A Stroke is No Joke – My Scariest Day Of All

New to This Mommy’s Heart? Check out my story from the beginning here – My PPCM Story

It has been a bit since I posted. I’ve been busy finishing up cardiac rehab and getting more involved in a club I am in. To be honest, though, I’ve been avoiding this post. The day that I had the stroke was the scariest day of my life. Reliving it isn’t something I am looking forward to. Nonetheless, I cannot tell this story without talking about it.

I almost died several times throughout my hospital stay but I was sedated or so far gone that I don’t remember any of it. That was not the case on December 28th.

On that day all of my husband’s family plus my son had stayed home and gone for a visit to the Children’s Museum. The only people at the hospital were my husband, parents, and daughter. I’m very thankful for the small audience on this traumatizing day.

My hematocrit was stable at 19, white blood cell count was finally normalized at 9 and my INR was 2.9 which allowed them to stop my heparin in the morning. This was the first time during my entire hospitalization that I was able to stop my constant heparin infusion. 

Let me tell you a bit about INR.  International Normalized Ratio (INR) is a measurement of the time it takes for blood to clot. When you have a device like a total artificial heart inside of your body, there is a higher chance of a blood clot breaking off which can lead to a stroke. In order to keep my blood thin and try to get to my goal INR, I got heparin (a blood thinner) via an IV. 

Since my INR was now within the goal, they stopped my heparin and switched me to only using warfarin which is another blood thinner but it is taken by mouth. The goal was to let me go home eventually even if it was with the TAH, so getting rid of each IV was always a step forward.

The day was going along pretty normally. I worked with OT to learn how to dress without breaking sternal precautions, went on walks and ate well. Around 2 pm is when things started to go wrong.

I remember sitting in a chair next to my bed. My husband was talking to my parents but I was distracted by this weird feeling. I really wasn’t sure what was going on. My arm felt weird. I put both arms out in front of me and tried to make them drop evenly but one side felt so much heavier. Multiple times I just kept lifting both arms up and trying to let them fall at the same time but the one side was just so heavy.

My family was looking at me at this point and asked me what was wrong. My brain wasn’t working right and I couldn’t find words. All I could say was “heavy”. My husband pressed the nurse call button.

“Heavy, heavy, heavy, heavy” and then I started to cry. I remember my mom saying I wouldn’t be acting like this if something wasn’t seriously wrong. Suddenly, my husband asked me to look at him and it immediately hit me what he was looking for. As soon as he saw my face he jumped up, pushed the code button on my wall and ran down the hall to the nurses station to tell them I was having a stroke.

Want to know how you can tell if someone may be having a stroke? Think FAST:

F – Face – Does their face look uneven or is there drooping

A – Arm – When arms are up, does one drift downward

S – Speech – Is their speech slurred

T – Time – Call 9-1-1 ASAP

In a flash it seemed like my room was filled with medical staff. They helped me get into my bed and wheeled me to the elevators so I could get a CT scan. One of the nurses asked how I was doing. I could only utter “scared”.

When we got down to the CT lab and were waiting for them to put me into the machine, one of the VAD coordinators that was with me let me use her phone to call my husband. I don’t like people to worry about me, it is a lot easier for me to worry about other people. When I got him on the phone:

Me: “How are you doing?”

Him: “Why are you worried about me? I’m worried about you”

Me: “I always worry about you”

And I did and I still do everyday since all of this happened. I worry about my husband and my kids and my family having to be without me. I’m not some super important person to the world but I’d like to think I am pretty important to them.

Anyway, I got the CT and that came back normal which was great news because it meant there wasn’t a big bleed on my brain. My neurology exam was abnormal but by 3:30pm, after they had taken me back to the ICU, I was feeling better with only residual face droop and arm weakness. Given my fast recovery, neurology actually classified my stroke as a transient ischemic attack (TIA) or mini stroke.

I don’t want to have to get into this again so SPOILER ALERT I ended up getting an MRI after my TAH was removed and I did not have a TIA. I had a bilateral stroke likely from clots that broke off from my TAH and then went up into both sides of my brain. So, there you go, no half-assed strokes from me.

