Wednesday, May 10, 2017

AFE Day and meeting my birth team

So way back on March 27 was AFE Awareness Day and since it was my first one I really wanted to acknowledge it in a special way with the hospital staff that not only brought Lucy into the world but saved my life. It ends up being a little complicated because I don't actually remember my birth team and I have no actual record and it's not like you get sent home with a list of names. All I have is the name of one nurse I know personally, the name of another floor employee I have since friended on Facebook since having Lucy, and a vague memory of a really nice nurse in the middle of the night helping me with my pee bag, and then a really nice blonde nurse walking me out of the hospital on my last day. And of course, my own McDreamy, who is the best anesthesiologist in the entire world as far as I'm concerned but I remember him because I had him with Penelope. I'm convinced I could have another stroke and recognize that man.

But that's basically the only memories I have of my entire week long stay, so not a whole lot to go on.

I put a lot of thought into what I wanted to do for the hospital and I kept coming back to it being something tangible that could be on display. Amniotic Fluid Embolism is something I had never even heard of, and this was my fourth delivery and I would consider myself to be highly educated when it comes to maternal health. I took ever prenatal class offered during every pregnancy even if the information was redundant, I researched new developments and standards with each pregnancy, I kept up with pregnancy books and magazines, I weighed my options over different types of births, even. If you remember for a hot second I thought about a home birth with Penelope and I even thought about hypnobirthing but then contractions happened and I was like, yeah.... I'll be taking that epidural because modern medicine hasn't come this far for nothing and who am I to piss on science?

I wanted to ultimately give the hospital something that they can display that would maybe have a woman ask the question, what is an AFE? Could it happen to me? But also to reassure them that yes, St. Luke's Hospital in Duluth, Minnesota is absolutely, 100% ready for you and you are in good hands.
This is what I came up with. I found a company online where you can make customize plaques and I know that while I was giving birth to Lucy they were under going a major remodel, so I wanted to make sure it was something fairly modern looking, so I went with a glass plaque. It's not a wall mount, it came with a little piece to set it into so it could sit on a table or counter, and because I can't read the print and I can't remember what it says, it essentially says that St. Luke's and their excellent providers saved us from an Amniotic Fluid Embolism, that we are one in 40,000.

I have no idea if it's displayed or not, if anyone will ever see it, but the thought was there. And it's pretty. I also included one of the first pictures of me holding Lucy after I was out of the ICU. Not that I remember that moment at all, but Matt said that was pretty much the first time I actually had gotten to hold her myself, even if it was just for a minute.

The really cool thing was that in order for me to present this to the hospital I wanted to meet my birth team. Part of my therapy is working on the PTSD and anxiety I have associated with Lucy's birth and I really felt like I wanted to just take the bull by the horns and see if I could handle being on the floor again. I wasn't even sure if it would trigger anything, considering the remodel, and I wasn't sure if I'd have any kind of feeling about it either way. I didn't want to call the floor and sound like a complete moron so I send a random email through the patient advocate email and figured it might get routed, it might not, but it would be worth a shot.

It actually worked.

A few weeks later, long enough that I had forgotten all about it, I got a call from the Labor and Delivery floor manager (whose name I have forgotten because my memory is that horrific and I cannot find my notebook, which defeats the purpose of taking notes) saying she got my email, she remembers me, and kind of gets the idea of my visit and she'll send an email out to the team. We picked a day and she said she couldn't guarantee everyone could come but she was sure some would.

I went into it thinking maybe one or two would come.
There were more than this but some had to duck out because they were working, but so many came. Some faces I knew, many I didn't. The blond nurse who walked my out (far right) was there, my delivering OB (behind me with glasses) was there, the Occupational Therapist I apparently yelled at and called a quack and told to "get a real job" was there (guy in the way back in the black) and yes, I profusely apologized and explained that I actually had a stroke and I didn't mean what I said and I don't think he's a quack and if it at all makes him feel any better, I absolutely probably should have had OT before I went home and when I came home and he was right and he should feel better because I never admit to being wrong and I was wrong. (It's even on the Internet, now!)

I was fairly emotional and I wish I had asked more questions, but I only managed to get out one and that was, did I say anything before I went for surgery? And I can't remember who answered first, but a couple of people said the same thing, just that I absolutely did not want to go, I was adamant I didn't want a c-section, I didn't think I was going to come back, that I was crying, and I was very scared. But it was emergency, they just rolled me away and I fell asleep with tears on my face.

