Category Archives: Lucy

The little light who started this all for me.

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.

Anniversary Days

Lucy would have been three months old today. What are three month old babies usually doing? I don’t think Lucy would have been doing the things a term baby would be doing at three months. She’d still be in the NICU now. We’d still be in Bakersfield, pumping and washing and driving back and forth across town to see our little girl. Now I always just feel like I’m waiting for something – waiting to be told I can go back and see her again. I’d do almost anything to see my happy, brave, sweet baby again.

I think days like this are always going to be hard. There’s her birthday, March 28th, the day she died, May 21st, and my original due date, July 24th. But then there are the 21st and the 28th of every month, and there are Wednesdays (when I think “she would be x weeks old today”), and there are Mondays, the day she died. I’m hoping over time those smaller anniversary days will stop being so difficult, because it’s hard to live life when every Monday, Wednesday, 21st, and 28th are especially painful. Today, though, is too early to think about that. Today was really hard.

For the first week or so after Lucy was born, I would feel phantom kicks. They’d make me happy for a second before I remembered that there was no baby there to kick. After a while, I didn’t worry about that so much because I had Lucy to worry about, and she made me so happy. Now there are different phantoms: the tiny sounds she made when she was trying to make happy sounds while we cuddled, the hum of the machinery keeping her alive, and – above all – the alarms beeping from her monitors. That sound haunts my dreams still, and I don’t know when it will stop. I hated it, hated it so much then, but now I miss it because it meant she was alive and I still had to worry about her.

We’re slowly moving forward. Things are strained, but we’re making plans. I’m finding it helpful to try to plan a course of action to ensure that what happened with Lucy never happens again. I’ll post more about that later when I figure out what I’m going to do, but it looks like there is at least one good option for us. That makes me feel a little hopeful, but also makes me so mad. Lucy was perfectly healthy, and she didn’t have to die. If I’d known about this procedure, or known that I might need it, I’d be looking forward to another happier anniversary day – Lucy’s birthday, in about three weeks.

One month

Today it’s been one month since Lucy died. In some ways the time has gone way too fast, but it’s also been the slowest month of my life.

I think about Lucy all the time. If I’m not distracting myself with other things, she’s all I can think about. She would have been almost three months old. We would have been seriously thinking about taking her home. She would have been off the ventilator and I would have been able to hear her cry. That’s one of my biggest regrets, that I never heard her voice. We’d be holding her all the time, and she’d be getting so big.

We’re still working on our new house, but we finally spent our first night here last night. We weren’t in that much of a hurry to leave my parents’ house – it was nice to have the extra company and support. It’s nice to be in our own home now, but it’s hard in a lot of ways. Things keep going wrong, and they feel more overwhelming than they would have before. The hardest thing, though, is the fact that we bought this house to be Lucy’s home. Everywhere I turn, I see the things I wanted for her here. I wanted the blue room, now filled with boxes of her things, to be her room. I wanted to teach her to swim in our pool. I wanted to teach her to cook in this kitchen, and plant flowers and vegetables with her in the garden. I can see her running around playing, and sometimes I can almost hear her laughing. Whenever I think that none of that will ever happen, the pain is just too overwhelming – I feel like it’s crushing me.

Most of the time I feel like I’m sort of okay, but it doesn’t take much at all to make me crumble, and that’s when I feel like I will never be okay. A couple of weeks after Lucy died, we were eating out, and I overheard a lady at the next table saying “isn’t it so sad about that little tiny baby that died?” I don’t know for sure they were talking about Lucy, but in a town this size, I’d say it’s a fair assumption. That gutted me. They didn’t know who I was, they were just talking about a tragic thing they heard about. It’s weird being the victim of the tragedy instead of the observer. Another time, a salesman in a furniture store asked us if we had children. Such a simple, harmless question, but it was the first time we’d been asked since she died. I froze – couldn’t say a thing. Finally, not wanting to explain, David said no, but that felt wrong. Maybe next time we’ll be more prepared. Yes, I have a daughter, but she passed away. Why couldn’t I just have said that?

