Friday was a big day

We've been trying to keep everyone updated on Max, but I feel like we aren't doing such a good job. I decided to create a blog to keep everyone in the loop while life is a little crazy.

We ended up meeting with a cardiologist and a surgeon at Children's Hospital on friday. A friend of mine has a connection and was able to get us an appointment with a world renowned pediatric surgeon the following day. We felt pretty VIP! We also have an appointment with a pediatric cardiologist this coming Wednesday at Rocky Mountain Pediatric Cardiology. The cardiologist at Rocky Mountain Pediatric Cardiology is the cardiologist I met while Max was still in the NICU. He was the person who informed me that Max has 5 heart defects. His suggested strategy was to do 2 procedures on Max. The first at about 4 weeks of age and would be a coil through his leg in his heart to repair the most pressing heart defect. He felt that this procedure would buy us time until Max could gain weight for the big open heart surgery. He wanted to do the open heart surgery at around 6 months of age.

The cardiologist and surgeon that we met with on friday do not feel like this is the best plan. They feel like adding a coil in Max was not a good idea. Apparently there is a risk of the coil coming loose and another surgery being necessary to "fish out" the coil. They also feel like the other defects are too serious to prolong until 6 months of age. They want to get Max to 6 weeks old and do 1 major open heart surgery to repair everything at once.

Steve and I are still planning on meeting with the cardiologist from Rocky Mountain Pediatric Cardiology on Wednesday, but are 99.9% sure that we will have the surgery done at Children's. We feel like the hospital and team are the right choice.

Right now we are working on beefing Max up! He is eating like a champ, but his little heart has to work so hard to eat that he is burning more calories than he otherwise would be. I am just breastfeeding right now. His birth weight was 6 lbs. 2 oz. and on friday he was 5 lbs. 12.5 oz. If he is not back to his birth weight by next friday, we will start fortifying my breast milk. We will have appointments every week at Children's with a nutritionist and the cardiologist. It sounds like they will do an ultrasound of the heart every week to ensure that we can wait until he is 6 weeks old.

In addition to meeting with the cardiologist and nutritionist, we will begin occupational therapy and physical therapy in the next 2 weeks. Max has great muscle tone already, but we will work with them to improve his tone.

It all sounds scary, but he really is doing well despite his heart issues. He is so sweet and is such a little trooper. Maya absolutely adores him. She loves to hold him and give him kisses! She is adjusting as well as we could expect. She has her moments, but she's 3 so she would have her moments anyway.

We really appreciate all of the phone calls, emails, prayers, positive thoughts, meals, playdates, etc...

I will update later in the week after we have our next cardiology appointment.