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Anntonette’s Fight Like a Girl Story (Congenital Heart Disease, Valve Replacement, Pregnancy Heart Failure)

Anntonette's Story congenital heart disease etcHello,

I want to inspire and give hope with my story for anyone struggling to cope with disease or a loved one.

I was a sickly baby, born in 1988, just under 5 lbs. My dad worked 3 jobs when my mom was away to pay for a babysitter who would take me on. My mother was in the Navy, lol. So I was born on the base and had my regular check-ups there. One day, I had a respiratory illness, and my heart sounds were undeniable, even to the newest of military doctors. I was almost 4 years old when doctor after doctor came in to listen to my heart. Finally, after freaking my mom out, my PCM told my mom that they needed to do dome testing. My echogram showed a mitral valve that wasn’t closing all the way and explained this may have been the reason for my sickly infancy. I was put on machines and monitored to make sure they didn’t miss anything else.

As I grew up, I had a normal childhood, with the exception of having to take antibiotics to see the dentist , getting winded easily, and getting sick a lot. I had a challenging teenage phase, ending with getting married at 21. I thought I was in love. 🙂 He was abusive, and I had a lot of growing up to do. I let him take over my life. Then, the moment that shifted everything: that strip that had two pink lines. My mom came to get me. She said, “We’re leaving, and you will raise this baby with me and your father back home.” It must have been mother’s intuition. She took me to the doctor over and over again. They kept us safe while I struggled to carry the baby. He was given a 25% chance to make it to full term. I was in the hospital for kidney stones, lol, talk about pain. The nurse was attuned to my whole body. She noticed my breathing and color and general mailase. She asked me if I had any heart defects or problems. My mother answered for me, which really annoyed me at the time. She told the nurse all about it. I was embarrassed that she was hovering. But again, mother’s intuition.

The nurse and my mother advocated for a full cardiac work up. Wow, she probably saved my life. My heart valve leak was still there, along with my aortic valve that now was damaged from being pregnant, and my other leaky valve being over-worked. The rest of my pregnancy was very closely monitored. I was swelling. I couldn’t walk far and couldn’t work. It was very difficult. My body was compensating for the pregnancy, but really because of my heart. The team delivering my baby assumed that labor would push me over the edge and prepared for open heart surgery in the C-section room after delivery.

Well, I was doing really well and went in for my check up at 39 weeks and 4 days. I had had a difficult night the night before and was due in two days. She assessed my cervix and said, “Well, you must have been working hard because you’re in labor, and you’re at 5 cm. We need to get you over the hospital now.” I was so used to pain and contractions and all my issues, I didn’t even realize I was in labor, lol. So when I was getting all hooked up, I was at 7 cm. They were shocked at how well the baby and I were doing. She was actually contemplating letting me try to deliver naturally, since I was almost there with little cardiac changes.

Then, in the middle of all the laughing and visiting, the nurse’s face went serious. She put the O2 mask on me, flipped me over, and said, “You’re ok, just focus on breathing.” Everyone got quiet. I couldn’t see the monitors, but call it mother’s intuition. I knew there was a problem. I felt nothing inside, and my heart sank. Then she said, “I’ll be right back,” but she she came back with my doctor. This wasn’t good, I was thinking, but I really tried to focus on breathing. I knew I was strong, and I began to pray. All I heard her say was, “I’ll give them two minutes to come back around, then we’re crashing the OR.” It was then I realized we weren’t just talking about my baby. We were both in the gray zone.

Sure enough, after my spinal med was pushed, I don’t remember much except my mom crying and hearing vague voices as I went in and out, rolling down the hall in my bed. I heard the razor going and saw glimpses of shadows behind the blue sheet. They don’t filter what they say. I heard “Two minutes, people, that’s all they have. Let’s get this baby out.” After they did, and I was sure he was going to live, I saw him and blacked out completely. I woke up in the postpartum room, 12 hours later, where my husband threw divorce papers at me and said he wasn’t going to change and didn’t want anything to do with the baby. My mom told me we had both crashed, but for some reason, my eyes were still open. I call it being a mom.

I had my best friend there, holding me while I grieved briefly, before realizing it was for the best, just a really mean way of doing it. Anyway, we both went home, very tired, 4 days later. He had jaundice, and I was healing from the C -section. Something changed going home that day. I became determined to be an incredible mom and fight my own body. I wanted to breast feed so badly that my mom (bless her heart), held him up to me when I was too weak. She woke up in the middle of the night to help me get up and stand next to me while I did what I could. Soon, I was able to do everything by myself. I started walking with him every day and taking care of myself. It was all coming together, whew.

I decided after 8 months of staying home to heal up that I was ready mentally and physically. I took night shifts at a nursing home, since my dream was to be an RN. It was my first stepping stone job. I went to the first shift and had a really hard time. I went home thinking, that’s weird, I used to do night shifts back to back and I was fine. I was seeing a therapist for my emotional issues, and this led people to assume it was self-inflicted. People starting telling me, “Oh you’re fine, it’s just the feeling of being tired because you have a baby.” Even my PCM did that without clarifying with tests that what was what was going on. My mom was helping me breast feed again, and I became very weak again. My boss was an asshole and asked me to go home and not come back. I went home, fell asleep, and I couldn’t get out of bed for almost 24 hours. I got up to feed the baby and thought, what’s going on, something isn’t right.