I’ve always sort of had a taste for drama, but only indirectly. As a child, I would lie awake at night imagining these heartbreaking scenarios: me on my deathbed, saying goodbye to friends and family, somebody I love dying tragically, etc. I’d get myself all worked up, have myself a good cry, then go back to sleep, secure in the knowledge that nothing like that would ever happen. As an adult, I’ve often enjoyed a sad movie or book – they’re cathartic. But now I’ve lost my taste for drama and tragedy. Having experienced the trauma firsthand, I’ve found that those things aren’t cathartic anymore. Is there such a thing as catharsis for me anymore? When I do break down, it doesn’t feel like a relief, it just feels like a temporary release, letting out some of the grief like the vent on a pressure cooker. As soon as I stop, the pressure starts building again. I think that what will happen eventually is that the time between breakdowns will slowly increase, and maybe I won’t feel the need to cry on David’s shoulder every single night before I can sleep. One day that will happen.

Well now I feel like I’ve been a bit melodramatic. I’ve been trying to regain some of my former cheerfulness and optimism, but some days are harder than others. Today is definitely harder. We’ve been without our baby for a whole month – half the time she lived! – and all I can think today is that we have a whole lifetime of this ahead of us. A whole lifetime without Lucy is just not something I can be optimistic about right now.

Hard things

A week ago today we went to pick up our daughter’s ashes. You can’t really prepare yourself for that. What’s left of her, physically, fits in a tiny little bag. It’s hard to connect that tiny bag of ashes with my tiny-but-beautiful Lucy, but it’s all we have left of her (again, physically, because that’s not her anymore, and because she’ll always be with us). We just wanted to take her home with us. Now we just have to find a nice spot to scatter her ashes.

Last Saturday was Lucy’s memorial service. It was a nice service, we thought, and it was really good to see how many family and friends came out to support us. I know many others wanted to be there, and that means a lot to us too. It was a strange day for us. Up until that point, there were so many things that needed to be done in preparation that we didn’t have much time to stop and think. We still have a lot to do (for example, we haven’t even begun to deal with the hospital bills, insurance, social security, and Medi-Cal), but that day marked the end of the days we had to think about. Since then, I’ve felt kind of lost. We’re still trying to move in to our new house, which takes up a lot of time, but not a lot of thought. I just want things to go back to normal, only I don’t know what that is anymore. We’re just trying to figure out how to live our lives without our little girl, and that will take a while.

I originally thought I was handling my grief pretty well (which made me feel guilty, because didn’t I love my daughter?), but I’ve been disillusioned. As David said earlier, there are more and more contexts now that make us think of her. I’ll be feeling okay, then I see a little girl playing with her daddy and all that grief comes bubbling to the surface. It’s all I can do to get someplace private before I completely fall apart.

Little things that people say can really upset me too. Most things don’t bother me too much – I know they’re just trying to offer whatever comfort they can. One mortuary employee even went so far as to suggest that we might not even want to raise a child in today’s world. I just nodded and thanked him for his kindness, but no, I really did want to raise my child, thank-you-very-much.

What upsets me more are the comments that seem to underestimate Lucy. I’ve heard people say things that make it sound like Lucy’s death was inevitable, and I’d like it made clear that her death was by no means inevitable. She’d made it past most of the major hurdles, and until a couple of days before she died, everyone thought her chances were excellent. Her sudden turn for the worse took us all by surprise, including her doctors and nurses, I think. We were not deluding ourselves about her condition, nor was it wishful thinking to imagine her coming home with us.

I also don’t like people to say the doctors kept her alive like they performed some miracle. While modern neonatology is pretty miraculous, and while her care team was amazing, Lucy kept herself alive. The doctors, nurses, and respiratory techs gave her every chance, and she never would have survived without their excellent care, but it was Lucy’s strength that made the difference. They always said it was her game, that they were just reacting to her and trying to give her the time she needed to grow strong and live. And she had an incredible will to live. That was all her. She was an amazing little girl, she just wasn’t big enough to handle the level of infection that finally overcame her.

