Those NICU days were by far the most difficult days of my life.
We got there pretty late on that first night. Dave and I were so lost...literally and figuratively. We were incredibly overwhelmed to say the least. I remember thinking, "Wait a minute. Didn't I JUST give birth to a baby today? Why am I climbing stairs, walking through parking garages and trudging through long hallways looking for my son? Shouldn't I be lying down with him in a hospital bed or something?!"
The doctor who came to talk with us that night was hopeful. He told us that by no means should we assume that Dylan has Down syndrome. We told him that at the other hospital we had already been told that they were "98% sure that he did have Down syndrome". The doctor said that nothing was proven yet and we should wait until the FISH test results come back. This was on a Saturday and the test would not be done until Monday. While I appreciated that this doctor was trying to be nice and all, in our hearts, Dave and I already knew what the results would be.
The next morning Dave and I had a difficult time going into the NICU to see Dylan. Instead we walked straight into the parent's room and just hugged each other. We just stood there in a hug, crying. I remember feeling so incredibly sad...and terrified and heartbroken. I felt these things for myself, for our son and for our family.
As we stood there hugging each other, we overheard someone approach a younger couple and explain to them that the priest was on his way for the service of their lost baby. I realized then that we were lucky. There we were crying over our son. Our son who was lying in a room just down the hall. Yes, so he has Down syndrome. This couple lost their baby. We did not.
The days passed and we eventually received the results from the FISH test. We were not surprised when they told us that Dylan has Down syndrome. I feel like there was at least some warning about that. A 98% warning. We were, however, surprised to find out that he failed his hearing test and he also had an AV canal defect which would require open heart surgery at 4 months of age.
Dylan. He has certainly surprised us in many ways these past few months. But in all honesty, I would say that the biggest surprise, is how much we are already in love with him.