Monthly Archives: July 2012

Due date

Today is my original due date. I don’t even know how to feel about that, and I don’t know that it makes much difference. I may or may not have had Lucy yet if everything went according to plan, but I’d already gotten used to the fact that she was born way too early. For the past couple of weeks, as I said before, I’ve just been thinking that we would have been able to take her home from the NICU by now, in all likelihood. Almost everything I do during the day makes me think of how it would all be different if Lucy were here. Changing diapers, crying, baths, feedings, spit-up, and baby cuddles. I wouldn’t have been swimming for hours, or keeping my house that tidy, or cooking very much probably, or sitting in her empty room crying. It would have been scary and overwhelming probably, but we would have been happy.

I forgot to tell the beginning of Lucy’s birth story in the last post. It started a long time before Lucy was born, actually. Many years ago I was diagnosed with PCOS – polycystic ovarian syndrome. PCOS is characterized by a whole host of problems: high cholesterol, fatty liver, high levels of testosterone (which can cause such things as acne and male pattern baldness), weight gain, and difficulty losing weight. I suffer from some of those things, but more relevant to our current situation are the reproductive issues. With PCOS, your ovaries prepare multiple follicles each month to release an egg. Maybe one of those will be released in ovulation (if you’re lucky – many women with PCOS do not ovulate), but the rest are not released and turn into cysts. The mechanics aren’t clear to me, but what it means is that it’s difficult to get pregnant. When David and I decided we were ready to have a baby, we knew it might be difficult, so after only a few months of trying we went to see a reproductive endocrinologist at UCLA. We saw him every month for about a year before I finally got pregnant. This was the regime: Clomid, twice a day, days 3-7 of my cycle. (Clomid stimulates follicles in the ovaries.) I was also on Metformin for hormone regulation and Mucinex to combat some of the side effects of Clomid. On day 10 I would see the doctor for an ultrasound, and he would tell me what day to do the next step, a “trigger shot” of HCG, human chorionic gonadotropin – a byproduct of pregnancy that can also trigger the release of an egg to cause ovulation. So on about day 14 I would mix up the HCG and shoot it into my belly. Then, about two days after that, I would start taking progesterone, since low progesterone levels can lead to a fertilized egg not implanting. It sounds like a lot, but it could have been a lot harder. As I said, many women with PCOS don’t ovulate, so at least I had that going for me. The next step is IUI (intra-uterine insemination), then IVF (in-vitro fertilization), both of which are expensive and not covered by insurance. So even though it took quite a while, we felt pretty lucky.

PCOS also puts you at higher risk of pregnancy complications, as if the difficulties getting pregnant weren’t bad enough. My risk for first-trimester miscarriage was higher than normal, so I was anxious about that. My first blood test showed that my beta HCG levels were a little low, but they increased as they were supposed to, so we weren’t too worried. We had an ultrasound at 5 weeks that showed a gestational sac, then another at 7 weeks where we saw Lucy’s heart beating for the first time. She was also already moving all around. We were excited until the doctor measured her at 3 days smaller than she should have been, and after that it all fell apart. He told us that it was a really bad sign, and that “more likely than not” we would lose her within the next two weeks. If not, we should do extensive genetic testing, because he was almost certain that something was wrong, and that the baby was not “genetically viable.” He told us to come back in two weeks “or when the bleeding starts.” This was two weeks before Christmas. You can probably understand why that was not a good holiday season for us. I was a complete zombie, and worried sick. It was the most terrible two weeks of my life until Lucy died, and it passed so slowly. We were driving to the coast to spend the holiday with family, and we stopped at UCLA for the 9 week ultrasound, not knowing at all what to expect. Our regular doctor wasn’t available, so we saw another and told him what the original doctor had told us last time, and why. He didn’t know why the other doctor told us that, but he looked and saw Lucy’s heart beating perfectly, and she was wiggling around more than ever. She looked like a little frog or something. He said everything looked perfect, despite her still measuring a little small, and told us not to worry. Merry Christmas after all! I will never forgive our original RE for saying those things to us, making us worry like that. He was so wrong – Lucy was perfect.

