Trying to hold ourselves together and find our new normal after loosing our precious twin babies at 20 weeks to HELLP Syndrome.
Baby Boy A and Baby Girl B, conceived after 20 months and IUI plus injectibles; born still on November 12, 2008.

A blog about pregnancy loss and infertility. And whatever comes next. A blog about hanging on together and holding each other up.

Friday, February 13, 2009

Test Results - Part 2

First, thank you all for your sweet words yesterday. It was such a joy for me to share our sweet babies with you.

On the test results front, it seems that no news is – well – no news. I feel so deflated right now, that’s the only way to describe it. Dr. C. was kind as he always is, but I just had so built up this appointment in my head, and it was horribly anticlimactic, to say the least.

I just don’t understand why doctors are so hesitant to give educated guesses. I mean, we don’t go to them for guarantees! I feel like I’m being underestimated – like they don’t trust me to realize that their opinions are just that. But I go to them because they’ve seen this stuff before and I'd like some thoughts on what normally happens. But anyway.

He wouldn’t give us any numbers. Wouldn’t give us any rates of reoccurrence. Despite the fact that my clotting disorder blood tests came back negative now, they were positive while pregnant, so he still feels like the clotting disorders were the root of all this evil.

He said he wouldn't tell us to not try for a family based on my history. (Now, if things go wrong again, then . . .?? Great.) He thinks that if I have a single pregnancy, and if I’m treated with Lovenox, I should have a “successful outcome.” Or maybe he said “an outcome you’ll be happy with.” Something like that.

I tried to pin him down on that – “what does that mean, like, I’ll get to viability?” He said no, better than that. He said that we "should be able to get the picture that we have in our head of our child in kindergarten." O-kaaay.

I tried to get an idea of what the pregnancy would be like. I said, “you know, my bosses will freak if I tell them I’m pregnant again.” To which he responded, “Well, you know, its just a job.” To which *I* responded, “Yes, I know. And B and I are willing to do whatever we need to to make this happen. But I’d like to be prepared: I mean, if you’re telling us there will come a point where I’ll have to be in here every day or in the hospital or whatever, I want to be prepared for that.” To which he responded . . . well, did he even respond? I think he said something like, “no, that’s not what a ‘positive outcome’ looks like to me.” Fine.

I know he can’t give us guarantees. But freakin give us something to go on here! If I’m going to be out of work, we can’t afford the house. That’s fine, we’ll sell the house – just let me know. If we’re going to have a preemie who will be in NICU or can’t be in daycare – again, we’ll be thrilled and will make it work, just let me know. Just let me know if these things are a real enough possibility that it makes sense to plan for them. If it doesn’t happen, even better, but just let me know.

(*I'll* gilve you a guantee, and that's that I'll have high bp if I'm pregnant again, even though I never did last time! Two days ago my bp was 107/73 - today, it was 124/82. Anxious much?)

Ladies, I know everyone's medical history is different, but if you've been through something similar, how did your "going forward" appointment go? How would/did you emotionally and practically prepare?

Oh yeah, and we also asked about Baby B’s heart. He said that since it was most likely a structural defect there’s a 4-5% chance of reoccurrence and that they’d watch very closely for that. Finally. A number. Scheeze :)

Wednesday, February 11, 2009

Test Results - Part 1

I don’t even know what to say. Here’s some background. I may have insinuated this in my last post, but I don’t remember and I’m in no mood to read it again. But here’s how it happened:

I’m in the hospital. The great and powerful MFM Dr. C - and I say that with all seriousness and no sarcasm, we love him! – anyways, the great and powerful Dr. C. is confused. Completely stumped. The source of his confusion? Me. Never had he seen a case of HELLP this early and this severe. Even with twins, which would exacerbate the condition, this was extreme. I was an enigma. (Yeah, now you know why its been such a help for me to find community with you ladies – my doctors made me feel like a freak!)

Anyway. He starts searching for answers. They’re running a bazillion blood tests. He’d been on the phone with the head geneticist at Mayo, and wants to send my blood up there for some hoody doody workup - but we held off because he learned that the $23k price tag wouldn’t be covered by insurance. (Are you freaking kidding me Dr. C.?)

