Here is a story that another mommy like me shared. She also has a little girl that went through they same surgery Brooklynn will have. It just touches my heart and I feel like the "mommy" in the story is me.

The Mommy sat in the waiting room of a cardiologist’s office. She had been a Mommy for less than four days. She carried a soft, delicate, pink bundle that weighed less than six pounds. The bundle, the baby, was the reason the Mommy was at the cardiologist’s office. The baby, so tiny, so delicate, so vulnerable, had a heart that hadn’t been formed properly. It was missing a valve, and it had holes where there shouldn’t be holes. The pretty pink bundle was so serene, though, you’d never know by looking that there was something so devastatingly wrong with her. That there was something so terrifying about her. It may not be obvious to those who looked at her, but that Mommy surely was terrified.

The Mommy looked around the waiting room, and thought, “I’m definitely going to become familiar with this place.” It was not a happy thought.

Finally, the family was called in, and the Mommy took the small, beautiful pink bundle in for her first cardiologist visit. Weigh in. EKG. Exam. A routine that the Mommy and the baby would endure together many, many times in the months ahead. The doctor drew pictures for the Mommy and the Daddy, so that they would know what exactly was wrong with the baby’s tiny heart.

They say that your heart is the size of your fist. The next time you are near a six pound baby, look at her fist. This was the size of the heart that the doctor was talking about to the Mommy and Daddy.

The Mommy kept trying to ask questions. She wanted to know what she had to do to help the baby be strong. The questions kept getting stuck in her throat. She tried to ask the doctor what she could do to keep that tiny, beautiful pink baby from dying. She could not get the words out and cried.

The doctor told the family that the baby would need surgery to repair her tiny heart. She would need this surgery before her first birthday. They needed to help the baby gain weight and be strong. The doctor set a surgery goal–Three months old or 10lbs, whichever came first. The doctor told the family all the symptoms of heart failure and how to watch for them. He told them that most would be evident during feeding time. One of the most strenuous activities a newborn does is eat. If the little baby was in heart failure, the family would surely see it when she was taking a bottle.

The Mommy took the baby home and tried not to cry every moment of every day. She tried not to feel afraid. She tried to sleep. She tried to give the baby her bottle, but it was so scary to the Mommy that she often let the Daddy feed the baby. The Mommy could not enjoy the warm, cuddly, bonding time of feeding a newborn, because she had to be ever vigilant. Was the baby sweating? Was the baby turning blue? Was the baby struggling to breath? The Mommy became obsessed with what the baby ate. She kept a chart to make sure the baby was taking enough calories during the day. She hated to let other people feed the baby, because what if the other person did not know what heart failure symptoms looked like? What if the baby did not take all of her bottle and missed out on precious calories? What if the baby died? What if the Mommy wasn’t a good enough Mommy to protect this beautiful, delicate, vulnerable, pink baby from those destructive holes in her heart?

The Mommy felt that she was the only one who could protect this baby. The Mommy was probably silly to think that, but what else could the Mommy do? This was her baby. Her first baby. Her tiny, delicate, fragile, vulnerable baby. No one seemed to understand this, and the Mommy felt incredibly alone.

People told the Mommy she was overprotective, some lovingly, some critically. The Mommy felt angry at that. The Mommy was just so desperate to keep that tiny, delicate, fragile, beautiful baby alive, to help her grow strong, so that one day soon, the Mommy would be able to hand that tiny, delicate, fragile beautiful baby over to a surgeon, who would cut her chest open.

The knowledge and fear of the baby’s necessary surgery never left the Mommy’s mind. The Mommy never bought clothes too big for the baby, to be stored away for next summer, next spring, next fall, because there could be no plans for “after” the baby’s surgery. There was no life to be considered “after” the baby’s surgery. When the Daddy would say, “We’ll do _______ next summer”, the Mommy would just nod along, thinking only of the surgery. The Mommy dared not to hope that far in advance.

The Mommy would say calming things to others; talk about how skilled the surgeons at the hospital were, how “routine” this surgery has become, how confident she felt in her doctor’s care. The Mommy did not always feel those calming things in her heart. The Mommy just felt scared and alone.

As the days and weeks and months past, the tiny, fragile, vulnerable, pink bundle began to grow and become strong. She mastered the art of taking her bottle. She learned to hold her head up. She smiled, and laughed, and cooed, and babbled. She made everyone fall in love with her. She helped heal the Mommy’s heart, but the Mommy could never stop worrying about the baby’s heart. No matter how happy the Mommy felt playing with the baby, no matter how big and strong the baby was becoming, the Mommy could not forget that someday soon, a surgeon was going to operate on this baby’s tiny, fragile, delicate heart.

The baby passed 10lbs. The baby passed 3 months old. She never turned blue. She only sweated a little bit. She grew strong and happy. At Christmas, when the baby was six months old, the Mommy bought her clothes that would not fit her until spring. The Mommy was finally learning to see an “after”.

The day came. The day the Mommy had feared was finally there. The Mommy felt more hope than she had ever dared to let herself feel, but there was still the hugest fear to face, the hardest challenge to overcome.

The morning of the operation, the baby was not allowed to eat. The morning was interminably long. The baby was hungry, and cried. The Mommy was afraid that if the baby died during the operation, that her last thoughts would be, “Why didn’t Mommy feed me?” This made the Mommy cry more.

The Mommy found herself in a waiting room again. This time when they called the baby’s name, it would not be for an EKG and an exam. It would be to go down to the OR.

They called the baby’s name.

The Mommy and Daddy were able to carry the beautiful, fragile, vulnerable baby to the operating room. The hall was longer than any hallway the Mommy had ever walked down. At the door to the OR, the Mommy and Daddy got to hug and kiss the beautiful baby. They told the baby they loved her. They told her they’d see her soon. They told her to be strong. They told her goodbye.

It has been two years, eight months, and 10 days since the Mommy and Daddy handed their beautiful, fragile, vulnerable baby over to strangers in white scrubs. There is nothing fragile or vulnerable about that baby anymore. There is nothing “baby” about that baby anymore. She is a strong, spunky, spirited, happy little girl. The Mommy thinks about the future of the little girl every day. The Mommy is proud of both of them, for getting past those darkest days.