Monthly Archives: May 2012

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.

Not going well.

Lucy is not doing well. We’re waiting for the nurses to finish their shift change. She didn’t pee with the higher dose of Lasix, and she’s really swollen and unresponsive. I don’t think the nurses think she’s going to make it, but we’re not giving up on her yet. I have no idea what’s going to happen next. Thank you all for praying for and thinking of us.

We’re very worried.

It’s really bad. Her kidneys aren’t working after two boluses of saline and another course of Lasix. They gave her a bigger dose of Lasix, but if that doesn’t work they will probably transfer her to another hospital. They say she’s acting like she’s sick, and they’re giving her pain medication. I have no idea what happens next, or what they will try. I just know it’s really bad. Please please, now more than ever, keep Lucy in your thoughts and prayers. We’re just going to be sitting with her for now.

A hard day

I can’t write a full post tonight, we’re both just too tired. As soon as I write about being optimistic, as soon as I think it’s safe to go home to try to get stuff done, it all goes wrong, and suddenly we’re on the downhill side of the roller coaster. We’ve gone from the doctor thinking of weaning Lucy off the ventilator early and telling us it would be fine to go home, to a situation he says is “very critical. Worse than a week ago, and definitely worse than two weeks ago.” The problem is complicated, but the main thing is that the yeast isn’t going away, it’s become a little more resistant to the medicine she’s been on, and it has sort of settled in the fluid around her intestines. This is making her little tummy swell so much that it’s very hard for her to breathe, so they’ve had to change her ventilator settings. They’re trying a more aggressive antifungal now, one that potentially has worse side effects (one that Dr. P told me just the other day was much more toxic, so he wanted to avoid). On top of this, she’s not peeing nearly enough, so they’re alternating giving her more fluid and diuretics. I don’t know what it will mean for her if they can’t perfuse her kidneys enough for her to pee.

Anyway, she’s stable right now and not in immediate danger that I know of, but it looks like we might have some rough days ahead of us. I don’t know how people are supposed to deal with this, but I guess they do all the time. If millions of people can handle terrible things on a daily basis, surely I can too, right?

Day 52

Lucy had an exciting day today. First of all, she got to have kangaroo care time with her papa. That was very nice for both of them, and after an initial hiccup and bradycardia, she relaxed and was sat-ing in the high nineties the whole time. It was so sweet to see Lucy cuddled up on David’s chest. Sharing a daughter with him has made me love him even more, if that was even possible.

I was glad she was able to get in some snuggle time, because she had a busy morning. After we left, Dr. P did in fact put in a new shorter catheter and they took out her central PICC line. The idea is this: the catheter itself invariably becomes a place for the yeast to colonize, so by pumping fluids through the yeast-infected line straight into a huge blood vessel, you might seed the rest of her body with yeast. So by putting in a shorter catheter that only distributes fluids to blood vessels in her arm, you sort of minimize that seeding effect, thereby limiting distribution of the yeast. The problem is that not everything can be easily administered peripherally. I said yesterday that I wasn’t sure if she would still be getting TPN (IV nutrition), and that’s because many times, TPN at high concentrations can actually damage smaller peripheral veins. When it’s given straight into the vena cava, as it was with the PICC line, it’s dispersed much more quickly and doesn’t have time to cause damage. Dr. P assures me, however, that her TPN is not as bad as that. Nonetheless, he’s working to get her off of the TPN entirely as quickly as possible. Today he increased her milk feedings to 4.3 mL/hour, decreased the TPN to 1.5 mL/hour, and decreased the concentration of the TPN from 15% to 12.5%. She’s tolerating her new higher feedings well, too, with only about 1.2 mL of residuals, last I checked.

As if that wasn’t enough excitement for one day, Lucy went ahead and did the thing I’ve been most worried about all this time: she pulled out her breathing tube. She’s been producing a LOT of oral secretions (basically she’s been really drooly), and even though they’ve been re-taping her tube often, her saliva makes the tape really slippery. This morning after she had her new line in place, her nurse heard her making noises. Since she shouldn’t be able to vocalize at all with the ET tube in place, her nurse was alarmed, but also confused because her vitals weren’t affected yet. Sure enough, she’d managed to pull her tube all the way out and was trying to chat with her nurse, or something. After a minute (I don’t actually know how long it was), she was affected and had to be bagged before Dr. P could quickly re-intubate her. I’m always terrified that she will do that, but we actually learned something valuable from this, which is that Lucy may be closer to breathing without mechanical ventilation than we originally thought. Dr. P is now saying that maybe he will try her on CPAP (continuous positive airway pressure, the next step down after the traditional vent) when she’s getting full feedings and she’s no longer on continuous feedings. That’s because the continuous drip is a little hard on her tummy, making it a little distended, and the CPAP can force extra air into her belly. So when she’s getting a bolus of milk every 3-4 hours, he may try her on CPAP. Right now she’s getting almost 75% of her nutrition from milk, and she may reach full feedings within the week, so I’m very very excited about the prospect of getting her off the ventilator sooner than expected. However, just because they’re ready to try her on CPAP doesn’t mean she’ll be ready to succeed. Many times babies don’t last very long on CPAP the first time they try and have to be put back on the ventilator, so we’ll just see how she does when we get to that point. It’s just exciting that they’re starting to think about these things.