Then the results for the clotting disorder tests started rolling in. Lupus Anticoagulant – positive. Great. We have an answer. Dr. C. was pacified. Mayo was put on hold and we called in a local hematologist, Dr. D., instead. Then more tests results came in. Now, anticardiolipin antibodies igm – also positive. As I treated with Dr. D. I learned I also tested positive for homo MTHFR. And something about Protein S was mentioned in passing.

I was on Lovenox for almost FOUR WEEKS. The cumadin wouldn’t work. My blood was t-h-i-c-k. I was definitely a clotter.

So, I go back today to get the results of my retest and confirm my diagnosis, and what do I hear?
Lupus anticoagulant – negative
Anticardiolipin antibodies igm – negative
Protein S – marginally deficient. ("marginally" as in 70 is normal; I was 69. Seriously?!)

So, Dr. D. was rejoicing. And I was crushed. Crushed. I had said that I didn’t know what results I was hoping for, but it seems I lied. I wanted everything to come pack positive – then we would at least have a theory as to why everything happened, and we would have something to treat next time around. Now - ? What do we have? I don’t even know.

So, I tried to ask Dr. D. some questions. I asked him – “Sooo, what do you think happened?" And I think (keep in mind that the brillance is communicated through a heavy Egyptian accent) – he said “Yez, you haad de Lupus Anticoagulant, but eet was transitory.”

Transitory? What? Like it comes and goes? That doesn’t make a ton of sense. So I asked, “Sooo, since I had it – did I have it because I was pregnant, or was it just a fluke?” To which he responds (I think!) – “A floouk.”

Are. You. Freaking. Kidding. Me? It just does not make sense to me that someone (i.e. me) can be such a freaking enigma because of a fluke.

In non-clotting news, I finally am getting my red blood cell count back up! However, my iron is super low. Low as in he wants the measure of whatever they measure to be 100 – and I’m at 16. And its been steadily dropping for the last three months.

He said he’s not super concerned because my RBC is going up, and it takes iron to make that happen. I get back and consult Dr. G.oogle – yes, to my surprise, “anemia” is defined as iron deficiency and a lack of RBCs. Who knew? (Well, you probably did, but I didn’t. I just thought it had to do with iron.)

So, I’m thorougly frustrated and thorougly confused. And I'm terrified. To me, the apparent lack of underlying disorders just means that my body completely freaked out and hated being pregnant. I don't know if that's true or rational, but that's what's in my head now.

Thank you all for thinking of me today. We're hopefully going to be able to meet with my MFM Dr. C. on Friday, and I just pray we get some answers then. In the meantime, if anyone makes more sense of all this than I do, please feel free to share. Ya’ll are the best :) (And yes, I said ya’ll.)

Oh yeah, and I am glad I’m not at high risk for strokes and stuff, but that’s really taking a back seat in my mind right now! (Although - wonder if my OB would put me back on the pill now?? Humm. . . .)

Tuesday, February 10, 2009

November 10, 2008

There are two dates every month that make me catch my breath: the 10th and the 12th. November 12th was the day our babies were born still. But November 10th was the day it all started falling apart. The 10th is the day that I clearly remember, that I replay in my head over and over. . . after that, it’s all a bit of a blur. Today marks three months from the 10th.

I know this post will be lengthy. Feel free to skip it (but come back tomorrow!) But the memories are so clear in my head, I have to write them out. . .

November 10 was a Monday. We had spent all weekend cleaning out the office-to-be-nursery. B put the cribs together. We stood back and looked at the room and the two cribs together and just said: “Wow! We’re having twins!”

Monday morning I went to court to argue a motion. I was wearing my favorite black pantssuit and red heels. And I won. That afternoon we went for our “big” ultrasound at our MFM’s office. They looked at and measured every perfect inch of our tiny babies. For over an hour B and I watched them and talked to them, and fell more in love with them.

Baby A looked perfect. But while looking at Baby B, the tech said she couldn’t get a good picture of her heart. She called in one of the MFM doctors, who agreed that she couldn’t get a good picture, but seemed to think there might be a problem with the left side of her heart. She scheduled us to come back in one week and retest; hopefully it would be easier to get information at that point. Baby B was smaller; maybe it was just too early to see well.