I know most of you don’t need to be told any of this, but it feels really important that everyone understand that about her. She was stronger than she ever should have had to be, and stronger than we ever expected her to be. Our girl was a fighter from the beginning, but by the end she was fighting overwhelming odds.

I don’t know where to go from here or what to say. I guess it will start to get better eventually, but it’s pretty awful now, and I don’t see it improving very quickly. I do want you all to know, once again, how grateful we both are to all of you, to every single person who spared a thought or a prayer for us during this whole experience. It makes everything a little bit better and gives me hope for the future. Thank you.

Yesterdays and tomorrows.

Yesterday Lucy would have been two months old. I’m really struggling with the idea that a little over a week ago I held our little girl in my arms, and now I’ll never hold that sweet baby again. It seems so unreal. I’m starting to feel like I’m losing my mind; at any given time, I either feel intense pain or nothing. During the times that I feel nothing, I can function, but I have a really hard time controlling myself. I’m not very pleasant company at all right now – I’m scattered, irritable, and can’t seem to focus on anything. Everything seems disjointed, and the smallest things bring me to tears. I’m lucky to have an incredibly supportive and understanding family, and a wonderful husband who is doing his best, just as I am.

I’m writing this for two reasons: because it’s useful for me to try to talk about it – it helps to put things in perspective – and also so that any other grieving parent who finds their way here knows that they’re not alone in these bizarre, difficult feelings. In the future, when things settle down a bit, I plan to split this blog into two parts, so that our experience with Lucy has its own dedicated section. Because I need to keep talking about her, and about my life without her, but I realize that eventually I’ll have to start thinking about other things again (and that some people will get tired of reading about how sad I am). My original 30 before 30 list of goals seems like a good place to start. Getting back to all the things that interested me before Lucy came seems wrong right now, and thinking about writing a non-Lucy blog post makes me feel guilty. But I guess it’s not really that I’m just going back to life the way it was before she came to us, because she’ll always be with me in everything that I do. It feels like she’s as much a part of me now as she was when she started life inside me.

Every night, before I go to sleep, I hope that I will dream about my little Lucy Anne. Until last night, I never did. Last night, though, I dreamed that she had been moved to another place, and when I opened the door, there was Lucy, healthy and happy in her crib. I sat down while David reached in and picked her up, then he put her in my arms. I held her in my dream, marveling at the beauty of her sleeping face, until I woke up this morning. I hope I never stop dreaming about her.

A parting note, plus memorial service details

***Memorial service information is at the bottom of this post if you don’t want to read it all***

I’ve been putting this off since she died, but there are some things I still need to say.

It has been the hardest and most awful thing we’ve ever had to do, to try to live our lives without Lucy. I never thought I’d be planning my daughter’s funeral. All of this came as such a surprise, too. She was so strong that none of us knew how sick she was with the yeast infection, not even her doctors. By the end, it was clear that it had made its way to her brain and into her bones. At some point I will write specifically about what happened at the end, in case other parents of micropreemies chance upon this blog and need to know, but I can’t yet.

Right now, we’re just trying to be grateful for the time we did get to spend with our beautiful baby, although it’s so hard not to focus on all the time that we’ve lost. It’s devastating to know I’ll never get to hold her again, kiss her sweet chubby cheeks, wash her fuzzy hair, teach her to swim, take her to the park . . . the list is too long. I will always regret that she didn’t get to meet her great-grandparents, her Uncle Adam and Aunt Shelby, and all of the friends and family who would have loved her – DO love her.

The guilt is almost crippling. Guilt that I couldn’t protect her. Guilt that I couldn’t keep her inside me long enough (because none of this would have happened to her if not for that. She was perfect). Guilt that I didn’t spend more time with her while I could. Guilt that my body is already recovered from her, and done making milk to try to feed her. Guilt that I’m not crying enough, not mourning enough, because how could it ever be enough? Guilt that I can still smile, even though it hurts. Guilt that I know I’m going to be okay eventually. Guilt that I didn’t love her enough, because I feel like if I had just loved her hard enough, I would have been able to heal her. I’m not asking anyone to tell me it’s not my fault, because logically I know. I would have done anything to keep her inside longer, to keep her safe, but I couldn’t. I would have spent more time with her if I didn’t have to sleep and keep a strict pumping schedule, and if I hadn’t been sure I’d have plenty of time later to make up for it. And I know that the only reason I still had any milk at all was because I followed such a strict regime – I tried so hard to have enough to feed her, and it was heartbreaking to throw it all away. I know, in theory, that I can only cry so many tears before physical and mental exhaustion requires a break before I can cry again.

