Category Archives: Lucy

The little light who started this all for me.

Happy 3rd Birthday, Lucy

I started writing this days ago, and meant to publish on her birthday, but I couldn’t finish it. I can’t imagine why it felt so much harder this year.

Dear Lucy,

Happy third birthday, sweetheart. It’s hard to believe you would have been such a big girl by now. Time keeps passing, but you’re still just a baby. It’s so wrong and heartbreaking that you don’t get to grow up. What would you be doing now? Would you be an outgoing little chatterbox? That’s how I imagine you. I see you as a little adventurer. You would have loved to go exploring with William, I think. He loves to be outside, and he’s not afraid of anything. You two would have scared me during your explorations. You would have loved your little brothers. I have two little brothers too, and although we fought a lot growing up, I love them very much. Would you have been a daddy’s girl? I suspect so. You had your daddy wrapped around your tiny finger from the moment he first saw you.

As we enter the season of your life, I feel like I’m in limbo. For these next two months, my mind will flit back and forth between two alternate realities – the one we live in now, without you, and one where you are alive. Every day, I look at pictures of you from that day and try to remember what we were doing. Easter – the day you had to have steroids, and we missed Easter dinner with a nice family who’d invited us over because I couldn’t stop crying. Every memory I have with you is a memory that I cherish, but so many of them are sad or scary. I try to focus on the others: May 3, the day I first held you, my beautiful girl. April 18, the day we first got to take down the walls of the isolette and give you kisses and nuzzle your neck. April 19, the day you looked at me and I knew you saw me, and I knew that I would die for you.

A month ago, you got a new little brother, Andrew. Maybe you already knew him. Maybe you chose him to be your little brother, because you knew he’d be the perfect fit for our family. If so, you were right, he is the perfect fit. Sometimes he looks just like William, but somehow he reminds me more of you. While I was pregnant with Andrew, I couldn’t think about you the way I wanted to. When the memories got hard and I cried, I got really sick and my contractions got out of hand. So, to protect Andrew, I had to stop thinking about you so much. It felt like a betrayal, and I’m sorry. After Andrew was born, it all came crashing down, and I’ve done a lot of crying. It seems strange to cry so much at such a happy time, but Spring will always be bittersweet for me. When I see the grass greening and the wildflowers blooming, I think of you. The daffodils remind me of your short bright life. When the magnolias start to bloom, I’ll know we’re nearing the end, and my heart will break all over again.

Lucy, your mommy and daddy and brothers have a beautiful life together, but we’ll always miss you. Now that we have Andrew, I keep thinking that maybe if we have a girl, our family will feel complete. Then I realize that our family will never ever feel complete without you. We’ll just do our best to keep you with us, and hope that it will be enough. Darling girl, your light and beauty changed us forever.

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For your birthday, we took William and Andrew for a picnic in the mountains, like we wanted to do with you. When we came home, we had Matilda cake and sang happy birthday. William sings “happy to LeeLee,” which is very cute.

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First cuddles:

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The last picture of happy, hopeful times with Lucy:

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Loving and missing you, baby girl.

Happy 2nd Birthday, Lucy

Dear Lucy,

Two years ago, at 12:23 am, you made your unexpected debut into our lives. Until then, and even after, I didn’t know what it meant to be a mother. You taught me so much. Two years later, not having you here with me doesn’t hurt any less. We’ve sort of learned how to live with this gaping hole in our lives, but in some ways, it feels more painful than ever. I think I’ve only just begun to realize what it means to have an entire lifetime of missing you ahead of me. As we’ve watched your cousin Hallie and your little brother grow into beautiful little people, all the things that we’re missing with you have finally started to hit home. The birthdays and cakes, the milestones, the cuddles and kisses are all so sweet, but so painful too. Every event and holiday feels like it’s taking me farther from you. Sometimes I hate that time passes, because it passes without you. I never wanted to leave you behind.

