“I am, by nature, a happy person. I am the person in the middle of the dance floor at a party. I am the person who is loud and speaks her mind (in a charming way, hopefully). I don’t feel like I am necessarily lying to the world. This IS who I am, but what strangers would never know about me is, I am grieving. The kind of grief that only some people will experience in this life.
My name is Markie, and I am what they call a ‘loss mom.’
I come from a huge, loving, crazy Mormon family in Utah. I grew up around a lot of kids and I always knew I wanted to be a mom. I was 23 years old when I met my now husband, Andrew. He was, and still is, the most handsome man I have ever seen. When we started dating, we quickly learned that I was the loud, outgoing one, and he was the sweet, reserved one. Together, it was a perfect balance.
A year later, we got married. A year after that we got pregnant with our baby boy, Urban, (who looks just like his daddy), and one year after that we found out I was expecting again. I had always felt strongly that I needed my kids to be really close in age, and we were very excited.
Very early on in my second pregnancy, I experienced some complications that were concerning. I thought I had miscarried several different times because of heavy bleeding. I couldn’t keep anything down, including my prenatal. I spent my entire first trimester attached to the toilet. During this time, my 8-month-old would entertain himself by emptying out the bathroom cabinets and drawers and surviving off of formula, Goldfish and Animal crackers.
When my first ultrasound came around, I was so happy to see a perfect little tadpole with a very strong heartbeat. A few weeks later we found out she was a girl. We tossed around names for a few days but ultimately landed on Everly Jo. I couldn’t believe I was having a girl. For some reason, I always pictured myself a ‘boy mom.’ I always made jokes that if I had a girl, she would be just like me, and that would certainly be a handful.
In the middle of every pregnancy, you are supposed to have a detailed ‘anatomy scan’ of your baby. This ultrasound scan was very important because they look at the baby very closely to make sure there are no surprises when he or she is born. The night before my 20-week scan, I barely slept. The next morning on my way to the appointment, I had to pull my car over to throw up several times. I was so nervous, I texted my sister to help calm my nerves. She told me that everything would be okay and to let her know when the scan was done.
When I walked into the room where the ultrasound would take place, I set my things down on a chair and I reached into my purse to get my phone. I asked the technician if it was okay if I FaceTimed my husband during the scan. He was in New Jersey at the time for work, while I was in Salt Lake City. The technician was very warm and welcoming, and the entire first half of the appointment was pretty lighthearted. I wish so badly the appointment could have stayed that way.
After the scan was done, the technician put her hands and her lap and said the words, ‘Now, I have to tell you that I do see a problem…’ All I could say was, ‘Okay…?’ I almost felt like she was joking at first. Who would joke like that? My brain had to process that those words really did come out of her mouth. She then explained to me that she saw some abnormalities with our baby girl’s heart and that she would send a doctor in right away to speak with us about it. She told me how sorry she was to give me the bad news. She handed me a box of tissues, and left the room.
I didn’t want to face my phone toward me because then Andrew would see how badly I was losing it. All I remember him saying is, ‘You okay, honey? I wish I was there with you.’ He reassured me that modern technology is amazing and we will do whatever we need to make sure she is okay. I told him, ‘People aren’t exempt from awful things happening to them and it’s our turn.’ I knew something was wrong. I had felt it all along.
A few minutes later (what felt like an hour,) the doctor came into the room. He was very kind and considerate knowing that we had just received this devastating news. He went on to say that our baby girl has several heart defects that ‘ABSOLUTELY WILL REQUIRE SURGERY.’ Seriously, my world shattered. This couldn’t be happening, but it was happening. I wasn’t dreaming. A mother’s worst fear was becoming my reality.
We had a few weeks to let the nerves sink in, and try our best to mentally prepare for our future. The next step was to see a pediatric cardiologist to get a plan in place for when Everly was born. In that time leading up to the next appointment, I couldn’t stop my mind from wondering, ‘Will she be scared? Will she be in pain? Will she only know the inside of a hospital? Will I get to have her in this life? Will I have her for a few hours? Days? Weeks? Months? Years? Will we have her for spring and summer next year? Will she ever wear that cute watermelon swim suit with the sunglasses and white hat?’ So many unknowns… it was overwhelming and heartbreaking.
When we met with the cardiologist, he tried to educate us on how complex Everly’s heart was. She was diagnosed with Hypoplastic Left Heart Syndrome, Double Outlet Right Ventricle, AV Canal and Pulmonary Stenosis. Her heart was so defective, that he didn’t even have pictures in his binder to give us a visual. He ended up having to draw a picture of her heart instead. He explained the different surgeries Everly would need throughout her life and that we should expect to spend a lot of time in the hospital. Again, we tried to mentally prepare.
Everly Jo Ostler was born at 8:59 a.m. on November 6th, 2017, at the University of Utah Hospital. She weighed 6 pounds, 2 ounces, and was 19 inches long. She was stunning. She was angelic. She was absolutely perfect. How could she look so perfect, and be so sick? How could this tiny piece of heaven have anything wrong with her?
After she was born, they immediately hooked her up to IVs. The first few days of her life she was on medicine that told her body that she was still inside of me. Her heart was getting the support it needed, just like it had through the umbilical cord.
When I finally got to hold her…….. I have no words. It was the closest I have felt to heaven in my entire life.
I spent the next few days holding her and loving on her. No one could tell I had just had a C-section. I was just so motivated to get out of my hospital room, and into hers.
At just three days old, on November 9th, 2017, Everly had her first open heart surgery. I remember crying as I walked behind her and her medical team, as they wheeled her crib and all her equipment down to the operating room. I probably kissed her a thousand times before I said goodbye.
For the first surgery, Everly received a BT Shunt to help balance her oxygenated blood between her lungs and her body. The surgery was a success! Although she was very swollen, they were able to close her chest immediately after the surgery was done, which was great news.
After a week and a half of complications, they were thinking that her BT Shunt was doing too good of a job and her body needed more of the oxygenated blood. After deliberating for a few days, the surgical team decided to take her back in for another surgery. For most moms, that would probably be devastating news, but for me, it was relief. I had watched her body suffer so much and I knew that something wasn’t right. I could feel that the second surgery was the right choice… AND IT WAS!
After the second open heart surgery, Everly seemed to do a lot better. She was finally able to be extubated and breathe on her own. She continued to get healthier and stronger every day. I couldn’t believe the nurses mouth when she said that Everly was getting moved out of the ICU. I cried tears of joy. Pure joy. If Everly was healthy enough to ‘graduate’ from the ICU, then that means she was on the path to be able to come home with us.
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