Five.

I honestly wasn't sure how this year was going to go. In general, this year has kind of been a year of disappointments for me in terms of medical news. Since having Lucy, and going to hundreds of follow up appointments, five years has always been this weird finish line. Every doctor would say, "it's not great now, but by the five year mark it'll be greatly improved", "around five years is when you will see your peak improvement, it'll take that long to really repair those neuro-pathways", etc. 

Now I'm at the five year mark, and I'll be honest, I was hoping for more. I'm realistic enough to know I certainly won't ever get to the pre-AFE level I was at. I know that, and I feel through therapy I have really come to grips with that. What I haven't really addressed was this weird five year finish line and what I would do once I got here. I guess I really thought it would be this weight off my chest kind of feeling, like, I've made it! I made it, and look how great I'm doing. 

Except... it's not really happening that way. So, let's talk about where I'm at, five years from the worst day of my life: 

Good News: 

• I recognize all of my family. I recognize most of my friends (at least the ones I interact pretty regularly). 
• I am able to cook simple/easy meals at least half of the time. On a good day. 
• Some days I can walk up to a mile, sometimes two miles. 
• I am much better about using lists and reminders to take my medications, pick up the kids, etc. I have found some daily routines that help me at least be independent at home. 
• I don't cry every day/all day. I only really break down maybe once a week, usually in the shower when I'm alone. 
• Seeing pregnant women or very tiny babies used to be a PTSD trigger for me, and while they still are, I'd say 75% of the time I can keep it together for enough time to get through a store or interact with someone. 

Bad News: 

• If I see someone who I don't regularly interact with (face to face) and you say hello to me in a store? I will not know who you are. Please don't take it personal. In other scenarios, I'll know that I know you somehow, but I won't be able to remember your name or how I know you. 
• While I can sometimes cook a meal on a good day, the good days are far and few between. I might have one good day a week. 
• When I walk a mile or two, or any kind of exercise, that is usually all I can do for the rest of the day. The next day, or two, I am usually really sore and abnormally tired. It feels like I've been awake for over 24 hours kind of tired. 
• Is it weird to say I actually miss cleaning? I can wash dishes and vacuum the dining room rug, but really anything beyond that makes me so tired I need a nap. I can fold laundry, though! I used to hate folding laundry, but honestly I like it now because it makes me feel like I'm doing something. Cleaning used to be an anxiety release for me and not having that has been difficult. 
• I still get lost. I can't go on walks by myself, and I don't know if I'll be driving beyond 50, if I'm being honest. I get lost trying to come home, I keep going to the wrong house or forgetting where I need to be all together. I have places that are just muscle memory, but if I have to go somewhere new? I need a ride. 
• Oh, but I get SO CARSICK now. It makes me so dizzy to ride as a passenger and then I'm just straight nauseous the rest of the day. 
• So many of the issues I was diagnosed with are still here and have either gotten worse or things were added to the list. My amount of medications to function has increased and even still- there are several issues I deal with that nobody has any idea what to do with. 
• My memory is still really terrible and just a few months ago I saw a new neurologist who very nicely let Matt and I know that my brain injury looks healed from an MRI stand point, but he does not believe my cognitive function, flexibility, memory, etc. will improve much (if anything). He does believe I'm at my peak and encourages Matt to keep an eye on any decline. That appointment was a real blow to me because I went in really hopeful and left feeling pretty discouraged. 

So, it feels pretty balanced, I guess. I just.... I just really hoped some of the issues I left the hospital with would be in my rear view mirror by now. 

A picture of me from August 2, 2016. Matt doesn't remember if this was before or after my second surgery, which is when they were able to fully stop the hemorrhaging from my uterus. 

I knew the day before Lucy's birthday (July 31) would be hard, it always is, so my plan is to keep myself busy. I wanted to go to the Rose Garden, which is what I did that year and it's my last memory of anything. It's my only memory of Lucy's pregnancy, and from there it's just really spotty flashbacks, kind of. So this year, Lucy wanted a rainbow cake, and I spent the entire day making a six layer rainbow cake. I will probably never do that again. 

On her actual birthday we had family come over for dinner, cake, and presents, but after lunch we headed to the Rose Garden, and then off to sit on the rocks and look for some sea glass. 

We had all four kids with us and it was a really nice time to just sit. I could feel my feelings, and I let some tears fall, and I watched the water. I've read, and heard many people say, that Lake Superior has healing properties. I don't know if that's really true, but I've learned to be open to anything, so I dipped my feet into the freezing cold water. I did some breathing exercises, cried a little more, and made some wishes. 