I don’t know when I’ll stop feeling guilty for living my life, though. I’m terrified that I will forget her. I’m terrified that I’m forgetting her already – how her face looked, how she smelled, the feel of her in my arms, how it felt to nuzzle her neck. It’s hard to think about any future children we might have, because even though we both want them, it feels like a betrayal. Putting together our new house – the house that should have been Lucy’s home – is both exciting and awful. Her crib is still unpacked in her room, her changing table against the wall that was so lovingly painted by her grandma. And things still make me laugh, but half the time the laughter turns into tears. I can’t believe how much it hurts to laugh.

As bad as it is, though, I know it will get better. Lucy was aptly named – her name means “light.” She brought more light and joy to our lives than we ever imagined possible, and her light spread to everyone who knew her or followed her story. So many people – complete strangers even – reached out to us, prayed for us and for Lucy, and kept us in their hearts. I never before knew how it felt to be lifted by the love of so many, and it has gone far in sustaining us.

We also met the wonderful people of the Bakersfield Ronald McDonald House because of Lucy. You are all amazing people, and you took such good care of us when we most needed care. You housed us, fed us, and you became our friends. We will never forget you, and we plan to continue to be involved in your mission. We love you guys.

I hardly know how to begin to thank the NICU staff at Mercy Southwest: doctors, nurses, respiratory technicians, social workers. Lucy received the highest quality of care, and we found ourselves grateful to have ended up at this hospital and this NICU on several occasions. You are all such wonderful, competent, compassionate people, and I’ll never be able to thank you enough for taking care of my baby. I hated to leave her every single time, but was always comforted knowing she would be with you. You are and always will be like family to us, and we love you. Thank you, thank you, a thousand times thank you, and it will never be enough.

Meeting all these wonderful people, spending time with new friends, and mostly having and loving Lucy, has changed our lives forever. She touched so many people, and she inspired us with her strength and determination to live our own lives better.

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We will be holding a memorial service for Lucy Anne on Saturday, June 2, at 2:00 pm, followed by a small reception. It will be held at Crossroads Community Church, 235 N. China Lake Blvd., Ridgecrest, CA 93555. Everyone is welcome. If you’d like to make a donation, it can be made to the Bakersfield Ronald McDonald House (or your local Ronald McDonald House). It’s a wonderful charity, and we owe them so much.

Final update.

Lucy fought as hard as she could, as long as she could, but the infection overwhelmed her tiny body. The doctors and nurses did everything they could, but we ultimately decided to stop fighting. The doctor told us there was zero chance of her coming home with us, and we didn’t want to prolong her suffering. She drifted away peacefully in our arms, surrounded by people who loved her.

Our lives will never be the same without her. You were so loved, Lucy Anne, and we were so blessed to have you in our lives.

Update 2

Lucy is the same pretty much. They were able to wean her oxygen a bit (it had been 100%), so that’s good. She still hasn’t peed. Her blood pressure is way too low, so they’re treating that with dopamine and dobutamine. So far it hasn’t really come back up. She had ultrasounds of all her internal organs, no word yet. She has severe edema and is extremely swollen. We napped briefly in the car and we just ate dinner. All of our parents are here, and they’re taking very good care of us.

Update

Lucy is in renal failure, and her prognosis is not good. The doctor gives her a 40% chance if her kidneys start to work, but they’ve done all they can for her at the moment, so we just have to wait and see. Dr. P says it’s possible that her renal failure will turn around. If her kidneys don’t start working in the next day or two she probably won’t make it. She’s been so strong, but she’s fighting a really hard battle right now. Thank you all so much for praying for her, she needs all the help she can get, and we can’t imagine living without her.