Why have this blog?

A blogger - who in all other regards I would generally agree with and probably get along with in person - recently devoted two posts to these "baby loss" blogs. She questioned why anyone would have one, why people feel the need to post pictures of their children who have passed away, and the general mental health of someone who keeps this type of blog. She believes it "cheapens" death and the emotions of grief and sadness, and is disrespectful to the dead. It obviously sent a ripple through our little close-knit community and hurt deeply many of the bloggers that I love. Because I know that these aren't uncommon thoughts, I wanted to share the response I posted to her blog (things I added afterward for clarification in brackets):

I just wanted to let you know another side, maybe. I lost my son at 20 weeks pregnant. I loved him for five months that I carried him, and for the 20 minutes he lived after he was born. Losing him is the worst thing that's ever happened to me. It absolutely broke my heart. I blog about it for many reasons, but mostly because it's cathartic for me to get my feelings down on paper (per se) and because it allows me to point friends and family to one place for updates on how I'm doing, rather than having to repeat it constantly. In five months of pregnancy, I grew attached to the little being I was feeling every day, and I had plans for the future of our family. So many plans. On top of the loss of an actual physical person, I'm mourning the loss of all my plans for the future.

I started my blog as a pregnancy blog, and after he died it turned into a loss blog. Hopefully if I become pregnant again in the future, it will be about that. While right now it certainly talks about my son a lot, it's a life blog...and right now, in this point of my life, I'm mourning him.

I know it bothers you, and I know it bothers other people, but the other "baby loss" blogs out there have helped me tremendously in the healing process. Knowing that I'm not the other one who has suffered this loss, knowing that the feelings I've felt are normal, knowing that missing my son is totally okay - that has helped me come to a good place. While obviously the subject is controversial, I also enjoy the pictures. It makes their children more real, and gives them substance. It lets me see other babies that passed away around the same time as my son, and validates my experience and my journey. Believe me, blogging has not hindered my healing or caused me to focus on my loss. It's been the complete opposite. If those blogs didn't exist, I'd probably be in a dark corner cradling his baby blanket and trying to feed it.

I have pictures of my son. I took them while he was alive, but it's likely that they would bother you or anyone else just as much as dead baby pictures do. People see a small, under developed baby...I see my son. I think he was beautiful and I'm proud of him, and I enjoy sharing his pictures when people ask to see them. No, I don't have any on my blog, but it's not because I don't want to post them. It's because I'm scared of the reactions of people who might stumble across them. No one should have to censor what they post on their personal blogs - your posts are great examples of that - and I hate that I'm scared shitless to share my pictures.

For many years, taking pictures and celebrating the dead was the norm. Death is and was an everyday occurrence. It's only been fairly recently that people have stopped talking about it and stopped being open about it. The community is trying to change that and to get rid of the stigma associated with dead babies. Yes, it's disconcerting and maybe even traumatic for people who haven't suffered losses to come across these types of blogs, but they are vital to our little community and essential for our healing - since death [particularly baby death] has become such a terrible, unnamed thing in our society, we have to find connections through things like these blogs. And it is terrible and unnamed - after my loss, six people who I've known my entire life came up to me and told me that they suffered similar losses....and I had no idea. These people all have carried an enormous amount of pain inside them for years (one was 80 and still cried on a regular basis because of a loss 60 years ago) because of that stigma - if it was a brother or parent that died, they wouldn't have thought twice about sharing their grief. And yes, these babies didn't life a full life, but we imagined a full life for them, and losing that hurts as much as anything else. Hopefully [because I've had the chance to be open about my loss], when I'm 80, instead of having this secret [grief], I'll remember my son and the small amount of time we had with happiness, and to everyone who knows me it will just be a part of me - not a good thing, certainly, but not a bad thing. I had a baby who died, I loved him, and that's just a part of my life.

Anyway. I would never expect you or most people to be comfortable with these blogs. But perhaps this will give you some small insight into the world of why they exist.

Book Club

Betsy mentioned in her latest blog post a book about baby loss that she read and enjoyed (linked below). I can't second her recommendation more; it was an amazing, powerful read. When I finished, I had a huge smile on my face and tears streaming down my cheeks. I was overjoyed at having found this book, heartbroken at her story (and mine), thrilled with the happy ending. While the details she wrote about are hers alone, in the overall story she could have been writing down the the music to a song from my own heart. And that song is one familiar to all DBMs. I started highlighting passages, but had to stop when I realized that on one page more was highlighted than was not. At one in the morning, the second I finished it, I emailed her to let her know how much it touched me and how perfect it was. I'm sure the email was completely nonsensical and full of grammatical and spelling mistakes, but I had to let her know how it touched me.