On the way back we stopped to watch a train pass under us, waved to the tourists aboard, and came home to party. It was a pretty good day for Lucy, she seemed like she really enjoyed her birthday, and that's all that matters to me. Her and Penelope (and Jackson) are off to their grandparents' house this week and they look forward to that every summer. I'll have a relatively quiet week since Matt and Olivia are working. I specifically didn't schedule appointments this week because if I've learned anything in the last few years, it's that this is historically a really terrible week for me. I'm going to give myself permission to cry when I need to. The only thing I can compare to the general feeling of this week is being chased by something scary. Like, if you're out for a walk and absolutely SURE someone is following you and something bad is going to happen? That's how I feel all week. I'm jumpy and anxious even though I know nothing is going to get me. It's just crazy. I feel crazy. I'm not crazy, but I feel it for sure. 

So yeah. Five. My baby is five and I remember none of it. How do you grieve that? 

Book Review: Expecting Sunshine

*Full disclosure: I had this review typed and ready to go for last week (Friday) but I pulled it because I felt like I really need to include why I chose this book so that is why this is up today and why I have two posts today.*

Expecting Sunshine - Alexis Marie Chute

Anyone who has experienced—or knows someone who has experienced—miscarriage, ectopic pregnancy, stillbirth, or other forms of pregnancy and baby loss should read Expecting Sunshine, including those considering or already pregnant again. 

After her son, Zachary, dies in her arms at birth, visual artist and author Alexis Marie Chute disappears into her “Year of Distraction.” She cannot paint or write or tap into the heart of who she used to be, mourning not only for Zachary, but also for the future they might have had together. It is only when Chute learns she is pregnant again that she sets out to find healing and rediscover her identity—just in time, she hopes, to welcome her next child. 

In the forty weeks of her pregnancy, Chute grapples with her strained marriage, shaken faith, and medical diagnosis, with profound results. 

Glowing with riveting and gorgeous prose, Expecting Sunshine chronicles the anticipation and anxiety of expecting a baby while still grieving for the child that came before—enveloping readers with insightful observations on grief and healing, life and death, and the incredible power of a mother’s love.

If you read my blog you will know that I have four children. If you've read my blog for a long time you will know that I miscarried a child before I had Penelope. You will also know that I went through a fairly hellish delivery with Lucy and I've had some serious issues since then. I went into this book experiencing different kinds of loss than Alexis had but I could understand some of her feelings. I could absolutely relate to grieving, and trying to heal, but also trying to reconcile with a new future that you didn't plan.

In my case, I really struggled after my miscarriage because I could never understand what it was like to lose a life within you. We hear about it, we say we're sorry, and we move on when it's happening to others. When its you going through that and having to look on an ultrasound screen days later to see it is, in fact, empty, it's a completely different ball game. Even now it's five years later and I still think about that child and what they would have been. They would be going to kindergarten this year. I can't get too sad because I likely wouldn't have Penelope or Lucy and I can't imagine life without them now, but still. I get sad. My situation with Lucy could have been significantly worse because I could have died for good versus having died but come back. Lucy could have died. I don't talk about it much because people say I'm crazy, but after my entire ordeal I was told that I "most likely" will never be able to have a child again. I have all of my organs, but I no longer have working hormones, and they believe with all of the significant blood loss that it most likely damaged my ovaries. It's silly be we were DONE having babies after Lucy. That was it. Matt got a vasectomy anyways, as planned, and no more babies were going to happen. But still. Knowing that I no longer have that choice hurts. Every bizarre scenario goes through my head and none of them make sense because I'm 37- I'm not trying to have any more babies. What if Matt dies and I remarry and he really wants kids? What if in a few years Matt wants to try for another boy? What if I want to help a friend have a child? What if I don't feel "done"? What if.... None of it is rational but that doesn't make the thoughts go away. So I've gone through an entire grieving process of saying goodbye to that part of my life and walking into a new one.

So.

I went into this book with big feelings and I came out with even bigger feelings. In here we get an up close and personal look at Alexis and her journey through grief having to say goodbye to her son Zachary as it becomes he would not be leaving the hospital. They learn of this during her pregnancy so it has to be a special kind of hell to know you won't get to see any of those milestones or even get the bare minimum of moments with your child. We see her gradual walk through the grieving process and the support groups, and the test it was to her marriage and her faith. I really could relate to her feeling like she didn't need medication or a counselor because that was me in the months immediately after Lucy's birth. I was so angry when either were suggested to me by people because it felt like they were saying I could be recovering better, like I can't even do that right, but when my delivering doctor mentioned it, that's when it sounded like something I really wanted to do. I honestly credit her for me being alive (a second time) because had I not gone to those first appointments, I would have killed myself. I know it and I have said it many times. I really needed a total stranger to me and the entire situation to validate what I was feeling because nobody in my life was doing that for me in a way that didn't feel like them placating me.

