and my doctor told me she feels comfortable if I go off the shots. She stated the placenta produces more progesterone than the shots could give and that I just don't need them anymore. I am going to take a leap of faith and just trust her. It's hard for me to do that, since I am a control freak, but I really need to let go and let her do her job. So last night, I didn't take a shot...and I am on pins and needles of how well my body is going to react to that. Everytime I go to the bathroom I'm scared to death. But today, still seems good so I am hoping it just continues to go well. And man, I really am glad to not have those shots anymore. They were brutal.

The other concern is the prednisone (steroid). I am to wean off of those by 20 weeks. However, I have weaned down from 40mg to now 10mg. It's the only thing besides the hydroxychloroquine I am taking to help keep my inflammation at bay. And I am scared to go off of it entirely because if I do...I am taking a risk of inuterine growth restriction, and preterm labor which is caused by tnf and inflammation. If I stay on the prednisone - I still run the risk of both - but the risk is much lower. I also will have to take a cortisone stress shot at delivery so my body doesn't freak out. If I don't take that shot - my body could shut down and I could die. Yeah, fun. And even though I am out of the woods with the cleft lip concern that they say could be caused by prednisone, I am nervous about any other side effects it could have on her. So I have to decide if I want to take the risks and stay on it, to help give me just one more thing to tackle my inflammation issues, or do I want to go off it and take the risk that the hydroxychloroquine will be enough to maintain everything. Clearly I have a big decision to ponder. Not one I am taking lightly. I will let you know what I decide. 

Lastly, I finally let the cat out of the bag at work today. Several had grown suspicious because I am starting to really show - and I knew I couldn't hide it much longer. So now that it's out, it's kind of nice to have everyone's support and also be able to wear normal "non baggy" shirts. Haha. I can finally show off the bump with pride. 

Everything is still very exciting but still very scary. I am reluctant to let myself get too invested because I am trying to keep one foot grounded since we still have a very long way to go here and so much can go wrong at any given time. I hate being that way and it sounds so negative especially after such a great news day yesterday. But that's just my jaded history refusing to let me forget just how fragile this situation is as much as I would love to. 

So I will continue to just take one step at a time. Day by day. And hope all ends on a happy note. 

xo

Updates!

I have some good updates and some not so good updates. First off, with the good! I went in for my third beta today and it is at 808!! That is excellent and they are rising perfectly! ALSO - the brown spotting has stopped since last friday! My doctor thinks perhaps it was implantation bleeding or progesterone. So alllll is good so far! I am 4 weeks and 2 days today - so this week is insanely crucial as I have never passed the 5 week mark except once.

  The bad...I got my follow up NK results and looks like my levels are still elevated. My doctor really wants me to do IVIg but I just cannot afford that! I have also done a lot of research as of late regarding NK cells/high tnf and I have learned that NK cells need to be determined through uterine scraping/ not by bloodwork. Because everyone has NK cells in their blood - it's normal! Anyway - without getting into too much depth with it all - I am not really convinced that the NK assay tests I've been doing are proving much. I tweeted to Dr. Braverman on twitter - and he actually responded to me. He stated if the levels are not done by serum - they are worthless. He said intracellular tests show and prove nothing. So I am at a loss. But after researching other women in the same boat as I am - they seem to get along fine with just a higher dose of prednisone. So I asked my doctor to up the dosage to 40mg a day. Which she agreed.

  So I will take 40mg a day to hopefully keep things suppressed enough to not interfere with anything. And by the grace of God - it will work. I am no doctor - and I could be taking a huge risk with all of this by "self diagnosing and self treating" myself through my own private research. But I just am not comfortable doing a blood transfusion treatment that costs a ridiculous amount of money and isn't guaranteed 100% to even work!! Maybe I am wrong - and if all goes wrong - I will give it a go next time. But I am praying in my gut that I am making the right choice by sticking with the treatment plan I am currently on - and by upping the steroid dosage. I guess we will see.

But enough of all that....I am taking this one day at a time. And today, things are POSITIVE. 808!!! Grow baby grow!!!!!

Results.

****Update: I spoke with my dr. and she is going to up the ante to 20mg of prednisone daily. So that should hopefully help with the inflammation. She also again advised I do the IVIg treatment pending a positive preg test. I am considering it. I just don't want to fuck around this time. I am tired of going through this crap month after month. So I may just suck it up, go into debt and see if it makes a difference or not. We will see****



Well, not the news I was hoping to hear. Got my TNF results in and my levels are still up.

TNF: 37.0
IFN: 23.4

My IFN level is up too, so I don't know what that means. Guess more inflammation for me, yay.

This is why I didn't want to retest, because these levels stress me out. I wrote my doctor letting her know the results (I called the lab this morning to see if they were in). I know she probably is so irritated with me that I do my own work when it comes to this. But honestly, she should be happy - I'm essentially doing her job! lol. I do all of the research/work and she just authorizes the medication. If I sat and waited around for them to contact me with the results - I would be waiting until next week. My old nurse sarah would be kind enough to email me the results once they came in...but she no longer works in that office. Now I have a bitch nurse I have to deal with that won't do those things. I have to come into the office and meet with the dr. to discuss things I already know - on top of paying a $40 co pay. It's bullshit and I am really getting fed up with this office.

Anyway, hopefully my doctor will respond and give me a higher dosage of prenisone. Hopefully that will help with the inflammation issues I clearly have. I am really bummed that I have been on the hydroxychloroquine for 3 months now and it hasn't lowered my TNF yet. I was really hoping that this drug would be my cure for that - and to spare me more aggressive treatment such as humira (which I am not thrilled about taking since it can open the door for cancers and such) as well as the super expensive IVIg treatment. But now I'm thinking I might not be able to get off the hook with that.

  Anyway...I should be ovulating tonight. I got my round of Intralipids yesterday and I think I timed it perfectly this time around. We have been DTD all week and will go again tonight on onward until I am sure I ovulated. No messing around this cycle.

If I do happen to get pregnant and still miscarry - it's off to see Dr. Braverman, Reproductive Immunologist in NY. He is the top Immunologist in the country and many people across the world go to him. NY isn't too far away and it will be worth it to work with someone who claims to have an 80% success rate. I am eager to get this sorted and after a year of trying with my doctor - shit just isn't working with her. Well - maybe it will - it's to be determined how this month goes still. But if not...buh bye to her and that practice.

Anyway - tick tock goes the clock....hopefully this month will be our month and will be the start of a new beginning for us. I am going to keep positive despite the bad news of the levels today. Stress doesn't help matters...so I am going to try my best to not stress out. Easier said than done...