I forced myself to go back to the doctor and gave myself two weeks. I did this intentionally, knowing what we were going to find was bad, and I needed to prepare mentally for this. I started making letters for my son and preparing for the worst. Call it mother’s intuition. I went in, and they sent me directly to the specialist I saw while pregnant. He sat me down and said, “You need an echo gram, let’s go.” He did it himself. He brought me back in the room and said, “Well, we have a lot of options. I recommend open heart surgery ASAP to replace the aortic valve that is failing completely to save you further heart damage. Then we can worry about the other valve later. You’re still very young. You have a better chance than most because of your age.” He kind of gave me false hope by saying he would give me a valve made of my own tissue so I could have another baby if I wanted. Little did we know, it wouldn’t matter (my heart would never survive a pregnancy now, 4 years later).

I had to go home and tell my family, who was exhausted and tired of helping. Do you blame them? I had to tell them that if we didn’t work as a team for this huge surgery that would require a lot of them to help with the baby and me, that I would die in a year’s time. That’s not a feeling I ever wanted to put on my loved ones who already helped so much. My heart had been failing the whole time I was nursing because the doctors took for granted my age and assumed I would be fine. So my son, at 9 months old, was going to be introduced to my aunt, who was kind enough to come take care of him while I was hospitalized. I had a 75% chance of making it home just fine after this.

At 4 am, two weeks after I broke the news, I said goodbye to my son and headed to the hospital. My parents took me, my mom by my side, while I was given instructions to scrub down and given Valium to relax. I woke up, unaware of the details of the day. Everyone around me looked very tired. I was weaned off the ventilator and sent to recovery. It was winter, so my son wasn’t allowed in, and I wouldn’t see my baby for 5 days. I brought his clothes to sleep with and put his pictures up in my room. I remember walking after the first time was so hard I cried with every step, still so weak. I had terrible nurses on that floor. They yelled at me, left needles in my arm, and were very unprofessional. I was ready to go home.

The doctor came in and said, “You are weak because you need a transfusion.” I really didn’t want one because I worked at the blood bank and heard stories of what happens to the blood. So I reluctantly agreed, knowing it was my only choice. I feel like no one prepared me for that part. The after part. I felt everyone around me becoming frustrated that I wasn’t bouncing back like I normally do. I felt the tension and felt very alone. I became depressed in that hospital room, like no one understood, and I was just not prepared for the challenges. For the first time, my mom had left my side. She couldn’t do it anymore, for some reason. My therapist told me much after the fact that their perception doesn’t allow them to understand where I was coming from, and I would struggle with relating to people. She was right, I still do, but it takes practice.

I went home and continued my journey of healing. It was emotionally and physically very challenging. I was making progress, and on my way home from my two month check up with my son in the car, a woman hit my car off the freeway. Yes, bad luck, or if you believe in God, like I do, I obviously had to learn a lesson or become stronger for something else. I didn’t have symptoms of anything right away after my cardiac markers went up in the ER. I was monitored, but nothing serious at this point showed. I was sent home with instructions to call if this and that was to occur.

So the next day, I had a fever, started throwing up, and couldn’t walk or stand. I yelled for my mom and told her I felt like I had minutes before I was going down. I knew this feeling all too well. She helped me get into the car to take me to the ER. I remember telling her, “Faster, mom, I can’t feel my fingers or toes.” I was in contractures all over and was afraid I’d stop breathing. They came out and carried me in. The two knucklehead nurses that checked me in were unaware of my body’s symptoms and ignored the obvious shock I was going into. With minutes of precious time, they argued over me going in the bathroom to take a pregnancy test first before anything else was done. The physician never even looked at my chart. It was flu season, and they all arrogantly assumed I was dehydrated. Then after my blood pressure fell, my mom ran down the hall to find another doctor. Call it what? Yep, mother’s intuition. She found one and handed him my chart, which she stole on her way out the door. He read it while walking in and said, “I’m taking over. Get out.” Another nurse came in and starting running fluids and actually addressing the shock symptoms. I was taken into the ER for a central line to be put in for easier access.

Sometime during this, I flatlined on the table. It is here I believe my angel was with me. My doctor told told me once that when people that are sick go down from shock, they hardly ever come back. I came back again from the dead!!! I woke up in ICU, where I stayed for a week. The doctors told my parents it was probably septic shock from the surgery, and the car wreck made me less able to fight it off. He told my dad to prepare to say goodbye. My family thought I was going to die. The doctor thought I was going to die. I woke up on about day 3. I immediately bonded with my amazing nurse and began to prove them all wrong, probably because I never knew at the time I was supposed to die. That’s truly fighting like a girl.

I wanted to go home so bad to see my baby, when I learned he had gotten sick too. But they didn’t let me see him again. It was hard. I finally got well enough to go home, and that’s where my real fight started. I came home to custody hearing papers from my ex. All of a sudden, after all my family went through to be his father for him, he wants back in as a stranger. I also made a deal with God in the hospital. 😉 I went home and decided that I would live every day like it was my last. I changed my whole mind, body, and soul. I decided to conquer my biggest fear of math and go back to school to chase my dreams for my son. I decided to stay home with my family to give my son a family.

When I let go and ran with courage, God sent me life and a new love and dreams that came true. I’m getting married this October to the man my son calls Dad. He is amazing to my son. I fight my ex in court, but I don’t let it affect me for my son. I graduated nursing school and am now an RN. I have this beautiful life I don’t take for granted every day. My heart is still a pain in my ass, but I push myself to exercise, eat healthy, and stay active to help it last longer. I will need more surgeries in the future, and I have gained comorbid illnesses. But I have no regrets because I live my life so beautifully every day. I’m so grateful and happy. “Your life isn’t a measure of the number of days, but the days that take your breathe away.” I hope to leave my patients educated and prepared and feeling like they are not alone.

Hope this helps,

Anntonette, RN 😉
New Mexico
Submitted 02/03/2015

The informational content of this article is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.

This article is intended to convey general educational information and should not be relied upon as a substitute for professional healthcare advice.

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