Monday, August 10, 2015

...explaining "what happened?"

I have been asked more times than I can count, "what happened?!" in regards to me being in the hospital. I know people will still ask, and that's fine, but maybe this will clear it up for some people and let you know a little bit about what's been happening since all of this as well.

 Just as a little preface to all of this: for those of you who don't know, I have a blood disorder called a Protein C Deficiency. It has never caused me any issues before, the biggest thing is that it makes my pregnancies (or any surgeries I may have) high risk. While pregnant, I see a high risk Dr along with my regular OB and also give myself a shot once a day. Also, as some have noticed, I do get extra monitoring of baby--ie: "extra" ultrasounds and non stress tests. I rarely talk about all of this bc I know I am blessed enough to carry a baby, but it is absolutely terrifying and the entire time I am pregnant I am a worried mess. Those who REALLY know me, know all this. The chance of my blood acting up is very high--either it could be too thick and begin to clot OR I could spontaneously go into labor and I could hemoragge/bleed out because my blood is too thin. Also, the part that has always scared me, is that the chance of baby/the placenta/cord clotting is very high which is why we do all the monitoring. Luckily. I've had 2 perfect babies and the medicine has always done its job...until it didn't.

Just a week after bringing Cecilia home I woke up with a bad headache. It was bad, but it wasn't TERRIBLE and certainly wasn't unbearable. I nursed her, I ate, I brushed my teeth (I think haha), etc. Ryan had wanted to run to DM that day but having a newborn, being just 6 days post partum, AND having a headache made me say no. He said he would take Milania and give me time to relax at home with the baby who had proved all she wanted to do was sleep. I said ok and basically laid around all day besides when Cici needed nursed. As the day progressed, my headache worsened. I kept taking Tylenol but it wasn't even touching it and by that evening I was absolutely miserable. I began googling things like aneurysms (because I'm crazy) and then got too scared reading about it and misdiagnosed myself and convinced myself it wasn't blood related but probably labor related---I was sure it was a spinal headache from my epirudural.  I never go to the dr unless I reeeeally need to and certainly never have gone to the ER, so I felt silly saying maybe I needed to go to the ER for a headache (it was a Saturday so this was our only option) but knew it was probably going to happen. We went to bed that evening and I attempted to sleep it off even though I could barely move at this point. Finally, a few hours later, I woke up Ryan and told him something was really wrong and I needed to get to the hospital like ASAP. We called his parents to come stay with Mae Mae who was still sleeping and we headed to Pella. We took Cici with us because she is breastfed and I had no milk pumped or saved at just 6 days old.

Once there, the ER dr sent me for a CT after I described to him what was going on and had the scans sent to Minnesota to be read. He let me know it might be awhile (30ish minutes) before we knew the results and they did blood work in between. Finally, he came back in and said he had good news and bad news: the good was that my blood work looked "fairly normal". The bad was that there was something going on on my brain and it appeared to them it was a brain bleed. I immediately started bawling not knowing what was going on.
 
How did this happen? Why did this happen? What did I do to make this happen? What do I do to make this unhappen? The list of questions running through my head but failing to come out of my mouth was never ending. I hardly had a chance to get myself together before I was strapped down, getting my vitals taken every few minutes, and on my way to Iowa City as Ryan and Cici were in the car headed that way also.

 Once in Iowa City, they also did a CT and couldn't determine what was going on. They then sent me for a type of MRI called an MRV which monitors brain activity and that's when they knew that it was in fact blood clots that were clotting off my brain, not a bleed. All of this testing and information came at me like a wrecking ball. My bed was quickly surrounded with about 8 neurologists and neurosurgeons asking me all kinds of questions (who is the president of the U.S.? Where are you?) and performing all kinds of tests (lift your right leg, smile, lift your left leg) etc. They all commented on how well I seemed to be doing considering what was going on up there which was positive, yet scared me.And then they would talk.

 Then, assuming I was well enough to understand what was happening, my Drs began showing me the images and explaining what was going on exactly. The main vein in my brain splits into two and goes to both sides of the body. The right side of that was completely blocked off by a clot along with several other veins on that side. The left side, however, was clear. The images and videos were terrifying.
 
That dark white vein that goes down the center and to the right of my head? That is the main vein in your brain and it should have a mirror image on the left, meaning both sides should look identical. As you can see, it is totally missing on the left. The vein itself isn't missing, the blood flow is what you can see and that is what is missing...meaning clots are blocking the blood flow completely on one side of my head.


This is that same vein, only viewing it from the side. It goes down the back of the head and should continue all the way to the front of the head. As you can see, there is a huge gap there where it looks like it got cut off. Those are several clots that have stopped the blood flow there as well.
 
After seeing these, I was scared.
 
Actually, I was beyond scared, I was terrified.
 
And I think everyone else in the room was as well.
 
After seeing the images, the first question I asked was if I was going to be ok. My Dr. grabbed my hand as tears fell down my cheeks and he was very honest. He said he "couldn't predict the future but I was at the best place I could be and they will do everything they can for me". Part of me had wanted him to lie to me and just say "yes, you will be fine" but I understand why he didn't say that also--he didn't know and he can't predict the future, yet those weren't the words I wanted to hear.

