My husband, Nate, and I found out in late September 2018 that we were pregnant for the third time, after welcoming Benjamin in 2015 and Amelia in 2017. This time around felt very different from the start. I was sick all the time and began feeling the normal pregnancy symptoms much earlier than expected. Much to our surprise, at our first sonogram, we found out that we were blessed with twins.
We enjoyed the shock and excitement of this news until the 18 week scan when we were told that there was a problem with the heart of “Baby A”. After visiting a Pediatric Cardiologist, we were given the devastating diagnosis of Hypoplastic Left Heart Syndrome, a congenital heart defect in which the left side of the heart does not form correctly. We were suddenly faced with several very difficult decisions. Would we put our newborn through a very risky and invasive surgery, or welcome him into the world and let him pass away without medical intervention? If the first surgery was a success, he would require at least two more to complete the reformation of the heart in order to allow the right side to compensate for the missing left side. And even if he made it through all three procedures, he would likely need a heart transplant in the future.
The only thing that felt right to us was to move forward seeking the treatment that would give him the best chance of life. Our care was transferred to Strong Memorial Hospital in Rochester because it is the only hospital in our area that would perform the surgery. We were also very lucky to be connected to doctors, nurse practitioners, and social workers that provided us with resources and support through every step of the process.
Upon finding out that both babies were boys, we settled on the names “Jonathan” and “Nicholas.” Around this time, our oldest son, Benjamin, was learning about St. Nicholas in school and kept referring to his brother as “St. Nicholas.” As soon as we found out about Baby A’s heart condition, we knew that “Nicholas” was the right name for him. We extended our prayers to St. Nicholas, the patron saint of children, in hopes that he would come through with a miracle for our precious boy.
Over the following months, the pregnancy continued with additional complications, insomnia, and countless doctors appointments. I was seeing my regular OB and two specialists, sometimes all in the same week. We remained in constant contact with Strong, touring the NICU and PICU and consulting with the cardiology team, trying to piece together what this journey would look like for both of our boys and how we would be able to balance our lives and other children between Buffalo and Rochester for an undetermined amount of time.
At 31 weeks, our final hopes were shattered when we were told that Nicholas had developed Hydrops. Since his heart was already failing inside of me, he was no longer a candidate for surgery. We had to begin imagining a life without our Nicholas. He would not be coming home with us and we would never get the opportunity to watch him grow up alongside his twin and other siblings. We had to face the impossible reality that we would be forced to live the rest of our lives in grief for the part of our heart that would always be missing.
At 32 weeks, I developed Pre-eclampsia and was in and out of the hospital until the doctors recommended that I stay in Rochester until the delivery. Because of Nicholas’s dire prognosis, it was now necessary to focus on what was best for Jonathan. Our best hope was that Nicholas would be born alive and we would be able to hold him for a few precious minutes before he crossed over from this world to the next.
At 34 weeks, On Thursday, April 25th, 2019, Nicholas was born alive at 4:35pm. He was immediately placed in his Daddy’s arms and held up close to my face on the operating table. I kissed his sweet lips over and over again as I tried to memorize every feature of his perfect face, every curl of his wispy blond hair, and the precious sound of his weakened cry. I whispered sweet words to him, trying to fit in a lifetime’s worth of “I love yous.” I thanked him for choosing me to be his Mommy and promised that his beautiful life would never be forgotten.
Jonathan was brought into the world minutes later and immediately cared for by the NICU team. Eventually, he was brought to us and held close to his brother for the first and only time on this side of heaven.
Nicholas passed away in our arms after thirty minutes of life. He was Baptized and held by his siblings, grandparents, and aunts and uncles. We were given the opportunity to take the only complete family pictures we would ever have.
After a month in the NICU at Strong, we brought Jonathan home and began the difficult balancing act of mourning our angel and celebrating our precious newborn. Jonathan is the happiest boy with the sweetest temperament and holding him brings peace to my broken heart. It is difficult to watch him achieve each milestone, knowing that his brother should be walking alongside him, but we know that Nicholas is a part of all of us, and especially his twin. Inspired by our oldest son, we have decided to celebrate our angel each December 6th, on St. Nicholas Day, in the hopes that Jonathan’s birthday can be a special celebration of his own perfect life.
I look to Nicholas to guide my life and help me move forward in my grief. He is a constant presence in our house and his older brother and sister talk about him and know he will be their special Guardian Angel in all that they do and accomplish in their lives. I search for Nicholas everywhere and he sends me butterflies and songs on the radio to let me know he’s with me