We met with the pediatric cardiac surgeon today

I have to say that when we pulled up to Morgan Stanley Children's Hospital, things suddenly became very real for me. I could no longer act as if everything would be ok. My son is going to have open heart surgery. And while I know that the success rate is very high, there is a chance my baby could die. Yes I have known about it. I haven't been in denial. But now that we were finally at the point of actually meeting with the surgeon, it was suddenly very very real for me. As we walked in we were greeted with pictures & poems for children. I couldn't help, but look all around and take it all in. When we got into the elevator we looked up & there were stars & moons. It wasn't until we left that Rob realized the entire song for Twinkle Twinkle Little Star was printed on the walls of the hallway. So I guess it was the theme.



We made it to the 2nd floor and as we walked down the hallway of the pediatric cardiology department, I wasn't able to keep it together. I read the plaques on the walls and one after another read "heart failure", "heart transplant", etc. It really hit me that while Sean will be having his surgery at one of the best hospitals, he may very well need those teams. I broke down. I went into the bathroom & tried to will away the feelings I was feeling. I was scared. Scared for Sean. Scared for our family. Scared to finally admit that this was going to be very real for us very soon.

Before today we had a few weeks before we'd have to deal with all of this. As we walked down that hallway I realized we only have a couple of weeks before our lives are not only turned upside down by the birth of our second child, but by the amount of doctors we are going to have to see and how many tasks we're going to have to keep up with. We see a lot of doctors now, but they're usually poking at me to get to him. It's annoying, but at least I'm able to cope. After he's here, they're going to be poking at him. My poor innocent little baby will be poked at, prodded at and scared half to death.

Oh my god! He's going to be here in a couple of weeks. I'm going to have 2 kids in just a couple of weeks!!! Why didn't anyone tell me?!!

We sat in the waiting room & waited to be called into an office to meet with Dr. Bacha. On the walls were pictures of successes. All the kids looking back at me were smiling. I don't know how that made me feel. I wasn't really looking at them as successes. I was more looking at them hoping to see something that would make me feel less alone. I didn't find any pictures that helped that feeling.



Meredith kept herself occupied by ripping tissue and swinging from mommy. Daddy kept busy by taking silly pictures of my belly and playing with Meredith. He walked with her up & down the hall reading the numbers to the rooms. Meredith is getting very good at recognizing her numbers.













We went in to meet Dr. Bacha and we were very pleased to be greeted by a smiling doctor. He sat down and opened the folder he had for us and asked why we were there to see him. I told him it was because we were being proactive in finding a surgeon we both liked and trusted to care for our son. He said he wished all parents did that. That was very reassuring to us. Especially given that the pediatric cardiologist we were assigned to at Maimonides, Dr. "R" said that it wasn't necessary for us to meet with him before he was born and she had decided it was time for his surgery.

He assured us that based on the echo reports, Sean's heart condition was on the normal side of bad. Meaning that if he has to have tetralogy of fallot, it's good that he has a mild form of it and it's easily corrected. I couldn't help, but wonder if this is an indication of the rest of his abilities. Will he be high functioning? Will his physical capabilities be close to normal?

The dr said that sometimes he sees reports and recommends that the mothers deliver at Columbia in order to ensure that the babies are close by so surgery can be performed right away. Based on Sean's echos he said it's fine for me to deliver at Mainmonides with my ob and that Sean would be able to wait.

We expressed our wishes to have his surgery done when he's about 3 months old in order to avoid flu & RSV season as well as to have it done before he's really mobile. He said he likes to wait until about 6 months old. We then asked if Sean having down's affected anything. Dr. bacha had not been told by Dr. "R" that Sean had down's. I cannot tell you how annoyed by this I am. It does in fact affect Sean's cardiac care. Based on that, Dr. Bacha would like to do his surgery at 3 months old. He said that our thinking regarding cold & RSV season was right on. Sean will likely be in the ICU for 2 days and then in a regular room for about 5-7 days. This is all based on how well and how fast Sean heals, but Dr. Bacha seems to feel that based on Sean having down's this is the likely timetable. We asked about pain management and the dr said that most children do well with tylenol. He also said that most infants' bones are mostly healed by the time go home. Can you imagine? He said that the bones usually heal within 2-4 weeks. I was shocked.

Dr. Bacha assured us that he would be doing every stitch from beginning to end of his surgery and that the surgery should take between 3 & 4 hours. Sean will have all his stitches on the inside & have a band-aid on the outside. He also said his goal is to make this Sean's one & only surgery. He said that based on the reports, Sean would not need a pulmonary valve replacement and that his pulmonary artery would not narrow anymore. That made me feel sooooooo much better.

We told Dr. Bacha that we would likely be switching to another pediatric cardiologist when Sean was born because up until now we haven't been thrilled with Dr. "R". He asked who & said that the practice we'll be switching to is a good one. It made me happy that he is familiar with them and that he said they were good. He's also familiar with our pediatrician.

Dr. Bacha came recommended by another doctor who cares for our family and we couldn't be happier that we got this referral. He seems like an amazing surgeon and has a wonderful bedside manner.

We headed home & Meredith fell asleep in the car for her nap. I'm sure this will result in an early
bedtime tonight. Maybe she will get back to her normal sleeping pattern. A girl can dream right?

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As we drove down Riverside Drive we were struck by the view. Thankfully enough there's a view. Something to get lost in when we're at the hospital. The more I thought about what we're about to embark on, the more I felt like I couldn't breathe. I looked up at the sky & noticed really big puffy white clouds. Oh how I wished I could be on one of those clouds drifting off to cloud 9. I wished for one of those clouds to take me away from what is going on. Even if it's just for a little while. Just a little escape.