“Is he breathing?” I asked the doctors with complete terror of their answers. I had just delivered my first son and unfortunately my focus was on determining if he was alive; and if so, for how long…

I don’t think my stomach has ever sunk as much as it did the second the doctor said he wasn’t able to see my baby boy's heart chambers. He was calm and cautious as he explained that it could be just that they were not able to get a good view but the room started closing in as he told me I would be going to a specialist the next day to get a better view. This appointment was a turning point in the pregnancy of my first child as well as my life…

I went in alone for my anatomy scan at twenty weeks as my then husband was working and everything had been so smooth I thought nothing of it. After the scan I went back with the doctor and he began to explain they weren’t able to see all four heart chambers clearly and he wanted me to go to a perinatologist the next day for a better look. The next day, after a much longer scan, the storm of bad news began. I was informed that my baby boy had Hypoplastic Left Heart Syndrome and a significant diaphragmatic hernia. These things aren’t common in and of themselves and even less so together. They complicated each other and I sat there as the doctor coldly explained each diagnosis along with the percentage chance of survival.

Over the next few weeks, desperate to leave no stone unturned, we went to every specialist we could for every bit of information we could get. Pediatric Cardiologist, Pediatric Cardiothoracic Surgeon, and General Pediatric Surgeon, multiple high level ultrasounds and fetal MRI. Each time a shred of hope would be thwarted as the information we had been given was confirmed. 

After three weeks of discouraging appointments and heartbreak my son was deemed to be “incompatible with life”. 

His conditions complicated each other and made him ineligible for surgeries he would need to fix each, including a lung transplant. We were told he was inoperable and unable to be an organ donor. At this point I was forced to shift my focus from planning a nursery to planning how to love my first child well in the short time I would have him with me. Immediately I became desperate to choose a name, needing to connect and know him better for every second we had. Unknowingly we chose a name that means “whole hearted” which at the time felt like a cruel joke as his heart was part of his ultimate diagnosis. 

My first son’s name is Caleb.

I spent the second half of my pregnancy avoiding new places and people, anywhere I would be asked how far along I was or what I was having. These questions that brought such joy just weeks before werenow a punch to the gut as so many around me had no idea the shift my life had just made. I spent three months teaching third graders during the day and crying at night.

I was encouraged to find support and worked with a counselor who was able to help me plan things. My husband at the time was a pilot and decided he wanted to fly us, I had a blanket made to hold him in and picked out the only outfit I would get to put him in. I was also told about Now I Lay Me Down to Sleep and agreed that having pictures would be nice.

As my due date got closer I didn’t get the excitement that many others experience. I was overcome with a combination of fear and dread. As a first time mom I had no idea what to expect in delivery to begin with. On top of that I didn’t know how long we would expect to have with Caleb. He was alive and “well” while he was in utero so while I longed to hold him I knew that this was also the beginning of the end. 

Caleb lived for forty minutes in my arms on January 22, 2018. That’s all he knew. 

I left the hospital empty handed and began to navigate life as a mom without a child…I wished I was dealing with the sleepless nights of a newborn instead of figuring out how to dry up my breastmilk while deciding on which urn to choose for Caleb. The next months were a blur of going through the motions with my mind in a fog trying to survive the next day and sometimes just the next hour. 

Later that year, after barely getting our heads above water, the rug was pulled out from under me again as I experienced a miscarriage at nine weeks pregnant. Heartbroken again I went through the days with a pit in my stomach. Shortly thereafter I held my breath again as I found out I was pregnant. The combination of emotions was overshadowed primarily by fear. I felt like I was holding my breath for nine months, hoping for the best but still terrified of the worst. 

I survived that pregnancy more mentally and emotionally drained than I thought possible. Out of fear I found myself again in a delivery room asking the doctors “Is he breathing?”…Exactly a year and a half after losing Caleb I took a deep breath for just a moment when Wesley was born, happy and healthy. Now, I was left with the need to figure out being a first time mom (of a living child) while still navigating my grief. Losing any loved one changes you. But the grief of a bereaved parent is unique in that I will always grieve the “what ifs” and wonder about what Caleb would be instead of mourning memories we had together. It is a unique pain I don’t wish to have in common with anyone. Through the years with Wesley though I have cherished the photos I have to be able to share Caleb with his brother. 

Losing my son has been the most difficult thing I have ever navigated, and will continue to be daily. It is absolutely priceless to me that I’m able to have pictures of him in the little time we had. Having beautiful images of my sweet boy that I’m able to share comfortably gives a shred of peace in unimaginable circumstances. With these pictures I’m also able to tell my living son about his big brother and let him see who we miss so deeply.

Now I Lay Me Down to Sleep, a dedicated 501(c)(3) non-profit, offers families experiencing pregnancy and infant loss with complimentary remembrance portraits, capturing precious moments with their babies. Your generous donation can help us extend this heartfelt service to more families in need. Please consider supporting us here.