IT HAPPENED TO ME: I Almost Died From Congestive Heart Failure 10 Days After My Twins Were Born

PCOS, IVF, Babies A&B and PPCM: The birth of my twins and a journey of acronyms.
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Stephanie Scalf
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PCOS, IVF, Babies A&B and PPCM: The birth of my twins and a journey of acronyms.

When I was 17 and my doctor told me I had PCOS (polycystic ovarian syndrome) I did a mental high five with myself:

Go me! No unplanned pregnancies! No periods! 

Its implications meant irregular periods, weight gain and problems conceiving. I didn’t consider for a second the future of my unborn children because I knew I was meant to be Mom.

In the first year of marriage to my husband, several tests showed that I was not going to conceive naturally. We turned to IVF (in vitro fertilization) and after a much-anticipated growing period, my eggs were ready to be transferred. Thirty-five weeks and four days later, I gave birth to two incredible little humans.

About five days before the babies hatched, I was hospitalized because I was having bouts of high blood pressure and rising and falling blood sugars. I was having tests run and my doc wanted to keep an eye on me so I had to stay. I wailed like a drama queen at a funeral. I had never been sick. I had never had a real IV and I had never slept in a hospital. My sweet husband was by my side for the next 72 hours while I cried every 20 minutes about whatever random thing I could focus my attention on. My blood pressure pretty much stayed the same but my buns needed more time in the oven.

On October 11, a sonogram showed that baby A was losing fluid, so ready or not -- here they come. It took no convincing from my OB. I was ready. I was miserable and hurting and huge and ready.

Baby A was a boy, 5lbs 14 oz 18.5 inches long.

 Baby B was a girl, 5 lbs 4 oz. 17.75 inches long. 

They were perfect. My c-section was weird (barfing and not being able to feel my body) but my stats were normal and I kept both placentas. I had them freeze dried and encapsulated. I was pumping like a gas station and up walking around the next day with no problems. The placenta pills are meant to equip your body with nutrients lost during delivery and they gave me energy. I felt my heart racing a few times and pinned it immediately on the pills. Within 12 hours I was out of bed and was able to hold my loves for the first time.

Full arms, fuller heart. Mama, Dru and Roxy.

Full arms, fuller heart. Mama, Dru and Roxy.

Imagine Forrest Gump: “I was running” but instead, “I was swelling." 

I was blowing up like a balloon and I didn’t know why. My doctor told me it was normal and kept me on blood pressure medication that we had started at the hospital until my body normalized from the births. I was coughing and really started feeling lousy the day I would be able to bring my baby girl home. I took a few minutes away from the babes, ran downstairs and was seen in the ER. I thought I was getting a chest cold. I had some shortness of breath and they did an X ray and took my blood pressure. I was released an hour later with the diagnosis of bronchitis and some antibiotics.

The next day I was trying to troop it out at the hospital in a non-patient room -- sleeping/pumping/loving on babies -- but I had a full on “I’m sick and I want to go home,” breakdown so we packed up and headed home. I was completely torn leaving one child at the hospital and taking one home. Literal heart ripping stuff here. 

We only live 3 miles from the hospital, so my husband had my milk couriered to the hospital nursery for my baby boy 4 times that day. (Yes, he is incredible) The babies were ten days old, I was as happy as I had ever been and I couldn’t muster the strength for a single smile.

That day at home was basically my death march. I couldn’t breathe. I convinced myself that maybe it was anxiety from two new babies, complications from surgery or I was having the worst case of bronchitis I had ever experienced. My cousin came and took care of me that day. I tried to rest and she took care of baby girl. 

She brought me snacks for pumping times and bustled around the house while I agonized over every breath, clueless. My husband came home that evening after his first day back at work and I was much worse. I was exhausted and I couldn’t lie down. I felt like I was choking and kept hearing this weird crackling sound. I would sit up on the side of the bed and gasp for air that wouldn’t come.

Around 2am my husband woke and insisted on taking me back to the ER. I hadn’t slept, breathing treatments weren’t helping and I wasn’t good. He wasn’t going to argue with me so he got the baby in the car seat and told me to come when I was ready. It only took about 15 minutes for me to realize that shit was getting real. The closer we got to the hospital the clearer it became that this was a true emergency. “Please drop me off at the door.”

The next few hours were a whirlwind of nurses, doctors, needles and tests. You know things aren’t good when they start bringing the equipment to you instead of wheeling you to said equipment. I had an EKG, X rays, CT scan and an Echocardiogram. Here I was thinking, this is a lot of foofaraw for pneumonia, which is what I assumed was going on.

All this for bronchitis?

All this for bronchitis?

My husband waited upstairs with the babies until I called him at about 5am. Congestive heart failure. You know that call you never want to give or receive? I am dying. We just had 2 babies and I am in the ER right now, dying. My heart is only functioning at about 25% effectiveness and my lungs are full of fluid. Please hurry.

My precious praying husband, my concerned pacing ob-gyn and the ER doctor were in and out of my room explaining the diagnosis and protocol. My siblings, pastor and parents filled and emptied the room with tears and prayers and well wishes in a matter of moments. I was grey. I still couldn’t breathe and it was getting worse. The nurse was turning up the oxygen and repositioning me and I still couldn’t breathe. My blood pressure was climbing and my oxygen dropping. I could hear the nurses and docs referring to me as “the mom” and I knew I still had a purpose and I knew I couldn’t give up.

A kind-eyed cardiologist showed up amidst the ramblings of my family and confirmed that I had PPCM (peripartum cardiomyopathy). The plan was to use blood pressure meds and diuretics to rid the fluid that had built up in my lungs because of my heart failing to pump efficiently. I lost 7 pounds of fluid the first hour. I started to see the light at the end of the tunnel instead of the big light of Jesus trying to welcome me home. It was a fight and I always have the last word. Not today God, I’m a MOMMY.

Once I was stabilized I was transferred to the ICU and within a couple of days was fitted for a LifeVest. In case of SCA (sudden cardiac arrest) I would be zapped back in to regular heart rhythm with this vest I had to wear 24/7. I was frail and weak and had to carry around this heart zapper. Yay.

Sentenced to 4 months of LifeVest confinement.

Sentenced to 4 months of LifeVest confinement.

It has been almost 7 months and my heart has healed a great deal. I am not back to normal heart function but I don’t have to wear a vest or a pacemaker. I had to stop breastfeeding and I am now heavily medicated. I can’t have any more children or my life is at risk. PPCM is a real and present danger.

If I had known the signs prior to pregnancy I would have rallied much earlier for support and testing. Shortness of breath, heart racing, excessive swelling and water retention, crackling in your chest, coughing -- if these things are happening to you during or shortly after pregnancy ask for an EKG. Ask for an echo. If you or someone you know is pregnant, research PPCM. Get in the know. As for me, I’m busy being a mommy.

#dembabies

#dembabies