Save the Mommies: Advocacy and Education

I would first like to start with my story and help save the mommies.

On December 31, 2017, I gave birth to my second child a boy. We induced as we had with our first child Olivia, as I was borderline Pre-Eclampsia with both of them. As you can imagine the hospital was quite busy on a holiday date. We tried to check-in after having one last breakfast together as parents of just one child. But we got to the hospital and we were sent back home as there was no room for us yet. I felt a bit like Mary in the story of Christmas, in fact, we joked a bit about that. After going back home and resting we finally got the call in the afternoon we could go back. The fear of impending doom still hung over my head as it had the whole pregnancy. The birth was good as far as that goes but I remember it was odd that they offered oxygen during labor with this pregnancy and not my first. I started questioning if something was up. William Michael was born at 11:37 pm. He was healthy and beautiful.

Baby and I were released less than 48 hours later. I was so happy to get him home and start our new chapter as a family. However, I was extremely tired and chalked it up to being a mom of two kids now because Olivia was not as tired as I was this time. Days went by as we all adjusted. I was still exhausted and even questions my husband “Gosh I don’t remember being this exhausted with Olivia”. Being the wonderful husband, he is he let me rest as I needed but I so just wanted to be with my kids and William was just such a beautiful baby it was hard to take my eyes off of him. The feel of impending doom still followed me around after we got home. So much so I was adamant about taking as many pictures as I could and making sure there were some of William and me just in case something happened. Weird and eerie then and the same now looking back.

Speed up two weeks to January 14, 2008, exactly two weeks post-partum and that’s when that sense of doom came crashing in on me. I was woken up around 3:00 am because my chest was hurting. Michael my husband was getting ready for work and William was asleep next to me in his bassinet and Livi our four-year-old was sound asleep in her room. I got up to use the restroom thinking if I moved around a bit I could shake off this pain. Unfortunately, it just got worse and I fell on the bed asking my husband if this is what a heart attack feels like. He said I don’t’ know what are you feeling? My response “A ton of pressure like an elephant sitting on my chest”. So much pressure I wanted to push this invisible elephant butt off of my chest.

Next thing I know I am downstairs on the couch. Michael doesn’t even know how I got there. All I knew is that 911 was going to be called and I did not want them coming upstairs and waking up my babies. As I laid there Michael was on the phone with 911 and he was choking on tears as he had to tell them he thought his wife was having a heart attack. My neighbor John came over as he saw the lights on in the house and was concerned. He held my hand while Michael was on the phone and we were waiting for the EMTs. Fear was on both of their faces as I heard the sirens in the background and pleading to God for them not to wake up my children especially Olivia and have her see me laying there like that.

As they arrived our other neighbor came over and Trishel thought it was something with the baby and she found me lying there instead. I’m not sure how long the EMTs were there but I know I was wheeled into the ambulance and given nitro pills to see if that helped subside the pain. That was a negative I told the female attendee. The ambulance was backed up to the house in the driveway and I could see our second floor where my babies were sleeping. As we pulled away all I could think was “Is this my last time seeing my home and my babies”? Our neighbor Trishel stayed with the kids so Michael could get to the hospital. I can only imagine the horror and worry he was going through knowing I was in not good condition and didn’t know if I was going to be dead or alive when he was finally able to get to the hospital. Thank God he had not left for work yet is all I could say. Otherwise, I would have gone through this alone and with the kids by myself.

But there I was back in the hospital when I should be home taking care of my babies. Why was I in all this pain? Which was worse? The hours I spent in the ER with crushing chest pain. Hour after hour because no one could figure out what was wrong with me. I mean I was young, healthy, and just gave birth to a healthy baby boy. What could possibly be wrong? Right? Or did the Heart Cath hurt more, or was it my arm being squeezed between two metal plates after that? All of those hurt but what heart most was not knowing what was wrong and if I was going to die and leave my children without a mom and my husband a widow at the age of 37. The real long-lasting pain was to come.

After all that pain, they came and told us that I had a condition called Peripartum Cardiomyopathy. Heart Failure from pregnancy and could not have any more children. What?? What was this? Why had I never heard of it? You mean you can actually die after giving birth? I mean I had heard of it happening in the Pioneer days. But never knew what those women died from. But we were in 2008, aren't we passed all that? In the afternoon on January 14th, I was released and headed home. Broken heart and no idea what to do except take the medicine they gave me. Why did they release me? I could die, right? This condition I had can kill me. They didn't want to keep me overnight for observation? What if the medicine didn't work? What if I go to sleep and don't wake up? No medical team was at home to help my heart restart if it gave out. No nurses or doctors at home to help calm my fears about this unknown heart problem. I was glad to get to go home and see my babies. However, that was not the safest thing to do. But that's what they decided. Why? I don't know.

