“Shattered” is the word that comes to mind when I think of how to describe how I feel. I understand how it feels now to have my world completely torn apart. In the grand scheme of things, I guess most things are fine. We have a roof over our heads, we have good jobs, we have lots of support and love from friends and family, and we have each other. It’s not enough, though. Even with all of those good things, I’m still not okay.
Two months ago, I wouldn’t have been able to guess how terrible losing Jillian would feel. I obviously would have known it would be awful, but the agony is something I don’t think is possible to imagine without actually experiencing it. She was my heart, and she’s gone. A huge part of me died with her, and I have spent a lot of time wondering how I’m going to get through this. For a while, I thought I was doing so much better, and I’ve had some good moments, but the bad times are much more frequent and so much more extreme.
I’ve been having a lot of nightmares over the past week or so. In most of them, I’m going through the same scenario as Jillian’s birth, except in the dreams, the baby isn’t Jillian. Every time, we’re losing another baby. This is obviously my biggest fear when it comes to trying again. I don’t think I could survive losing another child. I’m trying not to worry about it because if I do get pregnant again, I’ll be monitored very closely, but I think the worry is impossible to avoid. We’ll cross that bridge when we come to it, but for now, I wish I could turn off the nightmares.
I think it’s inevitable to hear some people say the wrong things when facing a tragedy. As much as I try to remind myself that people mean well, there are some things that I hope I never hear again. The big ones?
“Everything happens for a reason” and “everything always turns out for the best.”
I heard both of these things today, both from the same person. I didn’t say anything after it was said. At all. I was repeating in my head “she means well” a thousand times over. I’m not sure if my silence made it clear that I didn’t like it, but I didn’t want to say anything because I knew she’d feel terribly about it.
I haven’t said anything here about the wrong things people say, mainly because I don’t want to make anyone who reads it wonder if he or she has said the wrong thing. Unfortunately, I can’t keep this in anymore. The good news is that I don’t think there’s anyone who reads this who has said the things that really get to me.
I don’t know what it is about these phrases that makes people say them, but they are like knives in my heart when I hear them. Not everything happens for a reason. Unless the person’s reason is either that my life sucks, or that they mean it literally, that Jillian died because she was born way too early and her brain hemorrhaged because the veins in her brain were too tiny and fragile and we decided to remove her life support because she would have zero quality of life, there’s not a reason for it. I’m pretty sure that’s not what people mean when they say it. I know they’re trying to comfort me, but it is the least comforting thing that anyone could say. Well, except for the ever popular “she’s in a better place.” Nope, sorry. The best place for my baby is here with me. Nobody will ever convince me otherwise.
That goes along with “everything always turns out for the best.” Unless my baby is going to manage to come back to life, this situation will not get better. We may learn to live our lives despite this tragedy, but there is not a silver lining. There is no best. This situation had the worst possible outcome. Sure, we’ve learned a lot from it, and we were truly lucky to have her in our lives, but I’d rather learn nothing and get Jillian back.
For the first few weeks after Jillian died, I had a constant ache in my chest. It was a physical manifestation of my grief that made it hard to breathe, and a constant reminder of what a terrible turn our lives had taken. It eventually eased, and then went away, but I’ve been experiencing it again over the past week or so. It’s not as constant as it was, but it’s a familiar feeling that sneaks up on me. There’s a thought that comes with it: the realization that Jillian is gone forever.
I am obviously aware that her death is irreversible, but for some reason, thoughts about things that will happen “after she gets here” creep into my head. I think I got so used to being pregnant and anticipating her birth that I haven’t yet become used to the fact that I’m not pregnant anymore and she’s really gone forever. Everything that happened over the four days of her life still feels like it was just a dream. It is so incomprehensible that when I do realize, again, that it’s real and it’s permanent, my breathing stops.
I had a handful of her dresses hanging in my closet before she was born. Last weekend, I was switching our closets around (we’re swapping bedrooms, originally planned because Jillian was coming) and in the process of organizing the closets, I decided to hang up the rest of her clothes. They’re no longer with my clothes, which feels very strange sometimes. I thought for a while that I was going to have to move her clothes with mine. As I was hanging everything, I kept explaining to her that I wasn’t hiding her clothes, that I was just trying to get organized. I felt like I was betraying her.