After that my pregnancy was pretty uneventful, until it ended abruptly. I never went back to UCLA, instead switching to my regular OB in Bakersfield. I was worried about other PCOS-related problems like pre-eclampsia and gestational diabetes, but those never became a problem. After Lucy was born, I did have the problems with milk production often associated with PCOS. I never thought that I was at higher risk for cervical insufficiency or second trimester premature delivery. And while there have not been any studies associating PCOS with incompetent cervix/cervical insufficiency, there seem to be far too many women with PCOS with second-trimester losses for it to be a coincidence. Clearly there is something else going on there – we just don’t know what yet. PCOS is not well understood, and neither is the function of the cervix, for that matter. I’m hoping this issue will become important enough that someone will find a correlation, or at least a way to screen for this potential problem. Because there are things you can do about it if you know, but women don’t usually find out until it happens to them, and that usually means losing a baby. Until recently, they wouldn’t even diagnose true cervical insufficiency without repetition – essentially meaning you had to lose two babies!

Just knowing there were things we could have tried that would probably have saved Lucy if we’d only known tears me to pieces. Maybe right now I’d be moaning about being pregnant and saying “when will this baby ever come?!” Or maybe I still would have delivered early, but late enough for Lucy to have had a better chance, and maybe she’d be home with us now. I’d give anything to have her back again. If we are able to have another baby, it will be bitter sweet, because it will be Lucy’s sacrificed life that brought attention to the problem, allowing us to take action for subsequent babies. Right now, with all the problems of PCOS, I just hope that we’re able to get to that point, that we’ll have to worry about other babies at some point. I’m not optimistic about anything having to do with my body, however. It has failed me too badly, too many times, for me to take anything for granted.

Lucy’s birth story

I think I sort of wrote about Lucy’s birth before, but I feel like I need to document the whole thing. I’m working up to writing about Lucy’s last few days, so I thought I’d start with something slightly less traumatic, although it was still pretty traumatic. If you don’t want to hear about things like blood and cervical insufficiency, now might be a good place to stop reading.

At 23 weeks, you’re not thinking about labor yet. Well, I’ll speak for myself. I was not ready to think about labor and delivery yet at 23 weeks. I had a halfway-point fetal survey ultrasound on Thursday, March 22. Everything looked great, and I was just excited to see my baby, and for David to be able to feel her kicking sometimes. That weekend we drove to Orange County for a friend’s baby shower, visiting the brother and sister in law, and some Ikea shopping. Side note: at the baby shower, there were six pregnant women. We took a picture, all lined up in order of our due dates. I was last in line, and never EVER imagined that I’d be the first to give birth in just a few days. Those other five have since given birth to five healthy babies, fortunately. Anyway, the whole weekend Lucy was just as active as can be, and I kept telling David that she was trying to come out, because she was punch punch punching straight down onto my cervix. After a fairly active weekend, we returned home with Lucy’s new changing table, the first piece of furniture we’d bought for her nursery. Monday was pretty uneventful except for continued cervix punches. Then, around 8:00 Monday night, I started noticing these pains that would come in waves. It didn’t feel like contractions (not that I was expecting contractions), but just really intense lower back pain that would come and go. I complained about it a little, but went to bed.

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Lucy, just days before she was born.

I couldn’t really sleep, and the pains just kept getting worse. When I finally did fall asleep, they’d just wake me up again, so I started seeing how far apart they were. Ten minutes, every time. In hindsight, experiencing pains like that at 10 minute intervals should have had me to the doctor a lot sooner. I don’t know if I was in denial, but I just kept thinking “you’re being dumb, it’s probably nothing, just go back to sleep.” In the morning David went to work and I tried to sleep. At about 8:00 am I got up to go to the bathroom, threw up, got a nosebleed, and had slightly bloody discharge. Worried, I called a nurse at my doctor’s office (two hours away, did I mention?) I described my symptoms, she made me an appointment for 3:00 pm, but told me it didn’t sound serious. (It turned out she cancelled the appointment because she didn’t think I was going to come.) I had David come home to take me, and we got to Bakersfield a little early so went shopping for work clothes for David. All the while, I was still having these awful pains every 8-10 minutes.

