Friday Jay and I left home around 6 am. We had told Aimee we would meet her and Donna at the hospital about 10. Our drive went relatively smoothly..once Jay got some 5 Hour Energy in Springfield. Up to that point I felt like I had a grandma following me. I wanted to drive 80 to hurry up and get there while he was dragging behind at 60ish. We drove seperatley because it looked like Baby C would still be in the hospital for a few days. Jay was going to leave on Sunday and I was going to stay with Baby.
Around 9 am I got a call from Aimee. She told me that Baby C was still having trouble sucking and swallowing. He was being taken to for a swallow test that morning. The hospital didn't expect to find anything. We needed to wait until 10:30 am to get to the hospital. That worked out great for us. By the time we found the hospital, parked in the parking garage, lost the checkbook then found it, lost my parking garage ticket then found it, gathered up the diaper bag and video camera, walked into the hospital and found out we were in the wrong spot, walked across that hospital to the childrens hospital, found the second floor waiting room and then found the bathroom it was right at 10:30 am. A few minutes later Aimee and Donna showed up and we started the process of checking in so we could meet Baby C. The security in the hospital was extremely tight, which we can appreciate. Donna kept having to say that we were the adoptive parents she had told them about that morning. It took awhile to keep us all signed in and then admitted into the NICU.
On the way into the room Donna asked is she could take pictures when we met Baby C for the first time. We were fine with that because we knew we would be too preoccupied for pictures. We walked into Baby C's room and he was so tiny laying in his isolete alone. His nurse came in right behind us and she did not look pleased. She told Donna she needed to speak with her outside. While Donna was gone Jay and I just looked at Baby C. I think we both wanted to pick him up but there were so many wires and things we didn't know how. We just stared at him until Donna came back. That's when things started to go wrong...
This is also where my memory starts to get fuzzy. Donna came back and said we were going to have a consult with the doctors and they were going to tell us some stuff. She needed us to know that it was ok for us to say no to this situation. Looking back I realized she never started taking pictures. It was such a confusing 10 minutes or so...Donna was saying stuff but yet not saying anything...I'm sure she had the feeling that something was wrong, but didn't know what and didn't want to worry us until we talked to the doctor. I think Aimee clued in that something was wrong because she told us that after talking to the doctors we could spend more time with Baby C before we made a decision. I remember asking what we needed to do about the appointment with the attorney if we weren't sure. They told us we could postpone it.
At that point I started having a weird feeling...there were all sorts of warning bells going off in my head, I was sick and I was dizzy. The nurse finally helped us get him out of the crib and I held him for awhile. It was like my brain was just screaming and I couldn't think or feel anything at that moment. I couldn't allow myself to. I knew something was wrong. I only held him for a couple of minutes and then I passed him to Jay. He held him for longer than I did. All of a sudden a social worker and the doctor appeared in the room. They were ready for the consult. The warning bells screamed louder when I realized the doctor showed up within minutes of being paged. When does that happen in a medical situation?
We went to a small conference room - us, Aimee and Donna, hospital social worker, nurse, resident and doctor. A second doctor came in while we were in the middle of the consult. The doctor started telling us everything that did not seem right about Baby C. Each thing individually wasn't bad, but when you put then together things did not look good. What was the most frustrating thing was that they did not have a firm diagnosis, but they were confident something was not right. But without a name for the problem we didn't know the outlook or the treatment. I finally asked about Cerebal Palsy and the doctor gave me the impression she thought that was a strong possibility. I think that is when it sunk in for Jay that we probably weren't bringing him home. I started to cry. He put his hand on my back.
When the doctor was done they left us in the room. Aimee and Donna left us for a few mintues and we talked a little but mostly we sat there numbly and I cried. Aimee and Donna came back and they were very upset also. The hospital had never indicated to Donna they thought his situation was that severe. She had been there at 7 that morning and no one said anything to her about any of this. She felt horrible because she would've never brought us to the hospital if she knew it was that severe. Donna explained some of our options...we could spend some time with him and then make a decision, we could proceed and then "give him back" before finalization if he didn't improve, we could leave for awhile and digest the information, we could leave with or without seeing him again...we decided to leave the hospital without seeing him again. Aimee took us out a different way so we didn't have to pass his room. We walked back across the hospital, paid for our parking and then found our cars in the garage and drove away. We had been at the hospital for exactly two hours. We walked into the hospital so full of joy and left completely devestated.
Since we had the truck and the car we decided we really didn't need to drive home. We both needed to sit and we needed to make some phone calls. We decided to get outside of the city and find a hotel. We spent the rest of the afternoon/evening alternating from talking to family and staring at the walls. After getting away from the situation I was concerned - did we leave him too soon? should we go back and spend some time with him? We kept having to remind each other that the mood in the room was very somber. They knew something was wrong with him. Since we didn't know any better we needed to trust them. They were the ones who have witnessed babies in the NICU. Finally around 4 pm I called and let them know we were going to have to say no. As much as it hurt we knew it was best. The quicker we let them know the quicker they could start searching for another family better prepared to care for Baby C.
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