Alexis would go on to get pregnant again and the worry and anxiety throughout her pregnancy were completely understandable and expected, but that doesn't make it easier on her or anyone around her. It's hard to make someone feel better when you cannot predict the future but you also can't understand what it feels like to be in that exact situation, so while I don't know what that pregnancy would feel like, I really could empathize and relate to that isolation she felt.

Overall? A solid 4 stars. The book reads incredibly fast and reading it feels like she's sitting across a table telling you her life story so it's not the monotonous voice that some memoirs have. The only reason I gave it 4 instead of 5 was because I, as it turns out, could not read about her labor and delivery of her baby Eden. Since having Lucy I have PTSD and I have a really hard time being around pregnant people and babies (especially newborn babies), but in a fun development, I can't hear or read about babies. So if nothing else, I've learned that about myself and that's upsetting. So that's on me. If it were anyone else they would give it 5 stars because this is really terrific.

If you, or someone you know, has or is currently in the process of grieving of a lost child or even a lost experience, this is a really great book to look into as a resource. Forget the self help books written by men who have never experienced it, listen to someone who has hiked through it.

   

I received a copy of this book for review in exchange for review, all thoughts are my own. This post also contains affiliate links which help keep my blog going. Thank you! 

In 5 Weeks

I was trying to work on this post, and then I quit it, but now I feel like it's still accurate and it's my blog so I should share it.

In 5 weeks...
... Lucy will be two. It's hard to believe it will be two years since the most traumatic event in my whole life. Probably the worst thing that will ever happen to me if there's any justice in the world.

Last year at this time I was having major anxiety about her turning one and that turned out to be just because I was incredibly anxious and depressed leading up to the event, and my depression last fall was some of the worst I had experienced. Last fall I stopped my car on a bridge and it was everything in me to not get out of the car. Last fall I sat on a cliff and wondered why I'm still here and desperately praying to go.

I feel much the same this year. I don't understand the purpose of me still being here and at the same time I'm too tired to care. I'm going through the motions of my every day.

But I'm not happy.

I'm not fulfilled.

I still feel like I'd step in front of a bus should the opportunity arise.

Am I always going to feel this way? Is this really the best there is for me in terms of emotions and well being?

This year has been another series of doctor appointments, lab work, procedures, and we are no closer to finding out why I feel the way I do. I still can't be around pregnant people for long without crying and having anxiety. I struggle with word usage, word spelling, and things I thought I was really good at. I can't do math very well, I could never be in charge of a cash register again. Simple processes are hard for me. I get confused when you give me directions or try to tell me a story. Every day I say that I hate my life and I wish I was dead. I'm developing a fear of needles. I still don't drive with the toddlers, mostly because I'm afraid I'll forget them but also because I can't handle them. I hate being a mom, it brings me no joy anymore. I want to lay in bed every day all day. I miss being adventurous. I miss being a good friend. I'm not a very good friend right now and people are forgetting me. People are forgetting that I'm still impaired, everyone else has moved on but I'm still stuck here. I'm happy I've got my reading speed back up, but I realize that remembering a story is gone. The bright side is that re-reading my books has been nice, it's always a new story even if I've read it countless times.

I'll say my relationship with Matt, oddly, has never been better. Who knew a crisis would be a saving grace to a marriage? I certainly wouldn't have thought so.

I feel like I don't contribute to the house. I feel shame being on disability. I feel like the world is passing me by. I'm scared about my future. I feel guilty that Penelope and Lucy will never know the mom I used to be. They'll never have the best of me, they'll never know it. Olivia and Jackson will always miss the mom they had and continually disappointed in the one they have now.

It's been a rough two years. Then I realize it's only been two years and I sigh because I feel like it's been a lifetime of this. How many more years will I struggle through like this? I can't fathom it.

It shouldn't be this hard.

I have made it no secret that Lucy was very much an oopsie baby. We were taking precautions and none of it actually mattered because my uterus hates me. Maybe she just likes to be busy, I don't know. Lucy is 100% our last baby, that is the plan. Matt has had his vasectomy and they are 75% sure I can't get pregnant if I wanted to because of the tremendous blood loss to my ovaries and also not having any hormones, those are important things. But that means there was the 25% maybe and if Lucy could slip through that teeny tiny window, god knows triplets or something would make it in that 25%. So Matt had the vasectomy because we wanted to make DAMN SURE a fifth baby cannot happen.