Back in the ICU

I was anxious and scared the rest of the evening. My husband slept in the bed with me for the first time during my hospital stay to try to help calm me down.  My anxiety mixed with frequent checks from the nurses throughout the night led to me only getting an hour or two of sleep. For the first time I was experiencing fear. I didn’t want to sleep because I was afraid I wouldn’t wake up.

Psych came to see me. We discussed my anxiety and, probably to the surprise of my family members that were in the room (because I hadn’t mentioned it to them), I asked if I had postpartum depression. I asked this because:

“I care about her and I don’t want to hurt her but she just feels like a baby, not my baby”

This was incredibly hard to admit. Good moms aren’t supposed to feel like this, right? Okay, I know better than that, but it was completely different when it was me experiencing it. To help with my anxiety I was given lorazepam and they tried giving me advice for bonding with my baby including skin to skin.

I was moved out of the ICU and back to the main floor within a day. There I just got back to my old routine – eating, walking, sitting in the chair. I was doing well in that regard and my anxiety was managed well with the medicines.

Still a little droopy

I worked on bonding with my baby as well. On my walks, instead of leaving her behind in the room, I would take her with me in the stroller. 

And, with what little open skin I had, we had some skin to skin time and oh my gosh how it helped. Mommas need to touch their babies and that is where I was missing out. Just a little bit of extra contact and I could feel my bond really growing with her.

Like I said before, the goal when you are in the hospital is to get you out of the hospital. The “washing machine” I currently needed someone to push around with me wasn’t going to work at home. I had to transition to the Freedom Driver settings.

Now, what in the heck is a Freedom Driver?

161 thoughts on “A Stroke is No Joke – My Scariest Day Of All”

  1. Jen we never want you to worry about us but you are right you are super important to us. Never feel guilty about Sienna everything you were going through the numbness you were feeling was nature’s way of protecting you. It was the only way you could bear not having your baby with you. That’s what your Mom was for to love her and hold your place until you were better. Her and I talked about you all the time. She is a beautiful little girl that loves her wonderful mommy.

  2. My heart truly aches for you but I smile because your truly a survivor! You have been through so much and still remained smiling through it all. I was diagnosed with PPCM the day I came home from the hospital with my baby and ended back in hospital in ICU and I only was able to FaceTime my baby, but your so strong and it’s truly amazing how positive you could be after going through so much trauma. I cried for weeks after I was diagnosed and finally reunited with my baby but you really make me look like a big baby. Your husband and you are amazing and keep telling your story! You really give me strength!

    • Thanks, Stacy! You are definitely not a “big baby”. We are all fighters just trying to stay strong for our families. Everyone knows mommas are tough 🙂

  3. I have have lots of thoughts and feelings and kind of don’t know why I’m putting myself through reading all of this. It’s fascinating and horrible and I am so very sorry for all that you went through and your family too of course.

    My baby girl was born in December 2017 with a heart condition and was also the most critical patient on the CICU. Gold stars. I felt compelled to post when I read your sweet girl didn’t feel like your baby. Mine didn’t either. I had young children too and no family around (she was stable at this point just working on eating) and I only saw her for a few hours at night. It was a chore to go see her after dinner and a long day but I’d stay until after midnight and barely function the next day with the boys. When we took her home finally she was a baby we took care of but still not my baby
    Etc etc the story goes on. It got better eventually but it was so so hard. We still have therapies weekly but we made it to our normal (I’m afraid to type those words just in case). Thank you for writing that she didn’t feel like your baby. Hospitalization when there is an infant involved, as parent or child, are twilight zone strange.

    Anyway, glad to know I’m not the only one to feel that my baby didn’t feel like my kid.

    I hope you are doingn we’ll. This is as far as I’ve gotten in your blog but I will continue. Love and prayers for you and your family

    • Thanks for sharing and thanks for reading the blog. I have long said that I thought my whole hospitalization was harder on my family than it was on me. I can’t even imagine what it must have been like as a mother with your other littles at home to care for. That had to be both physically and emotionally exhausting.

      I’m glad to hear that you are connecting better with your daughter and she is doing well with therapy. I know what you mean about the “new normal”. Life is now separated as before and after these life changing events for me.


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