You’re still a huge presence in our lives, of course. We have pictures of you everywhere. We talk to William about you. He knows your name and your face, and when I say “Lucy” to him, he smiles and waves at your picture. I see you in him a lot of times; I think you two would have looked a lot alike. He just turned one, he’s already getting so big. Recently, your ashes finally found a new home in a small pewter heart. It took us so long to do anything with them because we couldn’t bear to think about it. I don’t know if all of your ashes will stay there or not, but for now, I’m glad they’re there. It’s small enough to fit in the palm of my hand, and it warms up as I hold it. It’s heavy, and solid, and more inviting than the plastic box the mortuary gave us. I know it’s not you in there, but I’m still glad your ashes have a nice place to rest now. They’re sitting on a bookshelf in William’s room (and your room too), along with some of your other things. I like to imagine you watching over your little brother there.

Lucy, I’ve struggled a lot this year. I didn’t think I could ever have a harder time than I did when we said goodbye to you, but it’s even more difficult to try every day to be the kind of person I want to be for you. I struggle every day with guilt and shame for my failings as your mommy. A lot of people have told me that I was strong, but I know in my heart that I wasn’t the kind of strong mommy you needed. I could have and should have done better. You deserved the very best me possible, and I didn’t give it to you. I was too focused on the wrong things, and I didn’t know until it was too late. You are so sweet, though. I know that you would know all that and still forgive me and love me. I hope that you know that even with all my failings, nobody could love you more than I do. There are so many things I wish I could change about that time, and I can’t change any of them. The only way I know how to deal with that is by trying harder every day to be the kind of person who would make you proud, and to be the kind of mom who would deserve the precious gifts she’s been given in you and William. I fail a lot. Most days I fall short. I try and try, and I just keep failing. But continuing to try is what it’s all about, right? I know, nobody is perfect, so I’ll just keep on trying to be better, and trying to forgive myself at the same time. Because really, this isn’t about me at all. It’s about you and all the lives you touched. Hopefully, it’s about making the world a little bit better in your honor.

Some days are very dark for me, Lucy, but you are still my little light, and you always will be. I love you, darling girl, with every bit of my cracked, imperfect heart.

Love,
Mommy

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This is the elephant Uncle Justin gave her. He wears a bandaid that she had on when she died. The heart is the urn that her ashes are in.

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Twilight beach print by CarlyMarie.

The Struggle for Meaning

I’ve hit a valley in the ongoing struggle with my grief for Lucy. There’s no “why,” I’m just more sad right now, in the midst of my beautiful, happy life. And it’s becoming more difficult to talk about it, because I feel that I have to come up with something new to say to justify talking about it. That’s not true. Grief relives the same feelings over and over, and there are only so many ways to express the depths of sadness. Saying “I miss you” and “my heart is broken without you” is as timeless as saying “I love you,” and really, they’re the same anyway.

So what should I say? Should I say “Lucy, I love you, I miss you, my life can never be whole without you?” I do, often. Should I say that I would have given all the years of my life for you to live? We wanted to, asked to, while she was alive. We begged and pleaded, and both of us would have signed any compact to exchange our time for hers.

We couldn’t, so instead we try to use our time better, in her honor and on her behalf. I try to love more honestly and more openly. I try to be grateful for all the many, many blessings in my life. I try to see the best in people, and recognize their struggles. I fail often, but I try. I try to be patient, but I have little patience for talk about how terrible this world is, and how everything is falling apart, and how evil is winning. The world is filled with beauty, and love, and charity. It is a place where children are happy, and where beautiful little souls like my Lucy can come for a moment to remind us of the good in ourselves and others, and to inspire us to strive to do better.

The Second Mother’s Day

Yesterday was my second Mother’s Day. It’s really hard for me to believe that this post was only a year ago. My first Mother’s Day was stressful but full of hope and love. My second Mother’s day was very relaxed and full of love, but also sad. Not only was I missing Lucy, but as of Sunday William has been with us longer than Lucy was. He’s now lived longer than she got to, and while I’m incredibly grateful for that, it’s just one more reminder that she’s not here living the life we hoped she would.

There are lots of mothers missing one or more of their children on Mother’s Day. This advice is too late for this year, but if you know a woman who has lost a child, take a moment to acknowledge her and her child on Mother’s Day, or any day. I can almost guarantee that one of the best gifts you could give her is to say the name of her lost baby and to recognize that life.