So no more babies. We knew that. I know that. I do. I can't remember anything from yesterday but I vividly remember agreeing to no more babies. Done. No more.

Which makes my recent feelings about that really bizarre to me. I remember being sad when we got rid of all of the baby things after Jackson, I definitely did not feel done after him. This time, I feel done. I do. I think. I mean, I guess I don't remember if what I feel now is different back then, but it's really tough.

In the back of my head I had this wiggly, random angry feeling about being done. It's one thing to be done on your own terms, but being told I am done from a medical standpoint? That bothers me. It feels like a parent telling a kid no and they've got that look in their eye when you know they are going to do it anyways. It's just like that. Part of me wants to get pregnant and be like, "SCREW YOU, I can totally get pregnant!" and the other part of me is so damn relieved I don't have to do it again. I never have to deal with the fear of delivery and wondering what if.

Then there are days like today, where I'm trying to clean and organize, and it's not going well. I was getting angry with myself because I don't have the ability to do things like I once could, and I decide that now is the time to clean the cupboard with toddler dishes.

So I lined all of the bottles up and the mesh feeder and I started crying. Crying so hard I almost couldn't breathe. It felt like the biggest punch to my gut, a visual realization that this is really it. Then when I realized that I don't remember any of Lucy's firsts, or what it was like to snuggle her newborn self, the sound of her first laugh, her perfect baby smell, how soft her first hair was, or what she felt like on my chest? I can't remember what it was like to feel her kick in my stomach, or rub my belly, the excitement of labor and knowing she was coming. I cried like someone had died. On my kitchen floor. Alone. I cried and I cried.

I am so angry that all of those moments, especially profound since she is my last, are gone. They have been stolen from me and I can't ever get them back. Worse yet? I have no memory of any of my kids. The only "memories" I have are like actual snapshots in my head. Like the pictures in their baby books is what I have and I know it must have happened because I'm in the photos. I don't have that with Lucy. I don't know what it was like to hold her for the first time, and I imagine I must have felt a lot of things considering I had died.

Matt said he was told that one of the medications they had given me at some point would basically make me not remember the event and subsequent pain, but they didn't know if I'd have any other memory loss- it's kind of a toss up. And in hindsight, know how much is gone, I would give anything to have it all back. I would have taken the horrific pain for these memories. But I know in the split seconds they had, the medical team thought this was best. I can't fault them for that,  I would have made the same call if someone asked me to make that kind of decision for someone else.

I imagine this is what it maybe feels like to have dementia or the beginning of Alzheimer's, there are lots of things you don't remember and you don't remember what you don't remember. If you ask me a direct question, I probably can't answer it, but if I'm not trying to remember, some times it just pops through my head. Like in the dark, until your eyes adjust your peripheral vision is better than looking straight ahead- that's how my brain is. I know the information is there but if I try to remember in a really roundabout way, I can do it. Ask me to recall information right away? Nope.

So that's where I'm at. I am slowly ridding the house of baby things and it's killing me. The crib will likely come out this weekend and I know I am going to be a mess. I know it. I'm scared. I feel like there isn't ever going to be a good time to do it and maybe I need to just rip it off like a bandage. All of my doctors and therapist tell me it's normal to be angry and sad. To have unexpected triggers and it's OK to cry. I don't have to apologize for it, I just need to get myself to the next moment. It all passes, even the moments when it hurts so bad it feels like a tangible pain. I would never wish this on anyone. Never, ever.

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.

AFE update: losing hair, new medication, and migraines.

Last week I had another full week of appointments and this week I only have one, with my counselor. Fortunately I was able to get on the cancellation list so when someone cancelled, I jumped on the appointment, otherwise my next one isn't until mid-December.

I've been talking to a few other AFE survivors online about their symptoms and diagnoses post AFE and it's kind of a downer, really. Almost everyone I have talked to are about six months or longer since their AFE, so not quite where I'm at, but they all are frustrated with doctors who don't know what to do with them. I do know that it's so rare that it's hard to study, so it makes sense that there isn't a whole lot on the books on what to do with us. I'm learning that a lot of what I deal with isn't going to be fixed by time or medicine, that I most likely learn to live with it because there just isn't anything out there.

