When my husband and I decided to grow our family in 2015, we had no idea the roadblocks that would be ahead. Shortly into our journey, after an early miscarriage at 10 weeks, we learned I had Premature Ovarian Failure and would never be able to conceive naturally. We spent several years grieving that loss and searching for an egg donor.
In 2019, after many setbacks, I finally became pregnant with our first rainbow baby via egg donor and IVF. It was a perfect pregnancy. I had waited so long to be pregnant, and I absolutely loved every moment. Though I was exhausted, I never experienced morning sickness or many of the other discomforts of pregnancy. As I got closer and closer to my due date people would say things like, “I bet you are ready for him to be born!” I would smile, but I didn’t feel that way at all. I loved being pregnant, and was in no rush for it to end.
Throughout my pregnancy, my baby never moved much. Since it was the first time I had been far along enough to feel movement, I wasn’t concerned. Doctors explained that, because I had an anterior placenta, I would likely not feel much movement at all until he was born. I believed them, and had no reason not to. At our 20-week scan, we saw a healthy, active baby, and at all checkups after that, my measurements were fine.
At my 36-week scan, they did another ultrasound and discovered that he was now severely IUGR. We went into MFM immediately for tests and were told there was nothing to worry about. They would begin monitoring more closely, but we had no reason to be concerned. Some babies are just small, they explained calmly.
Four days later, on December 10, 2019, I went in for my first NST and was immediately sent to the hospital with high blood pressure. I was reassured that they were only checking me in so they could take a closer look, and that there was still nothing to worry about. Almost immediately after being admitted, that changed. Due to my high blood pressure and non-reassuring fetal heart tones, I was sent for an emergency C-section.
When Reed was born, there was not a sound in the room. I was so terrified that this didn’t even register to me as odd at the time. I kept asking, “Is he okay?” and believed no one was answering because they couldn’t hear me. Once they got him breathing, they brought him over to my husband and I and I saw my perfect baby for the first time. He had a wild head of dark hair and his big feet were curled up in front of him. He was beautiful.
After they let us see him and say hello to him, they took him straight to the NICU. We still were not sure what was going on, and though we knew he was sick, we didn’t realize how severe it was. Over the next 24 hours, we slowly learned that he had suffered from oxygen deprivation, likely chronic as a result of placental insufficiency and preeclampsia, and was now diagnosed with Hypoxic Ischemic Encephalopathy. His brain was severely injured. Doctors kept telling us, “We are very concerned for your son,” but it took days for us to realize the extent of what that meant.
Eventually, after many tests and treatments, a kind doctor sat us down and explained that, while they could keep Reed alive, they could never heal the injury in his brain. He had no reflexes and would likely never be conscious. He would never be independent or be able to build relationships with people. We made the impossible decision to pursue comfort care, which meant we got to love him and hold him until he passed away as a result of his injury.
Once that decision was made, our time with Reed became richer and fuller. We knew now how precious and limited every second was, and we spent those seconds carefully holding him, bathing him, singing to him and simply gazing at him. Our wonderful nurses helped us capture footprints, clips of hair, and guided us through making the only memories we would ever have with him. It was hard and heavy, and it was light and beautiful. Here he was, this perfect little person we had waited so long for. Even though we knew we would not bring him home, it was easy to smile and feel whole when we were with him. Nothing else existed.
The day Reed died, we had a beautiful morning together. We cuddled in his quiet room. His father held him while I read him a special book we had chosen just for him and told him the story of our family. We told him how much we loved him, and we told him how to let us know when he was ready to say goodbye. We thought we might have a few days with him still, but only two hours after that, he quietly stopped breathing. He was gone. We were broken.
We spent the next year heavily grieving and slowly healing amidst an unrecognizable world changed by Covid-19. We learned how to include him in our family. We shared him with anyone we could. We found companionship in other loss parents, and developed friendships that helped heal our broken hearts. We continued to love him and tenderly take care of his memory. We dreamed of a sibling, but were terrified, as we knew this outcome could likely strike again.
Still, the yearning for a baby we could hold, one we could watch grow, was stronger than our fears. In March of 2021, I became pregnant again. This time, I knew to cherish every second of my pregnancy, as it could end at any moment. Though it was still a relatively easy (physically) pregnancy, every moment was so terrifying. I was afraid of losing the baby. I was afraid of Reed being forgotten or feeling replaced. I was afraid of everything, and could not picture a future where we got to bring a healthy baby home. We monitored this pregnancy extremely closely, and fortunately felt movement early and regularly, which helped ease my fears on the hardest days.
Toward the end of my 30th week, I was admitted to the hospital with preeclampsia…again. Though I was scared to be experiencing the same complication that had resulted in Reed’s death, I was also relieved. We caught it early this time, and the baby was now being monitored 24 hours a day. This time, we would know if something went wrong before it could cause too much harm.
However, my preeclampsia rapidly became unmanageable, and on September 21, 2021, the doctors told me I needed to deliver for my own safety. I was still only 31 weeks along, and I believed a delivery this early would surely mean he would not survive. I sobbed as they prepped me for surgery, and sobbed even harder upon learning that I could not be awake this time, due to my bloodwork. They reassured me that this time was different, that we had every reason to believe he would be okay, but it didn’t feel like that to me.
Early the next morning, on September 22, 2021, our rainbow baby Sage was born. His father was there, along with the nurse who took such good care of me in the first frightening hours after Reed’s birth. Sage was small, but healthy. He was here, finally.
Hours later, once I awoke from anesthesia, I was wheeled down to the NICU while still on magnesium. I was so acutely aware of how valuable every second was, and I was terrified of missing a moment with Sage, because I was still convinced we would not be bringing him home. It took many days, and many reassurances from doctors and nurses, for me to finally understand that Sage was not going to die in our arms. We spent 28 days in the NICU with him, in a room directly across from the one Reed had spent his whole life in. We know his brother helped him arrive safely.
We just celebrated Sage’s first birthday, and we have grown so much as a family in this first year. We tell Sage about his big brother Reed daily. Our grief over losing Reed still aches deeply, but our joy is also richer and fuller now because we have both our boys. It is a complicated life, but it is full. We love both of our rainbow babies so much.
Read more about Hypoxic Ischemic Encephalopathy here.
Photos taken by Tiffani Marie Photography.
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