Friday, September 9, 2016

Lucy: The most epic birth story I could ever tell.

It's taken me almost a month to get enough information to write this post. And some of it is still spotty. I should tell you that I remember none of it. I don't remember anything from that day, and the rest of the days I was in the hospital. I only remember a few spotty moments from the day I left the hospital. So, to the best of my recollection, and from what I was able to gather from others, this is the story of how my little Lucy Louise saved my life.

It started on August 1. Apparently I had gotten up early in the morning and had some bleeding. More than what would be bloody show. I had called Matt at work and he came home, and somewhere along the way he called my mom and his mom, who was going to watch the kids at our house for us.

Once at the hospital, the doctor wasn't sure if I was in labor, but my cervix was changing a bit and so they kept me and we were going to play it by ear, keep monitoring me. After a few hours, I was starting to get contractions and they thought maybe if I got an epidural, a little Pitocin, things would just keep progressing and we'd be having a baby before dinner.
Which was exciting because yay! I have always had relatively fast labor and deliveries, I've never had any issue, this body was meant to be birthing children- I'm practically a baby making machine.
So I got an epidural. I also got the BEST anesthesiologist ever, he was the same one I had with Penelope, and I was so glad to have him (Matt said this- that I was pretty excited to see this guy again) and he turned out to be a critical person in what would eventually happen.

But after some monitoring, Lucy wasn't head down anymore. She had been head down, ready to go, at every damn visit. She was ready to go when I got to the hospital. For some inexplicable reason, she decided to turn sideways. The doctor gave me some options: c-section right now or try to turn her.
I decided that I really didn't want a c-section and they felt like turning her might actually work and we'd just ultrasound to make sure. And once she was turned around, we could up the Pitocin to speed up labor ensuring she wouldn't have time to turn around.
So that's what we did.
I had a really fantastic doctor and an amazing team of nurses doing their damnedest.
They were able to get her turned around successfully. Unfortunately, that was just the start. Once the baby started coming down, my mom noticed that it wasn't the top of the head coming, it was Lucy's face. Now, there are times when you can deliver a face presenting baby, but the way Lucy's head was turned, she could have had a serious neck injury had I started pushing. That was when they decided this now became an emergency c-section situation so they unplugged everything as quickly as possible and I was put to sleep in order for them to get the baby out as quickly as possible.

And at 3:12 p.m., Lucy Louise was born via emergency c-section, swollen faced, adorable, and with dark hair.
Within seconds, the anesthesiologist (who is a rock star) noticed that my lungs were essentially failing, and that I was in the beginning stages of an Amniotic Fluid Embolism.

AFE is characterized by acute and rapid collapse of mother and/or baby as a result of an allergic-like reaction to amniotic fluid entering the maternal circulatory system. It is important to note that many laboring mothers have amniotic fluid or fetal debris enter into their circulatory system and do not suffer such a response. It is most generally defined as a two-phase response:
The first phase is characterized by rapid respiratory failure and cardiac arrest. It is noted most fatalities from AFE occur during the first phase.
The second phase is known as the hemorrhagic phase. The mother begins to bleed profusely at the wound site; typically at the site of placental attachment or cesarean incision. Disseminated intravascular coagulopathy (DIC) or consumptive coagulopathy develops, which prevent coagulation.

AFE is so rare, most medical professionals learn of it only in textbooks. The statistics around the incidence of AFE vary; recent research suggests that the estimated incidence of AFE is 2.5 in every 100,000 births or 1 in 40,000 deliveries in North America and 1 in 53,800 deliveries in Europe, respectively. There is currently no available data on incidence of AFE in other regions of the world. The true incidence of AFE is difficult to determine because the diagnosis of this syndrome remains one of exclusion, meaning that a diagnosis of AFE is made after all other reasonable explanations have been ruled out.

Thankfully, they had a banner team of doctors right there because the fact he saw that so quickly was key. They were able to give me the medication I needed and basically resuscitate me within minutes.