Hands down the worst are the migraines, with a close second being the feeling of getting the flu all of the time. I'm always achy and tired. But the migraines.. oh man. At best, I get migraines 4 or 5 days of the week. At worst, I'll have one every day. My medicine I can take to keep the edge off works maybe half of the time now. So far the consensus is that it's either hormonal, because of low sodium in me, or a combination of both, courtesy of my broken pituitary. I had some labs last week to measure my hormones and those came back normal, so I don't need hormone replacement therapy yet, which is a GREAT thing.

Another change is the medication I take for my blood pressure and depression/anxiety. So far, I haven't noticed a change in either area except the depression/anxiety medication makes me feel physically sick, so that's a lovely way to start the day. I also decided I need to get one of those pill containers for morning and night because keeping track of my medicine is getting to be difficult. I'm afraid I'm going to take the wrong thing at the wrong time or double up on something I shouldn't. Honestly, I don't know how elderly people keep this all straight.

The biggest change so far is easily my hair loss. I've  never had post-partum hair loss before, and I don't think that's what this is at all. I think it's either hormonal or medication related. It started as a few strands here or there (a few weeks ago) but this weekend I noticed every time I run my hand through my hair, a small handful will come out. It's... weird. I mean, I have extraordinarily thick hair so I wouldn't be opposed to it thinning out a bit but now I'm a little worried I need to call someone about this. I'll likely just wait until my next appointment in December to check on my medication.

But to combat feeling overwhelmed, I put up our Christmas tree on Sunday. Christmas is my most favorite time of year and I'm holding onto it like a life line at this point. We are really blessed, even more so this year, and I'll talk more about that later. I just want to soak it all up, you know?

More appointments, more pee, and trying. Lots of trying.

After last week, I went into the weekend feeling pretty damn defeated. I did some fun things, to hopefully make life a little more fun and not focus on my failures and struggles so much. But let's talk about the medical stuff first.

Last week I saw my endocrinologist and he reviewed the lab work I had done the week before. My thyroid is still considered low functioning, and everything is basically the same. He was concerned that I'm still peeing too much, which means my diabetes insipidus is maybe not as controlled as it could be. In order to figure that out, he ordered me to do a pee-in-a-jug test where they test it to see how much salt is absorbed into it... or something like that. Turns out, I peed 3 liters in a 24 hour period which is considered elevated and peeing 10 times in the course of a day is kind of high. So the recommendation is for me to take another half pill of Desmopressin in the morning (I take a half pill at night) and that should help. All well and good while my insurance deductible is met and I don't have to pay for my medications, but it's dawned on me come January 1? I can't afford all of these pills. I will become that person who has to determine what I can afford and what I can live without. I'll have to just learn to like peeing hourly.

Sigh.

Another concern that I have, which my OB doesn't seem to be concerned about is my scar. Because I was in a really critical situation during my c-section, I have a vertical incision. Normally it's a horizontal one, but what can you do? My problem is that for most of my life, I have had what I have always referred to as my "kangaroo pouch". It's a weird lump of fat under my belly button and no amount of dieting or exercise makes it shrink. Well, half of my scar goes over and under the flap so when you lift the flap, it basically looks like another butt hole. In my stomach.

You see? We can all just call it my second butt hole. The other super disgusting part? Is that because it's a flap (you can see the crease), I sweat during the day (thanks, hot flashes!) and it.. let's just say it leaves a residue and it's so gross. I've become that fat person that has to clean the folds of skin. It's disgusting. I cannot highlight enough how disgusting it is.

Sigh.

This week I saw my neurologist on Monday. That was a really depressing, and frustrating, appointment. I learned that not only did I have lung failure, amniotic fluid embolism, and the right side of my heart fail, but I also had a STROKE. Apparently having a stroke after a trauma involving blood loss and lack of oxygen isn't uncommon. But I was surprised that this was the first I had heard of it. So I left there with a feeling of defeat because though I'm only 34 and my brain is young and relatively healthy, they can't tell me how much I'm going to get back. Certainly memories that are gone, those are gone. But my short term loss? Nobody knows. We're hopefully that my brain testing in January will be more helpful.

I'm scheduled for an EEG today to see if my "brain blinks" are actually seizures. The hope is that they ARE because if they aren't then they don't know what's causing them.

I saw my general practitioner on Tuesday for a full physical. The doctor is GREAT and is so thorough, listens to everything, took a copy of my symptoms list and really tried to go through each one to find solutions. My blood pressure medication and my anti-depressant are changed so we're hoping that helps a few things. Interestingly, when I mentioned the stroke she said I didn't have one. I said, oh yes I did, I saw it on the MRI myself. So she spent 20 minutes going through every report and image in my patient file and sure enough, it's there. Bad news? Is that the MRI was taken on August 4 and the only doctor who would have known about it is the neurologist- the information wasn't readily available in my file so anyone treating me from that day until this week, wouldn't have known it.