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That’s Lucy on Mother’s Day last year.

This year I have William, and Lucy is always in my heart.

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Happy Birthday

I should have already written about William’s first week home, but I haven’t yet. Don’t worry, it’s coming along with a lot of pictures. But I can’t write about that right now, because today was Lucy’s first birthday, and I’m sort of beside myself with grief. Honestly, I’m having a hard time even writing this. I don’t know what to do today. I want to celebrate, because today is the day I met the most beautiful little soul. I want to watch her eat her first cupcake while William dozes in my arms. I want to take pictures and laugh and marvel at how big my baby has grown. I want to have a party, but we’re not ready for that yet. Because a year after her birth it still hurts like it was yesterday. It hurts more than it did then, because then I was still in shock. Now there is no buffer and all I feel is how gone she is, how she’s missing from every day of our lives.

If I ever thought that having a new baby would somehow make up for losing her, I was wrong. William is a beautiful little miracle and we are so blessed to have him. I’m completely amazed by him and the love I have for him. But nobody could ever take Lucy’s place. Sometimes holding him makes me feel an empty ache in my arms where Lucy should have been. Poor William, I can’t tell you how many times I’ve cried over him, wishing I were holding them both.

Whew, I started writing this post from the deepest depths of grief, and that’s a hard place to be. Sometimes – like now – it’s hard to be hopeful, and it seems like all I feel is despair. But I took a break to just let it all out with David, and now I feel a little better. It’s hard to explain; the grief never goes away, and when I think about Lucy it kind of always feels like the world is ending, or like it should be. But now everything is more complicated, and we have to make room for a lot of happiness too. Or maybe it’s not happiness – because we were happy at times after Lucy died – but joy. William brings us such joy, and there’s just not enough time in the day for all of that grief and all of the joy. It will be hard to find a balance, I think. Right now I’ve just been fluctuating wildly between the two, but that could have something to do with the post-pregnancy hormones. I don’t know, I guess I’ll see how it goes.

Anyway, today was Lucy’s birthday, and I couldn’t celebrate it yet. I hope to get there, but this year it still feels too raw. So today we looked at pictures of Lucy while we held our new baby boy close. I cried a lot. I made Lucy a little birthday cake. David and I took William on a little drive into the desert, something we always planned on doing with Lucy. And we had an appointment in the evening with our therapist, which seemed appropriate. After Lucy died, I thought that maybe we would scatter her ashes on her birthday, but I’m not ready for that yet either. I still haven’t quite figured out how to live without her.

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Her little feet, way larger than life size. In reality, they are only an inch long, but they’re just perfect.

 

My sweet little Lucy. I remember so clearly how happy I was when I found out I was pregnant with you. I waited all day for Daddy to get home so I could tell him, and he was just as happy as I was. We were in our nice little apartment, and the afternoon sun was coming in, and I cried because I was so happy. I remember how scared I was when you were born, and how worried we were during your life. More than that, though, I remember how you amazed and impressed me every day. I remember how I hated to leave you, how proud I was of your accomplishments, and how your strength and courage made me want to do better. I loved how stubborn you were, and how you exasperated your nurses sometimes. I loved you. I still do love you, and I will love you every single minute of my life. I could never stop, even if it meant that it would stop hurting. A piece of my heart went with you when you died, and that’s okay because it means we will always be together. You and your brother are the most precious gifts I’ve ever been given. Happy birthday Lucy Anne.

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7 months

Just a quickie today. Today Lucy would have been 7 months old. I wonder if I’ll ever stop counting the months. I guess I probably will – I stopped counting the weeks, and at first I thought every Monday and Wednesday would be especially hard. Today I read about a baby who died, and as I was crying, about halfway through his story, I realized that he was in the same NICU as Lucy for a few days while she was there. I want to send his parents a message and tell them that we have this in common, but I don’t know if it will help or not.

