The Beginning

Eighteen weeks gestation is when we found that our journey was not the one anticipated. At twenty four weeks gestation, Matt's congenital heart defect was confirmed and two team members joined our team: my high risk OB and Matt's pediatric cardiologist.

While it was anticipated that Matt would go from birth to heart surgery, he was strong enough to delay his surgery for four months. After a three week stay in NICU, Matt came home on oxygen with orders from his cardiologist: my child, who would not nurse, had to be fed as close to 100% breast milk as possible (I became the family cow - hooked up to the pump on a regular basis!) and he could not get sick at all (or he could die).

We had planned to place Matt in a home daycare center near my office. Obviously, we had to quickly make a new plan. After much discussion, we decided that my husband would become our stay at home parent. For a man who had never held a baby for longer than five minutes, he took to his new role like a champ! As the days went by, it became clear that Matt's path was going to be more challenging than your typical child's.

Matt's surgery was more complicated than anticipated and his heart failed hours after his first surgery; necessitating a second surgery. During the eleven days Matt recovered, he had seizures. The complications lead to another member joining our team: his pediatric neurologist who ultimately determined that Matt had two episodes of oxygen deprivations: around birth and in connection with his heart surgery.

In light of this revelation, it is not surprising that Matt has delays and challenges. What is surprising is how much he can do.

Thus we began our journey with Matt. A journey that continues to this day.