Cue frustration and fear.

So now I have to advocate harder for myself to make sure EVERY detail of what I've gone through since August 1, as much of a pain as it is, is in my patient file on the summary page. Maybe it doesn't seem like a big deal, but if I get into a car accident or see a doctor who isn't familiar to my situation, they need to know right away. They wouldn't know, or maybe have time, to go into the detail pages to look for something.

So that's been my week so far. I'm feeling really down on life in general. More on that another day. But I need a nap and I'm sure you have things to do. More soon, lambs.

37 Seconds

I knew the minute I had my AFE in August one of my first steps to recovery and healing was to read as much as I could about amniotic fluid embolisms. Unfortunately, there isn't a whole lot out there but this books stood out to me and I read it in one day.

37 Seconds - Stephanie Arnold

Pregnant with her second child, Stephanie Arnold began receiving mysterious but strong premonitions that she would die during the delivery. Distressed, Stephanie did everything she could to inform the medical team and her family about what she knew was coming. No one believed her, but Stephanie knew they were wrong. When she gave birth to her son, Stephanie flatlined and died on the operating table for 37 seconds, during which time she had a spiritual experience she would never forget.

After reading what Stephanie discovered in her search to make sense of what happened to her, you will never look at life, death, and the afterlife the same way again. 

If you're a long time reader of this blog, you'll remember my reservations about my pregnancy with Lucy. At the time, I chalked it up to it being my fourth pregnancy, unexpected and unplanned, and so soon after having Penelope. Now that I've had a little time to reflect on my recent experiences I don't think that's what it was at all. I think it was my body trying to tell me something, perhaps warn me of what was to come. I think I didn't get the message and maybe Lucy picked up the slack and that's why she turned at the last minute, causing me to have an emergency c-section. Because without that c-section, I would have immediately died in my delivery room.

Stephanie Arnold felt throughout her entire pregnancy something was very wrong, that she would die giving birth to her second child. Despite warning everyone around her, nobody really took her seriously. One doctor thankfully flagged her file and that played a part in her survival. The book isn't very long, just under 200 pages, but it's a really horrific and sobering read. I think someone who hasn't survived an AFE, or had a loved one die from an AFE, would have a different feeling about this book. Perhaps you would read it as a bystander next to a car crash- you should look away but you're compelled to stare in awe. As someone who has survived an AFE, I cried. I cried because like Stephanie, I lost so many days of my life. It's hard to explain to others what it's like to come back from that and feel the way I do. One outlet of therapy Stephanie tries is regression therapy where she's hypnotized and brought back to that moment of dying and seeing loved ones in the days immediately following.

I so badly want this. 

I keep saying I wish people  had more video of me, had taken more pictures of me, no matter how painful and scary they would have been. I feel like I'm missing such a huge part of my life and I feel desperate to get it back. I wonder if people who have been in a coma for an extended time feel this way? Is there a way to get closure without hypnosis? I don't know.

This book is one of the best I've read. And I might be biased because it is SO similar to my story, but I highly recommend this. I had such a deflating feeling after reading it that the story has already been told- what would be the point writing MY story? But then after another sleepless night, I decided I have to write my story, it's different in many ways, perhaps important ways. We'll see.

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.

-afesupport.org

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. 

-afesupport.org

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.

You know it's bad when strangers hug you.

Well this week was relatively "easy" considering I only had one doctor appointment to contend with. I think next week I have a visit with the endocrinologist to see how my pee medicine is working (more on that in a bit) but the most important visit (to me) is the one with the doctor who delivered Lucy. I basically want to know what the hell happened because I've gotten bits from my mom, different bits from Matt, and a really broad run down from my actual OB, but she encouraged me to make an appointment with the delivering doctor that day just to get the full story. So I did, and that's next week. Which is why I haven't written down Lucy's birth story, I'm kind of waiting for that appointment to make sure I get details correct.

But here's where I am now:

- I go to my OB again in November to have a full panel of labs run to see where my hormone levels are. She is 75% sure that I am basically a closed down baby bakery because of my pituitary gland being shot.