I still open the closet they’re in and just touch them pretty regularly. It’s an explosion of pink when I open the door, which makes me laugh and cry at the same time. She had more clothes than I did, which I knew would happen as soon as we knew she was a girl. The other night, I took out a onsie that I bought her two days after we learned her gender. It’s newborn size, and I remember holding it in the store, unable to comprehend that a baby could ever been small enough to wear it. When I held it the other night, I realized that the onsie itself was longer than Jillian. This time, I was unable to comprehend that a baby could ever be big enough to wear it.
I posted a few weeks ago about the plaster hand and footprints we have. I put it in a shadowbox yesterday. We wanted to be able to display ir but we were worried about it getting broken, mainly because we have two cats. Putting it on a shelf was out of the question. I also wanted to make sure it wouldn’t be touched, as people have wanted to do.
I was so scared that I was going to break it while I was mounting it in the shadowbox. It’s as light as can be and seems so fragile. My hands were shaking as I screwed the back of the frame on, and then I spent the rest of the day worrying that it would fall off the wall and shatter. There are now three picture hangers holding it up. I’m being so overly cautious that I know it’s ridiculous, but if anything happens to it, I may go off the deep end.
Last night at our support group, someone mentioned a family picture they have with the babies that they lost. I was thinking to myself that I wish we had a family picture that we could put up, but we don’t. We have lots of family pictures, thanks to NILMDTS, but the pain in our faces is so clear that I can barely stand to look at them. I’ve seen other families’ pictures where the parents have managed to look happy, and I don’t know how they did it. Most of the pictures of all three of us were taken right after her breathing tube was removed. There was no way for us to look anything but devastated because we knew it was the beginning of the end.
I realized this morning that my feelings about my c-section scar have changed over the past several weeks. It used to be a reminder of my pregnancy that ended too soon and a baby whose life ended too soon. It was just a crooked, ugly knife wound. I don’t see it that way now. I don’t know what changed, but now it feels like a reminder of the best thing that’s ever happened to me, which is Jillian. Her death is obviously the worst thing that has ever happened to me, but I know how lucky we were to have her, even though her life was too short.
I’ve finally reached the point where I can read and pay attention for more than a few sentences at a time. I’ve been reading a book called Empty Cradle, Broken Heart: Surviving the Death of Your Baby. As hard as it is sometimes to read it, I wish I’d started it earlier. More than anything, I think reading it would have made me feel less crazy than I have a certain times, and I could have used the suggestions on how to safely express anger (although I can certainly still put them to use).
One of the suggestions for getting anger out is vigorous exercise. One of the things that has really been frustrating for me has been my inability to go to the gym. Going to the gym is the biggest stress reliever for me, and if I’m having a bad day, I always feel better after exercising. It sucked not having that outlet when I needed it the most. I finally got back there yesterday, and it felt so good to do it. My doctor’s office told me to take it easy at first, but I didn’t listen. I had so much that I needed to get out, and on top of that, I had to keep trying not to cry, which made me work out even harder. I didn’t feel any pain (well, physical pain) while I was working, so I don’t think I did any damage, but I’m paying for it today in soreness. It feels good to be moving again.
I was a little emotional because I kept thinking about the fact that I was 24 weeks pregnant the last time I worked out, blissfully unaware of what would be happening just 48 hours later. That was hard enough, but the Empty Cradle book is what kept bringing me to the verge of tears. I was reading a section about feelings of failure, which is probably the thing I’ve had the most trouble with, aside from guilt and missing Jillian. It’s hard not to think that I’ve let so many people down, most of all, Dave and Jillian. Dave has assured me a thousand times that I didn’t let him down, but my body’s inability to carry this pregnancy longer is the reason we’re where we are. I know I couldn’t have controlled it, but there’s still a part of me that feels like I should have known something was wrong.
The sentence that pushed me over the edge was “do remember that whatever happens, you are a mother.” I needed to read that because it’s hard to feel like a mother without a baby. I have to remind myself that Jillian didn’t stop being my daughter when she died, so of course I’m still a mother.
It’s hard to believe it’s been six weeks since Jillian was born. I can’t help but think about the fact that Jillian would be that old today if she had lived. It’s hard not to picture a baby that age, even though she would still be tiny and still in the NICU. I was thinking the other day about how nervous we were to be leaving her in the hospital when I was discharged. I’d give anything to have that situation instead of this. I’ve been sick for the past two days and I keep thinking that if she were alive, I wouldn’t be able to visit and it would be next to impossible to stay away. I imagine that someday I’ll be able to live without every thought going to what could or should be, but not yet.