We got to the doctor’s office, found my appointment had been cancelled, then saw the on-call doctor instead. We got in quickly, he took one look, and gave us the bad news. He said I was dilated 3 cm with bulging membranes that he could see, and that I had an incompetent cervix. That just means that my cervix was too weak to bear the increasing weight of the baby, which caused it to thin and dilate, which in turn started my premature labor. His plan was to send me to labor and delivery (just down the hall, fortunately) and try to stop my labor. If he could stop it, he would put in an emergency cerclage, which is where they basically just stitch your cervix closed. He couldn’t risk it unless my labor was stopped though. Then I was going to be on permanent bed rest in the hospital until it was time to have her. I started to get down from the table, kind of in shock but still not nearly as worried as I should have been, but he made me wait for a wheelchair. I remember thinking “come on, it’s just down the hall,” but I didn’t realize how precarious the situation was.

They got me to labor and delivery, checked me in, got me into a gown, got IVs started, and really, the rest is kind of a blur. Needless to say, they never got to try that emergency cerclage. First, they tilted the whole bed backwards, so that my head was down. It sounds so primitive, but I guess they want gravity on their side. They started me on magnesium sulfate to try to stop my contractions. Magnesium sulfate has the unpleasant effects of making you feel disoriented and as if you have a bad flu, with hot flashes, then shaking cold, nausea (as if I weren’t nauseated enough), etc. That wasn’t working, so they gave me a shot of something else in my arm, but I can’t remember what it was. I was lying on my side for a long time, and I could feel that something wasn’t right, but I didn’t want to hear any more bad news. So when the nurse moved me and David said “uh oh,” I already knew what he was talking about, and the nurse saw that I was lying in a pool of blood. She cleaned me up and made me lay on my back, which was the most intensely uncomfortable thing I’ve ever had to do. I kept trying to turn slightly to one side, but every time I moved or had a contraction, I bled more. At some point I got a shot of steroids in my hip (to strengthen Lucy’s lungs), but it didn’t have time to work (it requires two doses over 48 hours). My time is all a blur, but my parents showed up during the night and sat in the hospital room with us. Finally my dad took David to get a bite to eat.

They hadn’t been gone very long when I started another contraction (they were coming about every 5 minutes now) and my water broke. I think that’s when I realized that none of this was going to work and I was going to have my baby soon. I was too out of it to really think about it too much, though. David and Dad were called back before they could eat. Not too long after that, I started to feel more pressure, so I told the nurse to call the OB and the neonatologist, neither of whom were in the hospital. After that, I remember just thinking “come on Jill, you can’t deliver the baby until the neonatologist is here.” The doctor showed up, took a quick look, and said we were going to push. David was on one side, my mom was on the other. Pushing was not much of an ordeal. It doesn’t take too much to deliver a one pound baby, although I wasn’t fully dilated and it still hurt. It only took 2 good pushes and she was out.

I never saw her then. David and my mom did, and they said she was limp and purple, and the doctor passed her off holding her by her behind. I guess I’m kind of glad I didn’t see that. All I knew then was that the doctor was hurting me, and I was so confused. I don’t know what was shock and what was the medications they’d been giving me, but it was all kind of terrifying. The doctor was kneading my stomach to get the placenta out, I was bleeding a lot and hurting a lot, and I didn’t know what was going on with the baby. I still didn’t know it was Lucy yet, because I didn’t know if it was a boy or a girl. I heard one of the NICU nurses say “he” and I said “It’s a boy?” I heard “Umm … no, it’s a girl.” I said “Her name is Lucy. Lucy Anne.” It felt really important that she have a name, and that they knew it.