The doctor also asked for permission to rerun our amnio test for Baby B. She thought that Baby B’s heart problem (if there was one) could be a sign of the generic condition DiGeorge’s Syndrome – a condition illustrated by heart defects and small stature. While she still hoped that everything was fine with Baby B, we discussed that, if the next ultrasound did not show anything different, we would have to meet with a pediatric cardiologist. Baby B would likely need surgery immediately after delivery.

We went from the ultrasound to my OB’s office, where we continued to discuss the ultrasound. After about 30 minutes, my OB switched topics and said that I was spilling protein in my urine. "Do you have an infection?" she asked? "Anything going on?" "No, no" I said, "Nothing that I haven't already told you." She wanted to do bloodwork "stat." We said okay and didn’t think much of it. B and I didn’t know anything about protein, except that I was supposed to eat it! As we were leaving I did stop to ask her – was any of this related? “Humm, good question,” she said, almost thoughtfully. “I don’t think so.”

It was near 5:00 by the time we left my OB’s office. I remember calling my mom as I pulled out of the parking lot: “Mamma. Try to not freak out. And I don’t have any answers. But they think something’s wrong with my little girl.” And as I was saying those words, I saw the lab car pulling in the parking lot to pick up my blood samples.

I went home and changed. Black yoga pants and a yellow hoodie now. And we started making supper – steak fajaitas. Around 7:00, we were about to fill our plates when my OB called.

She said that my liver enzyme levels were up and my platelet count was down. She wanted me to go to the hospital that night so they could rerun the tests and monitor me for “a few days” – or at least long enough to do a 24 hour urine test. This was all gibberish to me – I’d never heard of enzymes or platelets before – but I knew she was looking out for me and my babies so I went along with it. She said to just go triage and they would decide where to put me. She had a c-section at the hospital that night, and she would check in with me once she was done.

I tried to eat our dinner and help B clean up the dishes. But I did understood enough to be flustered. So he cleaned up while I packed my bag. I packed my makeup, my straight iron, some comfy clothes, a book. . . B said he would go to work for me the next day and pick up some files. As far as I was concerned, I was checking in for a few days of rest and relaxation.

As I was packing my bags my mind necessarily went to the “worst case” scenario. The worst case I came up with would be bed rest – perhaps even hospital bed rest – for the remainder of my pregnancy. That was a looong time, and the thought was terrifying to me. I would go crazy. We’d go broke. If I had to stay in the hospital, how would I get to see enough of B? We spend all our time together. And what about the holidays? . . . . But, I bargained, I would absolutely do any of it, with a willing and happy spirit, if Baby B would just be okay. I knew one thing probably had nothing to do with the other, but bargaining’s never rational. Besides, I was focused on our babies. Particularly Baby B. Potential bedrest – well, that would be my burden to bear. Just so long as the babies were okay . . .

We got to the hospital around 8:00. At some point my OB must have mentioned preeclampsia or toxemia to me, because the nurse at the desk kept asking me why I was there (even though she was supposedly told to expect me), and I didn’t know anything to say other than “suspected toxemia or preeclampsia.” She didn’t like that answer; she wanted an actual diagnosis to put into the computer. I told her I didn’t have one.

We waited and waited, and were finally admitted and in our room sometime after 9:00. I joked with the nurse about how I was finally going to get to catch up on my leisure reading. I'd been resisting reading T.wilight, but this seemed as good a time as any to start.

We were in a Labor and Delivery room, although I didn’t think anything of that, and the first nurse came in around 9:30 or 10:00 to put in an IV port. She said it was just so they didn’t have to keep sticking me; they could use the IV port for everything. Imagine my surprise when the tech came to take my blood and she stuck me again! All I knew at this point was that they were going to rerun the tests that were conducted at my OB’s office to make sure the results were right.

Sometime after 11:00 I convinced B to go home. He had to work the next day, of course, and I preferred that he be at home with the kids (our four-legged ones) anyways. He made me promise to call him if anything happened, no matter what the time, kissed me and went on his way.

