I had my first appointment with the Perinatalogist yesterday. I'm not sure why, but I was really nervous about it beforehand. Maybe because I was worried I wouldn't ask the right questions, or would leave and forget everything they told me. I feel such a responsibility to make sure everything that can be done, is done to keep your new little sibling safe. I know I am his/her only voice, his/her only advocate, and I just want to get it right this time around.
As soon as I met the new doctor, I liked her right away. She started things off by saying how sorry she was that you died. When going over the pathology/autopsy report from last year, she always referred to you as "your daughter," which I really appreciated. She said she is pretty confident that the blood clots in your umbilical cord were in fact what caused your death. I had never heard this before, but she also said there was a large clot underneath the placenta, which she believes may have actually caused the cord clots. She said this could have been just a random occurrence, or could have been caused by the blood clotting disorders I have. Since there is no way to tell that for sure, they are moving forward as if it was the blood clotting disorders were the cause.
So all this time, she's only mentioned the MTHFR clotting disorder, not the PAI-1 thing I knew I also had. So I said, "I think I also have another one of those disorders. PAI-1 or something. I'm not sure what it stands for." The doctor paused and looked through my chart and lab work before asking, "are you sure? I'm only seeing information about the MTHFR mutation." I was like, "I am 100% sure my doctor told me I have this other blood disorder too." So the doctor was really confused and stepped out to call my regular OB's office. She came back a few minutes later and said, "your doctor's office said they sent over all your labs. Are you sure you had a full blood clotting panel done?" I said I don't know exactly what tests they ran, but that they took 10 vials of my blood in June, 2010, and shortly after I was informed of the MTHFR and PAI-1 thingys. So again the doctor leaves to call my OB's office one more time. I could hear her outside the room, saying, "well my patient here is pretty certain she had more labs run than what's in her chart here..."
Finally, she said my OB's office did find the additional lab results that were not sent over with the rest of my information (who knows why??), and would fax everything over right away. At this point, I was obviously annoyed, but mostly just glad that a) I spoke up when I felt like they didn't have all the information they needed and b) that this new doctor believed me and kept bugging my OB's office until they sent everything over.
Once the tests were faxed over, the doctor returned with like 30 pages of lab results. Ironically, according to her, the particular type of MTHFR mutation I have (apparently there are many different kinds...) is not even associated with clotting. BUT the PAI-1 mutation that wasn't even in my chart IS a clotting concern. So it's a really good thing the doctor saw that, otherwise she would not have recommended as much treatment/monitoring as she ended up doing.
So what's the treatment plan? I am supposed to start 40mg Lovenox shots this week (side rant: we'll see if I actually can, since my insurance still hasn't approved them 9 days after trying to fill the prescription, and without coverage they will cost $1,600/month, which I simply can't afford right now...don't even get me started on how pissed off about this I am!) I was also advised to stay on the baby aspirin as well. I'll be seeing my regular OB every 2 weeks for ultrasounds until 19-10 weeks, when I'll go back to the Peri for a level 2 ultrasound. Then another one of those at 24 weeks, and then starting at 26-28 weeks, I'll be going in for weekly growth ultrasounds and doppler flow studies (monitoring the placental/cord blood flow). During this time, I'll also still be seeing my regular OB for normal check-ups and all of that.
After I hit the 20-week mark (assuming I get that far!), it's going to get very busy around here!
During the appointment, I think the doctor could sense that I am really struggling with anxiety with this pregnancy. I kept referring to myself as a "ticking time bomb," meaning I worry all day, every day, that this baby is going to die, without warning, just like you did. The doctor suggested that I get some "support" from a professional, and recommended a therapist who specializes in pregnancy complications and pregnancy after loss. I think I am going to give her a call because I am getting to the point where the worry and stress is making it hard for me to function, and that's obviously not good, or healthy. Part of me feels weird about seeing a therapist because I don't like thinking of myself as 'crazy.' But I know that while what I'm feeling is normal, there is no shame in seeking help to get those feelings under control.
I was also able to tell the doctor all about Faces of Loss, and she was really impressed and interested in getting information about it to pass along to patients. She also mentioned that because I am so involved in the organization, and am so surrounded by loss because of it, it's no wonder I am so worried all the time. I am just way too aware of everything that can possibly go wrong in a pregnancy. Not only am I concerned about what happened to you happening again, I'm scared of the millions of other complications I now know about, too. The doctor said in a way, she can relate, since her entire career she's only dealt with 'difficult' pregnancies. It's hard to remember that 90% of the time, pregnancy is a wonderful, beautiful thing that results in a happy, healthy baby. I have no intentions of stopping my work with Faces, but I have had to stop reading the stories, at least for right now.
Okay, so this is like the longest, most boring post ever. I guess I will wrap things up by saying overall I feel good about how the appointment went, and the treatment plan going forward. Although part of me wishes I could just be knocked out and strapped to monitors 24/7 until March, I really feel like my doctors are taking my concerns very seriously and doing everything they can to ensure a happy ending this time.
I love you, Stevie. I hope you know I would have done all this and more for you, too, had I any idea you were in danger. I miss you so much.
2 hours ago