Let's get to the heart of it

This morning we met with the cardiac surgeon, Dr. Haw, to discuss Lily's heart surgery. There was a lot to discuss. I think he was in our room for over half an hour.

Lily's PDA (patent ductus arteriosus) is very patent or open still. Normally, the duct closes shortly after birth. Because Lily's has not closed, she is getting too much blood flow to her lungs, making it harder for her to breathe. So they need to do surgery to close the PDA. She also has a small aorta, which puts her at risk for something called coarctation of the aorta when they close the PDA. Feel free to google. I'm not a cardiac nurse, so this is all brand new for me too! They should be able to tell after they close the PDA if she has the coarctation and then they can correct it right away. Both of these procedures are straight forward according to Dr. Haw, but he also explained the risks and possible complications of both procedures.. which was terrifying. I know they have to prepare us for what could happen, but sometimes Joe and I think it would be better not to know!
In an effort to further decrease blood flow to the lungs and increase blood flow to the rest of her body, they will be banding the pulmonary artery. Kind of just like it sounds, they put bands across the artery to restrict blood flow to the lungs.

Dr. Haw is not planning on closing her VSD at this time. He explained to us the benefits of waiting until Lily is bigger to do that. He did say that it is a large VSD and will need to be closed. So she will have open heart surgery for that when she is maybe 6ish months old. We're not sure yet how that will play out with her esophagus surgery time wise.

As Joe mentioned, there is going to be a conference this afternoon between all her care teams to discuss the surgery. Sounds like it's pretty much decided according to Dr. Haw, but this will be a chance to make sure everyone is on the same page. Lily will have a chest x-ray and another ECHO tomorrow to give them a baseline of how things look before surgery.

We ask for your prayers for Lily. We are both anxious about this surgery, but we know it's what she needs. After the surgery,  she will be on a cardiac specific floor for her recovery.  She might be there for a week and then come back to NICU for the remainder of her time here.  Cora will stay in the NICU until she is ready to go home,  so they will be separated on Friday 😞

We're looking forward to having my parents come this weekend and my mom is staying for 2 weeks.  Yay!

Skin to skin time with Lily 

Cora snuggles 

Cora is maintaining her temperature,  so we can dress her in our baby clothes and she's in a bassinet now.