Everyone left the room and gave Ryan and I a minute and I just cried and cried and cried. I thought what if I don't make it through this? I have a week old baby, a 1 year old, and a husband and all I have is a headache. 2 hours before this I was at home now I'm being told nobody knows what's going to happen to me as I am being pumped full of drugs and introduced to 8 different Drs at a time, including neurosurgeons who are talking about SURGERY...ON MY BRAIN. It was such a sad and scary and overwhelming moment to take in. I just kept crying and trying to breathe as I rattled off thoughts--I told Ryan all the pictures of the girls are on Shutterfly for their baby albums (which have now been printed), and their birth stories are on my blog-that he would need to log in for Cecilia's, if anything were to happen to me. He quickly told me not to talk like that but I made him listen just in case.

As I rattled off thoughts through my tears, my team of Drs came back in once again, this time with their approach. They told me I wouldn't need surgery at this time but that the staff neurosurgeon would stay on my team for a few days just in case I did and they think that medications and my body could do the work to resolve the issue.

 I was then taken up to the Neuro Intensive Care Unit. I had made it very clear that I had a newborn who was nursing and unless I needed surgery and wouldn't be physically able to nurse her, or needed medicine that wasn't compatible, that I wanted her there with me. They were very accommodating and I got my own room in ICU. They added a lactation consultant to my team of Drs who would monitor my medicine, and the mother/baby unit sent down everything they use for newborns born there: a basinette, swaddle blankets, a breast pump, diapers, wipes, etc. Ryan, my mom, Cici, and I got "settled in" and Ryan and my mom began to update everyone on where I was and why. It had been a whirlwind few hours and most people had no clue anything was even going on.

In NeuroICU I was once again scared as everyone around me was unconscious. I felt like I wasn't supposed to be there and all these people were much worse off than me. It was somewhat of a reality check to see that the Drs were THAT concerned with my condition that that's where they sent me, but I was hopeful and praying to God i would remain in the condition I was in, and not become one of the other patients.
 
I should add: most people with blood clots headed towards their brain end up with strokes, aneurysms or much worse. I was one of the lucky ones.
 
NeuroICU was just about what you would imagine it to be-
I wasn't allowed any food or water for almost 48 hours in case I needed surgery. I was MISERABLE. I was also on 2 hour checks which meant every 2 hours they did my vitals AND did Neuro checks--the "where are you? What's your husbands name? What year is it?" Between the food/water restrictions, nursing a newborn, and those checks every 2 hours, I don't know how I managed to keep passing them! Waking anyone up that often could cause some confusion! But either way, I was thanking God I was ok and I was happy to not eat or sleep if it meant I would be ok in the long run.

Ryan and my mom spent the days cuddling Cici and hanging out in my room. Ryan would leave to go shower and my mom would hang out with us the vice versa. They were small rooms and the days were all the same and I know it was boring for them but I am so thankful for both of them being there with me and helping and enabling me to keep nursing Cici.

The days passed and we were given hope a few times that maybe I would be released the next day or even the day after and then something would happen and I would take 3 steps backwards and couldn't be released. It was discouraging and I felt like for the first time in my life, my body was failing me. My head was hurting SO so bad, I can't even explain it, I had lost hearing in one ear completely, my vision was blurry, my magnesium levels were all over the place, I couldn't turn my head or lift it at one point..the list went on and on. It was discouraging and frustrating to say the least.

Drs were doing their job though and keeping a very close eye on me and my clots. I had several scans to check on my brain along with all the other tests and lab work and even though I wanted to go home, I knew I was where I needed to be.

Finally though, after 8 long days, I was able to be discharged! My setbacks had stopped and though I wasn't getting "better" per se, I wasn't getting any worse either. I was so happy to hear I was finally getting out of there and most importantly...home to my other baby whom I hadn't seen in over a week. I had missed her so much it made me sick to my stomach, but we were finally able to see one another again! So I was sent home!!

Of course I was sent home with plenty of restrictions:
-I can't lift more than 10lbs (not even Milania)
-no driving
-I have to sleep sitting up
-blood work at the lab once a week

Just to name the main things.
 
The clots are still there, and will be for some time. With the million pills I take and all the restrictions I am on, hopefully my body will handle them appropriately and will dissolve them over the next several months.
 
But even with all of that and all that has happened...I am alive and God, I am so so SO thankful.

I've come pretty close to knocking on Heaven's gate a couple times, but for now I have two precious babies to raise, a husband to love, and friends and family to cherish, and I'm so thankful I've been given the opportunity to continue doing so, yet again.


So that's a (long) short summary of what happened and where we are today. Thank you to everyone who has kept us in their thoughts and prayers, they are all very much appreciated. We are working on thank you's for everyone who has helped us in any way, but again, thank you so so much for the Medfund help, the dinners, the getwell cards and flowers, etc. Words will never be enough to thank everyone who has helped us in so many ways, but know that we truly appreciate all of it.
 

1 comment:

Kristin LaRue said...

Ugh!! I'm bawling like a baby. How totally terrifying! I'm so glad you are doing well and will continue to pray for you and your sweet family! I stalk your blogs everytime you post one ;) ��