The book is called An Exact Replica of a Figment of My Imagination, by Elizabeth McCracken. I can't recommend it enough. I wish I could buy a copy for everyone who has gone through this and I wish I could make everyone who doesn't understand what I'm going through read it.

Two other books that I also found comforting and enjoyed (well, as much as one can enjoy a book while they are in the throes of grief) are Naming the Child, by Jenny Schroedel and A Grief Observed, by C.S. Lewis (yep, that C.S. Lewis). Both great books. A little more religious, but I'm not a religious person at all and didn't find that aspect overwhelming with those books like I did some others. A Grief Observed is about the death of Lewis's wife, but his insights are universally applicable.

All three highly recommended, and all three are fairly quick, easy reads.

(C.S., Jenny, Elizabeth...I take kickbacks.)

(C.S. I know you're dead but you can send some winning lottery numbers my way and we'll call it good.)

Dr. Stitches

I just got off the phone with the Dr. Miracle I talked about in my previous post, or Dr. Stitches, as Courtney calls him. We were on the phone for about an hour and 15 minutes...and holy cow, does that man talk a lot! But in a good, "I'm-really-passionate-about-what-I'm-telling-you" way, not a condescending "I'm-the-doctor-so-you'd-better-listen-to me" way.

We went over my history in more detail and he was more convinced than ever that I have incompetent cervix, and he's certain that when I talk to the doctors they'll agree. We (well, he) also talked about the types of cerclages in details, and why he believes that the only person who should ever have a TVC (transvaginal) is one who refuses to deliver via c-section and who is willing to risk the death or extreme prematurity of another baby. His mission is to replace all TVCs with TACs (transabdominal), as he believes they are safer and more effective by miles. We talked about the risks, the procedure itself, future pregnancies, and what the next steps would be if I decided to pursue this option.

Seriously, we talked for over an hour and it would be impossible to summarize it all here, so if you have any specific questions, leave them in the comments and I'll try to answer.

But I think it's obvious that I'm in love and would drive myself to Chicago tomorrow if I could.

People are Good.

That friend, "Sally"?

She amazed me today. I'd posted a link to "Faces of Loss, Faces of Hope" on Facebook and forgotten that my story on there linked back to this blog. I'd never meant for her to see anything that I posted - this was my place to vent about things that might be misunderstood by outsiders.

But she saw it.

She saw everything.

And she wrote me a beautiful, sincere apology. I was visiting my grandma in the hospital (recovering from hernia surgery) so I couldn't call, but I immediately texted her to let her know I got it and how much her words meant to me. We had an open, emotional exchange and I felt so much better afterward. I hope she did too.

Looking back at what I wrote now that we've talked, I'm ashamed. I considered deleting it all. But you know what? It was honest and raw, and what I was feeling. I'm sure it hurt her to read it; it hurt me to write it and to experience it. Of course, I never meant for it to be painful for her - just a catharsis for me - but in the end, I'm glad for both of us. It healed a wound and closed the book on a chapter that was extremely difficult for me. And okay, the wound probably isn't completely scabbed over and the book isn't closed all the way, but the process has begun. When we were talking I got excited to see her baby belly and meet her little man in a few months. I know it will never be easy - she's living the life I should be living, that I WANT to be living more than anything - but I'm still looking forward to it. Or at least that's what I'm telling myself. And I am. I think. Right?

Dr. Miracles?

My mind is just spinning. (This is going to be a long one; I apologize in advance. But when aren't they?? I write like I talk....a LOT.)

I have a friend who lost her twin boys at around the same time I lost Caleb. She had true incompetent cervix; she was 2cm dilated and her bag of waters was bulging out before she went into labor. Recently, she found her "Dr. Miracle" and has been having consults with him. She emailed me and told me that during their consult, he mentioned that he firmly believes nearly every case of mid-trimester loss can be linked back to one cause: incompetent cervix (IC), where your cervix either funnels or opens prematurely. To treat IC, most doctors will do something called a transvagincal cerclage (TVC). This puts a stitch at the bottom of your cervix to keep it closed. The problem with it is that because it's low in your cervix, your cervix can still funnel down to the stitch, creating a V shape that puts all the pressure from the bag of waters on one small point, so the chance for pPROM occurring again is present. To prevent this, a patient with a TVC usually goes on bedrest for the remainder of her pregnancy. It has about a 80% success rate. If all goes well, the stitch is removed once you've reached full term and you can deliver normally. Another way of treating IC is by placing a transabdominal cerclage (TAC). This puts the stitch at the top of your cervix and is 99% effective, and requires no bedrest. However, it's permanent and all future pregnancies must be delivered via C-section. Most doctors and insurance companies won't approve a transabdominal cerclage unless a transvaginal one has already failed.

