This past weekend was tough. I’ve told my family and close friends. They are caring and want to be there for me. There is just nothing they can do. I avoid all phone calls. I am not interested in visitors. I spent most of my weekend wrapped in a blanket with a box of tissues at my side.

This week I am dealing with August’s upcoming cochlear implant surgery. It is scheduled in February. Along with it are about a dozen other appointments before and after the surgery we have to make. These are are long appointments at main campus. These do not include any additional appointments I’m going to need for myself and my daughter.

My husband and I work full time. We have to work. We cannot afford to not work. I don’t know how we are going to manage all of this. I am so scared. This is all too much to handle.

I am constantly told that I’m so strong. That if anyone can get through this…I can. I’m tired of having to be strong. I’ve been through my share of tough times. Things were supposed to calm down. That is not the case.

How are we going to manage this financially? How are we going to manage this emotionally?

It has been 2 days since we found out that there is something seriously wrong with our baby daughter. I’m fighting every day to keep going for the sake of my boys. My husband is truly my rock. I could not do any of this without his support.

It is difficult to concentrate at work. It is difficult to hold back tears throughout the day. By the evening, I’m crying because I just cannot hold back any longer. I cannot explain to my 12 year old son what is going on. He has such high anxiety. I cannot add this stress to him.

I constantly Google our daughter’s condition. I begin second guessing myself. Was it pulmonary atresia or agnesis? Is it treatology of fallot with pulmonary atresia? Why didn’t I write this down? It looks like our daughter has what Jimmy Kimmel’s son was born with. I’m not sure if that gives me hope or more despair.

Want to ruin your day? Look at pictures of newborn children who have just had open heart surgery. This is not going to be easy. We have 4 more months to worry.

To top off the stress of this week, our youngest son now has a scheduled surgery date for his cochlear implants. It is scheduled for February 13th. This outpatient surgery will be his 6th surgery since he was born. The cochlear implant surgery will lead to a long road of recovery and therapy.

It is one thing after another. I’m trying to stay strong, stay focused, and stay calm.

My name is Jillian. I’ve been married for 4 years and have 2 children and one more on the way. I’ve created this blog to document our experiences as a family.

My youngest son was born with several birth defects. We worried all pregnancy about his diagnosis and what our life would be like when he was born. He is now three years old and has had several surgeries and lives with several issues. There was no one to turn to and no one to learn from because his condition was so rare. I wish there was some blog out there that I could have could have followed.

I am also interested in trying to explain what our family is going through and how we are dealing with things. It will be therapeutic.

Today, we received some not so great news about our unborn daughter. She has pulmonary atresia with VSD. We are saddened, scared, and angry.

My goal is to document our journey with our daughter as well as explain everything we have gone through in the past three years with our son. If I put it into words, it is real. If I put it into words, I can try to make sense of it all. If only for myself.