I’ve been struggling a lot with guilt lately. I think it’s because I realized something recently. We had a lot of really good reasons for not spending more time than we did at the hospital with Lucy, and they are still valid reasons. We had to sleep, and eat, if for no other reason than that I had to keep making milk. That was important. But I realized that I would have found a way to be there a lot more if I hadn’t, at some point, started to take for granted that Lucy would be coming home with us. I really thought we’d have forever to show her how much we loved her. It seems like an unlikely failing for me, because I’m constantly trying to remind myself not to take things for granted. And of all things, how could I take her for granted? I’m so mad at myself that I had to relearn that lesson with something so important. I don’t know how I would have done it, but I wish I’d spent every minute possible with her. Now it seems like so much wasted time.

Anyway, what are we doing 7 months after our Lucy Anne was born? Today we’re driving to Bakersfield to spend the night visiting with friends at the Ronald McDonald House. Our good friends Autumn and Aaron are coming to meet us with their sweet little boy Talen. We haven’t seen them in a couple months, so that’s fun. Tomorrow morning I have a check-up with my OB. I’m not as nervous this time as I was last time, because by now the baby is very squirmy (it woke me up with a kick last night), and we heard its little heart beating strong with the home doppler last night.

I can’t believe it was only 7 months ago that Lucy was born, and I’m almost halfway through this pregnancy. Crazy how things change. It goes without saying that every day is a struggle – with guilt, anger, fear, and mostly sadness. I wish I could think about my little girl and just be happy, but every time I think about her I remember everything we’ve lost. I hope eventually that will change. Until then, we’re just sort of getting through. Apparently there are some people who think it’s somehow less of a loss if you lose a baby, but I don’t know how anyone could think that. I’ve never lost an older child (God forbid), or even anyone else very close to me, but losing Lucy hurts in a way I never knew was possible, and I really don’t think it will ever stop.

Still, I don’t want to sound like life is all bad. It really isn’t. Feeling this baby move makes me really happy (it’s dancing to the music I’m listening to right now – it often starts kicking when I listen to music). David and my family and the autumn all make me happy. On Halloween David and I will have been together 11 years, and that makes me happy. I just feel like part of our happiness is missing, and our Lucy Anne should be here with us now.

A general sort of update

Lucy has been gone 5 months now. She would have been almost 7 months old. The monthly anniversary of her death is starting to not be quite as hard. Or maybe it’s that it’s just as hard as any other day, and they’re all hard. We miss her so much.

About a month after Lucy died, David and I were in some store. I remember for a while it felt weird to be out in public. So many people around here knew what had happened, so I felt a lot of pressure to seem a certain way – like I had to make sure I looked sad enough, or something. That’s kind of a ridiculous thing to worry about when my heart felt like it had died with Lucy, but I was still worried about what people would think if I smiled. It’s weird to me now that I worried about that, because at this point it’s hard for me to keep it together in public sometimes, and I find myself hiding out occasionally when I can’t quite stop the tears. Anyway, that wasn’t my point. My point was that a store employee went out of her way to tell us that we looked so cheerful. She said that we both looked happy. It was memorable because I don’t think either of us were happy. When Lucy died, I thought that we would be really sad for a while, and that it would slowly start to feel a little better. That doesn’t seem to be how it works for us, though. We are genuinely happy sometimes now, but the sadness is always there underneath, and I think it always will be. But I guess it’s not surprising that we’re happy sometimes, and I’m starting to feel less guilty about those happy times. Lucy was a sweet baby, and I really think she loved us and would have wanted us to be happy. And I realized that it doesn’t mean that I love her any less or that I miss her any less. We have a lot to be happy about and to be grateful for – good friends, family, a good life, each other, a new baby. Still, despite the happiness and the gratitude for what we have, the grief is often overwhelming. Sometimes I can’t be logical and remind myself of all those good things, and I feel so angry. A lot of times I feel like I would trade all of that to have Lucy back. I don’t know, all the feelings are confusing. There’s nothing straightforward about grieving.