But then I started hemorrhaging. I had to have multiple blood transfusions and the doctor who delivered Lucy said things got really scary because they couldn't get my blood to clot at all. All of my systems were failing, and they made a quick decision to essentially clamp the blood flow going to my uterus and that eventually worked.

Once the hemorrhaging was controlled, and my vital systems were doing OK, I was then brought to the ICU.
So while I was busy dying and being revived, Matt got to meet Lucy. He wasn't able to come to the surgical room for the c-section because it was happening so fast there was no time to get him ready. My mom and Matt said it was almost an hour after I had been initially taken to surgery that they heard anything about me. They had no idea that just down the hall, I was in seriously critical condition and fighting for my life.
And my mom got to meet Lucy. She has been there for the birth of all of my children. She said seeing me in the ICU was horrifying and reminded her of when my uncle David passed away. Matt hasn't really talked about what it was like for him to see me in there. But thankfully, I had really great people working on me. 
And I had amazing friends who dropped everything to help with the kids, food, errands, coming to visit me, etc. They had Lucy come in and lay on my chest and I think it was supposed to obviously be beneficial to her but possibly for me as well. Maybe to subconsciously remind me this baby needs me?
I was on oxygen for about 24 hours and they took the tubes out to see how I would do and apparently my lungs did just fine. They had no idea what kind of side effects I'd have because AFE is so rare, they literally don't know much about it.

Among the survivors of AFE, most will experience long term or lifelong complications. These include but are not limited to mild to severe neurologic impairment, memory loss, temporary or permanent heart damage, organ failure, complete or partial hysterectomy and Sheehan’s syndrome. Infants may experience, mild to severe neurologic impairment, including hypoxic ischemic encephalopathy (oxygen deficiency to the brain) and cerebral palsy. Further research is needed to fully understand the potential long-term medical effects of AFE on both mothers and infants.
In addition to medical complications, most AFE survivors experience lasting emotional effects after this traumatic event. Feelings of confusion, isolation, anxiety, postpartum depression and post-traumatic stress are common. Seeking support and treatment for mental health issues is a very important aspect of the overall recovery process, and we recommend that women consult with their health care providers for mental health resources.

The anesthesiologist who was the lead on my delivery asked if my particular experience could be used in research, so that's actually being submitted.
After a few days in ICU, I was brought to a regular room, and Matt said I was pretty out of it. My mom said that when I was awake it was clear things weren't right, I sounded like I was 12 again and I couldn't remember much. I could remember Olivia and Jackson, but not Penelope and not Lucy. Somehow in my delirium I decided we were going to name her Lucy, which is weird because the day before her birth I was pretty set on Eloise, so who knows. Clearly Lucy was what her name was meant to be?
Matt also said there would be times where I was totally lucid and then other times where I didn't make any sense. I had countless tests, MRI's, lab work, doctor visits, etc.  I'll tell you right now that if I saw you or spoke to you during all of this, I remember none of it.
I was able to go home like eight days after having Lucy. Which is insane because I was in absolutely no shape to be going home. I don't remember this picture, for instance. I look kind of out of it. I vaguely remember my mom staying overnight at the hospital with me. I remember eating meals at the hospital, I remember a nurse with blond hair walking me out of the hospital. I remember very small bits and pieces of the next two weeks at home. Even now, I feel like in the moment I'm doing OK, like I'm remembering things, but a few days later I can't recall what I did on a particular day. So if you asked me what I did on Monday? I can't tell you.