I did tell them that I had a premonition my entire pregnancy that something was wrong this time around, I didn't know what but just that something was very much off. I also told them that I had seen a psychic afterwards and, not telling her anything of my story, she told me I wasn't supposed to be here and I was meant to die in August. That brought kind of an eerie quiet to the room.
And of course, my rock star McDreamy Anesthesiologist, Dr. Jeffrey Speer, who is amazing. It's really this guy that is the reason I'm still here. If he hadn't paid attention in school, and in the one conference where they talked about AFE and this combination of drugs that might work, and if he wasn't totally paying attention to me and my vitals like a hawk, I would be absolutely dead and gone. All of my friends who came to visit me in the hospital who saw him there have all asked me if he's single, I don't know and I did not ask. But he is just the nicest person ever and I can tell you right now he gives the BEST epidurals ever and he will make sure you don't die should you ever have an AFE.

The greatest part of the visit was learning that they had seen an AFE before at the hospital and that woman had also survived, so that was cool. I also got the name of another local woman who has had one and I friended her on Facebook and our schedules have both been crazy but my hope is to connect soon so we can talk about our experiences and just compare notes. She's nine years out from hers so she can potentially be an invaluable resource for me and I'm excited about that prospect. The other interesting thing was their questions for me. They were pretty interested to hear how I was doing and I guess I didn't really expect that? I felt, in hindsight, kind of bad not to be able to tell them how amazing I was doing because I think ultimately any medical professional wants to see their patients go on and do amazing things and lead great lives. Instead I was pretty honest and I talked about my struggles with mental health as a result of the trauma and brain injury of this, but also just the medical repercussions of the trauma my body sustained from the AFE event itself. They were happy to see Lucy, and hear that she suffered no negative effects from the AFE, because in some cases babies die or have mild to severe impairments. In our case we're lucky that the AFE occurred literally seconds after she was officially delivered so she was just fine.

The other really cool thing I learned? Is that because of Lucy and I, St. Luke's now has this (there's a technical term that I can't remember) box in the labor & delivery rooms ready to go in the event a laboring woman has an AFE. In my case, had I tried to deliver Lucy on my own on the delivery floor, I would have died right there from a hemorrhage and organ failure and there would have been nothing they could have done. It is by an absolute fluke that Lucy turned her face at that last second prompting an emergency c-section, which landed me in the emergency room, and because I was there, I was already in surgery was I able to be saved. In any other scenario, I would have been dead. So now this box is there, ready to be hopefully not be used. It can save a mother's life. Every hospital should have this, but most don't until it's too late. I am so grateful that the hospital that I have always trusted my health, and my children's health, to is ahead of the pack. Their staff is hands down the best, they treat you like family and they give you the best care. One of the strongest memories I have from that week is how much I did not want to leave. I knew I couldn't do it on my own and I felt so safe, and so cared for. I trusted these people implicitly and I was so scared to go home because I knew how impaired I was. And it's not just the Labor and Delivery floor, literally every clinic, every practice, every doctor, every nurse I have encountered on this journey has made me feel like I wasn't crazy and they actually are trying to get me better.
It means a lot. To both of us. Thank you.


The Flynnigans said...

:( you being rolled away and falling asleep crying breaks my heart. I'm so glad you were able to meet them. xoxox

Unknown said...

Your plaque is on display right when you walk on the unit on the window sill. Since it's glass it looks beautiful when the sun sines on it. When the patients go to our new cabinet to get a hand knit baby hat or educational materials they see it. It makes me smile daily when I walk past it!

Unknown said...

Oh Sara! Your plaque IS on display. Thank you! Your openness and gratitude are overwhelmingly beautiful.💕It doesn't matter that you don't remember are here...and none of us will ever forget you. I have to giggle at your recollection of the 'OT quack.' You're right-he is great at what he does! I remember being especially impressed and touched by his genuine concern for you and his persistence in making sure you had the help you would need. (Nate!)
You are one amazing, strong, admirable and beautiful momma💕I know this is not the story you that you chose. The way that you share it with the world speaks volumes to your character...even on your darkest, most confusing days...your smile and humor lit up the room. You opened my thankful 💕

Unknown said...

What a beautiful gift, Sara!
Your story always gives me chills and your strength is AMAZING!!!! You are an inspiration!