It’s not really clear what happened after that. I recovered quickly, although I was in shock. Apparently I was cracking jokes and telling everyone to cheer up. We were waiting for the neonatologist to come tell us the news, but we’d already been told she only had a 20% chance of living through the night, so we were trying to prepare for the worst. Finally Dr. K came in about an hour later to update us. He told us they’d been able to resuscitate her, and that although they don’t usually go to extreme measures for babies weighing less than 500 grams (and Lucy weighed 480), Lucy responded well so they kept working. He said she was stable for the moment, but he still gave her only a 25% chance of survival. I think, then, that David took my mom to go see her in the NICU. It wasn’t until about 2 hours after her birth that I was able to go see her. I walked down to the NICU in my hospital gown, not sure what to expect. They showed me how to wash up to my elbows for 2 minutes, then dry, then use the special antibacterial lotion. Then, finally, I was able to meet Lucy.

I saw her and immediately burst into tears. I don’t know what I expected, but she barely looked human. I didn’t immediately connect her to the baby I’d felt kicking inside me just a few days ago. This is what we saw that first day:

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A 23 week baby is just not ready to be out in the world. She was skin and bones, her head was a little deformed from delivery, and her skin was completely transparent. We left fingerprints on her if we touched her, and her skin was so fragile that we had to be careful not to tear it. The first few days were spent under the blue bili-light, which only added to her alien-ness. Still, after my initial shock and horror, I was so amazed by how perfect she was. Tiny perfect fingers and toes, squishy little ears, silly flat little nose. She was beautiful. Her eyes were still fused shut, and a few of her toes were stuck together, but those things all fixed themselves over time.

It took a little while for the shock to wear off and for me to get a little more used to our new situation, but I knew I loved that little girl more than anything, and that I would be lost forever without her. Unfortunately, that’s where I find myself now. But at least we had almost two months to get to know her, and she had time to grow into this sweet little girl.

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Mama’s lost without you, Lucy Anne.

Carrying on

I’m not really sure how to start this post. One might think that David and I would be starting to do a little better, but I don’t think that’s true. For me, I can’t stop thinking that we’d be taking Lucy home right about now. Without that infection, we might have had her home with us right now. Every time I stop to think, I think about what that would be like, and her loss hits just as hard as ever – maybe harder.

I can see her whole life as it should have been. It’s always devastating when we lose someone we love, but with babies and children, there’s the loss of potential, too. People say “he could have been great,” or “she would have done amazing things.” With Lucy, I’m sure she could have done whatever she wanted, but maybe she would have just wanted to live her life. I don’t need her to have been some potential mover and shaker; she was Lucy, and that was always going to be all I ever wanted. She would have had flaws, just like everybody else. Sometimes she would have driven me crazy, and worried me, and made bad choices. It all would have been fine, because I already knew she was sweet and loving, that she was willful and had perseverance, and that she was strong. I guess my point is that, yes, she was perfect, because she was a baby, but she wouldn’t always have been, and I like to think of her growing into a beautiful, imperfect child and woman.

We met with Dr. P (one of Lucy’s neonatologists) and our wonderful social worker a couple of weeks ago. They wanted to give us the opportunity to ask any questions we might have or go over Lucy’s case. I did want to see them, just to say hi and thank them again, but I didn’t really feel like I had many questions. I mostly understood what was going on and why she died, I think, and I knew that they’d done everything right. I’m really glad I’ve never had to feel anxious that maybe we could have done something differently, or maybe the doctors did something wrong. I think that kind of doubt could destroy a person, but I know that she had the best care, and the doctors and nurses did everything I would have wanted them to. That’s comforting, at least. Anyway, we did learn some new things. The first is that, in hindsight, Dr. P believes that Lucy got her yeast infection at just 3 weeks, and that it took a while to show up. I think that’s probably true, but I can’t tell you how much I hate that it was killing her all that time we were loving her, making plans for her, and expecting to take her home. It’s not really rational to hate yeast, but I do. What did you accomplish by killing my baby, stupid yeast? How does killing your host work out for you? It turns out that this is pretty rare, too. Dr. P told us that in his care only three babies have died from yeast infections that could not be treated, and that Lucy was the first with this particular strain (Candida parapsilosis, versus the more common Candida albicans). As I’d mentioned before, during my research I came to the conclusion that if Lucy had to have any yeast infection, at least it was parapsilosis, as it is not usually resistant to antifungals and is not generally as damaging as other strains. Unfortunately, this particular variety was drug resistant, which didn’t become apparent until it was too late. Now, at least, if any neonatologists encounter Candida parapsilosis infections, they’ll know to be more proactive in case it turns out to be resistant. It’s a little comforting to know that Lucy’s death has at least taught the medical community something, and maybe some other baby will be saved because of it.

