One Step Forward

Lily had her first heart surgery today. Wow.

Joe and I arrived at the hospital at 6:30am this morning in anticipation that Lily would be going down for surgery shortly after 7am. The nurse gave us some scary news when we arrived. She said that some of her labs this morning, specifically kidney function, came back elevated. Surgery was on hold until the surgeon could come to evaluate her and make a decision. Dr. Haw arrived and assessed her, spoke with the NICU doctor, and ordered a chest x-ray. He believed her kidneys were being affected by poor circulation due to the excess blood flow to the lungs. Therefore, Dr. Haw said we should do the surgery and the kidneys would improve as a result. Phew! So she went to surgery a little later than planned, but she finally made it there!

The actual surgery only took about 30min, but she was in the OR for about 4 1/2 hours. They had to place a central line and an arterial line which took some time. Set up and clean up also took a long time. Dr. Haw came and spoke with us immediatley after the surgery. He said everything went well. He closed the PDA completely with no sign of coarctation, and he put the band on her pulmonary artery. He said he could already see the aorta bulging, which means blood is flowing to the rest of the body, where it should be going. So the surgery seems to have been a sucess! He did say that he will need to close her VSD earlier than we initially thought. Dr. Haw thinks around 2 or 3 months she will need to have the pulmonary band removed and the VSD closed. That will require open heart surgery and bypass.They did an ECHO today once she was in recovery on the cardiac unit, and that showed good improvement compared to the ECHO prior to surgery. Her kidney function was already improved following surgery and the rest of her labs looked pretty good as well. Thank you, Lord.

After she was settled in on the cardiac unit, we got to go see her. I'm struggling to think of the words to describe the experience. She was (and is) intubated and sedated. She has a chest tube and a foley catheter. She has a central line in her neck and an arterial line in her right arm. She has a peripheral IV in her left hand, a large dressing on her chest, and orange skin from solutions they use to clean her skin in the OR. She has 4 or 5 IV pumps with all of the medications and fluids she is receiving. And of course her feeding tube. It was painful to see her this way. But we know that she did well and is doing well in recovery, so we are thankful for that. There is a nurse with her 24/7 right now. There's a good chance she will come off the ventilator tomorrow sometime.

Thank you all so much for praying for Lily. I have not been able to really pray. When I try, my mind goes blank. So thank you for interceding for us. It means everything to me.

Cora had another great day. She gained a little bit of weight, and she is taking more and more milk by mouth instead of through her NG feeding tube. Her labs and vital signs all look great. Still not sure on a discharge date for her, but I'm hopeful that it will be by the end of the week, or early next week.

Please pray for us as Joe returns to work tomorrow. It will be tricky figuring out a new routine/schedule. Please pray for good rest after an exhausting first couple weeks, and for our hearts as well as we process the events and images of today and the last 2 weeks. They are 2 weeks old today! Crazy.

Cora loves to sleep

The nurses from this past weekend made these for the girls :)