My pregnancy is going pretty well and has mostly been uneventful. I’m feeling better now, and I’ve been feeling the baby move for a couple of weeks now, which is exciting (and also reassuring, because I’m often anxious about it). This baby seems to sleep most of the day, then wakes up when daddy comes home and starts talking. That’s what Lucy did too. I had an appointment a little over a week ago to check my cervix (4 cm, better than ever), and we got to see our little one wiggling all around. We’re waiting to find out the baby’s sex until it’s born, but the ultrasound tech knows if it’s a boy or girl anyway. Everything looked really good – baby moving a lot as usual, even sucking his/her thumb briefly. Whereas Lucy consistently measured a little small, this one has been consistently big ever since week 12. That makes me feel just a little better, because if this one does end up being born early, a little extra weight will help. I got an infection and had to take antibiotics, because if left untreated, it could have caused preterm labor. That was scary, but it seems okay now. David and I have both been sick, but we got our flu shots, and David got his pertussis immunization (I got mine last April). Last week I started the 13 hydroxyprogesterone shots to help keep me from contracting. David gives me the shot once a week from week 17 to week 37 in my hip. Neither of us likes it, but he really hates it. Still, it’s a small price to pay for a little more peace of mind. Here are some of the most recent pictures of our little squirmer:

Saying hello.

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Sucking his/her thumb.

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Cute profile.

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Now one for Halloween: freaky ghoul skeleton baby! Just kidding. He/she has very cute . . . zygomatic arches? Some ultrasound pictures are just not “cute,” but I’m happy to see all the parts in the right places.

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We went for a picnic in the mountains yesterday, and in the evening David made me a delicious dinner, helped me get my hard cider started, and then made brownies. I really lucked out with this man. I’ve received a lot of support and love from friends and strangers who read my blog posts, but sometimes it seems a little unfair. You guys don’t get to see how amazing David is, and I couldn’t have done any of this without him. It’s hard for me to even explain how important he is to me, and how wonderful he has been through all of this. He’s more private than I am, so he won’t say any of this for himself, but I’d like everyone to know what an incredible person he is.

A Long Road

Today Lucy would have been six months old. We’ve had a lot to think about lately with the surgery and the new baby, but we’re still missing Lucy as much as ever. She’s been gone four months now, but I think it’s harder than ever. I still can’t think of her for more than a minute without crying, and I think of her throughout the day. It’s awkward in public, but it’s hard for me to choke back the tears sometimes. I think about what our lives would have been like now, but it’s almost too painful to bear.

I have a new niece, Hallie, who is 2 weeks old now. I love her dearly, but it’s emotional for me to hold her, knowing she should have grown up with her cousin Lucy. She’s such a joy, but she reminds me of all we’ve lost.

It’s hard to know how to deal with this kind of loss. We’ve been going to a meeting once a month for bereaved parents, and we’re going to see a counselor starting next week. I thought it would just slowly become more bearable, but it really hasn’t. When I think about the magnitude of a life without our little girl, it feels too overwhelming to deal with, and I just want to scream with anger and pain.

We haven’t moved any of Lucy’s things in the nursery. Partially that’s because we’ve been so nervous about this new baby that we didn’t want to make any changes until we were more confident. Partially it’s because I just can’t move her stuff. I have no idea what I’m going to do with it, because I don’t really feel ready to put it away, but the new baby will probably need a changing table. I just can’t worry about that yet. Maybe in 5 months.

Before Lucy was born, I felt like I had a pretty good idea about what kind of mother I’d be. It wasn’t super idealistic or anything – I knew I was going to make mistakes and that I probably wouldn’t live up to all of my ambitions – but I felt like I’d be a pretty good mom overall. It’s something I’ve thought about since I was a kid. Now, though, I feel a lot less sure. I still plan on being the best mom I can be, but I don’t feel as confident. I worry that too much of my attention will be spent on Lucy, and that my living children will come to resent her or me. I don’t want to live in the past, and I want my kids to know that they’ll always be my first priority. But the way I am now, I have visions of a bemused toddler staring at a mommy who’s crying and staring off into space. I don’t want it to be like that.

It’s amazing, though, how your life can change in 6 months. In the last six months, we had a baby, bought a house, made tons of new friends, lost our baby, got pregnant again, and had surgery. Who knows what will happen in the next half year. Hopefully it will bring some healing, some peace of mind, and a new joy to our lives.