Earlier this week I met with the doctor who delivered Lucy just to hear what the hell happened. I'm really struggling with the mental health side of almost dying and I thought maybe if I heard the blow by blow account it would be a good springboard to recovery. As it turns out, it's a really surreal and bizarre experience to hear about your death and revival in a very clinical, matter of fact way. Thankfully the doctor was absolutely lovely and so supportive. She told me that if Lucy hadn't turned, if I had delivered vaginally on the delivery floor and I had the embolism, there is a 99% chance I would be totally dead. They wouldn't have had the resources they needed on the floor and they couldn't get me into surgery fast enough to stop me from bleeding out right then and there. Not just that, but the anesthesiologist who recognized what was happening to me? If he didn't remember the one chapter in one textbook about amniotic fluid embolism? I would have died. She said most doctors will go their entire career and never even hear about this, and it's true, every doctor who I've seen since all tell me how incredibly rare this is and how lucky I am. That someone, somewhere is watching out for me because there is no reason I should be here right now. I should be dead.

Which is a really alarming, horrifying, terrifying, and sobering thought.

So in the aftermath, we have our Go Fund Me account, which is basically how we're paying our bills right now. Matt has had to reduce his hours at work a LOT because while I can function well, and I'm not an invalid, I'm nowhere near ready to be alone at home with four kids. Not even just the younger two. And it's weird, I feel like I'm pretty OK, but then there are points in the day where I don't remember when I fed Lucy last, or I space out a bit. I hate not being able to be 100% independent, but I do know I need help right now. Anyways. So Matt's paychecks barely pay our mortgage so financially things are really stressful right now. I have only gotten bills for doctors who came after my ICU stay, the actual hospital bills haven't come yet and our insurance sucks, so I can hardly wait. Not to mention all of the medication I'm on? It's EXPENSIVE. I seriously get it when people say they debate medicine versus food. I get it, and it's awful. I'm with you, folks.

As for me, I have Sheehan's Syndrome, which is pretty common for AFE folks. I'm being referred to another hospital to get a second opinion on my neurological impairment and basically see if things are going to get better. One doctor seemed confident that my memory would just get better and better over time. Another doctor said she things I'm permanently impaired, that I'm always going to be kind of fuzzy. Both agreed that I won't ever remember the time I was in the hospital. I think that's the hardest part- I don't get to enjoy Lucy's birth, my last baby, like that experience was stolen from me. Needless to say, I have a lot of things to work through. I'm getting help soon though, so that's something. I'm still foggy. I'm trying to get out of the house more, though. There have been a few times where people have stopped me to say hi and it takes me a bit to register who they are, which is frustrating. I hope that gets better.

But that's the best I can give you. I wish I could give you super detailed information because that's more of my style, but this is the best I can do.


Amy said...

I am glad you are here and were able to share your story. Someone is looking over you and hopefully in time, things will get back to somewhat semi-normal for you. Take care of yourself and by the way, Lucy is beautiful. said...

I always knew the angels would be with you. You have amazing guardian angels and they knew not to let you leave. .Just take each day as it comes, and you are great at writing, that should help. You will be in my prayers always. and its something at your mom referring to your Uncle David cause I pictured the same and I prayed to him and my mom as well.

Unknown said...

Weeping at my desk. I thank everything divine in this universe that you were spared. What an unbelievably nerve-wracking story. LOVING YOU!

Mattie @ Northwest Native said...

This had me in tears. I'm so glad everything lined up for you to still be here (the anesthesiologist, the emergency c-section...). Hoping you get more answers to questions about your memory and you get great help for your emotional scarring. <3

LitPark said...

So terrifying. In tears just reading this. It must be so strange to have to learn your story from others. And healing too, just to have words for all you've lived through and are still living through. I'm glad you're here.

The Flynnigans said...

Like others, I cried reading this. I'm so sorry that so many memories were robbed of you and that you'll never truly remember.

My heart goes out to you sweet girl....


Julie H said...

I hope your memory is able to improve! So frustrating and scary.

Anna (herding cats-burning soup) said...

It's amazing you were sent home so soon. Very scary all around. Whew!

J.M. Adele said...

I'm so, so glad that you pulled through. I hope things continue to improve for you. Thinking of you. Jen <3