For several reasons, I didn't think that IC was the cause for me, but at her urging I looked up his profile and emailed him. My email to him and his reply to me are below:

MY EMAIL

Hi, Dr. Haney!

I was given your name by several different people. I'm not sure if my situation is something that can be treated, or if it was truly a "fluke". My water broke at 18.5 weeks pregnant in April of this year and I went into labor at 19.5 weeks. Obviously the baby did not survive. One of your huge advocates, Txxxxx Mxxxx, said that you mentioned during her phone consult that almost all cases where the woman went into labor mid-trimester are cases of IC. I THINK I'm one of the rare cases where that wasn't the situation, and just wanted to hear your thoughts and be sure that I and my doctors are not missing something.

According to the last ultrasound I had, on 4/9 (my water broke on 4/7), my cervix was high and closed. They didn't do a vaginal ultrasound, though, and I'm not sure how accurate abdominal ultrasounds are for cervical length. When I did go into labor, I was a fingertip dilated and they had to give my Cytotec to allow me to deliver.

I have had a full RPL panel and an HSG and thus far none of the tests have come back abnormal. My doctor suspects placental abruption, but the pathology came back clear without any signs of that. I had spotting during the pregnancy and I know that blood can act as an irritant and therefore cause your water to break.

I'm assuming that because my cervix wasn't dilated when I went into labor and the last ultrasound showed a good cervix length that I didn't have IC, but just wanted to verify and ensure that we're looking at all possible angles.

Thanks!
Lara

HIS RESPONSE EMAIL
Dear Lara,

I am sorry to hear of your loss and am sure this was devastating for you. You history is virtually conclusive of an incompetent cervix. There is virtually no way you could have preterm labor or an abruption at 18.5 weeks. That is why your pathology revealed nothing as the problem is your cervix, not placental abnormalities. If your spotting occurred in the weeks prior to your loss, this likely represented the bleeding associated with cervical changes as is common at term when cervical changes precede labor. I can explain it better over the phone but the funneling of the cervix which is seen in IC is caused by inadequate support at the top of the cervix. As the membranes descend into the top of the cervix they contain the amniotic fluid and the hydrostatic pressure from the fluid pulled by gravity widens the “incompetent” cervix. As the membranes containing amniotic fluid continue downward and shorten the length of the cervical mucus column, vaginal bacteria come into contact with the membranes and the inflammation causes the rupture of your membranes. Since the dilating force is related to the descent of your amniotic fluid-filled membranes, once your membranes rupture and the fluid is lost, your cervix no longer has this hydrostatic wedge and the cervix will temporarily appear normal by ultrasound because of its elasticity. To detect funneling, you would have to have had your ultrasound prior to the rupture of your membranes.

Quite simply, this was no fluke as membranes don’t rupture with a normal cervix. Unfortunately, my experience tells me that you have IC and will undoubtedly repeat this clinical course with subsequent pregnancies. I can appreciate that this may be a bit confusing so I would recommend that we talk on the phone so you can ask all your questions and get a clear understanding and make a decision you are comfortable with.

You can arrange that by contacting my assistant, Ms. Exxx Fxxxxxxx, at 773-xxx-xxxx. I look forward to speaking with you. Good luck.

A.F. Haney

Needless to say, this shocked me. It was absolutely not the answer I expected. My mind went a million places.

This was never even mentioned as a possibility by my OB. Is this a cutting-edge study? Is it something that most doctors have considered and dismissed? Is this one of those beliefs that have doctors split?

Could it be a scam? Honestly, one of the first thoughts I had was, "Yeah, but isn't he going to say that to everyone? Is he preying on bereaved parents who would do anything to have a living baby to get them to do this super expensive procedure?" Would a doctor really be a scam artist? I don't know enough about the medical field to know, but we're conditioned to respect doctors and trust their opinions.

His profile looks respectable, though, and his explanation makes complete logical sense to me. I don't see how it can "just happen" - doesn't there have to be a cause for everything?

I'll take this email and whatever information I get from him during my phone consult (scheduled for Friday) and present it at my MFM appointment and see what they say. If the MFMs don't agree, then do I go against their advice and look into it anyway? Do I get a third...or fourth...or fifth opinion until I find someone else who agrees with Dr. Haney? What if the MFMs are on the fence about it? What if they say it's not the cause at all? How would I even pursue Dr. Haney's ideas without offending my local team of doctors?

