3/24

Today is the anniversary of Jillian’s due date. It’s been a pretty normal day. I don’t know that she’s been on my mind any more than usual because I think of her constantly no matter what day it is. I think it’s a date I will always sting a little bit when I see it, but the fact that today was THAT day wasn’t gut wrenching like the actual day last year was.

I know I wouldn’t be feeling so at peace with the day without Ian here. Sometimes I worry that being so much better means th

I’m climbing onto my soapbox.

The hormone progesterone has been used during pregnancy for I don’t know how many years to help prevent preterm labor. It was a possibility that I would need it during my pregnancy with Ian, but because my cerclage was holding things together, I did not receive these weekly shots. However, my peri and I have discussed that I will definitely need these shots in future pregnancies because I went into preterm labor with Ian.

This drug has been around for ages. Recently, KV Pharmaceuticals obtained FDA approval to use this shot for preterm labor prevention, a move which was supported by the March of Dimes and many doctors because FDA approval would mean that the drug would be regulated, which should increase the safety of the drug’s production.

Well.

Upon receiving this FDA approval, KV Pharmaceuticals increased the price of the P17 shots. From $10 per shot to $1500 per shot. Now that they’re the only company who can sell it, there’s no other option for people who need it. If we’re lucky, insurance will cover it. If we’re not lucky, KV Pharmaceuticals says they won’t deny it to anyone who can’t afford it. In my opinion, that doesn’t make it okay. And if our insurance will cover it, they have to pay for it somehow, which means somebody’s premiums are going up. Regardless of who pays for it, it’s going to increase costs for someone, and it means that my next pregnancy will cost an extra $30,000. The reason for the price increase? Who knows (aside from greed). It’s not like KV had to research or develop this drug.

I’m hoping that if enough people join in this outcry, something will be done to fix this. I copied this letter from another blog. If you would like to send a message to your congresspeople, please feel free to copy this letter.

http://www.contactingthecongress.org/

I am writing you today to ask you to call for the P17 drug to be exempt from FDA Orphan status. KV Pharmaceuticals recently won Orphan status rights for this drug and will market it under the name Makena.

As you know Orphan drug status is a form of a grant given by the FDA to support the development of drugs for rare diseases affecting less than 200,000 people. This drug was already invented before KV Pharmaceuticals won rights to produce it. This drug came on the market more than 50 years ago for other purposes. A 2003 study brought new light to the drug when it was shown beneficial in preventing pre-term labor in those who had already had a previous case of pre-term labor.

The study showed a reduction in pre-term births from 55 percent to 36 percent. Currently the US averages 500,000 premature births per year.

By granting Orphan status to the drug, KV Pharmaceuticals has raised the price per dose from $10 to $1,500. This means that for a pregnancy, the price to take this drug would go from $200 to $30,000. As preterm labor affects 500,000 births a year, the increase in cost will undoubtedly mean less access to the drug, causing a higher preterm birth rate, straining the public health system and causing countless unnecessary suffering to our citizens.

Thank you for your time. I urge you and other members of Congress to call for the P17 drug to be exempt from FDA Orphan status.

Two months (a little late)

I had all these plans for Monday, including posting here and taking some pictures of Ian. Before I could get to those tasks, I had to take Ian to the doctor for his check up and shots. Yeah. Now I know that if anything needs to be done, do it before the two month shots. First of all, I didn’t know he could scream the way he did. His lip quiver just about put me over the edge. Thankfully, he calmed down as soon as we started breastfeeding and then he slept peacefully for a couple of hours.

And then he woke up. And screamed. And cried. And screamed. And cried. I felt awful. Nothing I did helped. He eventually stopped and was back to his normal, happy self by the time we went to bed, but my goodness. I’d heard people say how bad shots are sometimes but I didn’t think they’d be THAT bad.

He smiled for me a couple of times last week, which was heart melting, but he really turned it on yesterday. My mom is visiting and he was smiling for her pretty much all evening. We also learned what it’s like for him to be overtired (he was too busy smiling to sleep, so I can’t complain). This is obviously rhetorical, but why don’t babies sleep when they’re that tired?

So things are great. I can’t wait for the weather to get better so we can start getting out more, but at the same time, I don’t want to wish the time away. I want to savor every second that we’re so lucky to have.

Grief

I’ve had a few people ask whether I’ve done any grieving for Jillian since Ian was born (aside from the grief that is always there, I assume). I’d read in a couple of books that it’s pretty common to feel grief for the deceased baby when another baby is born, so I knew it could happen, but I hadn’t noticed anything additional or out of the ordinary. Until last night.

We were watching a 60 Minutes story about kids living in poverty outside of Orlando, which got my crying started. Somehow we got to talking about Orlando and going to Disney World, and I mentioned that if we ever take Ian, I don’t know how I’m going to get there, and mentioned that I’d probably have to fly into Tampa (long story, but I used to travel for work, frequently to Orlando, and many of my memories of my pregnancy with Jillian happened in Orlando, so I’ve developed some irrational anxiety about the place – especially the airport).

I pictured Ian in Disney World, but in my mind, a little boy version of him was walking hand-in-hand with a little girl about his size. My heart broke. I had flashes of the times I drove between Tampa and Orlando while I was pregnant with Jilly, and how I promised her that someday we’d be on that road again, but we’d be getting off at the exits for Disney, because she was going to be alive and healthy (the first time I had this conversation with her, I was spotting and terrified that I was starting to miscarry).

Then I remembered walking to the rental car the last time I flew there, just days before Jillian was born, and telling her that this was the exact spot where I was standing when the nurse told me I was probably miscarrying, and we’d proved her wrong. That spot – the spot that I can see so clearly and could walk to in my sleep – is what I picture every time someone mentions Disney World or Orlando. Thinking about it makes me want to throw up.

So I sobbed. I sobbed for my little girl. I sobbed for my little boy who will never know her. I sobbed for Dave and me because we will always have these holes in our hearts, no matter how good things are. The difference is that this time, I could pick up my baby boy, snuggle with him, and tell him how much I love him and how lucky we are to have him. He makes it so much easier to bear.