Yesterday, for the first time since Jillian was born, I didn’t cry once all day. I had some feelings earlier on that if I started feeling better, it would mean that I was forgetting, but that’s definitely not the case. She was on my mind all day, and I was still very sad, but I didn’t feel like I was being sucked into a black hole, which has been the norm since she died. It’s a relief to know I can feel better without forgetting. In a way, I feel like knowing this will allow me to feel even better as time goes on. Of course, I’m still a mess and have a very long way to go, but at least the pain is easing.
I decided yesterday to post another picture of Jillian. Please excuse the quality. It’s from my phone, through the roof of her isolette, and I’m pretty sure it was taken by a bleary-eyed dad in the middle of the night.
This group of pictures is probably my favorite. There’s one picture that I thought about sharing instead where Jillian has her arm sticking straight out along her face. I think she was probably stretching, but all I can think of when I look at it is that someone confused her bili light for a spotlight and is either rocking out or thinks she’s an opera star. I laugh every time I look at it, which says a lot these days. I think I’ll share it here someday, but right now I like having it as “all mine” (and Dave’s, of course). I love this picture, too.
Who am I kidding? I love all of her pictures and everything about her.
I doubt this would cross anyone’s mind (except maybe other NICU parents), but in case anyone is wondering what on earth we were doing taking a cell phone into the NICU, it was an airplane mode. I just don’t anyone to think we were doing anything stupid.
Today’s appointment went pretty well. The best news is that my uterus looked totally fine during the c-section. It’s one less thing we have to worry about. My uterus is back to its normal size, my cervix has closed, and the nurse practitioner said I’m healing perfectly. I’m also cleared to start exercising on Saturday, thank goodness.
We set up an appointment with the high risk OB in the practice for next month. As scared as I am for this consultation, I’m looking forward to it. As we discussed with our grief counselor, the only way we will be able to relax at all during my future pregnancies is if we find a high risk doctor we trust. I really hope we like her and we can come up with a plan we’re all comfortable with, for no reason other than I would hate to have to leave this practice. I really feel like everyone there (with the exception of the awful nurse I mentioned before) cares.
For example, we were discussing anti-anxiety drugs and anti-depressants and their safety during pregnancy today. I said I feel like I’m going to need something during my next pregnancy, mainly because I will be a nervous wreck. The nurse practitioner (who, by the way, called me the Saturday night after Jillian died to see how I was doing and to tell me how sorry she was) said she understands, and said, “we’ll all be a little bit of a wreck next time.” I realize that it doesn’t exactly sound like a vote of confidence, but it was the most compassionate thing she could have said. I would rather have her be totally honest with me than pretend it will definitely be okay. She has assured us multiple times that they will do anything and everything to ease our minds next time (well, except for send an ultrasound machine and tech home with us), and I know she means it.
The OB who performed my c-section came in to say hello before we left. I was touched that she came in because she certainly didn’t have to, and we wouldn’t have thought a thing of it if she hadn’t. I was even more touched by the emotion she showed when she told us how sorry she was for everything we’ve been through. It amazes me how almost everyone in this huge practice has made me feel like they actually care. It’s probably because they do. If the people we’ve dealt with already are any indication, the high risk doctor is probably wonderful.
Not much has been going on around here. I feel like we’re just going through the motions. I have my six-week follow up appointment today. I’m nervous about it, but not as much as I was about the two-week follow up. I don’t think I’ll need to be taken back to an exam room immediately like I was last time, which is good. It feels like progress. We’ll see when we get there, though.
I’m nervous that we’re going to hear something that we didn’t hear the last time. I think it’s unlikely, but it is possible. The nurse practitioner was going to check with the doctor who performed the c-section to make sure everything about my uterus looked normal. I can’t remember if I’ve posted about this before, but at one point several years ago, my doctor thought I might have a bicornuate (heart-shaped) uterus. She said that if it was bicornuate, the dip was small enough that it wouldn’t cause any problems. I kind of forgot about it, mainly because she said not to worry about it, and it wasn’t mentioned again until I got to the hospital after my water broke. After the surgery, the doctor told me everything looked fine and there was nothing in her report, but we still wanted the nurse practitioner to follow up to make sure that includes the shape of my uterus.
If I do have a bicornuate uterus, it doesn’t mean that we can’t try again. It mainly means that if I get pregnant again, I’ll be considered high risk and be monitored closely for preterm labor, which will be happening anyway. I’m sure it would cause additional anxiety for me, if that’s even possible when it comes to being pregnant again. I guess we’ll know later.