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This is the picture of Lucy I have on my phone at the moment. I love the look on her face, and the flared nostrils. I love that you can just barely see the blue around the edges of her eyes and her long eyelashes and her soft hair. I really love all my pictures of her, but this is the one I’m looking at now.

I miss you Lucy. Happy 6 months, sweetie. Mommy and Daddy love you more than you could ever know, and our lives will never be completely whole without you.

Lucy’s Last Days

I don’t think it’s going to get any easier for me to write this, and my memory isn’t getting any fresher, so I’m just going to start. Warning, though, this might be kind of disturbing to read. I don’t know if this will help anyone, or if it will help me to write it, but it feels like I need to write it to finish the story.

We left Lucy on the morning of Friday, May 18th. She’d had a few good days, and Dr. P thought she’d be fine if we went home. We packed our stuff, visited her in the morning, and David held her for a while. When we left, she seemed like a happy, healthy baby.

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Friday and Saturday, we actually started to get a few things done at the new house. We mowed the lawns, put together the changing table, and started putting together Lucy’s new crib. We were doing so well, and were so comfortable with how well Lucy was doing, that we thought maybe we’d stay just one more night to finish the crib. When I called to check on her Saturday afternoon, though, her nurse sounded a little worried because Lucy wasn’t peeing enough and was getting swollen. Of course we decided to go back to Bakersfield. We finished eating dinner, then drove back. Honestly, I was a tiny bit irritated, because we were finally getting things done, and I was sure the nurse was overreacting. I mean, Lucy had never had trouble peeing, and she had been swollen before. I fully expected it to be nothing.

When we got back, we went straight to the hospital. Lucy was a different baby than she was when we left. She was swollen, and she seemed sick, which she never really had before. I know that sounds strange, because she was being kept alive by life support her whole life. But there’s a difference between a baby who is premature, and a baby who is premature and sick. Lucy never seemed sick before – she was always active, never really lethargic, and always responsive. This Lucy just laid there, looking swollen.

Oh God, this is so hard.

Her poor little body was so bloated. She held our hands and looked around at us once in a while, but didn’t do much of her characteristic squirming. She still hadn’t peed. Dr. P said her kidneys weren’t working – she was in renal failure. They were giving her alternating doses of saline and diuretics to try to perfuse her kidneys, but nothing worked. We went back to the Ronald McDonald House late that night to sleep a little and clean all the pumping equipment, but went back to the hospital at 5 am when their last dose of diuretics still hadn’t worked. I called my parents, who came immediately (as soon as my dad turned around from his trip to the airport, where he was supposed to catch a plane for work). This is where things start to be fuzzy and confusing for me, because we hadn’t slept and everything was just happening so fast, so I’ll just try to relate what I can remember.

On Sunday morning, with my parents there, we had Lucy baptized by the hospital chaplain. It was really nice, and many of the nurses joined us for the ceremony. David’s parents made it not too long after that, and sat in the waiting room with my parents. Other than that, David and I spent most of the day just sitting with Lucy. I don’t remember what we ate or what else we did, except that David and I took turns trying to nap out in the car. That didn’t go so well. Dr. P was continuing to do blood gas tests to monitor her blood pH, among other things, and they were never good. Her breathing got really bad at one point, and she was up to 100% oxygen. They were able to get it down a little later, but she was having a hard time breathing.

What had happened was that the yeast infection she’d been battling was becoming too overwhelming. They’d just discovered that it was resistant to the antifungals, so they were starting to try a different, more potent drug (with worse side effects, of course). As far as I understand it, the infection had sort of settled into the lining of her intestines, making them swell a lot. All of the liquid in her body was going into swelling, instead of into her kidneys, which is why she’d stopped peeing. Dr. P still thought it was possible that it could all turn around if her kidneys would start working again, so that’s what we were hoping for. It was so painful seeing her like that and not being able to do anything. We just sat there, telling her over and over that we loved her and that we were so proud of her. All we could do was hold her tiny hands and let her know we were there.

By that evening, she was gray, and so lethargic. All of her grandparents had been in to see her, and she was awake, alert, and looking around at all of us. At some point, though, she lost her ability to focus, and I don’t think she could see us anymore. I remember thinking several times during that Sunday that she wasn’t going to make it, and I felt awful, because David and the doctor still seemed to have some hope. I felt like I was giving up on her when I told her that it was okay if she needed to leave, but I just couldn’t stand seeing her like that.

