“It was February 25th, just a few days before my birthday. I sat pregnant, shaking and quietly crying in the waiting room of a doctor’s office. We had just gotten news, bad news, that our baby girl was missing the left ventricle in her heart. At the time I didn’t know what this meant. I sat in shock. I turned to my husband and told him it was clear what her middle name should be – Hope. We had been going back and forth on several middle names over the past few months; Hope had been one of our options. Now it was settled, her name was Jaylee Hope.
Finally the doctor called us back into his office to explain what he had seen on the ultrasound. Jaylee was missing the left ventricle in her heart. She had a congenital heart defect called Hypoplastic Left Heart Syndrome, a condition that is fatal without intensive surgical intervention. The room spun as the doctor gave us details and quickly set up appointments with several specialists. He told us we needed to make some decisions. I didn’t know what this meant at the time.
Over the next week we met with several doctors who all wanted to talk to us about our options. I learned that we basically had 3 choices: Terminate the pregnancy, deliver her but only use comfort care, or we could fight for her life. We chose option 3. We were ready to fight with every fiber of our being.
I delivered Jaylee at 39 weeks pregnant. She was born via C-section and needed immediate intervention. I was unable to hold her or even see her once they pulled her out. The team put in a breathing tube and took off running to perform a heart catherization. Her birth, which was supposed to be beautiful and intimate, was traumatic. I couldn’t stop shaking and vomiting. I had no idea if I would ever see my baby girl alive.
It wasn’t until a few hours later that I was able to see Jaylee, via FaceTime, as I was not allowed to leave the recovery room and she was in the Pediatric Intensive Care Unit. Finally at midnight, 12 hours after she was born, I was brought down in a wheelchair to meet her.
She was perfect.
The next few days we spent every minute we could loving on her. I would sit in her room and wait until my own nurse called me to come back to my postpartum room so she could check my vitals and give me pain medication, then I would return back to Jaylee. I don’t remember feeling a lot of pain during my recovery. I was running on adrenaline. Just willing my baby to be ok. I didn’t want to miss a second with her.
At 3 days old, she had open heart surgery. It was the first of a 3-stage surgery process. She made it through surgery and our hearts soared. Maybe everything would be ok. She spent several more weeks in the hospital recovering, working on feeding and trying to gain strength.
One day, we were finally able to take her home. Unfortunately, we only stayed home a few days before she was readmitted to the hospital. This process happened several times. We would take her home, only to see that her oxygen levels would decrease or she was not tolerating her tube feedings and we would go back to the hospital.
It was honestly wonderful but terrifying to be home. We had to administer several medications throughout the day, run her oxygen and do her tube feedings, all while constantly checking her vitals. The time at home was precious though. We were able to go on a walks, attend a family party and spend lots of time snuggling. One of my favorite memories is just watching Jaylee and her older brother taking a nap together.
We got to savor each aspect of Jaylee’s sweet personality. Even though she was going through so much medically, she was such a happy baby. She would smile and her whole face would light up. When she looked at us with her piercing eyes, it felt like she could see into our soul.
On September 5th, we knew we needed to go back to the hospital. I felt like something was different this time. I didn’t know when we would get to come back home, but I had a feeling it would be a while. I took a few pictures of Jaylee in her nursery and we rushed back to the Emergency Room.
We spent the next several weeks back in the Pediatric ICU. It was determined that Jaylee was no longer a candidate for the next open-heart surgery. Her heart was too sick, so she was listed for a heart transplant. Once she was listed, I felt so certain that she would receive a donor heart. She was listed at the highest priority as she was put on a ventilator and many IV medications. Over time, the wait for a new heart started to feel extremely long but we still remained optimistic.
Throughout this time in the hospital, we did everything we could do love on our sweet girl. We were always with her, singing to her, reading to her, praying over her. Her older brother, who was 2 at the time, would come visit his sissy a couple times a day. We once again became accustomed to the ups and downs of hospital life. Some days the doctors would give us positive news, and other days she did not seem as stable. Then one day, her vitals became worse. I think I had become so used to seeing her sick, I didn’t realize what was happening.
That was two years ago.
It’s been 2 years since her PICU room flooded with doctors and nurses all urgently pushing medicine and doing what they could.
2 years since the team said there was not much left to do.
2 years since I begged them to just try one more dose of epinephrine.
2 years since the attending doctor told me I could go hold Jaylee – in that moment I knew her fight was ending.
2 years since I pleaded with God to save her.
2 years since they turned off the monitors and told us to hold her without all the beeping.
2 years since I asked them to check for a heartbeat one last time, and 2 years since they told me they did not hear one.
2 years since we bathed her, took her handprints and footprints and removed the wires and tubes.
2 years since I checked her mouth to see if she ever got her first teeth. I didn’t know because she has been intubated so long.
2 years since we held and kissed her and showed her the outside view from her hospital room that she never got to see.
2 years since I told her to go find her friends in Heaven and to be with Jesus until I would see her again.
2 years since I got to see her little face as I told her I loved her forever and always.
And 2 years since I had to lay her down and walk out of that hospital room with a piece of my heart missing forever.
At 4 months and 9 days old, Jaylee left our arms and entered the gates of Heaven.
It’s been 2 years… yet it often feels like it’s just been a few days. Grief doesn’t get easier, it gets different. Some days are harder than others. Some days the memories and trauma are sharper and other times it’s a dull, painful ache.
Just over a year ago, we were blessed with our third child, a precious, healthy baby boy. Our oldest child has another sibling to play with. Watching our boys together is such a precious gift. They are the best of friends. Yet, our oldest son still remembers his sister and talks about her each and every day. Watching him grieve, while dealing with my own grief, has been a painful process.
It can be easy to let grief take hold and to fall into despair. Yet looking back, Jaylee’s middle name, Hope, was not wrong. We thought we had named her Hope as in, ‘we have hope that she will be ok.’ But really, our hope has turned into the hope and promise that someday we will be with her for all of eternity in Heaven, where her heart is whole.”
This story was submitted to Love What Matters by Christiana Whallon, 29, of Torrance, California, in honor of October being Pregnancy and Infant Loss Awareness Month. Do you have a similar grief journey you’d like to share? We’d like to hear from you, for others to know they are not alone. Submit your story here, and subscribe to our best stories in our free newsletter here.
You can read more of this family’s journey on their Facebook page, Jaylee’s Journey of Hope.
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