A very overdue update

I don’t know where the time goes. Actually, I know exactly where it goes. I don’t know what happened to my last post. I noticed it had been cut off when I looked at it later, but I had Ian in my arms, and every time I remembered to fix it, it wasn’t a good time for me to fix it, and then I’d forget until another inconvenient time. I wrote that I do worry that doing so well means I’m forgetting her, but I went on to write that I know in my heart it’s not the case. I still think about it. Sixteen months ago, actually, even twelve months ago, I wasn’t sure I could ever be even remotely happy again. To be this happy? I didn’t think there was even the tiniest bit of a chance, partially because I’ve never been this happy. I didn’t know this type of happiness existed.

And speaking of that happiness, the little guy who creates it is fantastic. He’s over ten pounds now, his hair is still out of control, and every time I think I couldn’t love him more, I love him more. His personality shows more and more every day, and I love it. He’s a bit of a bear when he wakes up (grizzly, not teddy), he thinks his parents are hilarious (we’ll see how long that lasts), and eating seems to be his #1 hobby (that trait is from me). He’s also a big fan of cuddling, and I am taking advantage of as many seconds of that as I can.

He started sleeping through the night a few weeks ago and then decided recently that it’s just not the cool thing to do. I’m not going to mention whether he did it last night because I wouldn’t want to jinx anything if he had, but it would be awesome if he did and kept doing it. Ahem.

Watching him take in the world around him makes a lump in my throat at least daily. There have been times when I’ve been feeding him with tears running down my face – tears of happiness because my love for him is so overwhelming. Sometimes it scares me to realize how much I love him because I’m so afraid of losing him (I don’t know if I’ve written this here, but in my mind, the worst thing that would never happen to me did, so why wouldn’t it happen again), but I know I can’t live my life like that.

And with that, he’s awake. I hope everyone reading this is doing well. I’ll check in soon.

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.

Ian’s due date

I was labeling some breast milk this morning and when I wrote the date, I knew the date was significant, but I couldn’t remember why at first. I eventually remembered that today was Ian’s due date. I never had a huge attachment to the date because I was never going to go later than 39 weeks, and now the thought of things happening any differently with him seems strange.

It’s amazing how different life is now. Exactly 11 months ago was the day before Jillian’s due date, and it was one of the worst days of my life. The anticipation ended up being worse than the actual day, but it makes my stomach hurt to think about how sad we were. Now that I’m thinking about it, I wonder how Jillian’s due date will be this year. I have been feeling some sadness when I see pictures of internet friends’ kids who were due around the same time as Jillian and are approaching their first birthdays. Having Ian here takes away most of the sting, thankfully. I don’t know what we’d do without him.

Ian is still doing well. He’s getting fat rolls on his thighs and his cheeks are chubbier every time I look at him. It’s still amazing to see how much more alert he is every day. One of the proudest moments of my life happened yesterday after he’d been staring at my necklace at various moments through out the day and he eventually reached out and grabbed it. I then made fun of myself for thinking this was the most amazing accomplishment in history even though it’s obviously nothing miraculous. Then again, I don’t think there’s a word more appropriate than “miraculous” when it comes to watching your own child grow.

Time is just going so fast. I’ve been giving him as many kisses as I possibly can, partially because I know eventually, he won’t let me. Or as Dave puts it, he won’t be as defenseless. He wore a 0-3 outfit for the first time yesterday. It was a little big but he wasn’t completely swimming in it. He still fits into his newborn clothes, but their days are numbered. I can’t imagine that eventually there will be a time when I look at his newborn clothes in disbelief that they ever fit him. Right now, I look at 6 month clothes and can’t believe he’ll ever be that big. I’m sure the day they fit will be here before I know it.

One month later

I just lived the fastest month of my life. Exactly one month ago, I was in the hospital, having contractions, hoping they would stop, but somehow knowing in my gut that I was having a baby that night. I can’t wrap my head around the fact that this didn’t all just happen this past Friday.

Ian is doing great. Having him here is fabulous. We’ve had a few nights of him not sleeping at all, which subsequently makes me a zombie, but it’s such a fabulous problem to have.