- Which explains why I haven't gotten a period yet. No bleeding at all, actually. Nothing. Nada. No cramps, no indicator that anything is coming, totally the weirdest thing. She said I most likely won't have a period again. I likely will need a cocktail of estrogen and progesterone or whatever to make sure I don't go into early menopause, considering I'm only 34. And even though my family health history makes that scary, she said she would rather me get cancer (I'm considered high risk for breast, uterine, cervical, and ovarian cancers) than heart disease (something I could get without the hormones) because we can treat cancer. Heart disease is kind of bad. So that's absolutely terrifying.

- Last week my endocrinologist gave me kind of bleak news letting me know that my pituitary gland is basically shot and what that means for me. After all of my labs from last week came back the final verdict is diabetes insipidus, secondary adrenal insufficiency, and low thyroid function. Basically I have Sheehan's Syndrome. It's a good thing I'm not a breast feeding mama because I'd be in bad shape right now since I have zero milk production. Perhaps the only bright spot in all of this is that I have had no milk come in and I have evaded the pain of milk drying up. So.. yay! But also along with this is that I don't think I'm growing hair on my legs or under my arms. Like, it's been a month and I haven't had to shave. Which is totally awesome, but what about my head? Is this it? Is what I have all I'm getting? Nobody seems to know.

- The neurologist I saw earlier in August to go over my MRI must have gotten the more advanced scan results because "after more looking" she wants me to see a specialist in traumatic brain injury (which is what I'm classified as because I technically died twice and the mass amount of blood I lost combined with loss of oxygen for two separate times... bad stuff happens when that happens) at the other hospital to do scans and look at my earlier scans. That's happening in November. Along with more scans at my hospital plus a series of "brain activity tests" to basically see how I'm functioning.

- My OB let me know I failed my post partum depression test and to continue with my anti-depressants, but if things don't get better in the next 2-3 weeks, I need to call and we'll start increasing my dosage. She also wants me to get into counseling for not just my depression but for PTSD. I exhibit a lot of the symptoms of that and she thinks I'm going to have a breakdown if I don't get some immediate treatment. So.. I guess I'll work on that. I can't afford it so who knows how that's going to work.

- The EOB's are starting to roll in. Now I'm getting really scared because we can't afford any of this. Not with Matt not working his usual schedule because I can't do the mornings on my own yet. Hell, I can barely do much on my own. Thankfully the big kids go back to school tomorrow but I won't lie, not having them to help me with Penelope? I'm worried. I hate relying on my mom and Matt's mom to basically babysit and help me take care of my kids. But between the depression, not feeling great physically, and my slew of medication that makes me feel run down and sluggish, I just can't do it. Some mornings I wake up by crying in the shower. I think Matt is concerned but he hasn't said anything. I don't know what I would even say back, to be honest. Certainly nothing that would be reassuring, that's for sure.

But what's been the strangest is when absolute strangers hug me and ask how I am. Doctor's offices, Walmart, the grocery store, the kids' school. I don't know what to say. If I say "good", they immediately feel relieved and assume I'm 100%. If I'm honest and say, "not good", they look like they don't know what to say or do and it's awkward for us all. But at this point, I can fake it for awhile but then it becomes obvious I'm not up to par and things aren't good. And sometimes I want to scream at people, "I DIED, FOLKS, TWO TIMES!" because it drives me nuts when people don't understand exactly what I went through. I mean, I can't even get mad because who the hell even has this happen to them? I do. I do, folks. I shouldn't even be surprised anymore yet here we are.

So have a good weekend, lambs. I'm going to try to be a mom, on my own, for a bunch of hours this weekend. I'm 100% terrified. I keep telling myself I just have to keep them alive. That's really all I have to do. Stay alive and keep them alive. Easy peasy, right?

The calm before the storm

I'm just now going through photos on my phone and trying to organize things and I realize, I have fun photos from before Lucy's birth that I never got to share with you!

So the day before I went into labor, we spent some time walking around Duluth being tourists and just hanging out together, figuring once the baby was here that quality time would be limited. And how right I was.

We went to a park, took in the pretty lake and looked at some cool stuff.

Penelope got to see flowers, her most favorite thing in the entire world. It was everything in her to not pick them and to not climb into the actual bushes.

Then we headed down to Canal Park because I figured we could have lunch down there and the kids could throw some rocks into the water.

Which Penelope absolutely LOVED. She could have thrown rocks all day but we bribed her with food to get her away from the water.

Not before her picture with dad while sitting on a big rock. She didn't totally get why the giant rock could not come home with us.

We even got a quick picture of us while I held Penelope's hand so she didn't run off towards Olivia and Jackson. Or seagulls.

Obligatory summer picture, sadly Penelope didn't want to cooperate.

