Uncertainty, Fear & Denial

Our 4 days in the hospital was anything but normal. While still in the hospital we were given the name and phone number of a Geneticist at Hackensack University Medical Center. We were told to contact him and set up an appointment as soon as possible to start genetic testing to find out if there was a metabolic or genetic reason why this happened to her and if there was anything else wrong with her. We were also put in touch with Dr. Florakis's office at Columbia. They wanted us to be discharged early from the hospital in order to bring her to be seen by him. I spent most of the last 2 days in the hospital on the phone with doctors instead of focusing on bonding with my baby. And being discharged early to go straight to NYC for a consult was not my idea of how to welcome a new baby into our lives. Your first day home with a baby is supposed to be filled with love and excitement and I was very sad that it didn't appear as though that was going to happen for us. There was even talk about having medical transport bring us from Ridgewood to NYC since I was still recovering from the C-section.



This is not what was supposed to happen, this is not how I envisioned these first days with my baby being, why was this happening to us? Why?....That was a question that we would never be able to get an answer to. I went through the emotions of "was this my fault", "did I do something wrong", "could this have been prevented?"...that answer was easier to say than to accept....No, this was not my fault, No I didn't do anything wrong, and No this couldn't have been prevented. But that didn't make me feel any better. I was scared to death. What was her future going to be like? How was her condition going to affect our family, would the boys understand that she's not going to be able to do the things that they can...this could not be happening to us, these things only happen to other people. I felt like I was in a bad dream and couldn't wake up.

We eventually arranged for Emily to be seen by the Geneticist and Dr. Florakis a few days after we were to be discharged, allowing us more time to get settled as a family and prepare ourselves for what was lying ahead of us. On the day we were to be discharged, the hospital needed to take some blood and urine samples to get some initial genetic testing underway, except this meant she needed a catheter. The nurse said we could leave as soon as they got enough urine to supply the lab with what they needed to do multiple tests. We sat and waited for hours for that little tube to fill up, except the nurse didn't realize that the catheter wasn't in place correctly and we lost everything except a small amount in the bottom. We were really frustrated at that point because it was all for nothing. But we were going home...

We had left the protective walls of the hospital, now exposed to all the fear and uncertainty of the long dark road ahead of us instead of planning the bright and sunny future for our baby girl. How do you handle something of this magnitude? We didn't know even where to start.