Lucy was down in weight a little today, to 1240 grams. She was given diuretics after her last blood transfusion, though, so that often causes her to drop a little. Her blood gas today was still within normal limits, although her CO2 was a little higher at 49. I was most excited about her CBC, though. Two days ago her platelets were at 19, and today they were 31. That’s such good news to me, because she did not have any platelet transfusions in the intervening time. She did have two blood transfusions, but those never helped her platelet levels before. We’re really hoping that this means she’s starting to clear the yeast infection, but we’ll have to see how it goes next time.

We’re in Ridgecrest now, and we miss our Lucy terribly, but it’s good to be home. We even managed to get a few things done in her nursery, and that was fun. We’ll be heading back either tomorrow evening or Sunday morning, if we can stand to be away another night. It would be good to actually get some work done. Today was a really good day for Lucy, though, and I’m really encouraged by her progress. Working in our new house, I can absolutely see us being a family there, and I cannot wait for that to be a reality.

Now, pictures of Lucy and her daddy:

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Look how light her hair is getting!

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Here she is just sleeping, but every time David spoke, she would try her very hardest to look up at him. I love how peaceful she looked.

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He sure does love his little girl:

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Day 51

So today was a good day for Lucy. Her CO2 this morning was 34, and she didn’t have a CBC this morning, so I’m not sure about her platelets. She weighed exactly the same as she did yesterday, which is not that surprising because apparently she had a huge poop (and another tonight). I really appreciate that, though, because it means her bowels are working which is a good way to avoid NEC. Her feed remained the same today, 4 mL/hour, because she was getting blood and they didn’t want to overwhelm her. So far she’s done fine getting blood through the PICC line. So her breath rate on the vent was reduced to 33 again, and as of tonight her CO2 was 46, still within normal range.

Note: David objects to my frequent discussions of Lucy’s poo. Hopefully you’re not offended.

Now, though, Dr. P thinks she’s getting enough milk that he’s planning to remove her PICC line tonight and put in a smaller catheter instead. The idea is that it will (hopefully) help to clear her yeast infection, but I have mixed feelings about it. She’ll be getting all milk and no TPN (I think? Maybe? I could be wrong there), which he said is enough at this point to sustain her, although possibly not enough for her to keep growing as quickly. I guess it’s a tradeoff, but I really would like her to be getting all the calories she can, so hopefully he will be able to continue to increase her milk quickly. I think he’s planning another milk increase for tomorrow, so that’s good. I’m glad we happened to be there when he was considering this, because otherwise I would have gotten a call in the middle of the night saying “I’m doing this, and here’s why, is that okay?” I always say yes, because he’s given me no indication that he would do anything of which I wouldn’t approve, but he’s kind of hard to pin down. The neonatologists are like ninjas sometimes, they slip out when you’re not looking if you’re not careful. I’m really very confident in their treatment plans, though, and I’m pleased that Dr. P has been conferring with other doctors around the country about her treatment.

We had a couple of good visits with Lucy today, although she was giving me a heart attack earlier. She was going CRAZY, flailing her arms and legs like a madwoman. I was actually having a hard time keeping her arms down. How is it possible to have trouble holding down a 2.5 lb. baby?? Then they put her on her tummy, claiming it would calm her down, and instead she lifted her whole torso off the bed and slammed her face straight down. She could do that all she wanted if not for the ET tube, which is why I was so nervous. Her nurse had to call in backup to help move her. She wasn’t distressed or anything, and her saturation stayed pretty good that whole time, but she was just super energetic. They say that’s a good sign, but I wish she’d save some of that energy for growing, instead. When we saw her again tonight she was fast asleep and power-sucking her pacifier. She sucked that thing for probably an hour straight before waking up and starting to flail around again. Her nurse says when they start doing stuff like trying to pull their tubes out, that means they’re almost ready to come off the ventilator. In that case, she was ready almost as soon as she was born, but I can still be hopeful.

The Reglan is working pretty well and I haven’t had any terrible side effects. I’m definitely producing more milk now, but I’m afraid it will just be depressing when I have to stop taking it and the effects wear off. I figure any additional milk helps, though, so it will have been worth it. Also, I went to the opthalmologist today because I’ve been having weird vision problems since Lucy was born. I was actually a little worried that I might have a brain tumor, or something bizarre like that, because I could still see the strange effects with my eyes closed. Fortunately, my eyes are perfectly healthy, and I’ve been diagnosed with ocular migraines, which aren’t as bad as they sound. The doctor started by saying they could be caused by too much caffeine, cheese, chocolate, citrus, or food preservatives, none of which should be a problem for me. I said so, and he said “oh, they can also be brought on by stress and lack of sleep.” Way to bury the lead, buddy. So I think I’ve found the culprit, and they should go away when I’m less stressed . . . so, like, 18 years or so?

Anyway, today was a good day, and even Dr. P, always slightly pessimistic, said she’s had several good days now. When I asked him if she’d be okay long enough for us to go home tomorrow night, he said “oh yes, yes, she’s fine.” That’s about as positive as I’ve ever heard him, so that made me pretty comfortable. I still hate to leave her (every single time), but since we have to take care of things back home, I’m glad to know she’s doing well.

Lucy is such a blessing in our lives. I don’t know that I particularly believed in miracles before she was born, but if anything is a miracle, she is. I spent a lot of time after she was born wishing that she hadn’t been born yet, but I find it harder and harder to think that. Because whatever else comes out of this experience, we got Lucy, and Lucy is amazing. We are so incredibly proud of her, and we love her more and more with each passing minute.

Here she is holding onto my hand with both of hers:

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Little toes:

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Little fingers:

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And here she is suck suck sucking on her pacifier. She did that for an hour straight.