We ended up having lunch at Grandma's Restaurant and it was great as usual. Penelope was quite the love bug. We had to head home afterwards because I was pretty tired and ended up taking a nap while Penelope did.

And I can't leave you without a belly shot, what would become the very last one of this pregnancy at 39 weeks. It's worth noting that after this photo was taken, right around dinner time, I have no actual memory of anything until the day I leave the hospital. I'll share Lucy's birth story this week, as best as I can piece together from what I've been told and texts that I apparently had before all hell broke loose. But it's weird to look at that picture and think- that was it. That was my last day pregnant ever.

What is normal, anyways?

I'm trying desperately to get back to normal. The more I try, the less I know what that even is anymore. I'm really struggling with every day life and when people ask me what specifically, I can't even answer them.

I just don't know.

What I do know is that financially we're hurting. It's basically a miracle to have the GoFundMe account because Matt hasn't been working anywhere near his normal hours so his paychecks are basically non-existent and funny thing, your creditors kind of don't give a damn about your hardships or current life situation. We know we will have thousands in medical bills coming our way and that's actually really scary. I mean, what can you do? Make a payment plan and hope for the best, I suppose.

I went to the neurologist as scheduled and that was basically a waste of time and whatever the cost of that is going to be. She told me my brain is mostly good. I've got a weird spot she isn't concerned about but doesn't know what it is, she's "pretty confident" I'm not a stroke risk, but my pituitary gland is "shot". Which makes the appointment with endocrinology even more important. Thankfully, with the insistence of my OB, that got moved from mid-September to this Friday. In order to get ready for that, they wanted me to collect urine for 24 hours.

Which was mildly exciting because I had an actual job to do! That and it's going to be actual confirmation to everyone that I am peeing a ridiculous amount. It's really astounding because I had no idea my bladder could even hold 32 ounces of pee at once but IT CAN. In fact, it does it at almost every pee break which is anywhere from 30-60 minutes. That and I am excessively thirsty, which I'm told is also a weird pituitary gland thing so I am really hopefully that Friday's appointment is like... the best thing I have ever gone to. At this point, I am up in the night more than Lucy.

Which isn't saying a whole lot because as it turns out, Lucy has a thing against sleeping on her back while not being held. That's been exciting.

Also on the docket is I have an appointment today (Thursday) with a new general practitioner. My current one is in in a city thirty minutes away and my delivery and surgery team think I need someone new and closer, so they got me in with someone at the clinic my kids go to, which is two miles from my home. I could actually walk there if I felt so inclined.

I'm not.

But that's tomorrow and frankly, I don't know what the point of it is, really. I hate going to the appointments because they ask me questions like, "how do you feel?" and it's like- I don't know? Like, I feel alright I guess. My insides hurt, I have depression and anxiety, I'm exhausted, but I'm also incredibly angry and frustrated at myself, at my body, at the world. Basically, Lexapro isn't cutting it, I'm sick of being treated like a baby but I know I'm not capable of being on my own, I want to leave the house alone, but that also feels exhausting, and I've never felt more helpless in my entire life. So.. that kind of sums it up.

Fix me.

But I should also talk about Penelope and her adjustment, because while I'm quietly falling apart on the inside, this little bright light is doing a great job as a big sister. When Lucy cries, Penelope will either be the quiet observer or she panics and doesn't know what to do because it scares her. She is very interested in handing me things the baby needs, will rub her head, and generally pretty good when we have to take care of the baby before her for something. Right now she still has Olivia and Jackson to play with so I'm curious to see how she does when it's mostly the three of us. Well, my mom has been here every day with us (thank god), but I don't know how much longer she wants to do that.  But it's been the best. My mom knows when to push me, when not to, she knows my bouts of silence are OK and doesn't constantly ask what she can do, she just does it. And she does everything the way I do it so it's never frustrating. I never feel like I'm being babysat. And there have been times where I just vent to her and she just gets it. Even when she doesn't, she at least makes me feel like I'm not actually crazy. 

So it's been hard. I don't know what normal is. I feel like I'm so far off the track of normal I might never get there. I'm so frustrated. I don't know what I need to get better, or what would help (aside from the lottery... I'm convinced a large windfall would be helpful), and I just want to be better. One friend said I probably need counseling for PTSD. And that's probably true. I have all of this frustration, and sadness, around Lucy's birth and I need to deal with it. But then I feel like such a whiny baby because I have a perfect baby and I didn't die after all. But now I get what people say when it fucks them up to almost die. It's a bizarre situation to be in. How do you even deal with that?