Thursday, May 24, 2012

June 15

June 15. It is set in stone now. We will be flying to Philly that morning and have an appointment at CHOP that afternoon. The cath will follow and then a decision will be made about the surgery. It is so hard to describe the mix of emotions Jeremy and I feel right now. Are we excited about relocating to Philadelphia again? Heck no! But, we do love CHOP. I'm excited to see all of our favorite nurses, doctors, and of course, Jensen's dream surgical team :) We are thrilled that interstage is coming to an end. We are also scared to death that for interstage to end, our baby has to go through another heart surgery.

Jensen had a cardio appointment today. Dr. Robinson actually said that Jensen is the fastest growing hypoplast that he's seen! He is very happy with his size and his heart function. But as we get closer to Stage II, his sats are now starting to fall, his pulmonary arteries are small, and he is starting to show some narrowing in his aorta. Dr. Robinson was incredibly reassuring today that Jensen is still doing great, despite the signs of nearing the Glenn. We will be keeping an extra vigilant eye on him to make sure his sats do not fall too much before we make it to CHOP. Otherwise, we might need to put Jensen on oxygen  before we go.

I've been thinking a lot about what having a second surgery entails. I think the second surgery will be easier and harder than the first. This time we know what to expect in terms of the medication, tubes, pumps, and how he will look post-op. We know how the CICU works and we now understand a lot more on rounds. You would think we are prepared in every way for the next surgery.

However, I can't get over the fact that my baby has to go through so much again. We won't be able to hold him for a while. We won't be able to see his sweet smile because of the sedation. I am going to have a very hard time letting him go back down that dreaded white hallway again. I know this surgery will save his life, but I wish he didn't have to fight so hard.

Thankfully, we have one of the most amazing teams in the country taking care of our little man. We have every confidence in them and they truly care about Jensen. We are also blessed to have so many people praying for and thinking about our heart baby. I know that will help us get through the next steps in Jensen's care :)

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