‘She was stunning. She was angelic. How could she look so perfect, and be so sick?’

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“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.’

Mother kisses forehead of newborn that will soon pass away
Markie Ostler

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.

Mother sits on floor with pink confetti next to toddler son who is standing
Steph Parker

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.

Newborn baby girl with big pink bow on her head and tubes up her nose before she passes away
Markie Ostler

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.

Mother lays over newborn in NICU holding her hand before she passes away
Markie Ostler

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?

Nurse holding newborn baby who won't make it
Emily Devenney
Mother who just gave birth kisses forehead of newborn who won't live long after
Emily Devenney
Father holds newborn in NICU
Emily Devenney

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.

Newborn baby sleeping in NICU
Emily Devenney

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.

Mother holding newborn who is hooked up to IV's
Markie Ostler

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.

Newborn baby asleep after open heart surgery with scar down middle of her chest
Markie Ostler
Newborn baby sleeping in hospital with wires and tubes attached to her after open heart surgery
Markie Ostler

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.

Newborn with chord up her nose looks up after open heart surgery
Markie Ostler

We LOVED being in her new room at the hospital. It was huge, with its own bathroom and a lot more privacy. Urban was able to come into her room and spend time with all of us, which was so fun. I felt so blessed to be holding my daughter in my arms, while my son and husband played with toy cars on the ground. It had been a month since she was born, and we were finally alone with both of our kids. I felt like I could finally be Everly’s mom. I could pick her up without help from a nurse, I could bathe her, change her diaper, and snuggle her all-day long.

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Mother and Father hold firstborn next to sleeping newborn after open heart surgery
Markie Ostler

After a long day of singing Christmas songs and hanging up Christmas décor, I put Everly in her crib and headed home to shower, eat, and put Urban to bed. It wasn’t two hours later when we received a phone call from the hospital. Everly had gone into cardiac arrest and they were performing CPR on her. The social worker told us we needed to get back to the hospital immediately. This wasn’t real. Was it? She was doing so good! We were JUST with her! No way, could she have taken such a drastic turn from the time we left the hospital.

The drive to the hospital was awful. Andrew and I were both silent. We were both praying that Everly would pull through and be just fine by the time we got there. We sprinted into the hospital like we had just robbed a bank. When we approached Everly’s room, I could see that there were about 20 medical professionals surrounding her. They were all in blue aprons with masks and hats on. One of her doctors approached us and had us sit down in the nurse’s spinning chairs.

She told us that they had been trying to revive Everly for a solid 45 minutes and even if they end up getting her heart to beat again, they were very nervous about brain damage. Even if she did make it through this, what kind of life would she have? They sent social workers to come speak with us…

I wanted to see what was going on so I asked if I could ‘poke my head in and watch what they were doing.’ A nurse told me I could do whatever I wanted and that I was allowed to be as close or far from the situation as I wanted. As I took the 10 steps forward to get closer to Everly’s room, even though I knew the severity of the situation, nothing could have prepared me for what I witnessed.

The exact second I stepped into my daughter’s hospital room was the very second the surgeon threw his hands in the air and said, ‘That’s it. There is nothing else we can do.’

Everly was gone. It was December 9th, 2017. Exactly one month from her first surgery. She hadn’t yet weighed 7 pounds.

Baby girl with black on on her head lying in hospital with wire up her nose after open heart surgery
Markie Ostler

Immediately after the surgeon called time of death, a sea of 40 plus eyeballs shot straight at me. They all knew I had seen the exact thing no mother should ever have to see. Not only did I witness my daughter’s death, but I witnessed an entire room of medical professionals, as their hearts broke.

The entire staff came to our rescue. They hugged us and with tears in their eyes, told us how sorry they were. They dressed Everly in cute striped pajamas and I put a pink bow on her head. Andrew and I held her and told her how much we loved her. I could feel that her spirit was not in her body anymore. She wasn’t there. I am sure some moms could spend hours and hours with their child’s body, but I couldn’t. It just wasn’t her anymore…

It was maybe a half hour later; I took her from Andrews arms. I placed her in her crib and put her blanket on her. I took a few beautiful pictures and we said goodbye. We walked out of the hospital, sobbing, and drove home…

The second we got home, I walked straight into Urban’s room. I picked him up, and just held him. I held him and cried. After I placed him back in his crib, I snuck out of his bedroom, shut the door, and collapsed on the ground. I had never cried so hard in my life. I don’t know how long I was on the floor. It could have been hours; I just don’t remember. I finally got the strength to stand and I went into my bedroom. I then took a sleeping pill, and fell into a deep sleep. I knew the next day would be a busy day, planning a funeral.

Mother and Father arm in arm at funeral for their baby
Emily Devenney
Father holds casket at his baby daughter's funeral
Emily Devenney

It has been a few months since the death of my sweet Everly Jo, and I am still breathing. Most days I feel like suffocating, most days I feel like never getting out of bed, most days I feel sorry for myself, but every day I feel grateful. I am grateful that I have a close relationship with God. I am grateful for his promises and that I will be able to see Everly again. I am grateful that I was given almost 5 weeks with her, when some mothers don’t even get that. I am honored to be Everly’s mom. Her countenance glowed brighter than the summer sun, everyone said so.

Newborn who will soon after pass away lying in hospital with wires attached to her
Emily Devenney

I believe with all my heart that Everly was here for a purpose, and as her mother, it is my job to fulfill it. I believe that science has come so far in the last few years to give these babies with Congenital Heart Defects a chance at life. I have made it one of my life missions to raise awareness for this disease that takes so many of our children’s lives. Everly’s friends that are still here on earth deserve the research. We need to find a cure for these babies, to give them a chance at life. We need to find a cure so that no other parent has to feel the pain that I do.

Father holds first born while wife stands next to him holding frame of their baby daughter who passed away
Markie Ostler

My Sweet Everly Jo,

Although my arms ache for you, I will take that pain if it means you don’t have any.”

Close up of baby girl's face who soon after passed away
Markie Ostler

This story was submitted to Love What Matters by Markie Ostler, 27, of Lehi, Utah. Submit your story here, and subscribe to our best love stories here.

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