Friday (two days after my appointment with Dr. Huhta) found me at Fetal Clinic at Wolfson's. Fetal Clinic is where I was to go in and tour the NICU, PICU and meet the surgeons who will be performing the HLHS series of surgeries. I got to the hospital at 8 am and was scanned by an ultrasound tech. Dr. Lacey isn't in on Fridays so I had to wait until Monday for her to call me with the results of the scan. After the scan Dr. Ettedgui came in to speak to me. He is the doctor from the cath lab that will be performing the atrial septostomy. I took lots of notes and when we were done I realized I had three pages of negativity.

"The collective experience suggests the outcome is dismal"

"We don't want pain and discomfort for your baby if the procedures will prove to be fruitless"

"Babies will declare themselves non-survivors and that's when we administer comfort measures only"

"IF baby is stable for a few hours then the atrial septostomy is not unrealistic"

"Odds are stacked against you and your baby"

"There are all sorts of potential for bad outcomes"

"You have a very very high risk baby"

There was more. It was painful to sit through. Not because he was talking about the difficulties Baby Brother would have but because I knew from two days ago that there are people out there who want to be optimistic about our son's options and his chances for survival. To have to listen to someone write your son off is just emotionally painful. I asked him about the procedure itself and what to expect from that and he explained how they do the septostomy and again, followed it up with all the danger and dismal outcomes. Jason actually asked me if I only wrote down the negative things this guy was saying and I laughed and said "No, I wrote down EVERYTHING he said". It was just bad news to more bad news. After that Dr. Kreiger came in to speak with me.

Dr. Kreiger is from PedsCare. Don't know what that is? Join the club! I didn't know either. Then she explained. PedsCare oversees the palliative care option. She is basically the "do nothing" overseer. So she took me to her office and gave me all sorts of information on comfort care measures. Even a birthplan that was all typed out with boxes to check for what we would want to do if this or that happened. I sat there almost in shock that I was meeting with her. Jason and I have been very adamant in our desire to do something and that doing nothing was not an option for us. So I sat, smiled and waited for her to finish. Once she was done I thanked her for her time and left. I went back to the Cardiology office and they called the Chaplain. The hospital chaplain does all the hospital tours. I guess they want you to be comfortable with him in case you need him.

Chaplain Fred came in and took me on the tour. He showed me the NICU and the PICU and tried to answer questions. He is obviously very loved at the hospital as everyone we passed either smiled very warmly or they said hello or they filled him in on whatever was going on. He seemed to know everyone and everyone knew him and it was enjoyable watching him in his element. Of all the people I met that day he was the most positive and sincere. He introduced me to another mother whose baby is a cardiac patient. She said her baby was diagnosed after delivery and she was grateful she didn't have to spend her pregnancy worried about him and what was going to happen. I can totally see her point. BUT if I didn't know ahead of time Baby Brother would surely die. So I guess it's really just preference. She was nice and praised the doctors at Wolfson's but that's probably because she didn't have to deal with them ahead of time! Sorry, I'm sure they are fantastic doctors. They just aren't prepared for our baby and what he wants to throw at them. So we were done there and Chaplain Fred told me I was free to go. I was confused as I hadn't met the surgeons yet so he took me back to the cardiology office to see what was going on.

Back in the cardiology office the secretary said I was free to go and I asked her about meeting the surgeons. The whole point of fetal clinic for me was to meet these guys, ask them my questions and try to see where they stand with things. The secretary asked the head tech if she knew why my meeting with the surgeons was cancelled and she said "oh yes". She said Dr. Lacey and the surgeons felt it would be better if they met with me after baby had the atrial septostomy and was stabilized. They felt the type of procedure may change after that so it's best not to confuse me with telling me one thing and then having to come back and tell me something different later on. I seriously could not believe what I was hearing. Knowing I wouldn't get anything else from these two, since they aren't doctors, I just smiled and left. As soon as I was in the parking garage I called Jason and I was ticked!

I said "Even though they didn't use these words what they basically just said to me was 'we don't think your Baby Brother is going to live past the cath lab so we aren't going to waste our time meeting with you'." Jason agreed with me. We were both livid. I don't care if the procedure may change. At least give me 2 minutes of your time to meet you before I consent to you cutting my baby's chest open and doing surgery on his heart! Is that too much to ask??

Up until this point Jason and I had been talking about delivering in St. Petersburg and what that means for our family. It isn't a decision we can take lightly. Needless to say this experience was definitely going in the cons list for Wolfson's. Here it is 10 days later and I am still upset by it!

Then I started getting phone calls from 727 area code numbers. All Children's Hospital has already made me appointments with a delivering doctor and to tour the facility.