10 February 2012

to answer the questions...

Yesterday I really swam in it. Not just a dabble here and there, recovering quickly. Nope, I dove right in head first and wallowed around until my fingers were all pruney. Not an actual swimming pool mind you, I was merely swimming around in my own self pity. If there was ever a pity party, yesterday was it.

Let me back up a little bit. As everyone knows, I am pregnant. I am beyond thrilled with that fact. Not that I can say we struggled with fertility by any means, but it took about 6 months for us to get pregnant. And there was a miscarriage in there as well. So when the test was positive, I was a bit hesitant. After all, it was positive before. But then I started throwing up uncontrollably and I just knew- yup this is it. Pregnancy and vomit go hand in hand for me.

About week 12 I started getting itchy. I had heard that it was a pretty common pregnancy side effect and whilst I never experienced it with Eleri, I figured each pregnancy was different so that must be it. By week 14 it was unbearable. A deep, under the skin, can not be controlled, big, blotchy welts that kept me in tears for hours kind of itch. Yeah, it was miserable. I went into the doctor who, while kind, basically said its pregnancy- can't do anything about it. As I was leaving the office he called me back and said that there was a rare condition that pregnant women can get around 30 weeks that evidences itself through itching. He said about 1 in 4 million pregnant women get it and the chances of my having it, especially at 14 weeks were slim to none. But, since I was so miserable he would do the blood work just to check. Through my tears I said ok, anything!

The results came back two days later. I had the condition. Because I am just that awesome. What the tests showed was that I have a rare, advanced form of cholestasis. Basically it means my liver is not functioning. Toxins go straight to my baby, nothing gets weeded out. Along with some other complications that I have, the doctors have explained it to me in thirds. One third of a chance that my baby will be totally fine. One third of a chance that my baby will be born with birth defects such as blindness, limited brain development or organ problems due to toxins etc... and One third of a chance that my baby will die. The thirds only last until 30 weeks. Then it becomes an 80% chance that my baby will die. After 36 weeks the chance jumps to 90-100%. It is not a terminal pregnancy because there is a chance that everything could be just fine. But when it is spelled out, the chances dont seem really great.

To jump around for a moment and back up ever further, when I was pregnant with Eleri the doctors in the UK found cancer. It was spreading and they were concerned that it had, or was in the process of, spreading to my groin glands and then on to my liver. I had several operations and treatment and was put on the waiting list to have my liver checked for cancer. But as the government run nationalised health care system moves slowly- I am still on said waiting list.

Fast forward back to this pregnancy and the condition I now have is either just random or caused by a malignancy. My doctor knew of my past run in with malignancy so.... it all kind of went crazy after that. I was classed as 'high risk' for my pregnancy. I was referred to a specialist. And it was assumed that I had liver cancer. Tests were scheduled, doctor visit after doctor visit, scan after scan, and more blood draw than I would have thought possible- it was not a really fun few weeks.

The real low point was when a specialist suggested that I terminate the pregnancy to fully address the cancer issue. The fetus was making full testing inconvenient. I responded that sometimes my two year old is inconvenient to me, but that doesn't mean that the best solution is to have her killed. At this point I was 16 weeks, I knew the baby was girl, she had a name, and because of the intense ultrasounds we had some amazing pictures of her. There was no denying she was a child. And there was not a chance that anyone could ever convince me to kill her.

As it turns out, the testing they could do was sufficient. I do not have liver cancer. I never really felt like I did, but because it was a lingering issue from the UK, it was nice to have it fully checked and out of the way. And with that out of the way, other things could be addressed. Like the cholestasis.

The specialist I am seeing has never heard of someone having it so early. She has mentioned that even in the national and international research, they have never heard of someone getting it so early. They asked to do a case study of me. I have to take medicine twice a day, which is suppose to help with the itching and with the baby. But, as the doctors have mentioned on numerous occasions, they "have never heard of someone" taking the medicine for so long that they have no idea the side effects to me or baby- but they recommend I keep taking it. Aside from the medicine, I am tired all the time. Think first trimester tiredness multiplied times 80. Then add 5 billion. And because of the nature of the condition, I am constantly at the doctor. I have to be monitored every other week until I hit 28 weeks. At 28 weeks it is every week. And if the baby seems to be in distress any time from 28 weeks on, they will take the baby. I can also go no further in my pregnancy than 36 weeks, due to the heighten chance of 'still birth' No matter how it is said, it still sounds crappy. No discussing of birth plans for me, I know exactly how it will all happen.