After a decade I still have no answers. Do they normally send home a patient the same day when they are diagnosed with heart failure? Especially a postpartum patient? Was it because they were not educated in PPCM? And saw no harm in it. But I would think that would make you want to keep a patient in your care. At least until you had more knowledge of the condition you just diagnosed them with. Or just to be on the safe side? Do they still release people with such a heart condition so early? 11 years and still so many questions.

The first day of the rest of my life started after I left the hospital. I was given a second chance. Could have died at any point and time while pregnant. Symptoms started while carrying my child. I just didn't know it. If I was going to die you think it would have been when I was walking all over Silver Dollar City, 7 months pregnant, with inner thigh tendinitis that started four months prior. Large, short of breath, and had this nagging feeling all pregnancy that something bad was going to happen. And the husband had a dream that he was at the hospital and had to choose between the baby or his wife.

I literally did not fly to Texas for my cousin's wedding because I had this nagging gut check. What if I went I would die. It was a constant nag. I fought with myself a lot. Feelings would be hurt, people would be hurt and disappointed. And they were. It was inevitable. But I was literally in tears deciding between my unborn child's safety and my own. Once I had made the choice not to go. The nagging ceased some but never really went away. Olivia had a great time on her last getaway with mom and dad as an only child. I didn't die on the trip but what was this constant fear of death?

Maybe I was being told to prepare myself, but for what, I didn't know. The fear of death surely did not leave after going home after a diagnosis with PPCM. It seemed even more likely now than then. Days and nights passed. I slept and slept. Relatives came and went. Staying with the baby and me, so Michael could go back to work so we didn't lose the roof over our heads. I felt horrible that I was too tired to take care of my newborn. Others did what I should have been doing. It wasn't hard for me to feed a baby or change a diaper. I had done that for other people’s babies since I was 12. My brother-in-law Ron Stewart came all the way from western Nebraska to help. It made me giggle a little. This big burly guy with a thunderous voice came to babysit the baby and me. Everyone took a turn. My sisters Tammy and Kristy. And who are we fooling? They enjoyed getting to lavish love on their new nephew. Same with sisters-in-law Michele and Rhonda. Neighbors and the church brought meals every night so we could eat.

Seeing as Michael worked, took care of the kids, and now had a disabled wife to care for. Every night I took my med and prayed I wouldn't die. For almost three year's I did that. Faith tested every day. I mean God let my dad die in surgery just four years earlier. Who's to say He was going to spare me? And in the middle of 2010 when I was taken off my heart meds because I was recovered with an EF of 55%. I was even more terrified because that little tiny pill that helped heal my heart was gone. Again, going to sleep was full of anxiety. Closing my eyes felt like Russian roulette. Was I going to wake up or not? I still had my anxiety med and Jesus.

So, I kept going hoping for the best and never prepared for the worst. Days turned into years. Follow-up Echo’s showed my EF remained at 55% without the meds. And in 2012 I was released from care by my cardiologist. For the next 6 years, I lived as if I was in the clear but not 100% sure. Then the fall of 2017 NE Heart got a new heart failure specialist. Dr. Gina Mentzer. And guess what? Her very own nurse had PPCM. So, she could sympathize more with my situation. She had a new Echocardiogram done and fought with my insurance company took a much-needed stress test that should have been done years and years ago. The stress test got the ok after first being denied by insurance. And before the end of 2017, I got a big thumb up. There was no damage to my heart muscle from the failure it had suffered. None!

In 11 years, I have grown so much, met so many amazing women. Finally, some of them in person. We love each other as if we are family. They are my Heart Sisters (fellow PPCM Survivors). I could not have made it without them. And now I fight for them. Some are still healing, some have healed, some might not and some have lost their fight. But as long as I am breathing and my Non-Profit Save The Mommies is able to keep going. I am fighting for them and alongside them. Today after 11 years I will not go to bed anxious and afraid to close my eyes. I survived and the fight continues to help others survive.

After 11 years I know God's plan for me. He was preparing me for a time such as this. A time to Save The Mommies. And that's going to take a strong heart and by the grace of God, that is what I have.

DeAnna Stewart is the President & Founder of Save The Mommies Inc

DeAnna Stewart
Additional Articles by DeAnna:

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