And I hate to say it, because I would do absolutely anything for a live baby (see: wearing diapers on my head), but I would be disappointed that I'd lose my chance for a natural, unmediated delivery if I had to have a TAC. Obviously I would come to terms with it, but it'd be yet another thing to mourn the loss of (along with Caleb, my innocence, my naivety, the excitement for another pregnancy, the ability to say "when" instead of "if" when talking about the future...). It's the least of my concerns, but since I'm being so honest here, it was another thought I had. "Oh...there goes my hippie, soothing, moving around, unmedicated, natural birth plan!"

So. many. questions!!

I hate that the world of maternal fetal medicine (and even regular OBs and RE and all that) isn't conclusive and that there are so many differing opinions. It's up to each of us to find the theory/doctor/practice that we believe is most correct, and if we choose wrong....we could end up with another dead baby.

Life, as it happens.

Since having a huge, epic cry over finding out that our "friend" is having a boy, I've been doing pretty good. And I have to give a shout out to Chris (who doesn't read this, but I still feel the need to give props) for dealing with me that night. I know he didn't quite understand where I was coming from, but he just let me cry and held me, which is exactly what I needed. And in the morning, I felt better. I won't say I'm entirely at peace with the fact that they're having a son (and that she's blogging about "folding cute, little clothes for my son...my special little gift to come.") but I got most of the emotions out during TearFest July 2010 and have been feeling pretty great since then.

I've talked a little bit before about our plans for any future pregnancies and what we've been doing thus far. I would wear a dirty diaper on my head if it meant that I would have a take-home baby in the future. I'd accessorize with air fresheners and glitter, but damn straight I'd rock that diaper 24/7 if it'd help. Hence the supplements I'm taking, the acupuncture I have scheduled for next week (so excited), the tests I've brow beaten my OB into performing, etc. Anything I can do to achieve a healthy pregnancy and healthy baby, I'll be all over.

That being said, I don't really know that my OB is on the same page as I am. I love her - she's very nice, extremely competent, and also very unworried. She's confident that it was just a fluke and that I don't need to make any changes for the next pregnancy, especially after all the tests came back normal. She's probably right. But I can't shake the feeling that I need to be doing SOMETHING proactive next time.

So today I called the Maternal-Fetal Medicine department (MFM) and scheduled a consultation. After my water broke, I saw one of the MFM doctors and he had mentioned that while not necessary, I could be a candidate for MFM care next time. Since I haven't felt 100% comfortable with the lack of action plan for next time (other than a couple extra checkups/ultrasounds), I want to explore my other options for care should I get pregnant again. I am not hoping for miracles; I don't think they'll be able to give me answers as to why this happened; I don't think they have some magic test that hasn't already been performed. I am hoping that they'll be more understanding and offer me weekly or bi-weekly checkups and ultrasounds to keep my mind at ease; that they might be more aggressive with treatments (even if unnecessary...if it can't hurt, I want to do it); that they might be more willing to work with an admittedly bat-shit-crazy-paranoid woman (a title which I loathe, but is well-earned).

I told Chris the other day that I have this sinking feeling that our journey isn't over yet and that this will happen to us again...that there is something wrong with me that the HSG and RPL screen didn't pick up. I'm sure that's coming from a place of pure terror and is normal when when something this devastating occurs for seemingly no reason. But in the back of my head, I can't help but think we have to go through this one more time before we get our take home baby. I hope not. I really, really hope that's not the case. I know people who have gone through this more than once and it's so fucking unfair. But they made it through...and I know that if it does, I can too. That being said, please god no.

Where's that crystal ball when you need it??

Lucky

I wasn't sure I'd ever call myself lucky again, but I am, really. I am lucky enough to have some really amazing friends (I also have an amazing family and amazing husband, but that's a post for another day). July 24 was supposed to be my baby shower. My best friends had planned the date well in advance because their jobs don't give them a lot of flexibility, so they had to start early to find a date that would work for everyone. Yesterday, I should have be 34 weeks pregnant, huge, and sharing in excitement and love with my friends and family (while awww-ing over adorable baby clothes, of course). Because they knew it would be a hard date for me, they took me out to celebrate our friendship. We went to dinner, had a few drinks, and then played games* at one of my friend's parent's house. If your friends don't have amazing parents, that might sound weird, but I laughed every minute I was there.

It feels like forever since we lost Caleb, but I still haven't been without him as long as I had been with him. That blows my mind. And it won't be until the very end of August that I'll even reach that milestone. Wow.

*Telestrations. Get it. Best game EVER.