He’s growing like crazy. His newborn clothes finally fit, and at this rate, they’re not going to fit for long. His weight was 6 pounds, 7 ounces last Tuesday, which was exactly a pound over his birth weight. He has another pediatrician appointment tomorrow, and I’m excited to see how much he’s gained. I’m confident that he’s over 7 pounds at this point.

I wish I could come up with more to say at this point, but I’m so exhausted I can hardly keep my eyes open. Last night was one of those very special nights. 🙂 We’re still having a blast with our little guy. I can’t believe he’s here and I can’t believe he’s ours. Thanks for all your well wishes.

Home

That’s where Ian is. He’s currently asleep about two feet from me. I’m starting to realize the NICU is a lot noisier than I realized because he’s been making almost nonstop noise since we walked in the door. I normally get really annoyed with loud breathers and snorers, but I like that he’s so loud. I can’t even describe what it’s like to look over and see him here. On one hand, it’s like “holy crap, there’s really a baby here,” but on the other, I already forget what it’s like without him here, even though he’s only been home for a couple of hours.

He’s already choked once since we got home. Surprisingly, it’s a lot less scary to have him choke when he’s not hooked up to monitors. In the NICU, everything starts ringing and flashing, and I can see what happens to his heart rate. When I happens here, I just sit him up, make sure he’s okay, and move along. Don’t get me wrong, I don’t want it to ever happen again, but I’m feeling a little better about the fact that it probably will.

We thought bringing a baby home was going to be very emotional for us, but it actually wasn’t. There’s obviously still plenty of time for us to be emotional, and I think we were probably too nervous about bringing home to be emotional about how we never got to bring Jillian home. I did get a little choked up about leaving the NICU last night, but it was because I was thinking about how I’ve spent the past 17 days in the same place where Jilly lived her life. I’ll also really miss some of the nurses and doctors. I don’t think I could ever say enough about how amazing the people are there.

So now we’re going to enjoy our little man. The past thirteen/fourteen months were not what we had planned, but I feel like we’ve finally gotten where we’re supposed to be. I can’t say I wouldn’t change anything, and I’ll never stop wishing that we had Jillian here with us, but I feel like we’re going to be okay. Actually, we’re going to be great. We’re going to have the happy life that we promised her we’d strive for and I feel like we have her to thank for it.

Two weeks

I had my 2-week postpartum check up today. It was pretty uneventful. During my c-section, the doctor said it appeared that I’d had a placental abruption. My peri said today that the placenta pathology didn’t confirm it, so if I did have an abruption, it was very recent. Basically, we’ll never know if that’s really what it was or if it was just preterm labor for any number of possible reasons. Because of that, I’ll be on progesterone starting sometime during the second trimester of my next pregnancy.

The doctor who did this c-section also mentioned that my uterus looked thin, and my peri said it was down around my old incision, which is exactly why I was supposed to have a scheduled c-section without going into labor. She said that because of this, she’d like to see two years between pregnancies. I immediately started bargaining, and she agreed that two years between deliveries would be sufficient. I have no idea when we’ll feel ready for another one, but I can live with two years between deliveries. I think.

Things with Ian have been uneventful, thankfully. He’s still not eating, but that’s okay. I’m dying for him to get home, but I know we need to wait. I really hope it’s soon.

I’ve gotten a few lectures over the past few days about not being in the NICU 24 hours a day (I even asked my doctor this morning if Ian’s doctor had called her because they both used the same speech). It’s not even like I am spending a ton of time there. I go in the morning for his feed, come home after that’s finished and I’ve pumped, and then head back by his feed in the early evening. I think I’m probably there more than most parents, but I’m not working and we live really close to the hospital, but I don’t think I’m there THAT much. My doctor assured me that she tells the same thing to every NICU mom she sees and that nobody called her, but I still feel like they’re all looking at me like I’m spending too much time there and not taking care of myself. I swear that I’m fine, though. I could use more sleep, but I have to get up to pump during the night, so that’s not going to happen for a long time.