Pages

August 12, 2010

TEAM PINK

Well, since hot-diggity-blog decided to do away with my old blog wallpaper, I thought I'd ring in the new blog settings with TEAM PINK.

Yes, that means we're having a girl.

I apologize for not making the announcement sooner. You see, Troy and I decided that we'd jump into this other business venture, not realizing that we were already busy up to our eyeballs. In hindsight, we both should have picked up a new hobby.

At any rate...it's totally a girl (after two ultrasounds - I hope they were right) and I couldn't be more happier. Not because it's a girl, because I would have been happy with a boy too, but now I can sit and imagine what she's going to look like with woogies (what we called "pigtails" growing up) and not feel the least bit bad about it. You see, I knew all along it was a girl. And I would lay awake at night and imagine what she'd look like in dress...with bows in her hair...what it would be like to go get our nails done together...and then Troy would start snoring and I would suddenly be startled by the realization that it MIGHT just be a boy. And what if it was. Would I feel guilty for always imagining him as a girl???

Well, now I don't have to worry about that.

But, what I do have to worry about is this stupid thing called neonatal alloimmune thrombocytopenia (NAIT for short). It's something my nephew had, lovingly passed down to him by his mother. I've posted alot on Facebook about my six hour waits at the high-risk OB's office, my multitudes of needle sticks, and my general dissatisfaction with receptionists and office managers who are beyond incompetent. But, I've posted little about what NAIT really is.

So, here goes. HIPPA violations and all....

Basically, you have all these human platelet antigens (HPAs) running around in your body. Some good. Some bad. But they are all there for a reason. The HPA-1 can take various forms ("a" or "b", "homozygous" or "heterozygous"), but for the sake of our discussion, we'll just be talking about whether they are negative or positive. Most people's are positive. My sister's are negative. Very rare. Less than 2% of the world is negative on the HPA-1. The sperm donor (let's call him what he really is) of her child was positive. Not so rare. When she got pregnant, she and the donor both passed their platelets to the new baby (his name is Pete). So, he had positive HPAs and negative HPAs floating around in there. At some point, a very rare thing happened....some of the positive platelets from the father passed through the amniotic wall and got into my sister's blood stream. Immediately, my sister's body reacted by doing what it does best - fighting back. It began to develop antigens to fight this pesky postivie HPA-1. And it was successful. Unfortunately, those little antigen fighters did something else very rare...they passed back across the amniotic wall and began to fight with the little positive antigens Pete was trying to grow with.

None of this came out until he was born and stayed all bruised up for longer than he should have. After a round of testing, they determined that something was wrong with his platelets. Normal platelet count in an infant is 150,000 to 400,000 platelets per microliter. Pete's was 4. And no, that wasn't a typo. I said f-o-u-r. Had she been released he wouldn't have made it home. So, off to the NICU they carted him and after several days of overnight stay and several transfusions of platelets, he was fine. He's almost 10 now and you'd never know that anything was wrong.

I always knew that if I got preggo, I'd have to be tested to see if I was negative for the HPA-1 as well. No big deal, right?

A total of 7 hours in the doctor's office waiting, 3 needles sticks, several Google searches for "NAIT", and several thousand dollars later (thank you high deductibles) we find out the good, the bad, the ugly, and the unsure.

Monday, I called for my results. I was told I was HPA-1b Homozygous. Regardless of how much research I did, I still had no idea what that meant. Sadly, the nurse didn't either. After a 45 minute wait on hold (yes, on hold) she comes back and says that the doc says I'm "all clear." I clarified that that was medical terminology for "it's all good." She even laughed and said "as a matter of fact, according to the results, HPA-1b is the most common genotype." Wow...did I feel relieved!

Until I got back home and Googled "HPA-1b" (damn you internet) and discovered the complete opposite. HPA-1b is found in less than 3% of the population. Nice. Really. Really. Nice.

So, I spent the rest of the evening freaking out that the doctor and/or nurse didn't have a clue and at any moment this baby was going to spontaneously combust in my belly...okay, maybe "combust" is a little harsh. BUT, the biggest problem with NAIT is that 20% of these babies end up having a BRAIN HEMORRHAGE in utero. And FYI, people, there is nothing you can do about that....I prayed alot that night that I had misunderstood that nurse and that everything would be alright. And my prayers were answered (at least for that night) because Little Girl Tarpley wanted to let me know that she was alive and well...by kicking my bladder...all...night...long.

Tuesday morning, I decided to forgoe the nicey-nice phone calls and hold times and just showed up at the office demanding to see the doctor. Almost 3 hours later, I finally got to see him. He explained that the nurse did read that "most common" part incorrectly to me, but that the results were fine. No negative P-antigen. He even drew a map for me to show me how all of this works...the one time where my Googling had come in handy...everything he drew was exactly what I had read in those cumbersome medical journals.

And then as he's walking out, he says "oh, by the way, I don't like the way Quest writes their result interpretations so I called the lab director in California to make sure I was interpreting this correctly."

It took everything I had not to jump across that room and slap him.

For real.

I followed him out of the room, asking a million questions that probably all sounded like that school teacher in the Charlie Brown movies. He "assured" me that everything would be fine and he would call if there was a problem. Or...that I could call him if I didn't hear anything....why can't a doctor just call with GOOD news or BAD news? Don't tell me "no news is good news." What if "no news" means I missed your call and Verizon accidentally deleted the message you left with me the bad news? I mean...really...

At any rate, he did call. That very afternoon. Unfortunately, I was away from my phone and by the time I got the message it was after hours...likely, huh? And when I called at 9:01am on Wednesday, I got another nice surprise. Yes, he wanted to talk to me. But he was at a conference in Atlanta and wouldn't be back until Thursday.

The agony, people...the agony.

I can assure you that I have not prayed this much in my entire life.

At 9:01am this morning I called back and finally got in touch with him. He said that the lab did confirm that he interpreted the results correctly! Yahoo! BUT....there are other antigens that can cause NAIT. These are "rarely" associated with it but can cause it and since there's a history here I need to have another panel drawn and this time Troy needs to be drawn too.

Are you kidding me?

So, Troy and I made a couples trip to the lab...got stuck...and now we wait...for another week (or so - it took them 19 days to even acknowledge that I needed to be given my first results)...saying lots of prayers. Specific prayers. Because if there is one thing that I believe, it is that whatever is going to happen, is going to happen. I just pray that God grants me the strength to deal with whatever the outcome is. I figure one of two things are going to happen (I try to not to think about the third). Either I'll have a sick baby, or I'll be the first woman in my family to get arrested while she's pregnant.

And I'm asking you, my blogging public, to do the same. Pray for specificity. Pray that I don't get arrested for assaulting a medical professional. Pray that Little Girl Tarpley will be okay. And pray that Big Girl Tarpley will have the strength to get through all of this.

3 comments:

Firefly's Running said...

I am sending lots of positive thoughts and prayers.

Bryan said...

On the up-side, if you get arrested it's gonna be the best "White Trash" story ever.

Anne said...

I hope all turns out well (and I mean well and well). Sometimes ignorance is bliss and, need I say, you can't always trust what you read on the Internet. Even from what appear to be credible sources. Stay positive!