Post Op Appt Update

Tired Baby.
It was a very long day. Were waiting to meet with the surgeon. I think Dad almost took a nap too.

Almost done.

Cute Baby.

I love her feet.

So I think all heart moms would agree you leave post-op day more frustrated and with more questions then when the day began. Raygen had blood work, x ray, and an ekg, which were all good I think because I didn't hear otherwise. We met with a nurse practitioner, the surgeon, and the anesthesia people. Which to be frank was all a waste of time beside meeting with Dr. Cohen. No one has any answers and even the people we met with are not the people that will be helping with surgery or be seeing Raygen. So all in all I was mostly just irritated. I am most concern about how they are going to place Raygen on the ventilator. Are they going to use the trach? Take the trach out? Put the trach back in? No one knows. The answer we got was that they would try a couple things to see what works best, that does not make a parent feel good knowing that their going to "try" a couple things. Pretty much they are going in blind and hopefully they will not make my baby feel too much pain before they figure out their plan. Dr Cohen said Raygen was a "big kid" which is good. I'm glad she has lots of reserve. He said from a heart point of view she is good and her cath looked perfect. Raygen is a great candidate for the glenn. So the major issue is airway. No one knows how the trach is going to affect the surgery or the healing process after. This is the most stressful part for me. Not only do we have the stress about Raygen undergoing major open heart surgery but not having a plan for her airway issues drives me in sane. If anyone knows me I'm a planner, a list maker, and a note taker and so this is beyond stressful. They also told us that most babies after the Glenn get major headaches afterward due to the blood flow to their head and I'm nervous this will happen with Raygen. The plan is to check in Tuesday morning at 6:15am. Raygen is 1st on the surgery schedule. My wonderful friend Sarah will update the blog as often as she can and I will do my best to keep her updated so check back here for updates. We are going to enjoy a nice family weekend together and get the girls in their Jesse Halloween costumes. Wait till I post a pic, hopefully Sunday, they are the cutest ever. Please pray for Raygen. There are so many uncertainties and so many

questions but I know with so many people praying and sending their love to Raygen she will be just fine. She is so strong, she is my hero, and we love her with are whole hearts.

Erin