A day at Primary Children’s Medical Center

I feel him kick, I feel him move and my thoughts go back to where I was standing a few days ago. He feels so normal but I know he is different, special. You could say. Another echo done and the same prognosis spoken, though this cardiologist was more upbeat, he said he believed it was Coa but not nearly as bad as other cases he has seen. Hubby felt better because the first echo he saw nothing wrong no narrowing, but this time he saw it. It wasn’t much but it was there.  The Doc seemed hopeful that maybe it wasn’t as bad as we all thought, that there was a chance, one I’ll be honest I did not want to hear that he may not need surgery. I’m assuming that he does I don’t want to grasp on to possible false hope because I need to be strong for my baby I need to be prepared for him to need heart surgery.  I will try to ignore is goodbye “I hope I don’t see you again!” Me to buddy me to.

 

After he left we talked with a genetic counselor. As is the norm at the U they are conducting a genetic study and CHD. They want to see if there is a genetic correlation to heart defects. Having read time and again the lack of research on CHD and knowing what and how the research is done. Having done it myself with my stint of working up at the U’s research park I was ready to sign up before she was done explaining everything. So needless to say we are now going to be a part of a fully confidential study for CHD. I hope they find some good information anything to help heart babies.

After she left one of the very kind social workers came in and gave us a tour of the cardiac floor. The first place she took us was of course the hardest places to be in the cardiac ICU.  We passed tiny little babies covered in tubes that my heart went out to those miniature fighters. My hand continually found my belly as little A kicked and moved. I knew he could very well look and be in this place. It was so reassuring to see that each baby was assigned his or her own nurse and that the nurse had a desk and chair in front of that baby so he or she could watch that little one at all times.  So even when I am not there he will be in good hands.

The social worker also discussed that at some point he would be moved to a different level where his care will be switched to preparing him and me for his arrival home. In the first ICU parents cannot sleep there over night, but once moved to the other there is a bed provided for a parent. Hubby already said that once he’s moved there it would probably be best that I spent a night or two there while he stayed home with Connor so one of us would be fully prepared for his arrival home and to get an idea of his sleeping pattern and what not. I left the place feeling a lot better. The people there are so nice and the do so much to prepare a parent for what is to come. I’ve always been a supporter of Primary Children’s Medical Center but now?  They are truly an amazing place with amazing people.