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.