Wednesday, September 7, 2011

First peri appointment

Dear Stevie,
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.

Love,
Mom

16 comments:

Farfromtheshore said...

You should look into local SPALS groups (subsequent pregnancies after a loss support). I'm 24 weeks along, lost my first daughter Brennan at 21 weeks to a chromosome disorder. The support group has been such a huge help! Just to be able to meet for dinner with other women who are going through the same thing is amazing! It keeps me sane :-). Praying for you and E
-Leanne

Britt said...

Okay, most of this sounds just like me! My insurance will NOT cover any injectables...regardless of the condition. I was supposed to be on Lovenox, but after speaking with my doctor about the cost she was able to prescribe the generic "heparin." It is just as effective as the lovenox, but it has a sorter "half life" so I have to do injections twice a day...but the first trimester it was only about $150, second trimester we had to double my dose so now it is around $300...WAY more affordable than $1500/month!!

I am also a bit of a ticking time bomb, but luckily my ob is amazing and is taking good care of me ande BB!! Sending happy, healthy thougths your way!

Caroline said...

Keeping you in my prayers so much. Hoping the Ins okays your script. It terrible that things we need have to be so much.

Take care

Nika M. said...

I'm glad you spoke up at your visit. So many people choose not to because they think it doesn't matter or that the doctor should already know.

Still praying for you and the little one.

Kelly said...

I'm so glad you spoke up! Keeping you in my thoughts...for a healthy pregnancy and for good news from your insurance company!

The Sancken's said...

Sounds like the plans for our pregnancies are pretty well the same. They found some slight mutation in me as well and as a precaution I am on baby aspirin [but not the Lovenox]. I went to the peri at 16 weeks and will go back at 23 1/2 weeks. As long as that appointment goes good I won't be going back to the peri. I go to the OB Doctor every 2 weeks and a sono every 4. Once I hit 28 weeks I'll go every week and when I hit 32 weeks I'll go twice a week. This coming Friday I will be 19 weeks. I have my 20 week appointment on the 16th. I lost my baby girl somewhere in the 18th week so my nerves are going crazy about now! So I know what you are going through. It is very hard. I will let you know how things are going once I get past the point of my first loss in pregnancy. I'm hoping for some relief then! Glad you kept being persistent and got all of the results to the peri. I wish you the best!!

Jen said...

Hey Kristin,
I am from the August 2010 board. Right around the time that you found out about all the things you had, I too found out the same thing. I had to take lovenox for the rest of my pregnancy - and it really wasn't easy for me. I am not sure if you can get it, but I believe there is a generic form of it, I'd ask to find out. I know there was no way we could afford lovenox either, but at the time it was different. My doctor decided for me it was better than heprain because needles & I aren't friends. At all.
I am wishing you the very best - I have been following your blogs for awhile, I just never commented before. I know there are lots of women out there that have the same things as we do, but if you ever want to chat, I'm usually around. =)
Jen

MamaE said...

Hang in there! The only thing that really helped me with my anxiety was to think about the fact that worrying wouldn't change one darn thing about my outcome. In fact, it might actually *hurt* my subsequent pregnancies. When I thought about it like that, it helped me to let go. I'm not a super religious person, but the phrase "Let go, Let God." really helped me. In other words - que sera sera. Not sure if that helps, but it helped me.

Your doc is right. The odds are in your favor. I often thought that I could use my loss as a way of reminding me to live in the moment and not take anything for granted. When my next pregnancy resulted in a really fussy baby... and I'm talking about screaming for at least 6-8 hours a day, I often used my loss as a way of coping. It helped me remember what a blessing she was even when she was driving me nuts!

Stefanie said...

My prayers and thoughts go out to you, Kristen. I hope all goes well with your new support outlets. I can't imagine the thoughts that are running through your head on a daily basis. I am glad to hear all went well with the peri.
Wishing you the best.

Erin said...

Now I understand why you wrote on facebook that you hate your insurance company - how awful! I'll be praying that you are able to get the injections covered. And you don't have to be crazy to go to a therapist. I've been going to counseling on and off for many years, and I firmly believe that everyone and anyone can benefit from counseling. I think it's a great idea to find someone you can talk to who is experienced in dealing with situations like this! I'm sorry to hear that you've been so sick again, but so glad that your appointments have gone well so far. And, as much as the reason for it totally sucks, I think it's kind of neat that you'll get so many ultrasounds - you'll get to see E develop and change before your very eyes! Keeping all of you in thought and prayer.

rebecca said...

Your doctor sounds amazing, so glad you're in good hands! And way to go on being a strong advocate for yourself and baby E! I also decided to see a therapist during my rainbow pregnancy and it really did help sort through some of my emotions and provided me a good support system, I hope you find the same is true for you and it helps to alleviate a small bit of the worry. To a certain extent there will always be some worry with this pregnancy but if you can get it down to a manageable amount it would definitely be better for you & baby. Sending love and hope your way and continuing to pray for you daily!

Harlowe said...

MamaE literally took the words out of my mouth. I just tell myself that I can only do what I can, and everything else is out of my control so stop fretting about it. Easier said than done, but I've found that it does help enough to talk me down off the edge, ha ha. Hang in there!

B. Wilson said...

Wow! I'm so impressed with all the extra care you are receiving! Since my loss was inconclusive and *possibly* and prolapsed cord issue/accident, it's really unavoidable and unlikely to reoccur, hence making me a candidate for almost no extra care other than a few additional ultrasounds.

I'm really glad you spoke up and are taking charge! While Lovenox doesn't look fun, we all know we'd run through hula hoops just to make sure subsequent babies live! Way to be a fighter! Hoping that sickness subsides, too. :)

Jenny said...

I am so so happy you spoke up! I'm glad the appointment went well and that you feel that your doctors are taking everything seriously. I'm praying for you and Baby E, and I believe everyone who's been reading since [or since before]you lost Stevie knows you would have done everything in your power to help her had you known what was going on. <3

Shan said...

You are such a good mama to both of your babies, Kristen.

Renel said...

Reading your blog for the first time and wanted to tell you how sorry Stevie is not here with you. Also I am very excited about your pregnancy with little E. I don't know if it is difficult for you to get excited but I figure I can do excitement for you. :)

My daughter died June 20, 2011 and I am in disbelief at all the mamas who have babies dying out there...it is NOT RIGHT. I wanted you to know I hear you and will be reading.

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