At our 20-week ultrasound, we were in the smallest ultrasound room, packed with my husband, our two teen sons, our infant son Kai, and my husband's daughter visiting from college. The room was uncomfortably hot! Looking back, our ultrasound technician appeared very serious, but we were filled with joy, laughing and talking. All we wanted was to see the cute little thing, but we decided to wait until the birth to reveal the gender.

It took ten days for the test results to come back, and on my 36th birthday, an unexpected call came in. The on-call doctor at my obstetrics clinic, whom I knew well, called to tell me that our baby was reasonably certain to have Down syndrome. I had already accepted this and fully embraced it as part of my life's journey.

After the diagnosis, there were appointment after appointment. I was learning so much about this baby's body and still had no idea of its gender. The heart defects were Atrial Septal Defect (ASD) and Ventricular Septal Defect (VSD). We also saw a shadow over the aorta during an echocardiograph of our baby in the womb. They said it was hard to see things perfectly through the procedure, but the aorta was most likely fine. Although my heart knew differently, I found comfort in the words "it's most likely fine."

Around 32 weeks, the baby swallowed and we could follow the amniotic fluid to check for defects in the digestive tract. I decided in my mind that there were no more defects and carried on with everything else I had to deal with. This child would have Down syndrome and would need open-heart surgery between 3 to 5 months after birth. That was more than enough to handle. During another ultrasound, it was discovered that the baby lacked a full connection in the digestive tract. Our baby's own stomach bile wouldn't pass.

Immediately after birth, a tube would need to be placed to pull the bile out since our baby would not be able to complete digestion. That was it! I'm pretty sure I cried on the way home. Some time afterward, I was having computer issues, and while walking to my husband's home office for help, I lost it. That was my last straw. Before I could fully make it into the office, I smashed my computer onto the floor and stomped on it over and over again, screaming and crying. Remembering myself in that moment now brings tears to my eyes.

Then the day arrives. I woke up with labor pains two weeks after Kai's first birthday. I'm ready! We are going to rock this whole situation. I even prepared myself for the fact that they will rush the baby to the Boston Children's Hospital Newborn Intensive Care Unit (NICU) soon after birth. I arrive at the hospital, and I'm pretty sure I will deliver in triage.

Not long after getting into the delivery room, Kitty Cosette comes into the world! Finally, a girl 

During the labor, I remember praying through the contractions, "Please God, save this child!" She came out so beautifully. Her eyes blinking to see all around her. The most alert baby I've ever seen in all my life. She had the tiniest mouth with the most perfectly shaped red lips. She was beautiful!

I could feel my eyes shifting around, examining every inch of this perfection. She was the smartest, most alert newborn I've ever seen. I was amazed and decided she would be just fine. I only had her for 15 minutes before they whisked her away to the Children's Hospital. I was excited about all that this girl had to bring to my life.

She was placed on intravenous (IV) nutrition, and at five days old, she had her intestinal repair. The aorta was indeed narrowed and needed to be cut out and sewn together at eight days old. I think the first five days were the longest of any. After the intestinal surgery, we were now a cardiac baby! Between the two surgeries, her ammonia levels skyrocketed, and we received a midnight call that this could be deadly or cause brain damage.

Within those first few days, she was also having low blood glucose levels. We were told this could be common in newborns and would work itself out. But when the high ammonia levels hit, our endocrine doctors knew this glucose issue wasn't temporary. She has a condition called Hyperinsulinism Hyperammonemia or HIHA. While not related to Down syndrome, the Hyperinsulinism is opposite of diabetes and just as dangerous.

For one reason or another, Kitty remained in heart failure. By five weeks, she needed open-heart surgery, far sooner than her surgeon wanted. Throughout these weeks, I remained in a blur and ignorant of just what this endocrine disorder meant to her life, our lives, and the dangers it held. There was one medication that worked, but with her heart defects, it was deadly. Three times this medication nearly killed her.

I received another middle-of-the-night call that Kitty had a seizure. I was beside myself. I had been rooting for her, determined to take her home. I had then come to realize her body is far too complex. It's one battle against itself after another. I climbed into the hotel shower where we had been staying to be near her while in the hospital and sobbed. I had cried so little through it all. I stayed so optimistic and wanted to be approachable to the doctors and nurses and seemingly sane, although I felt my grip on mental health slipping away.

As I stood in that shower and cried, I prayed, 'God, if you're going to take her, please take her now. I am giving her up to you. I know she is not mine, but first yours. Please don't keep me in pain. If she's going, take her now.' That was the hardest prayer I've ever prayed. That was the saddest moment of my life. I never pictured myself in such a place with any of my children that I may no longer have them.

She shows me the beauty of the world. Through heart failure, low glucose, Down syndrome, and near death, she smiles! When she needs to be heard, she doesn't cry, she screams out! She is the fiercest little woman I've ever met. She's made the praying pray, and the non-praying pray, and the no-longer-praying pray. God moved mountains through her. The human heart can be the biggest mountain God ever has to move.