Dr. P was really really trying, all this time, to come up with some way to help her. He thought of dialysis, of course, but her platelets were way back down, so that wasn’t an option (and she would have needed to be flown to another hospital for that). Her blood pressure was really really low as well, and they were trying to treat that with dopamine and dobutamine, with little success. Her nurse that day worked diligently and tirelessly to take care of her, and that night, when she was pricking Lucy’s heel yet again to take blood for another blood gas, I was so distressed. I said “is that really necessary at this point?” But Dr. P was still trying. He toyed with the idea of putting her back on the oscillator, and I just looked at him and said “Dr. P, do you really think that could help at this point? Can anything help at this point?” He sort of reconsidered, then went to confer via phone calls with some of his colleagues. I think he just really wanted to save her, but he needed someone outside the situation to tell him it was time to quit. Of course, I don’t know that for sure, but I do know it was hard for him (and her nurses and RTs, of course) as well.

At that point, it was late Sunday night. We knew we were near the end, we were just waiting for the doctor’s official say. Lucy was worse than ever, although I feel that she still knew we were there, even if she couldn’t see us. Even though she was just lying there, whenever one of us held her hand, she would squeeze back. Dr. P finished his phone calls and came in to talk to us. By then, the wonderful nurses had cleared out the nursery (then empty) for our parents, so they could be closer. The doctor told us that there were a few things they could still try, but they had almost no chance of success, and would be very invasive and probably painful. The swelling had gotten to Lucy’s brain by then (which is probably why she couldn’t see us anymore), so even if her kidneys did start working, she would have neurological problems that would most likely kill her anyway. And with her body all gray like that, we could see that her right lower leg was bright red and even more swollen – the infection had gotten into her bones, which definitely wasn’t helping her platelets. Dr. P told us there was basically zero chance of her ever coming home, and we knew it was time to say goodbye.

Lucy’s grandparents all came in to see her, then things happened quickly. Lucy’s nurse and respiratory therapist, both of whom were there the night she was born, carefully removed all the wires and IVs. They gave her a large dose of pain medicine, enough to be sure she wouldn’t suffer. I brushed her hair with a soft little brush, because she always liked having her head touched. We changed her last diaper. Other than that, we held her hands the whole time they were getting her ready, and she kept squeezing our fingers the whole time. We just kept up a non-stop stream of “we love you Lucy, we love you so much. We are so proud of you, sweetie, don’t be scared, we’re right here.” Oh God, I hope she wasn’t scared.

Then David and I went to sit with our parents while they removed her breathing tube. They wrapped her in a soft little blanket and brought her in to us. They gave her to David first, and left us alone. After a minute, David handed her to me. It was the first time I’d ever seen her face without all kinds of tubes, and she was beautiful. It was also the first time I’d been able to hold her normally. I have to admit, I had this irrational hope that they would put her in our arms, and she’d just miraculously keep breathing, and that she’d be okay. That’s not what happened, though. As I held her, I kept talking to her, and I kissed her head, and her mouth, and her cheek. I noticed when she started getting cold, and I just wanted to keep her warm. I wanted to warm her up, but I couldn’t.

Ten minutes later, Dr. P came and listened for her heart, and told us that she had died. He then left us with her, and came back to do a final check 10 or 15 minutes later. All of Lucy’s grandparents got to hold her for the first time then, and then we held her a few minutes more. It was so hard to let go of her, but after a little while I kissed my angel goodbye and we asked the nurse to come get her – she was gone. That was around 12:30 am, Monday, May 21st. The worst day of my whole life.

As I’ve said many times before, losing her is the most awful thing that has ever happened to us. It’s been devastating, and I still cry every single day. But I’m so grateful that she was able to die like that, if she had to die that early at all. She went peacefully to sleep in the arms of her parents, surrounded by her grandparents. She didn’t suffer much, I think, and I hope that she knew how much we loved her – that she couldn’t possibly have been loved any more than she was.

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.