I’ve often thought the neonatologists were really like artists. They don’t have a lot of data to work with when it comes to these tiny babies, because only recently have they been able to save any of them, so the sample size is very very small. Also, of course, it wouldn’t be ethical to do any scientific studies with a control group, so it’s hard to say what works and what doesn’t. All of the data are observational, and they can only improve their care by looking at outcomes. It’s an imperfect system, and I can see how it would be frustrating to be a doctor, just trying things, hoping they will work but not knowing. Dr. P says they’re like philosophers, that they get together and “think as hard as we can.” I appreciate them putting their considerable intellects to work on these problems, though, because not very long ago my Lucy wouldn’t have had a chance, and I got to spend almost two months with my daughter because of their care. And I don’t know many neonatologists, but I know two, and it’s obvious that they care very much. I really couldn’t have asked for more for Lucy.

In any case, it was really nice to be able to talk to the doctor and our social worker. They feel like good friends now. Of course, we stopped first by the NICU to say hello, and it was good to see some of the nurses as well. It was a little hard seeing a lot of pictures of another baby on the wall of Lucy’s old room, but it doesn’t mean as much now that she’s not in it. It’s also hard to see the wall of NICU graduates. I really thought our picture would be up there with Lucy, and it seems like there should be some display in memory of the babies that didn’t make it – the ones that spent their entire lives there. I understand why they don’t have something like that, of course they’d want to stay optimistic and focus on good outcomes, but I just wish there were some way Lucy could have a presence there. The NICU was her only home, and the only place we were ever all together as a family. I desperately hope that there will come a time that we will be able to bring in Lucy’s little brother or sister to meet them all.

We’ve also been back to the Ronald McDonald House the last two Fridays. The first time, our friends (who were staying there when we left) came to visit and brought their handsome little man, so I got to hold him for quite a while. He’s so sweet, and it definitely felt different holding a full-size baby than it did to hold Lucy. It was a really great visit. Last Friday we just stopped by for a minute to drop off some things, but our other friend was there (hi Diego!) and we were so glad to see him and Scarlett. Of course, Scarlett wouldn’t let us leave without feeding us and sending us off with cupcakes. We sure do love all of those people. We really made some fantastic friends through Lucy.

I didn’t really feel ready for support groups or that sort of thing for a while, but David and I finally went to a meeting of Compassionate Friends, a group of people who have lost children. We met some really nice folks there, and I think we’ll continue that. We’ll also start a grief and loss workshop (? I guess that’s what it is) that runs for 12 weeks, and is put on by a local church. I don’t know if anything really helps, but it certainly can’t hurt.

Mostly we’re just trying to figure out how to live our lives right now. We both want Lucy to remain a part of our everyday lives, and to that end, we’ve put pictures of her up in our house in all the places one might normally find pictures of children – hallway, bedroom, mantle. It’s nice to be able to look at her and think about her while I’m doing normal, everyday things like folding laundry or eating dinner. Some people have seemed to suggest that we will mourn then move on and put her pictures away, to be taken out and perused once in a while, but that’s not going to happen. She’s our child, and will always be a huge part of our lives. She will always have a place among the family pictures, and any younger brothers and sisters she might have will always know about their sister, Lucy. Some people seem to be treating her loss as if I had a miscarriage or something. A miscarriage would be bad enough, and we would still mourn that loss, but I did not have a miscarriage. I gave birth to a very small, healthy baby girl, and we had two amazing months with her. She was a person with a complete personality; sometimes happy, sometimes cranky, stubborn, cuddly, and always, always loved. Lucy is our daughter, and we will love her forever, and never forget her.