When people ask me my due date I say May 6. Which is technically a lie. My baby will be delivered, most likely by c-section, the week of May 7- 11. I am 36 weeks on the 6th, which is a Sunday. Assuming everything is going well, I can have the baby any day of the following week before I hit 37 weeks. I am thinking the 7th or the 9th. Why? Because why not. I am not due until June 3rd. But when people ask how do I explain the situation? How can you sum that up? So I don't, I just say I am due May 6th.

And I don't tell people. Not because I am trying to be extra secretive, but because really, how do you tell people that whole story? And when people ask how you are- how many really want to know? So it is easier to avoid it. Or deny it. As seems to be the case with me more often than not. I push and push and go and go, pretending that nothing is wrong until I crash. And then meltdown.

Which is where I am now. I have an ear infection and potential sinus infection but can not take antibiotics with the other medicine I am taking. In fact, I can take nothing else with the special medicine. I have been advised to wait it out and see if it clears up on its own. Not fun waiting out an ear infection, let me tell you. If it doenst clear up then in a week or so I will have to stop taking baby medicine to take antibiotics and then go back to the other medicine. But again, that is not recommended.

I am also recovering from minor surgery. I use that term loosely because although the doctors called it that, I can hardly class what I had done as surgery. On Wednesday I went in to have spots removed that were melanoma. Apparently my pregnancy hormones and cancer go really well together. There have actually been some fascinating studies on the links between breast cancer and skin cancer and pregnancy. Interesting reads if you are ever curious. Anyway, so I had that done on Wednesday and am now uncomfortable with random stitches in my body. Stitches are not cool.

And yesterday it all became a little too much. To say that I had a pity party is putting a pretty face on the situation. I was ungrateful, selfish, mean and grumpy. I burst into tears and whined to Rhys about how I just wanted to be normal. I wanted to be excited about nursery decorations and painting and instead I wasn't even well enough to clear out the mess of boxes still in new baby's room. I complained about being so tired all the time that I couldn't do anything. And now, on top of everything, I have stitches. And then it got worse. To feel even more sorry for myself, I reminded Rhys that in two weeks when this set of stitches was healed and I could do things again, I had to go back in and have even more. Oh woe is me!!

Never mind that fact that I am able to actually get pregnant and carry a child. Never mind that fact that I am in a place where I can see excellent doctors and receive the care I need. Never mind the fact that I have a nice house to live in while other people are literally starving on the street. Oh no, that is not enough. Apparently it has to be perfectly decorated right now to make me happy.

I ended up swimming so much in my own pity that I fell asleep exhausted.

I woke up today tired, still feeling sick and with a sick child. E has a fever and is throwing up. Poor thing. But my attitude is better. I feel blessed for the things I have instead of whining about what is different. But I also woke up with a lot of questions. In my post yesterday I causally mentioned that I had stitches. In a previous post I mentioned 'complications' with this pregnancy. In my inbox and on facebook I had several questions from friends asking what it was all about. So this it is. This is what it is all about. On most days I am totally fine with everything, because in the grand scheme of life it is not that bad at all. But on some days- like yesterday- I just want to sit down and have a good whine about it all. And I suppose that is ok too. (in moderation folks, in moderation)


Anonymous said...

you are so brave. and so wonderful. all they thoughts you are having i have had (on a much different scale mind you)- "I just want to be normal." the feels of talking about your pregnancy or not. making plans or not. losing a baby (mine at 20 weeks). trying to act like it didn't happen. not being certain of having another. being told how and when things will happen. suck suck suck. but as you have said....suck in the midst of so many blessings.

i can't offer much but please know NC was born at 32 weeks and is a bouncy healthy two year old. i hope your sweet girl gets there and even further. please know that talking about it is okay and people want to listen to the whining. in fact, that's when you will hear the "i went through that too"--stories you never knew about people and those will help you feel stronger. -Leah

Hannah said...

I am so sorry for you!!! You are brave and I know you said you had a pity party yesterday, but your attitude overall seems impressive. Just wanted to let you know that I will be praying for you and your family and the little one on the way!!

Anonymous said...

Kristina, I'm humbled by your attitude and the posture you've taken about this. And inspired to do the same when shit hits the fan. We know God is in control, but it's when this stuff happens that it gets tough and when I start to wonder about how it all works. I am praying for a lot of support for you, and for this to further unify you and Rhys - I'm not sure why this has come to me but these will be my prayers for you.
You're being lifted up!,
Shannon Finer

The Bishop's Wife said...

Thanks for sharing your heart with us. My heart is heavy for you. I'm praying for you and little Lowri.