When we got to St. Joseph's, we found our little boy and didn't leave his side. The mood around Freddie was extremely positive. We kept hearing things like "it'll be a long, tough road but he'll make it - and so will you" and "Take pictures every day because when you take him home you'll be amazed at where this little man started".
We were overwhelmed and worried but felt nothing but optimism.
Freddie was extremely active when we were with him. He was punching and kicking non-stop - movements I recognized. Movements that I should have been feeling...not seeing. He had these huge feet and extra long skinny fingers.
The nurses were incredibly supportive. The staff took us into a parent room and told us it was ours for the night. We sat in there trying to gain some footing as to what the next four months of our lives would be like.
We sat on the bed in complete and utter exhaustion. We had someone from the March of Dimes come talk to us and left us with even more hope about how great our little man was and how we would fight this battle until we took home our baby boy.
At around 11pm, my parents walked through the door. We took them back to meet little Freddie, at about 1am it was decided that there was no way I was going to get any sleep in that room and it was best just to drive the 40 minutes home.
The next morning, we woke up tried to take care of a little business like making sure my work projects were handed off, that little Freddie was listed on our insurance, and that Fred was covered with school and work. Fred's mom called to say they were leaving soon and would be there the following afternoon.
We packed up some snacks, clothes, and journals to head right back out to the hospital.
We took all of this in stride because again, there was this optimism surrounding him from us, his doctors, and his nurses.
We met with a social worker as well. We were told that we may qualify for the Ronald McDonald House and be able to spend some time there instead of commuting the 40 minutes each way - every day. Our social worker was nice, but cold. She was very matter-of-fact, to the point, and lacked any degree of compassion. When we first met her, she approached us in a way that was like "well? what do you need me for?" to which our answer would have been "um. we have no idea. We've never done this before - what do we need to be doing?"
Her gold star moment was that she was able to get us a room at the extended stay hotel (directly behind the hospital) for a week from a private donor. After the week expired, she would see about renewing it or look into the Ronald McDonald House. We would have to spend the night at home again but then we would have the room starting the next day. This was a huge relief as driving back and forth to our house was going to get expensive and time consuming. Not to mention that if something went wrong during a time we weren't there, it would take us at least 40 minutes to get to the hospital.
We sat next to him pretty much the rest of the day - taking turns only to rotate the 2 allowed back there. We left the hospital only to eat dinner and then to finally head home at the end of the night.