TO - there's no words
Not more than a few minutes later my OB came in. I had just been digging in my bag for my book and was settling down to read. She asked where B was. I said that I had sent him home: “Why, do you need him?” She said: “Yeah, I do. Can you ask him to come back?” So, I called B. He didn’t ask any questions, but just got in the car and was back in minutes.

My OB came back in. The nurse was with her, as was someone she introduced as Dr. C. with MFM. That should have told me something right then: it was midnight, and one of the best doctors in Na.shville was in my room in a mock turtleneck. Things were bad.

Dr. C. said that I had HELLP Syndrome, which was very serious, and the only way to “cure” it was to deliver the babies and placenta. I looked him calmly in the face, gave a half-laugh and said, “Well that’s not good!” I thought he meant we’d have to deliver early and they’d be premature.

He kept telling us how serious the disease was, and finally they said that they would leave us alone and give us some time. That confused me. When they left, I finally looked at B and it hit me – they want to take our babies now! Oh my gosh, that couldn’t be possible – it didn’t make any sense at all! The doctors came back in and I started arguing. Actually, those who know me would expect me to argue. But it was more like I was pleading, grasping at straws.

I was just 19w2d at this point. I asked them to please just keep me here in the hospital for a few weeks, I promised I’d be a good patient! Dr. C. explained that my liver and kidneys were shutting down. He tried to be gentle. He tried to be soft with his words. But we weren't getting it. I just kept shaking my head back and forth. I would do what it took to save these babies. I remember thinking, "Hey! You say my liver's not working - but isn't that what dialysis is for?!" There has got to be something we can do!

Finally Dr. C. said: “You’re dying. Your organs are shutting down. You will not live five weeks." In other words - "You will not live long enough to give your babies a chance.”

It didn’t make sense, I had just happened to have an appointment that day. There had been no signs or symptoms! B and I weren’t buying it. “What would have happened if we hadn’t happened to go to the OB today?” B asked. Dr. C. responded: “Within 48 hours she would have seized or hemorrhaged.” When it strikes early, it progresses quickly. He said: “There is nothing you can do.”

Moving on to practicalities, I then tried to get them to let me go to work the next day and get my files in order. “I’ll come back tomorrow!” I promised. They just shook their heads at me. Then I tried to convince them to do a c-section. The thought of having to deliver terrified me. Labor had always terrified me anways, and I could not experience that, go through that, knowing what would be the result. But a c section was dangerous considering my propensity to bleed and hemorrhage, and it could potentially scar my uterus.

They left us alone again. It was probably 1:00 in the morning by now. And I just – I don’t know what happened. I didn’t freak out, I don’t think. I remember crying, but I wasn’t hysterical. I was just so tired. I just wanted to curl up with B. They kept asking us if they could call anyone. “No, no.” we said. “Its just us.” Why would anyone want to come in town for this? But I did call my mom (who of course promptly collected my sister and began the 3 hour drive). All I said was: “Mamma, I’m sick. And they want to induce me. I've gotta go." After my call earlier that day, she must have been so confused.

Finally the doctors came back in. They must have been able to tell we’d finally been defeated. I climbed back in bed and got under the covers. And they began the magnesium drip to try to prevent a seizure. They put me in compression stockings to prevent a blood clot. And they gave me drugs to induce labor. And the wait began.

My blood pressure was spiking dangerously. There were issues with my pulse and oxygen levels. I wasn’t allowed any food or liquids. The magnesium made me weak and I wasn’t allowed out of bed. My red blood cell count was dropping and I was severely anemic. They were worried about a pulmonary embolism, and brought in an x-ray machine to look at my lungs. Whatever was going on with my kidneys and liver. And something about my heart and calcium levels? Who knows. . .

The doctors didn’t see any chance of an epidural because my platelets were so low. No one had told me this. They offered me demerol for the pain, but it made me nauseous. Finally, with lots of steroids, my platelets rose enough that the anesthesiologist agreed to an epidural.

And B just sat by my side and kept hitting that epi button. Just kept trying to make it all go away.